Recently diagnosed ..

by Shelly
(UK)

I have recently been diagnosed with crohns disease, after years of being told I had irritable bowel syndrome. I sm on medication (mesalazine/pentasa sachets) but I am struggling to determine which foods are aggrevating my condition, as it's different from day to day! plus I suppose I don't know if I eat something I shouldn't, will it affect me straight away or will it be the day after, etc? The tiredness is the worst thing and my hair is falling out which I'm getting very stressed about. Any advice from anyone would be great. Thanks

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The tiredness NEW
by: Simon Collins

The tiredness is the worst thing and my hair is falling out which I'm getting very stressed about. Any advice from anyone would be great.

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Husband just diagnosed

by Donna
(Texas)

Good Morning. My husband has just been diagnosed with Crohn's. How frustrating this has been. We feel totally lost because we can't seem to get this under control. Anti-inflammatories don't seem to work. Everything he eats does not set well. He is loosing weight fast. We have had all the tests and have seen 2 different doctors to try to get some direction. Any ideas that anyone may have would be greatly appreciated.

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big d relief
by: Anonymous

doc started me on codine pills,slows down the d and helps with the pain.i go to the hosp.monday to help my body get better,have short bowel and i am having trouble catching up.you do what you got to do

Try this
by: Melanie

I was diagnosed with Crohn's in 1999. I am now 52 and have had 3 major flare ups, the last being in Oct of 06. Doc wanted to do a colonectomy, but I was not ready to face life that way. So I tried an unconventional approach. HAd another colonostopy done in December along with over 180 biopsies. The results are as my Doc says, "nothing short of amazing"
I take the following EVERYDAY before each meal....
acidophulus (SP) 2, 3 times per day
Aloe VEra gel caps 1, 3 x day
Fish Oil 1, 3 x day
Flax Seed Oil caps 1, 3 x day

I never eat dairy or foods that are difficult to digest (grapes, corn, etc)

It is working so far. I will be making more changes as I read the Makers Diet (Rubin)

Tell our husband to try this!

Husband just diagnosed
by: Shawna

Donna,

Have they talked to you guys about the different medicine options he can take for Crohns? I am 34 years old and was diagnosed in April after having a bowel resection. I have been sick for about 20 years and many surgeries and procedures later they were finally able to dianose me. I just started taking the Humira shot every 2 weeks and I can tell a HUGE difference in how I feel. There are several different medicines out there for the various degrees of the dieases. I have been where he is at and it is not fun. And I agree....It's VERY frustrating. I wish you two the best of luck.

Hope this helps.

Shawna
(Missouri)

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Beginning to live with a diagnosis

Hi there -i have just been diagnosed with crohns after having all the symptoms and no name. Find it difficult to believe that after having access to the best medical traetment available in India-it has taken so long for my treatment to begin..
I am hopeful and also angry ...guess only time will heal those feelings
Also my mother there - had almost similar issues but almost 50 yrs ago i guess not much was known about IBD.And she died very young 54 I am now 58 Have daughter 35 who has been having almost similar issues of pain , diarhoea, But colonoscopy has said she is not having crohns. I also have had several colonoscopies but it took so many years -almost 15 to arrive at a diagnosis Am worried for my daughter?? Am i right in stressing ...

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Parenting fears & Crohns
by: Sean

I was mis-diagnosed for years and treated for something not even close to Crohns for a year and a half, I understand the anger. With regards to being worried I have 3 sons and constantly had them checked for Crohns after my proper diagnosis 20 years ago. Every time they would complain about some gastro issue I worried. As of now none of them are displaying the symptoms, I believe they just eat poorly...Good luck

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NO SYMPTOMS BUT A DIAGNOSIS....

by Tammy
(Jefferson City, MO USA)

i have been going to the dr for several months now and they have been treating me for anemia...in that process they started checking me...finally at my visit today...they tell me i have Chron's disease. HOWEVER, after reading much info on the net about it...I do not have ANY symptoms except for the fatigue...i do not have bathroom issues nor do i have any stomach pain or anything like that...so...my question is...is it normal that i do not have any symptoms per se??? but yet its still chron's?

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Happy for u... really
by: Anonymous

Just my opiionion but YOU LUCKY, LUCKY GIRL!!! CD is really hard to diagnos. I have had symtoms since I was 25. Constanly in and out of the hospital and not one dr called it right. I was diagnosed on the operating table at 40. I had to learn about it while in the midst of absolute hell. You have a chance to educate yourself, to get 2nd, 3rd opions. Start eating right and keep active, mostly get checked every 4 to 5 months that is if your diagnosis is right. Food with iron, omega-3, all your B vitamines and take multiVits. Get OK with this, be your own advacate and hope you stay good for a long time. I wish I knew what you know.

i also have non typical symptoms
by: Anonymous

I was recently diagnosed with Chrons also. I do get occasional cramping, but my most typically symptom is bleeding and pus. Also white and red balls in my stool. Does anyone else get these? Does it mean I am not in remission? I have been bleeding most days for over 5 months.

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just be diagnosed does it mean i will get colon cancer

by jen
(england)

really worried just been diagnosed with crohns colitus does it mean it will go on to cancer i cant sleep or do anything

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Confused. Different diagnosis suggestions. Help?!

by anonymous
(-)

Bright red blood in loose stools (the stools can occasionally be normal yet still with blood), nausea, constantly tired (sometimes sleep up until 17 hours straight), stomach spasms/pain, often dehydrated, night sweats, loss of appetite and the smell or sight of food makes me feel off, found lymph nodes after having appendix out and now they're testing for chrohn's disease. Before all these, I'd often vomit blood but it's calmed down now yet my other symptoms have worsened. I've been tested for gall stones, kidney stones, ovaries (which follicles were found) and appendicitis in which I had my appendix removed. I'm scared and confused. I've been told by some that cancer of some sort (lymphoma or coroctonal cancer whatever it's called is a possibility). These symptoms have been reoccuring over the past 4 months and I've been hospitalized at least 3-4 times within those 4 months and had several tests done including ultrasounds, urine tests, ct scans and blood tests that continue to come back positive apart from the lymph nodes. I'm meant to do a stool sample but have been struggling to go for number two's in the time I've been given to collect the sample... I've hardly been for a number two but needed a number one more frequently than ever before.

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sorry to hear...hang in there.
by: radhdmom

I started with my symptoms when I was about 10 or 11. I am now 38...still symptomatic. The colonoscopy w/biopsy is probably the only sure fire way of being diagnosed. PLUS they can see if there is anything else going on. I was not only diagnosed with Crohns, but also Crohns Colitis. I know this invasive procedure is not fun, I personally think the prep for the exam is the WORST part. If I can make it through it, I am sure you can also. Sorry to hear you aren't feeling well and I hope they can find out what is wrong...

more than one possible diagnosis
by: Vanessa

Hello :)
I am sorry to hear you have to go through all this. Unfortunatly, you will have to wait for the doctors to tell you what is the correct diagnosis because your symptoms can be caused because of the Crohn disease (that is what I have) but other health problem too. So maybe it is that, maybe it is not. I hate having to wait to know what I have so I understand you but there is nothing more you can do.
Have they did the test with the tube in your colon to with the camera? If yes, did they do a biopsy? That is how they found I had the disease. What are your blood test is telling them? Have they found anything?
Good luck!
Vanessa

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Just diagnosed 2 weeks ago...

by Renee
(Illinois)

Hello everyone. My name is Renee and I'm 23. I'm very new to this stuff as I have just been diagnosed. They caught it pretty early, I had been having symptoms for about 3 and a half weeks. In this time I went to an "Immediate Care" clinic thinking that maybe I had food poisoning. Sure enough, the doctor thinks the same thing and put me on antibiotics thinking that I had E.Coli poisoning. I should mention that I HATE going to the doctor, almost phobic. Plus, I have a 6 month old daughter, and it's hard to find someone to watch her while I go to the doctor since my husband works during the day and all of our family members also hold daily jobs. So needless to say, I put it off, and put it off, but eventually had to go to the ER. Sure enough, my white blood cell count was super high so they admitted me. After finding out that I have Crohn's on both sides of my family, they immediately started running tests to see if that was the issue. After a colonoscopy confirmed their suspiscions, I was put on Pentasa. Is anyone else taking this? Anyways, my biggest concern is that I keep losing weight. I was only 112 to start with, and am down to about 90. I feel crappy pretty much everyday as I have no energy from not being able to keep food in. I've tried drinking Ensure for extra fat and calories, but that is worse than food for me. Does anyone have any advice on something that I can try to put weight back on. I'm still in the middle of a flare up, but don't go see a GI doctor for another week and a half. I'm really desperate for answers, I've read books and stuff, but most of that is written by people who have never experienced the disease first hand. So if anyone has any advice I would love to hear it! Thanks for listening to my long rant.

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weight loss and other annoyances
by: tod

I have had Crohn's for 38 years and have probably been subjected to every pain, angst, and, of course, medication on the market. i have been treated with everything from Azulfidine(in the early days)Prednison(omg) and most recently Remicade and 6mp(which has been my Godsend).
Weight loss, unfortunately, is part and parcel of crohn's and all Colitis, i am afraid. i feel that once you get the disease under control, so will follow the weight.
That is a good thing because as your weight increases, it gives you(and properly so)hope and confidence that the treatment and path you are on is the right one. If you wuld like to talk to me further please feel free to email me any time at tbone5858@aol.com.
I only wish that when I started having my bouts at age 12 that i would have had a forum like this to vent.
It is good to know you are not alone!

how to put weight back on
by: Anonymous

When my weight dropped after many operations my doctor had a nutritionist come to my house and she had a lot of great advise on how to put weight back on. I went from 135 to 97. Given that I was on a no or low fiber diet I found it difficult to find foods that I liked. She pushed the Ensure drink which like you I could not stand. With crohns a lot of people say that any raw veggie or fruit may not sit well. I started make loaded baked potato almost every night and tried to find new ways to cook chicken and fish. One thing that might help is if you talk to a nutritionist. I told her things I liked to eat and thing I hated and she put together a list of good foods that would help me put the weight back on.

You might also want to follow up with your GI about the weight lose. Before I got really sick I dropped a lot of weight also simply because it hurt too much to eat and I never was hungry because of it. Before you put yourself in another run of painful days, I would talk to him. And remember be 100% honest and upfront because he/she cannot help you unless they know everything you are going through. Feel free to email me if I can help you in any other way....paulah28@yahoo.com

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crohns diagnosis

my 10 year old has just been diagnosed with crohns i just want to no if he will end up having to have a bag on really worried

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Newly Diagnosed and Confused

by Carla
(Canada)


Hi everyone,

I was just diagnosed with Mild Chrons Disease 3 months ago. Last summer I had diarrhea for 2 whole months and my doctor tried to tell me it was from stress. I finally got a colonoscopy, even though I didn't want to because the diarrhea had gone away and I was feeling fine...thats when I found out I had Chrons. My doctor has prescribed me Pentasa. Ever since I have started taking this medication I feel like everything has gotten worst, NOT better. I have diarrhea everyday, and its not even normal diarrhea- I feel constipated but when I finally get it out its just little bits of nothing. I've started experiencing tingling and numbness in my feet after a bowel movement and even randomly during the day. I am so tired and exhausted I dont even want to get out of bed and I just keep losing weight. Everything I eat isnt being absorbed and I know that I have malnutrition. I hardly get bad stomach cramps so Its hard to tell what I can eat and what I cant. I've been eating a pretty healthy lifestyle my entire life and this disease just came right out of the blue....everyday seems like a flare-up especially since I started Pentasa. It just doesnt make sense to me because I thought Pentasa is suppose to help?? Not make things worst?? Should I be on a different medication?? Can I have children in the future? Well things eventually get better??

Not only has this disease affected me physical but its also has me mentally. I feel very down on myself and wonder why I had to get this. Not to mention I feel very self conscious about the way I look due to me losing weight. Every day seems like a struggle lately. It makes me more mad because before I started my meds I could go to the bathroom normally!! Im just SOOO confused and sad. :(

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My 10 year-old son was just diagnosed

by Josie
(Belleview,FL)

I have so many questions. Thickening of the lower bowel and intestinal wall....how common is that in a 10 year old? What meds do they use to treat? I have Lupus so steroids and Imuran are common when I read about them.

If you can help I am littlejobeth AT aol(dot)com. I have so many questions...

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crohns just diagnosed and having hard time understanding disease

I was diagnosed w/crohns a few months back I am very fortunate I do not have the diarea and vomiting just abdominal pain lots of it and fatigue. This took a long time to diagnose but was confirmed my small intestines are all ulcerated. I am trying to figure out what to eat and not to eat and drink ect. and would appreciate any help from anyone who is there. sherry

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family
by: Anonymous

Ours might be genetic and these are my brother's persaonal findings. Avoid dairy. Eat as healthy as possible, no red meat. brown rices, oats, barely are usually good to eat with lots of water. Be as dark green and as raw as veggies can be. Go with bland foods, whole foods, organic foods. No soy, careful with nuts as far as how many and what kinds. Beans will probably become your new meat, but eat them at home, not at taco bell. The foods that you do well with, something like beans, make sure you go slow and try as many different kinds as you can, they each have different benefits. Avoid sugar foods and other junk foods. I don't know about fruits, sorry.

Hi
by: Chad Tickner

Yes Crohn's takes a while to get used to. Food is a big factor in what will trigger flare ups. There are also foods you need to stay away from completely, such as foods that cannot be digested i.e. corn and nuts. These types of food can get stuck in an ulcer and cause a lot of issues. Other then that just trial and error away and figure out what works for you. I know for MOST people with Crohn's alcohol and smoking are a bad idea.

Eating with Chrons
by: Dell

Eating with Chrons is always a trial and error method for each of us. What works for one may not work for another - just like normal people who have issues with heartburn - one food may cause it for one and not another. The same is true with Chrons, you just have to see what works for you. The best thing is to go very slowly and keep a food journal. That way you can track what works and what hurts. Don't try alot of different things on the same day because then you can't tell what upset you. It is a slow process but one you will benefit from if you take the time. Good luck and God bless!

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Just diagnosed at 18

Hey guys. I've been diagnosed with Crohn's 2 days ago after feeling horrible for a couple of months. I had a few questions.
1.When it "flares up", how long does that usually last?
2.Will I constantly be on medications? or just during flare ups?
3.What are some of your guys's symptoms, either from the disease or certain meds, because I haven't been able to find a list of the most common symptoms.
Thanks

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Just diagnosed at 18
by: Kim

When I was diagnosed, I had had symptoms for over a year. My symptoms were diarrhea, pain in my side(still not sure if it was related), abdominal pain, and fatigue. I was started on Pentasa when I was first diagnosed, but that made me feel worse then taking no medicine did. Then I was switched to Lialda, which worked for about 6 months before it also, started causing problems(severe abdominal cramping). Now I am on Humira, which so far has not caused me any problems except for the occassional rash at the injection site. You have to keep in mind what you felt like before the medicine, and if the medicine makes you feel worse, you should definitely tell your doctor. According to my doctor, once diagnosed you should always be on some sort of medicine to keep things in check. Flare ups for me can last anywhere from 2 days to 2 weeks, but they are much fewer and far between with the medicine. Hope this helps you, God bless, and good luck.

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Newly diagnosed and worried

Hi I am a 47 year old female newly diagnosed with crohn's disease by capsule endoscopy.
I have multiple apthous ulcers in the jejunum (small intestine). My question is, is this the beginning of crohn's disease? How bad will it get? Do others experience incredibly painful spasms? Is this incredible fatigue I am feeling part of the disease?
I am scared about what the future holds and would appreciate any advice.
Liz

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I understand
by: Charlene

I'm 42 and was diagnosed February of this year with Crohn's/Colitis, it seems I have always had problems through the years but it was never pin pointed as anything. I got sick like I had never been and did a three week stay in the hospital part of it being diagnosed (felt like I was on a bad episode of House) and the rest trying to get it under control, since then I have lost my job and have been struggling daily, depression, nausa, gaining weight, yup. But like you I read and reach out to others, which is nice, some who have lived with this disease for years and those who have recently been diagnosed, it has been my salvation. Not much help but just to let you know your not alone.

I'm scared too
by: Rachel

I have only been dealing with this for about a year and a half (although I felt sick several years before that), so I am not sure what to tell you about what to expect. I think my doctor is really good and due to the medication I am taking right now (Asocol and Mercaptopurine, a chemotherapy pill) I feel better than I have for years.
But I am scared that feeling better isn't going to last. I am also scared that my drugs will stop working and I will have to have more evasive treatment.
Right now I am just trying to take care of myself by exercising, dealing with my stress and not doing anything to hurt my body--like drinking alcohol. I guess that is all I can do...and take advantage of the fact that I feel good and accomplish as much as I can while I can.

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diagnosed at 18 years old

by emily hovarter
(oak creek wisconsin)

hi my name is emily and i'm 18 years old. i was diagnosed with crohns disease october 2008. it's been the longest journey i've ever taken. i was sick for a long time before i went to the doctor but finally went. it took a long time and two different doctors to figure out what was wrong with me.
i have had two colonoscopies and many many trips to the ER. i have never felt so sick in my whole life. i've never really been depressed until now. i always feel bad becuase my mom has to take care of me, sometimes i have to call into work, and sometimes i just feel like laying in bed and doing nothing. everything about me feels different. i'm always in a little bit of pain and somewhat uncomfortable.
i am currently doing remicade treatments every 6 weeks. i tried to make it 8 weeks but soon discovered my body wasn't having it. it's a couple hour iv that you get in the hospital. so far its been working really good for me. my stomach isn't as painful as it was before and i've had fewer trips to the er with my mom. of course i'm still in pain but at this point i'm starting to think i will always be.
i can't give much advice because i'm still learning myself. i feel guilty for wanting to stay home and lay in bed, not wanting to clean, and not doing something useful. i've really been slacking around the house and helping my mom. she has done so much for me she's my rock and the reason why i'm still here! i love you mom!
i hope every who has crohns or any other disease finds a cure someday. everyone hang in there! life will get better.

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Support
by: Anonymous

Hi Emily,

I am the mother of a 17 year old with crohns. Don't feel guilty. Eat well and try to exercise a bit. It truly helps. If u want to chat email me

Amy101760@aol.com

Maybe u can talk with my daughter. She had surgery already in January 2010 and is on humira injections. Ugh

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Age 49 and just diagnosed!

by Leo
(Sydney)

I just had a routine colonoscopy and have been told I have Terminal Ileitis? I'm otherwise healthy except for a brief episode of bleeding recently. What can I expect? What do I do next?

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My 9yr old daughter recently diagnosed with crohns

by Nat
(Australia)

Hi, my 9yr old daughter was dignoised with chrons disease just before christmas. for the last two years she been complaining of stomach pain, vomiting, diarehea and constipation etc i took her to doctor after doctor they just told me she was a fussy eater etc thats why the pain and weight loss she will grow out of it. frustration hit boiling point when she lost so much weight her bones now stick out of everywhere and looked anerexic, she hadnt grown in over a year and was constantly crying in pain, emergency rooms told me just to keep feeding her nurphen, finaly I found a doctor to take me serious besides thinking over anxious mum. he did a lot of bloods and was concerned at her being anemic and raised esr, we then went on to a specialist who mentioned the suspicion of chrons disease. i was concerned as her blood test were showing up what mine always had, (anemia and raised esr) i two have had pain and diarehea from time to time, but just put it down to stress or upset tummy, I had had a doctor in my 20s who was chasing me for chrons disease, but the few test he did were inconclusive he wanted to do more but i was frustrated at that point as felt like a pin cusion and had two young babies to look after,and my symptoms seem to settle down after the birth of my son. so i didnt finish the testing. The guilt now is overwhelming as i may of been able to help my daughter sooner by knowing the results. the specialist put my daughter in for a colonospy which showed with out a doubt chrons and a quiet a nasty flare up of it. They now have her on a liquid diet of modulen for the next 10wks possiably longer, and just started taking imune supressents, she has to go back for another colonoscopy in 10wks to see how its working, Im feeling very overwhelmed at this point and trying to work out whats a head for my baby. finding suport groups and conistant information is proving tricker then i thought, if anyone has good web site to share I would be very greatful. my daughter doc has recomended that I go back and finish testing after we get her under control.

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Symptoms and Diagnosis

by Janis
(Canada)

My husband turned 65 last December and up to that point, he was the picture of health. He has had severe stomach pain on an ongoing daily basis since then, diarrhea, vomiting, loss of appetite, weight loss (20 pounds and he is not a large man), loud growling noises in his abdomen (usually after eating but can be anytime), lethargy and depression. He has NOT had any blood in his stools. Blood tests show nothing abnormal. An ultra-sound showed nothing abnormal. X-rays showed nothing abnormal. He has four relatives with Crohn's, one developed it when she was 65, and three (deceased) relatives who reported similar symptoms. He has had at least 3 flare-ups since December with severe vomiting and diarrhea and has gone to emergency each time. Does this sound like Crohn's and how do we get our doctor to take this seriously and make a referral? Who do we need to see to get a diagnosis so we know what we are dealing with? We have been married for 46 years and this is the first major illness my husband has had.

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It took a long time for me to be diagnoised
by: Bobbie

I am 64 years old and in the last 3 to 4 years I have been in the hospital 13 times for the same condition. I had severe abdominal pain, vomiting, and constipation. The last time I was in there my gastroenterologist was on vacation and the doctor on call for gastro came to see me. Many test were done and after a week stay, I went to see him at his office. He did a blood test that was sent to San Diago, Calf. and said that is the only place for this blood test to be run. The test came back positive for chron's disease. Then he look at my blood test and I also am anemic and my ammune system is low. If it wasn't for seeing this new doctor, I would still be going to the hospital in severe pain. My prayers are with you and I pray that your doctor will try this blood test that is only done in Calf. Call diffrent doctors and ask them if they treat chron's disease. God bless you both.

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Misdiagnoses leading up to Crohn's disease

by Kel
(Orem, UT)

I have suffered through the same kinds of symptoms since I was about 5, and as a child, they thought it was nothing but a diet that obviously didn't have enough fiber. When I was 18, I was diagnosed with IBS, and a few years later the medications I was taking failed. Then I developed a lump in my throat that kept me from swallowing, especially after eating maybe 5 bites of food at most for about 3 weeks, at which time I underwent a barium swallow and was diagnosed with GERD. The medication works and it doesn't, and then I developed small bouts of what looks like psoriasis that won't go away even with bag balm among other things and arthritis that is currently hitting my hands and arms first. Could GERD be another misdiagnosis, and could all of these things be caused by Crohn's disease?

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FRUSTRATED - My Husband Just Diagnosed June2010

by Denise Kolp
(New Jersey)

I am frustrated because I am having a hard time learning about this disease. My husband is 6'1" and used to weight 160lbs - he now weighs 150lbs. He is taking Apriso, which has alleviated all abdominal pain what so ever. He seems depressed, has no appetite, and is exhusted. He works outside, does the heat effect the Crohn's? Does fish oils help? Is there a reccommended diet? Specific foods most definately to stay away from??
Anyone out there on Apriso? Are there side effects?? Is there support groups? I need some lessons to educate my husband - I am sad that he is so ill!! Any Help would be appreciated!!
Thank you,

Denise
dz72568 @ comcast.net

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Newly diagnosed - Sister diagnosed over 20 years ago

by Melissa
(Indianapolis, IN)

I am a 30 year old woman and I was just diagnosed last week with Crohns diease. My sister (35 yrs old) had been diagnosed for over 20 years. I feel blessed in the fact that my case is mild. My sister has been to the Crohn's Clinic twice and has been told that she has one of the worse cases ever recorded.

My family was in shock but I think we have gotten over the shock and we are ready to face this head-on. It is not easy and I don't feel well at all but I have not got to start my meds either. I am a difficult case because I also take Blood-Thinners. They have to make sure that the two are not going to have negative interactions.

I am glad there is a place that I can come on here and let my feeling and fears out. It is not always easy to do at home.

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chrohns
by: melissa

hi i also have mild chrohns disease. for me i find reading on the chrohns foundation has lots of info and about certain medications info you can also call them and ask guestions. good luck and i hope you feel better soon

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I was diagnosed a year ago.

by Julie
(canada)

I am a 41 year old single mom.wher do I start...iam so confused.Iam in between jobs so money is scarce.the last three jobs I have had I lost due to being sick alot and appointment's tests ect..I have stopped my meds because it made me feel worse.I catch everything that goes around.when iam sick iam like death sick.when my cramps start I can;t work it gets so bad that Iget nausea I vomit strong yellow stuff while trying to have a bowel movement which can take up to 45 min or longer and I still feel like I did not emty,I get feverish and so tired,I sleep till it passes.Is that a flare up.when do I go to the hospital?Iam so used to pain I wait it out.I belive I have had corhns for a few years,I thought it was all in my head.but now i know why i have lost jobs.I have good days and lots of bad days but my doctor says no you r not having a flareup.my family doctor just sends me to my GI to answer my questions and he gets mad because he says he is just there to fix me.and diet,I cant have dairy most fruits and veggies,eating an apple sent me staight to a gi doctor.so what can I eat???I also have colitis.when iam not on the tolite all the time,I get constipated so bad I look pregnant.there is no inbetween.and stress well Iam on pills for depression.but there is no help because Iam not disabled enough. I burp like a man pee alot.I can't even bend down without feeling pain.I am just so frusterated.any Iam new at this so sorry for the book.any advise please.....

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I was diagnosed a year ago
by: Anonymous

Hello :)
I am not a GI but yes, I would call what you have a flare up. Can you go to another GI and get a second opinion. It is very important to stay on your medication and if because of them you do not feel good, ask you GI to change them but I do not think just stopping them is a good idea. I am sure when they will find the good treatment, you will find better. To help you, you can eat white bread (forget about the whole wheat) White pasta, Drink plenty and plenty of water, When you have diarhoea drink Powerade or Gatorate, Eat carrots, potatos, forget about fried foods.
I imagine you are going through horrible moments of your life right now but I am sure it will get better with the correct treatment.
Good luck :)

Where in canada r u?
by: Michelle

It sounds to me like you need to get some better doctor's that should be your first step.

Keep a food diary that will help you eliminate all foods that irritate you?

Have you been tested for Celiac disease often misdiagnosed as crohn's.

Here is the website for the CCFC, www.ccfc.ca/English/index.html they will have lots of information to help you. You can always email me if you need support or someone to talk to at michelle-durham@hotmail.com.

Good Luck and Good Health

Michelle

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Crohns diagnosed 5 months after a hysterectomy

by Heidi
(MN)

Story: Has anyone else had surgeries, pelvic or abdominal, only to later be diagnosed with Crohn's? That was my fate. I had a hyst and my right ovary removed in October of 2007 at age 41 for abdominal pain and started bleeding rectally by March of 2008. A colonoscopy and series of biopsies showed Crohns. It makes me wonder which came first, the chicken or the egg. My surgery was complicated by a nicked vein and went three hours long due to hemorrhage. I will always wonder if my bowel was traumatized during surgery such that my immune system responded in this way. That or, perhaps it has been Crohns disease causing the abdominal and pelvic pain all along. To be honest, I will likely never know. The good news in this is that I am in remission. My health is not great, though......far too much to go into here. I have a great internal medicine doctor, a not so great GI doctor, and am relatively tired of being a patient as I am a nurse. Nurses are lousy patients.

Humira question: Good to find this website. I am restarting Humira. Took a break due to finances and denial......please tell me a story if you have stopped and restarted this medicine. I had an anaphylactic reaction when I did that with Remicade so I am so very scared. Thanks. H

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just diagnosed :(

me and my rock

me and my rock

hi i have been poorly for 2 years now and only just been told i have chrons , at least i have an answer now i guess ?? but i have to start on budesonide steriods ???i have lost 3 stone since been poorly im soooo scared im gonna get bloated i dont want anything more to get me down has anyone any advice .thank u so very much..jo xxxxxx

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Juanid Jamshid NEW
by: Anonymous

If you are diagnosed with that crohn's disease then don't waste your time anymore and start its treatment properly. Our australia essay writing service are now getting much better response from world famous universities.

Remicade
by: Tod

I have had CD for the better(or worse) part of 38 years. I have probably been through every treatment possible from homeopathic to steroid, and everything in between.
Recently( 2 years ago) i started remicade treatment. it has saved my life. i only wish it was available even 10 years ago!

Budesonide
by: Chris

Hi Jo I was on Budesonide for 2years and did not put any weight on. Budesonide is only short term steroid you will probebly be tried on others whilst still on Budesonide the side effects from Budesonide are minimal so have no fears. Hope all goes well for you keep your chin up.

Chris

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Just diagnosed

by Heather
(Appleton, WI)

Do not know where to start, just found out I had Crohns Disease. I don't see my doctor til the 16th to get on medication. Does anyone have suggestions of what works the best? And, I suffer with fistula's because of this, they hurt so bad, what works for them?

H

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Son is 8yrs. newly diagnosed

My son is 8 years old and was diagnosed in June (08) with Crohn's. He has been symptomatic for only one year. (last Oct.) I have a few questions, and am really thankful that there is "somewhere" to go to ask them.

Jack has been on sulfasalazine for about 3 months now...and everything has been okay. However, last week he broke out in hives from head to toe. After seeing an ER Dr. (this was on a weekend, and his GI Dr. is 90 miles away)He (ER DR) thought it was a reaction to the sulfasalizine. So I didn't give it to him until we could know for sure. (one week later he is having a MAJOR flare, and I immediately started giving it to him again( we are scheduled this coming week to see GI dr.) He is not having any allergic reaction to it, but this particular flare is so awful. He began to have severe cramping/diarrhea Wed, night, and Thursday morning I began giving him the sulfasalizine. I have given him 500mg every 8 hours, but it doesn't seem to be helping much. (???) My questions are these...

1. Is it normal during a flare to have more pain and diarrhea at night (during 11:00 - 6:00) than in the daytime?

2.Can a rash/hives be a symptom of Crohn's? (My son has never had a rash before)

I would so appreciate any feedback...

Sorry this was so long...

Thanks,
Erin

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just diagnosed

After many tests(Laproscopic surgery, colonoscopy and Ct scans that came back negative, only showing inflamation) I was diagnosed on my symptoms and the inflamation as having mild colitis & crohn's.
My symptoms: weight loss, blood in my stools, fevers, diahrea, stomach pain( comes in waves really bad). The doctors want me to start a diet to see if we can calm down my flare up.
Has anyone else been diagnosed like this?

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i Know how you feel
by: Suzzanne2138@yahoo.ie

What a hard time your having. My heart goes out 2 you, It can be a long road of tests, flare ups, agony and more agony.. But there is light at the end of the tunnel, just like you i was diagnosed with both UC And CD. Its also really hard when having 2 be in hosp when having a flare up, but it is the best place when getting the proper treatment. Hang in there. Email me if you have further questions, i know what your going through. Also its Suzanne ere.. Im 21, have been suffering since i was 8...

dont give up...
by: es c from ca

my daughter was diagnosed 3 yrs ago and had a battery of tests (sigmoidoscopy, barium xray, lactose test)..the result was 'it's proabalbe that she has crohns....they treated her agressively (prednisone and pentasa)..3 months later, her flare up ceased and she went into remission.

if you have not gotten better thru dietary changes, i highly recommend you to be persistent - don't give up and have as many questions prepared as possible.

good luck,
es c fr ca

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Recently diagnosed, not getting any better (aged 15)

by Brandon
(Hillingdon)

On the 10th august i got diagnosed with crohnes bowel desease. it didnt really sink in my mind until about a week after. i got put on a ibd modulen diet for 6 weeks, where i wasnt aloud to eat or drink anything and i had to drink protien shakes instead. after alot of trips to the hospital for being sick and ill, i got told that the modulen diet did not work. i then got put on prednisolone, just a short course, 10weeksm but on a high dosage, after about a week.. i started to feel the side effects. i felt anxious, weak, depressed, and not the same person. i keep crying, and just feeling hopeless alot of the time. i find it difficult to keep it all in sometimes, as i try to stay strong, as i feel it effects my mum when im upset. although all of my freinds understand what im going though, i was going out with a girl for 6 months, and she ended it. i feel this is because i might have been a different person, and that she doesnt understand what im going through, this is very frustrating. i wake up sad before school, and come home sad. past 2 weeks, ive been in the worst pain ever, and feeling depressed. last friday i went to the hospital, and they have said it is unusual as the steriods or the modulen diet has helped my desease. therefore im rather having surgery, or something else.
i am really nervous, and dont know how to feel better in myself anymore.
B.williams Aged 15

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New here

by Heather
(Massachusetts)

Just wanted to say hi - rather than troll around.

Dx with CD for 15 years. Active, active, active for the last 6 months. Starting testing to move to a stronger medication.

Sooo tired.all.the.time.

Wellness wishes for all.

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New here NEW
by: Annette Young

Hello Heather,

Thanks are writing in. There is certainly a lot of information on here to wade through, but you may find a lot of the information useful when you get a spare five minutes. The great thing about this forum is that everyone is very friendly and responsive.

I note you mention feeling very tired, I can really sympathize. Feeling such intense fatigue that can seemingly continue for weeks and months is really hard to cope with and it can seem never-ending. I have spoken to a lot of people with Crohn's disease who endure varying degrees of fatigue and through their experiences as well as research, I thought I would share the following with you:

Vitamin D is currently being researched with the view that it may be beneficial to help cope with fatigue, so it might be worth a try.

I would also recommend trying to enhance your sleep pattern and so that you sleep deeply in the hopes it might help your body to heal. It may sound quite new age, but I like a few lavender drops my pillow and find this quite soothing and restorative.

Other things to try is a visualisation technique/meditation and this can really help to relax your body. It isn't to take any pain away of course but it can help to alleviate stress and any day to day pressures and to promote a good night sleep too. I find this works for me.

You can also use aloe vera juice to help soften stools and many people with crohn's have said it really helps, and it is also supposed to start healing the intestines too. Fennel tea is also popular.
I would only try one thing at a time though as then you can see if any of it helps.

I attach a link for you with some natural remedies and I hope this helps.

http://herbs.lovetoknow.com/Natural_Remedies_for_Crohn's_Disease

Best wishes,

Annette

tired
by: Anonymous

I also am soooo tired all the time. I know it is a combination of the disease and the medications. I have had Crohn's for 26 years and am trying to work and live with the disease. Best wishes to you.

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New at this Crohns thing

by tracy
(owingsville,Ky)

Any help would be appreciated. I feel rather lost. Aug, 10th I thought I had the flu, I just had the most awful diarrhea and let it go for about 2 weeks and finally went to the Dr. who gave me lomotil. While this did help for awhile. I never really got over it and it, in the following week after got pretty bad, the diarrhea didn't really hurt, but my hemorrhoids were unbelievable and felt like I had a baseball at the site of my anus( those of you with hemorrhoids know the feeling), the hemorrhoids were finally going away and the diarrhea slowed down a little and next thing I knew I woke up doubled over from upper abd. pain at 3 am. I went and laid on the couch by my husband and tried to ride it out, fell back asleep and at 6 am, woke him to take me to the E.R. Got there, told them I thought it was gallbladder and my back felt like a kidney stone as well(I occ. get these)morphine every 30 min. seemed to do the trick, they admitted me did cat scan, only thing it showed was some unusual looping of the uppper bowel (not sure if this was from my gastric bypass 2 yrs. ago?) Anyways, gallbladder ultrsound looked o.k., upper G.I looked o.k. This was Sept. 1st. I am 5'7-1/2" and was 130 and dropped this last month to 118# as everytime I ate ANYTHING this last month, I felt sick- I could only eat a few bites and I'd feel sick. I never vomited, but never have been one to. I am drinking ensure several times a day.Oct. 4th I had an endoscopy and colonoscopy done and it showed esophagitis and gastritis. I think when he did this I was already on the mend. They have me on zeggarid for the erosions(which don't bother me at all. a few days ago I was able to start eating without getting sick and it feels like whatever this episode is, seems to be passing. I am not sure if Crohns does this? When I looked up Crohns I noticed all different things I have in common that I didn't know had anything to do with Crohns. I have the inflamed eyes, , get freq. sores in my mouth(I thought everyone did) and just reading peoples things about the anal fissures, hemmeroids, etc. made me realize, yep that must be it. I have never seen any blood in my stool- when they did a culture of my stool during the colonoscopy, they said it had WBC's in it but did not see infection. I'm sure there is more I could say-but don't want to make a book out of this. Anyone willing to talk to me and help me understand this a little better, sure would be appreciated. I want to make th most out of my situation and do what I need to do to be symptom free. Thanks for the time. Tracy
lennyandtracy@windstream.net

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New at this Crohn's thing NEW
by: Annette Young

Hey there,

I hope by the time you read this you will be feeling better and a full diagnosis made. If it is Crohn's and it certainly sounds indicative of it then there are important things you need to do.

First of all, seek medical assistance and follow the guidance for medication. Monitor your progress and any symptoms. If you feel worse, go back to the doctor and press for additional help.

Do keep a food journal. There will be times when you don't feel like eating much and the best diet you can have is a simple one. Do not eat foods that are hard to digest but eat healthily. Your digestive system may struggle so eat soups, casseroles, pureed food and avoid spicy food. Do not drink alcohol or smoke. Drink more water. If you are not eating a healthy enough diet or if you find blood in the stools, you may need extra iron by way of supplement. Try vitamin D too as this can help Crohn's.

Try to eliminate stress. It's not easy but if you can learn relaxation techniques and meditation, you can improve the connection with your body, use breathing techniques to help relax and be able to eliminate anxieties too. Stress is a huge trigger.

It's important to learn as much as you can about the condition and to be able to accept it, sometimes learning to live with it, provides an easier route into the disease and causes less aggressive bouts of pain.

I hope this helps.

Annette

could be crohns
by: Anonymous

Tracy, three tests have to be done to diagnose crohns disease. And could be misdiagnosed for years. So do your own research. Believe me, doctors will screw this one up.. bigtime. But once it is diagnoses as crohns, take remicade or humera. Humera might make it worse but only to help show other problems. Then surgery is probably needed. Don't worry. Surgery is gonna happen but will fix you for years. No small time doctors on this one. Go to the best gastroenterologist group within 100 miles. At least initially, until you know what is going on. Then stop asking people on-line for advise with this. This is real and you should not get poor advise to sway you. Go on crohns websites only. Good Luck

tryin to help
by: hugh

hi all ive had chrons they think sice the early 70s i dont type to good i guesse i was a guinepig for years lol thats cool if it helps others i have tried all kinds of treantment and diets. if u call me or email your number i would be glad to tell u what i do to try to have a life my name is hugh im at hufnn@aol.com or 804 785 3461 if u send a # i have unlimeted long distance i would love to try and help and tell u what works for me

tryin to help
by: hugh

hi all ive had chrons they think sice the early 70s i dont type to good i guesse i was a guinepig for years lol thats cool if it helps others i have tried all kinds of treantment and diets. if u call me or email your number i would be glad to tell u what i do to try to have a life my name is hugh im at hufnn@aol.com or 804 785 3461 if u send a # i have unlimeted long distance i would love to try and help and tell u what works for me

Crohns for over 20 years
by: Mary K.

Hi Tracy: I have had Crohns (they think) since the 80's, but was not diagnosed with Crohns until 1997. I had iritis all through the 80's, and one doctor said that "usually when you have reoccurring iritis, there is something wrong in your gut." They did a upper gi, etc, and it showed hiatel hernia, but not much else. Years later, in the 90's, I started having terrible pain in my back, spasms that ran up my back until I couldn't talk, and just pain. pain in my hands, pain in my feet. It seemed that as far as my bowels went...I either couldn't go or went all the time. I was finally sent to a neurologist to see why my back hurt so bad...he thought I had colon cancer because it presents like that. They first did a small bowel series. This showed the crohns at the terminal iliem site. Later, a colonoscopy biopsy confirmed crohns. I was started on crohns medications: asacol, pentasa..each one put me in the hospital with allergic reactions. Then we went to the big guns, immunosuppresants: methotrexate, imuran, and then humira. I was on humira for three years, and my crohns got worse. During all of this, I was on prednisone. Got steroid induced diabetes. Could not get off of the prednisone because it was the only thing that would stop the pain. I had a colonoscopy in July of last year, and ended up in the hospital. The doctors told me that I would have to have surgery now because they feared that I would be in an emergency situation soon due to perferations. The surgery was done in Cleveland in August of last year. The secum, terminal ilium, 1.5 feet of the colon and 1.5 feet of the small intestine were removed. They had prepared me for a colostomy because they thought they would have to take out all of my colon, but the disease in my colon was not crohns. Divertucolosis or colitis. Recovery was hard, but now.........I am wonderful. Am no longer diabetic, take no medication for crohns. I feel so good...totally pain free. No more back pain. I still have the bathroom issues...go too much...can't go, but that doesn't bother me, and it is directed a lot by what I eat. To me....medications do not help crohns. Surgery does. I know you have the risk that crohns will come back, and more surgery will need to occur, but my surgeon in Cleveland said that is not always the case. I was in miserary for 13 years, and now I feel great. My story.

Crohns?
by: Connie S

Hi Tracy,
I noticed you are from Owingsville, KY. I am from Richmond. Its nice to see someone from the same area. Perhaps we can exchange phone numbers and talk. I will send you an email as well. I would truly enjoy having someone to discuss my disease with. I was just diagnosed with crohns and UC in November 2007. I have learned a lot in a short period of time - but still dont know nearly enough. Its difficult getting answers from doctors.

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New chrons?

Hi i am a 33 year old male that just got diganosed with chrons, have many ? need to chat with other chrons people. my email is bruni31 -at- hotmail.com thank you

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New Crohn's NEW
by: Annette Young

Hi there,

Sorry to hear that you have Crohn's disease. I know how scary it can be when first diagnosed. You can feel very alone.

The truth is there are many more people out there than you might think who are newly diagnosed, are feeling alone and afraid of the disease or who have had the disease for years. The sad thing is that people do not talk about Crohn's and that is because the very nature of the disease makes people feel embarrassed or isolated.

I hope that you are getting medical attention and are being treated. The first months can be difficult until they find medication that suits you but do not leave any change to symptoms or if you feel that the condition gets worse. It's too important.

Do keep an eye on your diet. It's important that you find out the foods that may affect the disease and make it worse. I attach a link that gives you a lot of information on this.

http://www.health.com/health/gallery/0,,20560523,00.html

Here are foods that you should add into your diet:

http://www.healthline.com/health-slideshow/crohns-disease-power-foods

Try to break the secrecy surrounding Crohn's and do not be afraid to share your feelings and symptoms with family and friends. Discuss with your work colleagues too. If others know what you are going through they will offer additional support.

I hope this helps and that you get much support from others.

Good luck,

Annette

Feel free to contact me
by: Anonymous

My name is Paula and I have gone through 7 operations and almost a year of hospital visits to get my crohns under control. It has been over a years since I was given a clean bill of health. It was scary, confusing and I had no idea what was happening to me and why. I totally understand thay you have a lot of questions and it is difficult to find a doctor who will speak to you in terms that you understand. My email is paulah28@yahoo.com. Please feel free to contact me about any questions. I would be more than happy to help you in any way I can.

Until then, hang in there and keep your head high.

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Newly Diagnosed with Crohn's disease

by La
(Ireland)

I am 35 years old and have been recently diagnosed with Crohn's disease. However the doctors suggest that I have probably had it for multiple years and no one ever picked up on it. I am going on Friday to be put on medication and for the doctors to help me with any questions I have.
About 6 years ago, I had extreme weight loss, and I was bleeding very badly when I went to the bathroom. I had tests and they never found anything, so I just let it pass. But within the last 4 years, I've had extreme weight gain, I am now over-weight and the bleeding has returned. I'm often constipated, but when I do go to the bathroom, I go very frequently. The doctors did a barium x-ray last friday and instead of the normal few hours that it takes for the barium to pass through your system, it passed within 20 minutes. I have been told I have a large fistula, and I am very inflamed.
Everything I have read about Crohn's speaks of weight loss, but why am I experiencing weight gain. I've gained so much weight I'm so ashamed of my body. Then I read that the medications that are used to treat Crohn's cause weight gain. This has depressed me beyond belief. Can someone talk to me, tell me what I'm supposed to do. I don't want to gain any more weight, I hate my body as it is. Are there other alternatives for medication? Can someone please be a friend and talk with me.

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Newly Diagnosed with Crohn's disease NEW
by: Lydia D.

Unfortunately, one is very much alone with an illness. I have given up telling people that I am sick. I live a hermit's existence because I am fed up of being bullied into doing things I can't or shouldn't do and I am too weak to assert myself without getting completely stressed out.

If your doctors say rest then stay in your bed with the TV, a pile of good books, magazines, knitting, whatever, and let the healthy individuals run after you. Resist letting yourself be bullied and turn the phone off when you are resting.

Your partner should be doing all the housework while you recuperate. If you don't do this, you can end up with a ruptured and infected wound, peritonitis, sepsis, which can lead to death. The more you rest now, the faster you will recover. It might be useful to keep a diary of events to track your own progress. Make it clear once again that you are not allowed to bend and stretch. With an ileostomy you should not do any heavy lifting. This is the long-term situation. Use the worn-out record technique. I am sorry to say this, but your partner sounds pretty heartless. It is obviously a total lack of understanding. If he is interested in you as more than a live-in house keeper, he will do some research and inform himself.

I do know where you are at because I have had 5 major gut operations and people expect you to just bounce back, which is not realistic. My algorithm is that the length of time it will take to recovery is approximately the same length of time you have been severely ill and possibly a bit longer. However, an ileostomy with Crohn's disease is double debilitating and you will often suffer from dehydration, weakness, malaise and exhaustion. Remember to increase your salt and water intake.

I would encourage you to google the pdf file The Mourning Process in Chronic Illness, print it out and read it. Also print out the following and leave it lying around when relatives and friends visit. http://www.crohns.org/congress/submission01/appiv.htm Put a file together of useful articles.

Try and build up a network of sympathetic telephone contacts - fellow sufferers are best. Healthy individuals are frightened of illness and will always make light of your situation and tell you to pull your self together and just get on with it. Join the local group. Caveat: not all of them will be supportive.

Smoking is a mega no-no. I was in hospital in March this year and was joined by a 30-year old Crohn's patient who had smoked for 15 years, never been in remission and was admitted with her first heart attack. She needed a stent placed. The paramedics told her she was having a panic attack. It was only when she "died" and the doctor resuscitated her in the ambulance that they sat up and took notice.

Hang on in there.

new to Crohn's PART TWO NEW
by: Anonymous

Also I have beeen feeling very alone as even the most supportive family members just don't seem to understand what I am going through. Ie I am only out of hospital by a few days and still in chronic pain from the surgery and complications and I have family members offering to drop off plants so I can start a veggie patch so I 'have something to do'! And another family member wanting to come up and put the Christmas tree up together when they are aware that I am under strict orders to have plenty of rest and nap twice a day until the surgery pain and complications have healed a bit better.
Then my partner on a few hours of an afternoon I had designated to rest due to chronic pain asking if I could just put on and hang out 4 loads of washing quickly first. (I am not meant to be bending down to the floor based front loader or hanging clothes, lifting washing baskets etc).
Then I hear him saying on the phone jokingly that I have been told to take it easy and am not listening to anyone! Arrrrgh!
I know they mean well and have been fantastic but at the end of the day it just feels like they don't really understand as they cannot feel the pain and the emotional impact of what I am experiencing.
There is a support group nearby that I will definitely join asap but being just before Christmas I thought a chat forum might be a good idea in the meantime.
I am also still on the steroids but they are being tapered down over about 6 weeks to nothing. So I am still gaining weight but hoping this will settle. However, I have found the steroids have helped a lot with symptoms so I don't know if I am a suitable candidate to be taken of the steroids - I guess time will tell.
Also I was a smoker but have been told that is a big no no with Crohn's so I am not going to put too much pressure on myself re weight just yet because I know giving up smoking can cause weight gain anyway. I am determined not to light a smoke again as I have known two people with Crohn's and the one that was a smoker was always really sick.
I guess the hardest part for me is the emotional side of things. I was actually already suffering from depression and Post Traumatic Stress Disorder from a car accident and abuse and just discovered a few days ago that because my anti-depressants were extended release they just go straight through my ileostomy bag. (they definitely do, I've seen them all go through and realised what it was once the pharmacist said this was possible). Coming off these anti-depressants suddenly at any time can have a bad effect but on top of the surgery and the whole almost-dying thing I guess it's just made it extra bad. But I am feeling a little better each day and my GP has put me onto another anti-depressant so I'm sure that will kick in soon.
I just want to stop feeling so alone.
Thank you for reading - and I look forward to hearing how you are going.It's so comforting to know there are others out there in the same or similar boats. Many Thanks, Tanya :-)

new to crohns PART ONE NEW
by: Tanya

Hi I'm Tanya from Australia. I am 32 years old.
Wow,I am almost in tears being able to read about people in a similar situation. I've been feeling so alone.I was just diag w Crohns on 8 Dec.
With regards to weight gain and steroids, from the tiny amt I now know, most ppl can be tapered off steroids & manage on other medications.I hope this will be the case for you.
The saddest part is how I was diagnosed-I have been begging diff Docs for a referral to a Gastro for 4 years only to be told no, it's just IBS.
So it got to the point where I took my 1st ambulance trip in my life in Jan this year.
After my 3rd ambo trip they suggested I may have an IBD,not just IBS,& said they'd refer me for an urgent colonoscopy within 4 wks.This was a few months ago.After lots of pushing I managed to get a consultation with a Gastro but no physical was done. They suspected I had Crohns and put me on 40mg steroids p/day & I gained about 10kg almost immediately.But it turned out that would be the least of my troubles for now.I was getting sicker and sicker from anaemia from all the blood loss, constantly short of breath and basically feeling like I was dying.I kept phoning the hospital but could not get Colonoscopy any earlier than Feb.
Then was my 5th ambo trip just this month late on 3 Dec,when they discovered that, even though they had recently done blood tests which had come up bad but apparently not bad enough,I now needed an immediate blood transfusion as my organs were shutting down. There was still a chance my body would reject the blood and I could die. It was so bad they would not even move me to wheel me to a toilet until they got some blood into my system.
An x-ray immediately thereafter indicated a ruptored large bowel so surgeons were called in for emergency surgery right then and there - by now this was 2am on Sun 4 Dec. They could not guarantee that I would make it through the surgery.It was a long few hours for my family and fiance but fortunately surgery went well and I now have a temporary (but they won't guarantee that) Ileostomy bag etc.
4 days later pathology results showed I have Crohn's,as I have suspected for sometime, but since I was receiving no acknowledgement I'd become v depressed & worried I had hypochondria or munchenhausen syndrome, & from comments being made around me I think a lot of other ppl were too. Generally I have tried to stay positive as I always am & feel at least it's a push for a healthier lifestyle & after 4 years of chronic pain I have an answer and can receive treatment.
I guess I just feel angry that things had to go this far when I was already having CHRONIC symptoms for years. I nearly died!

PART TWO TO FOLLOW.....

Newly Diagnosed with Crohn's disease
by: Anonymous

I am sorry to hear about your diagnosis. I was diagnosed when I was 32 after over 25 years of symptoms. There are many diseases that have this prodrome phase and Crohn's is one of them.

Because your disease went undiagnosed and was allowed to run its course, you have most likely developed stricturing (ring of narrowed intestine) and stenosing (sections of narrowed intestine) with fistulising Crohn's. This would in part explain your weight gain. The narrowed sections of intestine will cause food to get stuck and this will allow increased absorption of calories. I also suspect that your diet has also changed in the time period and that you have increased your calorie intake to compensate for missing nutrients and decreased any sport activities because you are so ill.

Diarrhoea with constipation is called overflow and is common with constipating Crohn's or intestinal blockages. Try sticking to pureed food and avoid leafy greens, bananas, skins, pips, etc., cooked or raw for a few days to see if that decreases the constipation. Your doctors must rule out a conglomerate tumour of the intestine, which would be an additional explanation for the short intestinal transit time over and above the fistula.

Newly Diagnosed with Crohn's disease
by: LydiaD

Your depression will also be fueled by lack of micronutrients. I recommend that you take a vitamin B-complex tablet (up to 300% RDA is not an issue) with zinc, vitamin C, selenium, and magnesium. Sub-lingual tablets are better. A lack of calcium can also contribute to depression. If the disease is advanced and in the terminal ileum then it is unlikely that you will be able to absorb the fat-soluble vitamins (A, D, E, K) and vitamin B12 - the doctors must investigate this as a matter of urgency. If this is the case you will need vitamin injections.

Don't overdose on the fat-soluble vitamins: http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

I seriously suggest that you rethink your diet and remove all sugar, honey, sweets, chocolate, sodas, colas, fast foods, etc., i.e. everything that will make you fat. You might have developed a secondary lactose intolerance - buy lactose-free products and see if this makes a difference. You really need to get a referral to a nutritionist and eat high vitamin and mineral rich foods with higher protein and no sugars, low saturated fats and lower carbs than you are eating now. Olive oil is good. Fish oil capsules are good. You should be checked for an underactive thyroid gland - selenium should help somewhat here. Diabetes should be ruled out.

It is generally the high-dose steroids (over 30 mg/day) that cause weight gain. There are not natural alternatives for this medication, but diet is also very important and very individual - especially in your case.

For your fistulising disease you should be put on Remicade or Humira and they will probably only have you on steroids until the other medication kicks in. If you don't take the medication you will increase your risk of landing on the operating table.

Keep a food, mood and symptoms diary. This will make it easier to communicate with the doctors.

weight issue with chrons
by: lizzie

Hi firstly i am sorry to hear you have recently been told you have chrons, but as you already know it is a very nasty hard to live with illness as people dont understand unless you have the nasty disease.
I am 32 years old with two young children.
I have had chrons for 12 years and had 2 lots of surgery, my chrons is still very active and i have tried so much medication suct as humira, infliximab, methotrexate and had reactions with all i have tried, i have been on steriods now for over 2 years constantly 40mg daily and if i try and reduce my dose i am very ill, my consultant has just started me on mercaptopurine a chemo drug used for lukaemia patients to try and help get me off the steriods as i am also very concerned about my weight and to try and help buy me time regarding having a stoma fitted.

I have never really lost any weight with the illness what so ever, please feel free to email me if you want to chat - lizatkinson2011@hotmail.co.uk

Hope you feel better soon x

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Newly diagnosed with crohns

by Shannon
(Michigan)

I have just been diagnosed with crohns ten days ago. I am very confused about this desease also after being sick for so long , relieved to finally know why i was so miserable. Im 37yrs old and feel i probably had crohns flares since my childhood. This last year was the worst of all with so much pain i felt very inadiqate as a wife and mother of three children i wondered if i would ever feel good again.. My crohns is in my mouth, stomach, and acending colon.. My doctor put me on 1 gram of pentasa to take four times a day.. I would like some input on how well this drug has worked for others with their desease in the same area as mine is.. Thank you for reading and any input would be great(:

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New Chron's patient wants feedback, PLEASE!

by Sue
(Georgia)

I have just been diagnosed with Chron's. I have gone two years being sick and no one could find anything wrong. I have had stomach issues my whole life and I thought it was just normal for me. I have had anxiety in the past so I blamed everything on that. So did every Dr. I saw. I recently had my galbladder removed because it was only functioning at 5%, no stones, just not working. I thought this was the end to all my problems. But I guess not. I went to a new Dr. for a yearly checkup because my regular Dr. had to take a leave of absence due to her illness with Chron's disease, (how ironic). My new Dr. ran a series of blood test because I told him of some symptoms that I was having (nausa, upset stomach, sometimes chills, and dizziness.) I had heard that right after your galbladdeer is removed that some foods will still go straight through you until your body adjust. So, I didn't think much about it. He said he was just going to check a few things out that could cause those symptoms. The main test he wanted to run was for Celiac disease, because my mother has it. I was negative for Celiac but he told me that Chron's showed positive. I am now trying to find out information about Chron's and treatment. The Dr. gave me Asacol to take daily. I am worried about taking an antiinflamitory over a long period of time. Are there natural options? Is nausa common with Chron's? And does it come on with no warning? I feel like I have a stomach bug all the time. I recently went to Las Vegas with my husband and landed up in the ER for 10 hours and sick in the bed the next three days. Not a good trip. We were only there for 5 days and I was sick three of them. I feel like I can't go anywhere because I might get sick. Any suggestions on how to deal with nausa when it strikes? I get depressed because I feel like I put a damper on everything. I used to love to go places and do things but not anymore. Some days I feel great and others I am so tired that I just want to go to bed and feel like I can't function. I know that I am rambling but it is nice to get this off my chest. Please, if anyone has any adivce plase write back.

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Feedback NEW
by: Annette Young


Hello,

Sorry to hear that you have been suffering. Crohn's can literally knock you for six and it can take a while to come to terms with any diagnosis.

Nausea is certainly common with Crohn's. There are many potential symptoms with this disease however including:

Abdominal cramps
Nausea
Diarrhea
Constipation
Skin rashes,
Headaches
Joint pain

Crohn's affects people very differently and you may have chronic or acute attacks but you may also find that the condition suddenly dissipates too. You may experience minor symptoms or be unlucky enough to have them all at varying times. But when the condition eases, you enter a period of remission and it can last for a long time. Some people experience years of normality but do be aware that as there is no known cure, it can be incredibly difficult to cope with when it flares-up.

Keeping a close eye on your diet is a first step. Eliminate really hard to digest foods, in fact make it as easy as possible for your body to digest foods and to absorb the nutrients it needs. If you are being sick, you may find you are missing out on valuable nutrients.

It is more a case of learning how to manage Crohn's that to beat it. Take any prescribed medicines but if you find that they do not work well, then go back to your doctor and try out some different prescribed medicines. There will be one that suits you.

The important thing is to work with your body and not against it. This way you take away some of the stress of the disease and it can help you to cope.

I hope this helps.

Best of luck,
Annette




ASACOL REALLY HELPS
by: Anonymous

I've had Crohn's disease for almost twenty years now, and have been on asacol evey day since the beginning. it is extremely helpful. a lot of Crohns sufferers simply dont take medicines, look for natural remedies. Not always helpful. Maintenance drugs are a crohn's sufferers friend. I relate to your story - I'm getting married next week, but guess who cant eat a thing because of the current flare-up? guess who cant leave the country for the honeymoon? Once you get it really under control you can live a normal life, but don't hesitate to take the asacol or whatever the doctor prescribes for the long term.

Reply on Nausa
by: Anonymous

Hi Sue,

Wow. it was like I wrote your page myself. Gravol
has becom part of my daily routine for nausa. I can take the pain over the nausa anyday. High tolerance to pain I have. When I travel tend not to eat till I get to my destination. I know that is not good but if the road trip does not have well planned out washrooms along the way .... eating just doesn't help matters.

I sometime pack a thermal - bag and eat just past the 1/2 way point or I know that a washroom
stop will be coming soon.

Gravol... on my desk, kitchen, washroom, purse
night table etc.... I never, never leave home without it... "Trust me when it hits I am ready"

I like the orange chewable myself : )
Unfortuately we don't always know when the fever, nausa, pain and everything else will hit.

If I know that am leaving town for example leaving this Thursday I start eating clear homemade soups protien based nothing heavy ... Stay away from anything that may get stuck in the system along the way.

Tired most of the time, Naps throughout the day is normal for me. I have B 12 injections bi-weekly. My body doesn't produce B-12 since my surgery. They help alot !!

New is the joint pain.... lower back, wrists, hands, knees or whole leg. The pain that goes with this ....I can't even try to explain.

If you feel it coming

Hands and wrist .... Slow down don't try and finish what you started.

Legs and knees... I put them up ASAP !!

It could hit just one area all five at a time.

Slow down or it could hit hard. It works for me and yes I did learn the hard way. I would push myself when I feel it coming. Just to get things down that could wait one more day. I only take the pain meds when I just can't handle the pain and becomes out of control.

Don't lift the grocery bags on big shops anymore. My daughter has been a big help. We go together and she will lift and put everything away.

I hope this was of some help to you.

Take Care,
: )

Thanks for the comments!
by: Sue in GA

Thanks so much for your comments. I have read that it is important that you use vitamins that are made naturally not synthetic. Does anyone know a good source for natural vitamins? Has anyone found out a way to stop the chills when they happen? I have been able to tolerate the cramps and upset stomach but the chills last about three hours when they happen. They just about do me in. I haven't found out what triggers them yet. I heard about a good book "Breaking the Vicious Cycle" by Elaine Gottschall, it is supposed to have a specific Carbohydrate Diet for Crohn's patients. I am going to try and get it today. I am very thankful for this website, it is great to be able to talk with others who have the same problem. Please continue to send comments and information, I want to find out as much information as possible. Knowledge is power! With God's help I know we can find the answers.

Options
by: Anonymous

You sound a lot like me. I was diagnosed by accident when the GI suggested a colonoscopy when I went to him for a gastroscopy. As for non-drug control measures, there are a few that have worked for others. The first is the Specific Carbohydrate Diet. It is designed to control the inflammation caused by trigger foods. See: http://www.scdiet.org/ for more. There are a few other aids. First, you should have a probiotic supplement that provides a collection of Lactobacillus/Bifidobacter/etc. bacteria. These have been shown to help reduce inflammation and displace harmful gut bacteria. SCD method yogurt or kefir (NOT store bought) is also very valuable for many reasons. Finally, because your gut is damaged and not functioning properly, you need a multi-vitamin (no iron) and extra vitamins C and E as well as adequate B12 and Folic acid in the multi. You might need to check your B12 and iron levels since you might not be absorbing them. I am newly diagnosed, but I am in remission mostly because I control problem foods and have done so for years.

reply to crohns
by: Anonymous

Did you have a colonoscopy to diagnose your crohns. My daughter is six years and has been ill for three years. She has has 2 colonoscopys and a berimeal. The berimeal revealed abnormalties in the ielium but until they get biopsies they cannot diagnose her.She has terrible abdominal pain and fevers. Bad arms and legs and burning when she goes to the toilet. It is a terrible illness that controls your life.she has been put on liquid diet MODULEN IBD and this helps. She completely stops eating and lives on these feeds for weeks when she feels much better. Hope this has answered your question.

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New Crohn's

by Mellissa
(PEI,Canada)

Hello,
I am 23 years old and have recently been diagnosed with Crohns. I have had a rough winter and in the end they are telling me that its Crohn.s
I suffered a miscarriage back in January and ever since then things just wern't right. I went to see my doctor and first off he assumed that it was Acid Refux and sent me home with some meds to take care of that. When it did nothing for me I stopped the meds and ended up waiting longer and then I had dropped 15 pounds in 2 weeks and I was only 115 to begin with so it was a big loss for me. by this time it was Easter and I was having dinner with my family and they were all really worried about me because of the amount of pain that I was in and the way I looked. My skin was pale and my hair just wouldn't come clean. I looked like a mess. I was very lucky to have anamazing husband by my side and who would calm me down when I got worked up and depresssed over the pain and the way I was looking. At Easter dinner I had told my father about a bump that developed on my leg and he in turn told my mother who made me go into the Emergency room. upon my arrival there they took my stats and admitted me right away. gave me some Morphine for the pain and hooked me up to an IV as I was very badly dehydrated and malnourised as everything I ate would go right threw me within minutes.
They kept me in the hospital for a week and ran test and test on me and gave me a Colonospy.
They had me on Prenasone and have tryed to ween me off of it but the substitue they had for me wasn't enough which then sent me back into another flare up and back to square one back in the hospital. They put me back on the steroids and sent me home to wait for the specalist.
Now my specalist has advised that I start at Methrotrex injections once a week. The side effects sounds terrifying and im not looking forward to this.
I am wondering from some of you who have had this Disease for sometime now that if I will ever be able to without medications and what is a good sort of diet to attempt?
I am very lost with where to go with this and the doctors are not good at all with guidance.
Any help that anyone can suggest would be great.

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New to Crohn's and a Starting Point.. NEW
by: Annette

I am so sorry to hear your story, you have suffered a great deal and unfortunately, many people with Crohn's disease have experienced similar bouts of ill-health.

It can be really confusing when you first become diagnosed but try to see it as a light at the end of the tunnel as once you know what you are dealing with; at least it takes some of the uncertainty away.

The first thing to realise is that Crohn's affects people differently. It's a chronic disease which means it is in for the duration and doesn't simply become cured. Fortunately, it can suddenly just ease up and you will experience bouts of time where you will feel Crohn's free.

If you are feeling overwhelmed by the amount of information coming your way, it's a good idea to take someone with you when you visit the doctor or hospital so that they can help you to remember all of the important bits. At the moment you are probably experiencing fear and anxiety which won't help your Crohn's by the way.

Although you may have been experiencing pain for some time, you may not have kept a journal noting the times when it was worse and whether it became worse after eating certain foods. It's a good idea to do this over the next few weeks and it will start to form a pattern for you, revealing possible triggers.

You will need to identify the foods that cause the problems and here is a list of food types that could cause potential problems for you individually:

alcohol
butter, mayonnaise, margarine, oils
fizzy drinks
coffee, tea, chocolate
dairy products
fatty foods
foods high in fiber
gas-producing foods (lentils, beans, legumes, cabbage, broccoli, onions)
nuts and seeds
raw fruits
raw vegetables
red meat and pork
spicy foods
whole grains and bran

It's a long process to find out which ones may trigger a response but see how you go. Just remember you are doing something positive and you will find it gets easier.

By avoiding certain foods that affect you, it is likely that any symptoms of bloating and abdominal pain becomes much more manageable. Any cramping and diarrhea will ease too and you will feel a little bit more human.

If you smoke, it's a good idea to give it up as soon as possible and if you are feeling constantly fatigued, it's worth noting that sometimes, medicines prescribed can make you feel like this so discuss this with your doctor. Adopting a good sleep pattern is essential but if this is difficult, nap when you can and just rest giving your body a chance to recuperate.

I hope this gives you a good starting point and if anyone else has any tips, I'd love to hear from you.

Good luck.


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NEW to Crohn's

by Christine
(Newcastle, NSW, Australia)

Hi all, I’d like to share my story and I hope maybe someone can help me understand.

I’ve been suffering with diarrhea since what seems like forever I’m 37 now and I remember going to see a doctor in 1999 it was my local GP I complained then of constant diarrhea, bloating and cramping she suggested it might settle when I returned the following week and again complained she suggested I try a wheat and gluten free diet to see if it helped, it did for a few days then it was back but I pressed on with the diet and soon I was cutting out other things and replacing others, I’d have good weeks and bad weeks. Some days I’m in so much pain I cry at the thought of going to the bathroom or eating something. It didn’t seem right but the doctor didn’t seem to have an answer.
Then when I met my now husband it was so embarrassing at first but he soon became very supportive trying to help me find things to eat that didn’t upset me, but after we fell pregnant twice and lost both babies we wanted some answers one test showed that I had Lupus anti- coagulant and that I should be taking aspirin daily but this didn’t really help my diarrhoea and cramping but I guess it seemed to take a back seat now as we were so wrapped up in getting pregnant and keeping the baby alive.
We did a few cycles of IVF after it was found that I also have endometriosis which could cause cramping horrible period pain, leg cramps and bloating it could also spread to the bowel causing diarrhoea and bleeding that I was now experiencing. So I began to treat my diarrhoea as part of my life I didn’t bother whinging about it anymore the doctors would just look at me as if to say it can’t be that bad and I started to feel like maybe it was normal or normal for me. But last Oct I had surgery to remove some of the endometriosis again and hopefully get some relieve, I was told it was everywhere “but on the bowel” and that hopefully it would settle with the endo gone from everywhere else.
But no not this time as the weeks have passed my symptoms became worse than ever even the littlest piece of food will burn straight away and be out the other end within 20mins or so some nights I’ll bloat so much it’ feels like a huge lump is forming in my stomach making it so uncomfortable to lay down stand or sit even when I’m not that bloated my belly is just sore to touch. so I made an appointment to see my now new GP in 10 days was best they could do, unfortunately I went to work one night feeling tired and run down as usual but later the pain in my stomach and belly felt like it was rising and burning like never before and into my lower ribs, the next day the stabbing pains and vomiting saw me go to the hospital a nasal tube was put down my throat to help stop the vomiting and drain the faeces 2 days later a laparoscope was done full thickness ulcers were found then another 2days a colonoscopy was done large bowel was fine professor believes I have Crohn’s of the small bowel and now wants to operate again to remove a section of small bowel as she believes I have a blockage or narrowing of the bowel as I’m looking around 6months pregnant I was on 50mg prednisolone now taking 37.5mg think I’m starting to feel a bit better but then I start to bloat again wake up skinny go to bed fat.
My symptoms not sure if all are related but I can go from constipated to diarrhoea in minutes although it’s not something regular but it seems to happen a least once every 2 months or so. I get really blurry vision some days and I’m fine others, had a huge sore on my tongue for months now just the odd one in mouth knees and feet ache
My belching could put Homer Simpson to shame. I have always suffered with migrans
I get sharp pain in odd spots chest area back and front, blood and protein in urine bright fresh blood after number twos and butt seems to ache at times, what used to be just lower abdo cramps is now also higher up and the last 2 days my sides are hurting maybe cause I’m so bloated.
This weeks bloods show there is still inflamation and x-ray showed possible narrowing now to have small bowel series scan 12/3/08

Comments for NEW to Crohn's

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reply to
by: Cindy

I too have Crohn's and do know the moments of stomach pains and mouth sores. I know this sounds so silly but my doctor prescribes Magic Mouthwash and also includes in the formula Tetracycaline(sp) which helps a little sometimes. But if that is not available they tell me to get childrens Benadryl and swish around then spit or swallow which helps with sores in the mouth and the tongue. My tongue cracks really bad til it bleeds sometimes- sometimes a b12 shot helps to. When my belching was at it's worse the doctor prescribe me Flagyl which seemed to help after about 10 days on it. I had a narrowing for years. I was diagnosed at age of 19yrs and now I'm 45 yrs. I was able to put off surgery till this year. I still have to have the pyloric area dilitated which helps that area. I had a foot and a half of colon removed just in January. What medicines are you on?

been around the block
by: barb

As we all do l suffer along with you. all of what you said is part of the illness. it seems no 2 people are the same some stay skinny some gain. l was on prednisone for 20 oodd year some years solid matience 1 a day ect now years later, l cant take it as my joints seize up like there sprained.. Lucky for me l went on remicade 4 yrs ago it was great. my 3 fistulas went away they said the vaginal one wil never.. life was good. toleralble. but back then l was a test subject so after 4 treaments the canada government said now you have to pay 12,000. so l crashed..... the 30 extra lbs l carried around fell off quickly and so on.. now 4yrs later the meds are still 3000.00 a treament but since l left my husband .. lm low income so its paid for but this time is not the same the fistula never went away. But energy and pain were much better. if you get the chance to go on remicade. make sure no interuptions. lve have this since l was 16 lm 45now and just try to take each day as a gift l have two lovely kid that keep me going just live life to the best you can peace and harmony are key. as with what the docs say they keep coming up with new things all the time.. good luck and well being



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very new at this!!

by Jenna
(Canada)

I am 20 years old and just found out 3 months ago that i have crohn's ..i am just really confused about this whole disease i feel like it is taking over my life, I have my good days and my bad days which is causeing me to take medical leave from work which we all know does not pay you very much. The doctor has me on immuran and i am not sure if it is working.Im just wondering if im causing it not to go in remission or if there is anyother medication i can take that really works for other people.The other question i wanted to ask was...what are the symtoms of mini flare ups and how bad do they have to get befor going to emergencey or contacting your doctor. It would be really nice to talk to somebody with crohns thats knows what i am talking about and knows what i am going through.

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Very new at this NEW
by: Annette Young

Hello there,

I hope you're doing okay and that the news of your diagnosis is sinking in. I can understand why you feel confused and very unsettled about it. Crohn's disease can be an all-consuming disease depending on the severity of the flare-ups and whether you can get the disease under control.

You will certainly have good days and bad days and many people experience times when life starts to go back to some sort of normality, because the Crohn's disease seemingly goes into a respite period. This can be anything from weeks, months and even years. The problem with Crohn's disease is that it is incurable. Even though people believe they have beaten it, it can be ever present and lurking. The simplest thing can act as a trigger and the whole disease can flare-up again.

If your medicine is not working, do not be afraid to go back to the Dr and ask for a further test or additional support. I always think of Crohn's disease as being experienced on an individual level. Whilst the core symptoms are similar, there are varying degrees of severity experienced.

When your condition is a little bit more settled, you might suddenly experience a flare-up which can affect you on a number of ways-abdominal cramps, nausea, fatigue, joint pain, diarrhoea etc

Always try to eat healthily but with easy to digest foods. keep a food diary and try to stay as stress free as possible. Not always easy I know.

This should give you a good starting point, but do come back if you have any further questions.

Best of luck,

Annette


New diagnosis
by: Della



Hi Jenna

I've only had Crohns for six years and am
fortunate to be in remission from diarrhea
for five years. It was slow starting with
different medications, but my doctor finally
put me on prednisone and also Imuran
(Azathioprine). Imuran is a powerful drug
and is one the worst immunosuppresant drugs
you can be on.

I have had three staph ear infections, an
abscessed tooth, multiple basil cell and
squamous cell skin cancers, plus two
melanomas. Granted I had many sun burns
when I was young and am fair skinned. My
dermatologist advised me last year that I
needed to have Imuran replaced with another
suppressant. Finally I am totally off after
a long period of reducing dosage as directed
by my GI doctor.

Imuran takes about five to six months to
really be effective. So give it time, but
just be aware of possible side effects.
Bless you Jenna.
Della





.
by: Anonymous

I've had it for about 10 years, I haven't been through nearly as much as the two posters before me. Bottom line, it effects everyone differently. Mess around with your diet, see what works, what doesn't, so on. Don't be afraid to try new things. I hear good things about probiotics. I picked up a bottle of that primal defense during my last flare up, I'm still getting over that and haven't started on them yet. As for contacting your doc, if it gets bad, make the call. That's what doc's are there for. As hard as it may be to believe, not all doctors are evil, even though what they do to you can be down right torture. They'd rather hear from you and catch any problems early, I assume everyone would want to catch it early with this stuff.

I know how you feel
by: Tod

I, unfortunately am an old pro. I have had Crohn's for 38 years and have probably been on every imaginable diet, treatment and therapy known to man and animal alike.
A flare up, to me, feels like a constant punch in the lower right side of my abdomen. Along with that, I never feel like i empty out completely when using the bathroom and never stop feeling the urgency to go. Sometimes it feels like the punch is being directed squarely in my midsection as well.
Now for the good news.
Two years ago I started Remicade infusions and I now feel better than I have felt since I was eleven( before I started having the symptoms).
i thank God for this amazing treatment( along with 6mp "Mercaptopurine) It truly has been a lifesaver for me!

not new at this
by: Dan

I've had crohns for 35 of my 40 years ,when my bowels stop moving and i have severe stomach cramps,I go to the emergency room,Ive had surgery 6 times so far.
I know how you feel.

Prednisone always worked wonders for me,
Immuran seemed to cause me some problems ,butI know others had better luck with it.

Dan

dhenry351@gmail.com

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New to Crohn's Disease

by eric strauchler
(apex nc )

My wife is losing weight,and her my body always getting her sick. She always cold, she eat like a bird. She spend many times on can with bloody stools. Eileeen was dianosed in UNC hospital and her Gi intern drop this disease on her ,told her nothing about.Except go check internet. She has no will. She also had a stomach virus and bronchiss. No one wants to help me. She was in 2 emergency rooms and give 1v's. I know she's I get dehydrated.
Yet no one, does any tests to check anything else. I'm afraid. I her husband is a wounded warrior and in Ft Bragg,NC and can only visit on weekends. Need a support group somebodies who can talk her verbally.
My home is 919 772 3417. If you get tape say crohn's support.

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New to Crohn's Disease

by Maranda
(Kansas)


I'm 28 years old have always been healthy and now am dealing with Crohn's. Its the hardest thing i've ever had to control, just when i think i'm getting better, it gets worse. my biggest question right now is how do i get rid of the CONSTANT nausea? Is there no medication or anything i can do other than what i'm aleady doing with my diet?

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Nausea NEW
by: Annette

Hello,

I am so sorry to hear that you are having a bad time health-wise. Sadly, nausea is one of the main symptoms of Crohn's disease and it is certainly a horrible side-effect as it will impact your life as you have already experienced.

There are two phases of treatment typically for those with Crohn's disease and the first is to try to control the inflammation of the intestines and to relieve any unpleasant symptoms. This then allows the healing process to begin. Once the disease is in remission, continuing treatment is aimed at keeping those symptoms at bay.

Are you currently on any medication? If so, you may wish to check with your doctor that the medication is not causing the nausea as it is possible.

Try to watch what you eat too as there are many triggers which can instigate a flare-up.

Greasy foods
Soft drinks
Alcohol
Hard to digest foods such as nuts or fruits and vegetables with skin or peel.

There are medications that can help to combat the nausea but be aware that there can be side-effects such as increased drowsiness. Ask your doctor for the best medicines to take based on your lifestyle needs. If you keep a lifestyle journal and map out everything Crohn's related, this will help the doctor to help you.

You could also look into natural alternatives - some people with Crohn's disease swear by infusing raw ginger into hot water or by nibbling on raw ginger. But everyone reacts differently so I would suggest additional research alongside medical advice.

I wish you the best of luck and am sure the doctor can find the right treatment for you.

I hope this helps.




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Newly Diagnosed With Crohns

by Debbie
(Calgary,AB,Canada)

I was just newly diagnosed with the disease but the doctors feel I have had it for 10-15 years due to my symptoms. I have 20 cm of thickening with a part of the intestine that is very thickened that when I had my colonoscopy they could not pass through this area. Can anyone tell me how long I can go without needing surgery when I am at this point in the disease.

Debbie

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Newly Diagnosed With Crohns
by: Lydia D.

I was in a similar state when they diagnosed me. Like yourself it was clear that I had had the disease for a couple of decades prior to diagnosis.

It is difficult to say when you will need surgery. I think that you will know when it is time. At the end I was begging for surgery. If you can still eat and function then surgery is unlikely to be necessary. However, the risk of such as abdominal abscesses, fistulas, peritonitis due to intestinal performation, ileus (total closure of intestinal lumen), intestinal cancer on long-term Crohn's inflammation developing is high.

Consultation with a nutritionist might help you in the interim. There is some good nutritional advice here, which should help you avoid increased pain, etc., due to blockages.
http://ostomyland.com/mainsite

Firstly, in my layperson's opinion, you need to ensure that your disease is under control and for this you need to have a good team of doctors. This could take some time to find unless you have been exceptionally lucky. Secondly, you need to get a second opinion if someone suggests that surgery is the only way ahead. There are a lot more options available nowadays and you should explore these first.

I would like to add that planned surgery is lower risk and has a greater chance of success than emergency surgery. However, as you know, surgery is not a cure for Crohn's.

I had hoped that all my troubles were gone after I had had the panproctocolectomy, but the Crohn's continued. After multiple ileal resections I now have short bowel syndrome (aka intestinal failure aka malabsorption syndrome). This is also no fun and I am teetering on the edge of needing to be parenterally fed and need regular vitamin infusions and injections.

Lydia D.


Colon thickening...
by: Peter Bray

Get the advice of a good gastroenterologist as thickening of the colon wall or stricture will cause difficulty in passing stool material. Become your own researcher, study everything you can on the Internet, look up "crohns strictures" and make sure your gastro is bright and communicative and referred well by others, it's your health and your colon, not his or hers---

Peter Bray, Benicia, CA

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New to crohns - pls help with advice...

by Zoe
(New Zealand)

Hi there, im desperate for some answers or advice from people who suffer or know ppl who suffer with crohns as im newly diagnosed. I dont know anyone personally who has it, and feel like the doctors arent completely answering my questions.
My story briefly is that i was diagnosed last year while on my "OE" in scotland( I am 22 years old). I Have since come back home to n.z to sort out my health. I have today finally just come of the steroid I have been on the last 6 months and the test now is to see if the drug azathiprine is enough to keep me well(aswell as taking pentasa)
I am always tired and have to go to bed about 830 every night as Im exhausted, i continuisly have at least 3 mouth ouclers at a time, suffer with headaces abit and somedays feel a lil sick until it will just pass then im fine....
What i want to know is, will i just always be tired like this now? is that part of crohns and will i have to just put up with the mouth ouclers? and are they common to have with crohns like i have them-constantly!?? and if this drug doesnt work is it possible to stay well on natural medications ( as ive done some research on what they reccommend) or is it a good idea to get on top of it with medical drugs first then think natural down the track??
I feel so alone and lost like im sure so many others feel....
Thanks for any feedback!!

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New & Unsure About Crohns

Hi.
I Am Currently Unsure Whether I Might Have Crohns.
My Mum & Sister Both Have Crohns.
I Have Some Of The Symptoms:
Lack Of Appetite
Constipation Sometimes, As Theres Days I Wont Go To Toilet Then Others Im Fine.
Fatigue Which Gets Intense & Seems Fairly Constant,
Abdominal Pain - Varies Can Be Really Intense That I Want Too Curl Up In Bed Then Its Just Uncomfortable Then Nothing.
Rectal Itchness & Discomfort Sometimes,
Possible Anemia
Have Had Depression Recently & Low Mood,
Struggle To Put On Weight & Sometimes Loose Alittle,
Sometimes Bleed Alittle When Go Too Toilet
Have Sore Knees & Have Currently Sore Ankle
Sometimes Have Really Bad Sweats In Night & Wake Up Sweaty But Sometimes Nothing.

I Have Heard Theres A Link Bewteen Genetics, If Family Members Have Crohns My Chances Are Increased.
I Dont Have These Signs All The Time & Last Few Weeks Have Been Ok, So Not Sure If I need To Get Checked Out?

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New and Unsure About Crohn's NEW
by: Annette Young

Hello there,

I hope you're feeling better and that a correct diagnosis has been made. It does seem to be very difficult to diagnose Crohn's disease and I know people who endured all sorts of tests and pain and it literally took decades for the diagnosis to come through.

I also know many people who have Crohn's disease who have had to literally fight tooth and nail to get further treatment and support and this is terrible. The last thing you want to do when you feel fatigued and in pain is to have to take a bolshy stance.

I agree with the other posts in that Crohn's disease typically causes diarrhoea but I have heard cases where feelings of constipation has occurred through blockages. If you do have a blockage, then it is vital that you seek medical assistance.

Fatigue is a very common side-effect of Crohn's disease as is joint pain, weight loss, anaemia and rectal bleeding. It is true to say that genetically you stand a greater chance of contracting Crohn's disease if you have family members who have it too. IBS is often one of the first diagnosis are made and in fairness irritable bowel syndrome does mimic some of the symptoms of Crohn's disease, but I do advise you to go back to your doctor to get further support.

Sadly, you do have to become your own detective to work out what is going on with your body. Presenting the doctors with information about your symptoms, triggers and even lifestyle can really help them to make a correct diagnosis. It is important that you don't just ignore the symptoms, they may come and go and the pain and discomfort may fluctuate but what you don't want is to leave it and then to experience a severe episode and it become an emergency.

I hope this helps,

Do let us know how you get on.

Annette

Thank You.
by: Anonymous

Thank You So Much For All The Help & Information.
I Did See My Docter After My Sister Urging Me To,
They Did Blood Tests That Showed Inflammation,
& Gave Me Tablets To Help With Stomach Pain,
& Quickly Said It Was Most Likely IBS.
However I Am Going To See Another Docter Next Week.
As Have Next To No Appetite & Lost Not Far Off A Stone Of Weight.
Hope To Have Some More Definate Answers Soon.
Thanks Again. :)
X

New and Unsure
by: Anonymous

...Continued from above or below

Eat low fibre vegetables such as carrots, potatoes, broccoli, cauliflower, fish, chicken, soya, bananas, apple mousse, peaches, apricots (in moderation), lactose-free milk, no soft cheeses, toast, rice, noodles, etc. Eat good fat, such as olive oil and sunflower oil for cooking. Walnut and linseed oils are very good for you. However, you cannot cook with them. They both come in very small bottles, which must be kept in the fridge and used up quickly.

You should describe your stools using the Bristol Stool Scale http://en.wikipedia.org/wiki/Bristol_Stool_Scale

Use the comparative pain scale 1-10: http://www.tipna.org/info/documents/ComparativePainScale.htm

I suggest that you use the Crohn's Disease Activity Index (CDAI) as a basis for your data collection: http://www.ibdjohn.com/cdai/

Doctors only really respond to data and if you can produce the necessary data then they will be able to give you a proper diagnosis faster. They will want to know if you have lost weight (Caveat: there are obese Crohn's patients), how many bowel movements a day,

You have two experts in the house who should be able to give you tips.

How to prepare for a doctor's appointment:
http://www.webmd.com/ibd-crohns-disease/crohns-disease/tc/crohns-disease-when-to-call-a-doctor

Caveat: You cannot diagnose yourself. You need extensive tests carried out by a gastroenterologist. At this stage nobody can say that you have Crohn's. However, blood in the stool and night sweats need urgent medical attention because these indicate a high probability of damage to the gut and infection, respectively. The extraintestinal symptoms of Crohn's include joint pains, liver problems, inflammation of the eye, vasculitis, skin rash, etc.

I hope that your detective work is fruitful and that you receive a correct diagnosis. Put together a folder with your research results and keep that diary going - collect at least a month's worth of data and try and write down when your symptoms first started (one year ago, two years ago?).


New & Unsure
by: Anonymous

You need to see a good gastroenterologist to get a diagnosis. The symptoms you describe can also apply to other diseases such as coeliac disease, diverticulitis, bad nutrition, etc.

At this stage of the game if a doctor suggests IBS I would move on and find a second and better doctor. A diagnosis of IBS can only be given when everything else has been excluded. The average individual can also have food intolerances.

There is a constipating Crohn's - it is generally associated with stenosising and stricturing Crohn's or a smouldering Crohn's, which causes heaps of adhesions www.adhesions.org , which in turn can cause partial paralysis (by strangulation) of segments of the gut and can eventually lead to necrosis (happened to me).

From the genetics, your chances of being passed on the Crohn's genes are around 8% or 1:12 if only one of your parents has Crohn's. This increases to around 1:3 chance if both of your parents have Crohn's. There is a paper that reports a 92-year old Japanese man with a first diagnosis of Crohn's. Perhaps, your dad is a carrier of Crohn's genes.

It is estimated that there are well over 200 maybe over 300 genes associated with Crohn's and many of these overlap with other autoimmune diseases. This is why it is not unusual for Crohn's patients to have one or more other autoimmune disease, e.g., psoriasis, rheumatoid arthritis, multiple sclerosis, diabetes, etc.

I am convinced that I had smouldering Crohn's for 32 years prior to the diagnosis. I had similar symptoms to yourself and as a teenager had a time when I would come back home exhausted and have to go to bed around 20:00 and sometimes spend most of the day in bed. I also had eye problems and joint problems along with the general malaise and weakness plus a gut that was very unpredictable.

Depression is associated with malabsorption, which can be caused by Crohn's. http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/ There are many other factors involved in depression and I suggest that you read up about how to increase your serotonin levels and make the necessary changes to your lifestyle to make sure that you are halfway happy and fit enough to work on getting a diagnosis: http://www.integrativepsychiatry.net/serotonin.html

In order to get to the bottom of this (no pun intended) you need to collect data by keeping a mood, food and symptom diary (Google for support). It is hard work and requires a lot of time and effort, but it is the only way.

Try to stick to easy to digest foods. Keep away from red meat and salads for a couple of weeks. Avoid dried fruit and nuts for the same time period. Avoid skins, pips and whole grains for a couple of weeks. Slowly introduce these foods to see whether or not they have an effect on your gut health.

New and Unsure
by: Shari

Mr. Bray is right -- Crohn's gives you diarrhea big time. It's because the inflammed bowel secretes lots of salt and water. Your constipation and on and off symnptoms sound more like Irritable Bowel Syndrome.

I have 3 family members with Crohn's, one is my mother. Please don't put off seeing a doctor -- you'll have to see your primary physician first for some tests and if indicated you'll be referred to a GI specialist.


New & Unsure...
by: Peter Bray

No diarrhea? I have never heard about Crohns without diarrhea...my daughter has had it 23 years, is now 43---recently had fistula surgery and a temporary, looped ileostomy--Always better to get checked out---see a good gastroenterologist---Read, read, read, ask questions at support groups like this--E-mail me if you like, I'm a lay Crohns advocate and researcher for my daughter, 23 years---

PetrBray@AOL.com

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Very New to this

Hi, I am a 27 year old female who has had what I call "bathroom" problems for years. Finally my stomache started swelling and people started asking when when I was due. I would look 7-8 months pregnant, however, my husband and I have not been able to conceive for the last 7 years. I started having awful sharp pain in the left side of my stomache. It hurt sooo much, I would cry and scream, however, I don't have insurance and would not go to the doctor. Finally, while visiting my family my parents got me to go to the emeregency room. I was diagnosed with Diverticulits (not sure if that is spelled right). That was scarey! That was in Feb. We recently moved and I started seeing another doctor. He says I have diver...but also have Crohn's Disease. I am bleeding, can't stay out of the bathroom, etc. He has put me on a strick diet, medicine that makes me sleep all of the time, limited activity, it is so hard. He has told me that I can't have rough food, no raw food, no acid foods or citrus, nothing spicy, no nuts, no corn, no seeds, etc. I have being seeing this doctor about a month and have been doing pretty good, however, the last two days have been really bad. I hurt so much constantly. It's sharp pain and burning. It burns constantly and I go to the bathroom constantly. My husband is very supportative and I try my best not to let me him see me hurt but it is so hard.

Does anyone have any ideas how to keep flare ups from happening? How to stop the pain? What can I do? Thank you.

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Very new to this NEW
by: Annette Young

Hi there,

Thank you for your post.
I am so sorry to read what a difficult time you are having. This disease is so frustrating and aggressive in its approach and you have my complete sympathy.

Stress is definitely one of the worst triggers for Crohn's disease. Unfortunately the more you worry about your health and the disease, the worse it is likely to get. Stress management is absolutely essential but when your life is going haywire and you have pain to contend with on top, you might be wondering where you can start.

I would suggest you focus on all of the annoying little things that occur on a daily basis and try to alleviate the little things first of all. This will make it easier for you if you feel unwell. Once you start getting to grips with those stressors that are manageable, you may well find that you start to feel more in control of your life as a result and you can expand the process.

Learn relaxation techniques to help you to source any tension within the body and to then release it. In other words, you help your body to help itself. Meditation is another powerful resource available to you.

I have attached a link to help you get started and I hope your life starts to improve. Do also look at your diet to ensure no triggers are lurking within your everyday meals.

http://www.webmd.com/balance/guide/blissing-out-10-relaxation-techniques-reduce-stress-spot

I wish you much luck,

Annette

Reply To Girl Who Wants Advice On How To Prevent Flare Ups
by: Suzanne

I find Not stressing out over different situations helps me sometimes, ive also learned having soft tissue a constant supply in the bathroom a hot water bottle and rest are a must. Ive found my own comfort in making a drink that helps reduce the pain even in the worst of flare ups.... I get 7up (sprite) heat it up in a microwave for at least 70 seconds take sips not mouthfuls. It may sound weird but when youre in the pain ya get with chrons i think anyone would try it. SPRITE

colon strictures (collapsed colon)
by: Anonymous

i go for surgery in 2 weeks for a colon resection, they couldn`t do a colonoscopy do to the colon was mashed down flat. i get lumps on lower left side and knee droping pain with most of my bowel movements, 4 years is enough, tried roids, antibiotics, take remicade to try and keep it form spreading? good luck..

Suggestions
by: Anonymous

Three things to try. First, has your doctor restricted you from gluten? Gluten is the most common trigger for Crohn's flares. Second, you need a fiber supplement, but not just any supplement. The only really safe one is Prodiem (in your drug store). The others can actually contribute to inflammation. Make sure to drink lots of water with the fiber supplement both before and after taking the pill. Finally, you need to get some nutrition to your friendly gut bacteria. There are two ways to do this. One is to make your own yogurt or kefir. The procedure is shown on http://www.scdiet.org/2recipes/scdyogurt.html
If that is impossible, you can try taking a whey supplement. You need to look for one that claims 98 -100% lactose free and contains no added sugar or FOS. You should avoid the chocolate flavored kind. You should also consider using the SCD diet: http://www.scdiet.org/

Very New to this
by: Anonymous

I allways suffered with constipation. In 2003 I also started with sharp pain at the left side of my stomach. At the end I became so ill that I landed in the hospital for quite a long time but only in May I wet to the doctor again and asked if he could do a colonoscopy (examination of the colon with a special tube). He only saw my colon was narrowed and he took a biopsy an I was diagnosed with Crohn's disease and I then undergo a hemicolectomy (removal of a part of the colon (Sigmoid colon) left side of my colon. I think you must ask your doctor to do a colonoscopy to see if you haven't have a stricture (naroowing) of your colon

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Still new and adjusting to Crohn's...

by Chelsea
(St. Louis, Missouri)

My name is Chelsea, and I was diagnosed with Crohn's on my 20th birthday, about 5 months ago. I've had stomach pains and off and on constipation since I was 15, but never went to the doctor. When I finally went to the emergency room and had some tests done, the doctors told me I had Crohn's, which I was already familiar with.
My grandmother died when I was ten, after having surgery for Crohn's, to remove part of her small intestine. My other grandmother has Crohn's as well, and has been dealing with it for about forty years. My doctor didn't give me much information and basically told me to "suck it up", because from now on, I am my disease. I went into a severe depression and felt very alone.
Here it is about 5 months later, and I'm just getting used to the idea of dealing with my disease. It took me a long time to gather up the courage to even research, because I was afraid of what I would find. My GI put me on steroids, which made me gain 20 pounds. I'm off the steroids now, but still trying to loose the weight while trying to stay healthy. I don't want anything to stop me from living out my life and being happy.
I'm thinking about trying yoga to relax, I have bad anxiety and occasional depression. I am a college student, so I'm always on the run. I also have a very crappy job at McDonalds, which doesn't help with stress. I would really appreciate any advice or even encouragement anyone has to give.
Contact me at StrangerThings88 @ yahoo.com

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Still new and adjusting to Crohn's NEW
by: Annette Young

Hi there,

Thanks for sharing your story.

I am so sorry that you were given the diagnosis and then basically left to get on with it. I do wish doctors would realise that basically people are not the condition and that they need to be treated with understanding and respect.

Crohn's is a horrible disease but you do have to come to terms with it. I completely get why you buried your head in the sand and didn't want to know more. It is scary but actually, the more that you know, the easier it is to deal with it. I have found that the best way to approach this disease is to face it head on and to learn how to deal with it on an individual level.

Stress plays a huge part in causing flare-ups so if you can target any stressors in your life, eliminating any problems one by one, you will start to feel a little more in control. Ideally, you need to take a holistic approach to life and to live as simply as possible. Yoga is fantastic. It will help you to feel better within your body and the postures massage the internal organs. It will also enable you to practice deep breathing techniques that will ease anxieties as well as to make you feel calmer. Try meditation too as this can have a wonderful healing effect.

It can take some time to learn how to stop your mind racing especially if you have a lot of worries, but it's well worth the effort.

Wishing you much luck,

Annette

---
by: Anonymous

What a terrible birthday present. >: Sorry, love.

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What to Expect with Crohns Disease

I have had Crohns of the ilum now for almost 10 years. My checkup are basically the gi doctor who I love will push on my abdomen, listen to my bowel sound and do blood work. I have been on humaria now for almost 3 years. I missed two doses back to back due to a bad sinus infection. The crohns has spread to my rectum. Has anyone else had this to happen. I know I now have to have both an upper and lower scope and small bowel followthrough to make sure not elsewhere. What are my checkup going to be like now? I have a colonscopy about every 3 years will that increase? My biggest fear is this puts me closer to surgery, does it?

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