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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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