Crohn's Disease: Your Stories
Here are the latest comments and stories from our many visitors. Please feel free to go through them all, and perhaps send in a story of your own:
"Hi I am a 26 year old female who was diagnosed with chron's at the age of 15(1995). I was in remission for 7 years with no sign of any pain or fever still had frequent bathroom movement but nothing serious. Then in 2002 I became obstructed was rushed to the hospital and had an emergency colostomy bag that was supposed to be reversed three months later but till this day i still have it due to narrowing of the colon.
chrons has made my life hell I have been on so many pills 6mp humira prednisone asacol pentasa metrodozonile name it i have taken it I have had one miscaraige due to the meds and also now after the birth of my son 13 months ago suffer from constant flare ups.
I am at a loss for words to even expalain the torture this desease is. It has affected my love life as i dont feel attractive to my partner though he has been with me for 7 years now and is supportive. I am more depperssed now because of the fact that I have a beautiful baby boy but due to the flares I physically can not give him the attention that he needs I am stuggling with SSD AND SSI because i cannot work being inthe hospital everyother week and now have no source of income besides family helping me.
I have always been dependent on my self and now i have to sit and wait for the goverment to tell me if i am disabled. I dont know where to begin to get my life back please if any one has any advice i am more then open to hear my e mail is claritza1980 -at- yahoo.com please help i want to be around to see my son grow.
Thank you for sharing with us. If any of our visitors have advice please email us or Claritza at the email address above.
"I came across your website by accident as I was researching to see if I could find any relief for my condition which has lasted for many years and I am finally at my wits end.
I'll try to be brief: I had major surgery when born then at age 2 then at 8 and have only 1 metre of small intestine left and that is strictured, but I managed OK until I was about 40 by ignoring the whole thing as far as possible. Following several bowel obstructions and gall stone releases, over the past 5 years, resulting in emergency hospital visits, I was diagnosed with Crohn's only last year having probably having had it for many years (I am now 56).
I can live with the Crohn's (I have to take azathioprin and related medicines) But I cannot live with the small lateral lesions abrasions/ fissures (?) either side just inside the anal margin, that I have had for about 15 years to my knowledge. They are not the more common posterior ones. They are small but incredibly debilitating, and seem to be worse since I was put onto this drug regime.(Prednisilone followed by azathiporin.My white blood count hovers just below 3 now.
Over the years I have been prescribed proctosedyl, lignocaine, etc, and I also take amitriptylin, and I have to have several warm baths a day to function. Now just use zinc oxide and castor oil which is as good as anything. (Doing nothing is not an option - I have tried!)
I am not constipated or have diarrhea (though if course I use to have the latter for many years before the advent of immodium and then Questran).
Could you advise me if, through your experience, you have any idea of what can help alleviate this symptom?
I hope that you can help me - I would be very grateful.If you would like to add my experience into your web site, please do so if you think it will help! As I said I ignored the whole thing by being positive for years but eventually the Crohn's 'got' me!"
Thank you for your story David. We didn't want to post your email but if you'd like us to we will. I will add a blurb to the home page and hopefully you'll get some advice from one or more of our visitors. Stay strong!
"I have already told my story here...but heres an update. Probably more for myself than anyone else. My name is Haley and I was told I have Crohn's Disease on May 16th of this year. I was put on predisone which was suppose to be for 7 weeks but now is continuing for 6 more weeks.
The predisone stopped working and so now they have me on Asacol...I have only been taking this new medication for a couple of days but at 2400 mg a day along with the 60 mg of the predisone I am feeling extremely medicated and I just feel lost. I am literally taking 13 pills a day right now...and if I saw progress I might feel okay about it but considering I have seen large amounts of blood 4 times today I am at a loss of why I am taking 13 pills a total of 2590 mg worth of medication.
I really would appreciate if someone...anyone would be willing to talk to me. My e-mail is hales8883 -at- yahoo.com. I am lost and confused on top of being sick and I would greatly appreciate someone to relate to. Thanks"
Hang in there Haley and stay strong! We will post something on the home page for you as well, and perhaps some of our visitors will contact you.
"I have a friend who has advanced Crohn's and has fistulas that have been leaking puss/poop for months and months. Dr.s wont see her due to insurance and that they say there is nothing they can do for her. I am desperately looking for help for her. She lives in the Renton, Washington area. I am sending her any medical or natural info for her. She is on disability and is very limited on her income but any info will help. THANK YOU SO VERY MUCH FOR YOUR TIME!"
SuAnn, let us know how we can help you. Also, send us an email and let us know if you want us to post your email so that others can help you out..
"Any information on yoga, its practice & its benefits to Crohns patients???"
I know that it has been very helpful for many Crohn's patients, as have many similar practices. Anyone want to provide more information about yoga? Please email us..
"A friend recently told me about this site. So far it has been very informative. I was diagnosed with Crohn's disease in September of 2006. So I have not had it for long. I have a question. Do over the counter drugs for colds and things affect Crohn's disease in any way?"
It depends on what medications you are currently taking, as it could cause interactions that negatively affect your condition. But to be sure, please consult your physician before taking any medications.
"I was wondering if you are able to tell the exact differences between IBS and Crohns. I have Crohns and they say I have IBS as well. After a resection they found an ulcer at the point of resection a year later but they say that the pain I have been constantly having is due to IBS. Can you give me any more info on this?"
Here's a good explanation that we came across...it explains the difference between IBS and IBD, which includes Crohn's and Ulcerative Colitis...hope this helps.
"Hi my name is Maria. I am 29 years old. I have been diagnosed with chron's two years ago. I probibly had it since i was 16 years old. I always ended up at the hospital. The doctors first believed it had to do with my gallbladder so they removed it at age 17.
I continued with pain and vomiting I looked anerxoic only weighed 89 pounds. All I ate was baked chicken and fish. Was only able to drink water. As the years went by I turned 19 got married and started a family. I had one boy and two girls. Few months after having my last baby. It all began again. I was 160 pounds. By six months I was 98 pound again. Lived in the bathroom i felt no energy to even stand or walk.
Thank god for my family that helped me threw it all. Now it has been every year i go surgery. I am tired at times but I have to keep strong for my wonderful kids and husband. I worry at times that my husband might get tired of everything we have to go threw. My kids are so beautiful cause they know to behave cause mommy doesn't feel good at times. But now I am going threw more tests cause pain,vomiting and blotting is back again. I am on prednisone and lots of pain meds.
I have to go for a ct scan tomarrow. And I hope everything comes out okay. I am very lucky to be able to take time off work when I mainly need it. Only cause I have a great boss and manager. I am luck to have great support from them. Even though I feel like am letting them down for not being able to show up for work. I hope this story helps many other people cope and understand what we have to go threw to deal with this disease."
Thank you Maria. I know your story will be very helpful to others!
"Hi, My name is Colton Alexander. I'm 16 years old and have been having all of the symptoms of Crohn's. It all started one peaceful day, when I suddenly noticed I haven't gone to the bathroom in 2 weeks, I thought well... that's strange, and just continued doing what I was doing.
And then a couple more days went by, I started freaking out, begging my parents to take me to the doctor's, to see what was up. At first they bought some laxatives for me so I took those and nothing was coming out! man, my pipes were seriously clogged. so the next day we went to the Doctor's told him what was happening, at first I, even the Doctor thought it was an impaction in my colon, so he directed my Mother to get some Magnesium Citrate (Saline Laxative)over the counter stuff.
Well I took that and it somewhat worked, water would come out but nothing else. And then finally on my 3rd dose it came out, it came out all right... in the form of loose feathery like stool. So we went back to the Doc's and told him that I was having pain in my lower right side, he diagnosed me with colitis and prescribed sulfasalizine, that stuff worked great! until I ran out, and started having more pain.
We went back after my bottle of meds was empty, told him I was still having pain, problems etc... so he decided that I should have an x-ray done to check for a blockage, if there was a complete blockage something would show on the x-ray due to the gas being visible on a standard x-ray. Nothing showed up it was negative. and then I was totally falling apart, oh man I was loosing weight like crazy not eating due to the pain, felt like throwing up, always tired I seriously thought I was going to die! when you think you're dying, man you don't care what kind of disease you have, as long as it isn't fatal, and by the looks of it, Crohn's isn't usually fatal. but seems to complicate your life.
Well.. anyways they had me drink some watered down barium to do a CT scan, I thought hey this isn't as bad as I hear everyone says it is, so enjoyed drinking my barium. Got the CT scan done and they found that the first part of my small intestine was inflamed, thick. They couldn't diagnose me with anything, because there really wasn't very much you could see. but anyways about a week ago had a barium drink, oh JEEZ that stuff is NASSSTTTTY, it can barley go through the straw! it's like sucking paint through a garden hose! but anyways I got the upper GI done and the test results are in, I have an appointment today, and I'm guessing this is the part where I get diagnosed with Crohn's...
I'm almost positive that's what the diagnosis is going to be. I'll keep you guys updated.
P.S Thank you for all of the information available to the public on this site! :D it's great, made my day. please excuse my grammar, I'm a little slow at some things." -Colton
Hi Colton, thank you so much for your contribution. If you would like us to print your email address so others can contact you let us know. Be well!
"I am a 28 year old male and a father of a 2 year old daughter. I have had Crohns disease and Cholitis for 5 years now. I have had 5 bowel resections, a Ostomy bag which thank God has now been reversed. I am a fully Licensed Gas Fitter and Oil Technitian who has had to give up on my job and am currently on disability.
I am in constant pain and I have had every test under the sun. My question is this, does anyone here ever had to deal with constant pain when doctors say there is no active Crohns?
I have been through the ringer trying to find the nature of my current pain and just recently I have been told that it seems there is some active Crohns. My Lymph nodes are enlarged in my abdomen now to sizes that have my doctors concerned. Would this be a source of pain? These enlarged Nodes? I feel I am fighting a ghost! People around me have no clue the torture I feel on a regular basis. I am a tough cat, believe me, I have gone through some nightmare recoveries from these surgeries gone bad and I am still here. I am wondering if others have been down this same road? I sometimes feel like I am trying to fight my opponent in the fog while they have heat sensory vision as their aid.
I am just so frustrated with diets not working and this is the first time I have said anything to a group type of environment. Thanks for letting me vent and hopefully you will have an insight to my situation. Thanks again! Jeremy
Thanks Jeremy. If anyone has any information to offer please let us know and we'll post it. As always, thank you for sending your letters. They are very helpful to many people.
If you would like to read more recent letters, follow this link to January to March 2007 Crohn's stories.
Or take a look at 2006 Crohns Disease stories.