Diagnosing inflammatory bowel disease (IBD) -- Crohn's disease and ulcerative colitis -- can be tricky business. IBD has symptoms that are similar to many other digestive diseases and conditions. In some cases it may be difficult to know exactly what is causing the symptoms, and another condition may be suspected before you receive a diagnosis of IBD. Share Your Story
Which is worse?
- When I was 12, I was diagnosed with a really bad case of Ulcerative Colitis--one of the worst they've seen. (They were pediatric gastroenterologists, so they don't see many UC patients; so it's not as bad as it sounds. Still pretty bad though.)
Anyway, when I was diagnosed, it was at a good time too. I was at an all-time high risk of needing a blood transfusion after being diagnosed with severe anemia. I still get stomach pains, flare ups, and bloody stool--I'm 14 now and it sucks to have to take suppositories every night and pills 4 times a day. I don't enjoy the side-effects that come along and I've never actually met anyone else with this disease.
Which disease is worse? Crohn's or UC? Like, medically, not in anyone's opinion.
- —Guest Molly May
Learn to Deal With It
- I've have CD for 24 yrs now and told 2 yrs ago I have colitis as well. I have tried every med out there. I had 4 surgeries so far, folks it don't get better take advantage of your good time. Figure out for yourself what foods you can and can't eat. I was misdiagnosed for 3 yrs and the best they told me it was all in my head I was making it up for attention. I deal with pain everyday some days a lot worse then others. I just try to do the best I can. You will also find out people don't believe you're sick 2 divorces later. People don't understand what it is to have a chronic illness and be in pain always. Even your own family but unless you're ill you won't understand. It may sound depressing but people you're all on a long lonely painful road. Good luck everybody.
- —Guest john
24 years of misdiagnosis
- All it would have taken was a simple genetic blood test, I was told for years that it was IBS and gastritis, I have been put on every single stomach med out there, nexium, zantac, prevacid etc, etc and nothing helped.
Now 24 years later they tell me that I have IBD. I am scared because I don't know what to expect. Ever since I had my Gall Bladder out I have been in severe pain in my right side under my ribs going around to my back for months, white blood cell count is up. Glands swolen. I feel that they misdiagnosed me all along, I can't eat without bloating like I am 12 months along.
- —Guest Heidi
It Wasn't C Dif!
- Four years of horrible left side pain, severe cramps, diarrhea. Diagnosis C Dif 1 year later. New Dr. and colonoscopy biopsy reveals UC. Meds are helping a lot! Too bad it took so long to get a real diagnosis because I was so ill for so long!
- —Guest mother
Still Don't Know Which Form Of IBD
- I'm still stuck in a debate between UC and CD - it took 3 long hard yrs to figure out it were 1 of the 2 or combination of both. I show symptoms of both! Treatment is complicated because I have alergies to anything with a asprin base or MD5 strain, so I am currently only on Prednisone which seems to do the trick - not for the long haul though - I'm on and off the preds regularly and that in itself has it's own effects which sometime I find hard to handle. I have found though that eating a yoghurt every day enriched with pro-biotics definitely relieves the aches and pains and bloating. Good luck all of you out there - at least we are not alone! :)
- —Guest Jen
Still No Diagnosis
- I have been to E.R. four times 5 different diagnosis: pancreatitis, gastrenteritis, severe bacteria infection in my intestines, then told either I have ulcerative colitis or Crohn's disease. Trying to find M.D. to refer me over to G.I. doctor to have a colonoscopy to figure out which one. Thanks I have gotten more help from this website then 4 trips to E.R.
- —Guest Jamie
Spastic Colon, Lactose Intolerance
- I was told I had spastic colon, then lactose intolerance, then chronic fatigue syndrome with irritable bowel syndrome. I also had a doctor who wanted to test my stool for parasites. The interesting thing is that intestinal parasites might actually *prevent* IBD. There's research going on now. Look up "helminthic therapy."
- —Guest Helminthy Fresh
UC For A Long Time
- I am 18 years old and decided to look ulcerative colitis up online. After being misdiagnosed with lactose intolerance and amoebic dysentry the doctors at UNC finally figured out I had UC. I've been living with this since I was 10 years old, and I absolutely hate it. I am pretty stable right now, but I see the medication as a crutch. I've tried weaning myself off my meds (I'm currently taking Azathioprine and Mesalamine), but it never works no matter how delicately and patiently I try. I became dangerously anemic with my most recent attempt. Eventually, I will come to accept the fact that I have this disease for the long run. It is a chronic disease after all. As long as I remain stable, I suppose I have nothing to complain about. I'll always be looking for a way to get better. I refuse to believe I'll still have this when I die.
- —Guest Guest Tom
5 Years and 8 Doctors Later...
- So I just found out that I have IBD -- it's just an initial diagnosis as I haven't seen a specialist yet. But to have something solid to treat is amazing!
In the last 5 years I have had days where I am in so much pain and vomiting so much I can't even leave the toilet. I was told it was all to do with my Gall Bladder (which I had removed with 50-150 stones in it) and I thought, YES it's over! But It wasn't. The next week I was rushed back into hospital with what they thought was a complication to the surgery - fever, pain everywhere and a really high blood cell count.
I was so white they wouldn't even let me walk to the bathroom. But they put it down to an abcess forming where the gall bladder was removed. I felt no better.
I have had so much pain, and I know where every bathroom is within a 5 mile radius, and I was told it was all in my head.
Then I met the most amazing team of Docs in Hamilton, NZ.
My advice is be persistant. You will find your problem!
- —Guest Chelle
- My son started having symptoms at age 5, and for years we thought it was anxiety. He's been to many doctors, and was given a colonoscopy in 2008. He has had his gallbladder removed, and they nicked his liver and he had to stay about 2 wks in the hospital. A few months ago he was told he had a hernia and was sent to a surgeon that stated he did not have a hernia, and wanted to do a colonoscopy. He did a biopsy and we finally found out he has ulcerative colitis. I'm wondering now if the gallbladder surgery was even necessary. At least now we have a diagnosis, and an appointment with a gastroenterologist.
- —Guest Judy_01
It's "Old Age"
- Thirty years ago I had gall bladder removal. This left me with diarrhea as the norm. Since then I've had a hysterectomy, bladder sling and GERD. Now 56 this year in fair to good health -- I thought. Went for a check-up and filled in the same areas as the past and was told I needed a tetanus shot, mammogram, pap smear, bone density test, colonoscopy and upper GI. (All the over 50 tests.) That was February 2011, with no signs other than excessive gas (which I contributed to diet). I waited for the appointments. In less than 8 weeks I started to experience sever rectal bleeding, watery diarrhea, cramps and fatigue. Finally in April I was diagnosed with UC. Prescribed Rowasa 4G, acid inhibitors and Tylenol. All info I have on UC is web-based. Now taking Vicodin for the constant throbbing pain, eating a low fiber low residue diet, sleep 3/4 a day, run a fever & chill constantly, cry and rant daily and don't understand how this happened to me. My next appointment is in 3 weeks.
- —Guest Janet
Cancer And Diverticulitis
- Yes, doctors found tumor/cancer in my ascending colon (right side) during a routine colonoscopy. I went in for colon resection surgery, but when I was recovering I was told that I got two surgeries for the price of one. Apparently the surgeon saw diverticulitis in my descending colon and therefore I now only have 1/3 of my colon. On my descending I have Crohn's disease and ulcerative colitis. Upon investigating the cut on my descending colon, the surgeon started the procedure on the wrong side and had no choice but to section where the tumor was (right side). It's hard enough dealing with both Crohn's and UC and now I find out also proctitis with only 1/3 of my colon left.
- —Guest DIANA
- My Dad was diagnosed with UC in 2007. It was just a few months before they had to remove his colon and he had to adjust to life with an ostomy bag. It was scary and painful to watch him go through this, he almost died from malnutrition. He had diarrhea so bad, was weak, and lost a lot of weight. Now life is back to normal again, he is happy and getting fat from all the foods he had learned to avoid but can now enjoy.
Fast forward 2 years and on the 4th of July 2009 I was admitted to the ER for severe abdominal pain. They thought it was my appendix but after a CAT scan send me in for a colonoscopy. Turns out I have CD. Three months later my sister (just 2 years younger) was diagnosed with CD as well. What baffles me is the symptom differences: She had diarrhea, didn't respond to repression meds, and lost weight. I had nausea, gained weight, had sharp abdominal pain, and have happily been on Aciphex (for Acid reflux) and Asacol (for Crohn's) since then except when some foods cause nausea or pain.
- —Guest Christina
Misdiagnosed By Navy!
- I was in the U.S. Navy when I was 1st misdiagnosed in 1992. I was told it was gas, and told to take Gas-X. I was having painful bowel movements 3-5 times each day with diarrhea. Later, after I kept going to sick call, I was given Simethicone.
After being discharged for “other physical and mental conditions,” I had taken 56 Tylenol, I was misdiagnosed again at Millington Naval Base with IBS after an Upper & Lower GI and an Upper Bowel Series where I was folded, spindled, and mutilated, or so it felt.
Finally, in 1997 under TennCare, I was sent to a GI doctor who did a Colonoscopy. There it was plain as the sun on a sunny, clear day: Ulcers and Inflammation on my Intestines. I was told I had Crohn’s Colitis. I went through a few bouts with Prednisone, including a 16-month period. I have edema now, and am on Remicade. I would like to teach EFL in Korea but I cannot go without my Remicade. BTW, I was in the U.S. Navy for less than 24 months and have been turned down for benefits.
- —Guest kstenbch9
Misdiagnosed 5 Times
- I am 23 and have been suffering with all sorts of symptoms since I was 19. I got told by a doctor 3 years ago that I had IBS so I went home and listened but checked myself in hospital a few months after because I had got a lot worse. After waiting 7 hours in A+E, a doctor told me I was suffering severe constipation. I told him that was not true and I wanted a second opinion. He really talked down to me and said if I did a test on every young girl who complained of stomach ache it would cost a fortune. A surgeon saw me and said keep her in, it's appendicitis, so they prepped me for that. Next surgeon said I had two stomach infections and my bowel was swollen over my appendix so they couldn't remove it for two weeks. After I felt a bit better so I got told I had IBS again, which I argued with. Then, after looking at all of my symptoms and talking to lots of doctors, I had a test for endometriosis, wrong, now I find out I have ME, CFS, and CD. I think they missed something.
- —Guest Hayley