From the article: The Differences Between Ulcerative Colitis and Crohn's Disease
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
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
Gallbladder Surgery
- 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
Genetics?
- 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
UC For Me
- Everyone has just about the same response. It is so odd that this is going on. I got really sick and went to the doctor. He just said I was too stressed out, put me on antidepressants, and gave me a script for my migraines. He actually acted like it was all in my head. I was devastated. I am a single mother of 2. My children lost their dad to a motorcycle crash. Well, I was getting sicker and started running a fever, vomiting, and diarrhea. My lymph nodes was swelling, I could barely walk so after 2 agonizing days I finally drove myself to the ER. They got me right in and ran tests as they thought my appendix was about to pop. Wrong; after the cat scan they put me on 2 different antibiotics and Phenergan to help with vomiting. They then told me that something was wrong with me and I should get into a specialist for a colonoscopy because all of my lymph nodes were swollen around my colon. I was frantic. Well, I had it done and they took biopsies and diagnosed me with ulcerative colitis. I had to stay on antibiotics for 30 days then they changed it to prednisone then back to antibiotics and it finally went into remission. Now 3-4 months later and I am flared up again and my kidneys feel like they are going to pop out and pain is shooting down my right leg. So, I went to doctor today and it is flared up again. More nasty meds. I am just ready to be back to normal. How can we ever get back to normal? I’m 33 and my babies are my whole world. I just want to be better for them and I am scared of surgery. Who wants to wear a bag?
- —uc.cora
Crohn's -- Not Stress!
- I suffered with the symptoms for about 2 years. Two doctors told me it was stress related and I didn't agree. The even put me on antidepressants and that actually made it worse! Eventually the one doctor gave up and send me to a specialist who did the colonscopy and found out that it was Crohn's disease. I have been suffering for 4 years now and have lost 10 kgs and now only weigh 35 kgs! I found out if I eat maize meal first and then other food stuffs it seems to control it better. I can now even eat a simple apple but it must be peeled first. Fruits can also only be eaten later in the afternoon it seems to upset the stomach if you eat it early in the day.
- —Kakerlak
UC For The Long Haul
- It took 8 months of "is it a parasite?" and "How's your diet doing, are you stressed?" before a competent doctor sent me in for a colonoscopy. I was diagnosed, but no western medication, diet, fad, faith healer, or witch doctor has been able to provide any relief. I'm moving into the 4th year of this flare and I must say, the second half of diagnosis where I would wake up in the morning and ask "am I dying of some undiagnosed cancer?" was the worst bit. Remicade helped, and gave me a week of near-remission, but as the dosages have been adjusted over time I'm finding it less and less effective. If you, or someone you care about or even just know, has the runs for weeks on end get them to a doctor! If I'd been treated sooner this might not have become permanent.
- —Guest Andy
First Diagnosed With Depression
- I was ill for months and was told I was suffering from depression! I was eventually admitted to hospital for a blood transfusion as my blood count was only 5.8. (women should be between 12 - 15). In hospital I was diagnosed with Crohn's Colitis (in large bowel). That was 11 years ago. Although, after 7 years of steroids I still have to adapt my life round the Crohn's, I cannot go out early and still need to run to the loo at a moments notice. But, if this is how it will stay then I am happy with that. When some of you talk about remission, do you get a complete ceasation of symptoms? Toilet habits return to pre Crohn's days? And no need to find a loo post-haste? I ask this as I have never found this to be the case myself. I still get pain and have a perianal fistula that is open.
- —Guest Lisa
Need advice
- I was diagnosed with UC at the age of 6. I was put on Azulfadine up until the age of 18. Had flares up off and on, but nothing serious. When I went in for a re-fill of my medication when I was 18, the doctor took me off of Azulfadine. All he said was that "research is starting to show that sulfur drugs wear down other organs in the body." He put me on another medication, not sure what it was, but my body didn't adjust to it well. Ended up in the hospital, two blood transfussions later I had to have emergency surgery to have a colectomy. They made an internal pouch with the ileum. Nine months later, I was put back to normal. Two years later I developed a fistula. I had to have the bag put back on. Now, at 31, the doctor said the internal pouch is inflamed and it must be removed or I have a high chance of getting cancer. I feel fine now, just don't want the bag permanently. Can't see having a major surgery when I feel great.
- —Guest UC since age 6
It's Baaack!
- I was diagnosed about 13 years ago with CD. I had horrible pain, diarrhea, cramping, gas etc... After having a colonoscopy, tissue samples and bloodwork, I was diagnosed. It eventually went away and I truly forgot about it over the years. In the last 6 months, it's been creeping back in my life. I have had horrible diarrhea (up to 18 times a day), pain, gas, and mucous. I had been to the doctor about 4 months before the recurrence and they had tested me for Crohn's because of some joint pain I was having that was unexplained. He asked me if I was told I had Crohn's. I was so surprised. I really thought maybe the doctor had misdiagnosed me 13 years ago. Well, it's back. I will likely call a gastroenterologist this week and try to get in. I'm oping it will pass quickly and I have another 13 years of remission.
- —TampGirl
29 Years With Crohn's
- I was diagnosed with Crohns when I was 17. Am now turning 46. Twice it has flared up -- at the onset of diagnoses and then several years later about 6 months before my wedding. Now 20 some years later, it appears to be flaring up again. This time I am not experiencing any sort of stress. Usually I can control my symptoms with my food intake. But what was once my normal eating habits are causing this uncomfortable feeling and locating the restroom a necessity. I have a doctors appointment scheduled. Best of luck to all...
- —Guest Debra
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