Do doctors have a clue about this disease?

Dear all - I wish you all good health and its good to see so many familiar names on here.

Those of you that know me know that I have on here on and off with unclear symptoms and a new twist has just happened.... here is my story....

• In June 2007 I had bright red bleeding without diarrhoea and went to see a GI who said it was non specific colitis but not IBD and left me without medication. (Sigmoidoscopy)
• In October 2007 I went to see another GI and he said I had indeterminate patchy colitis as the biopsies were not conclusive of IBD. (Colonoscopy)
• In June 2008 I had black stools from a duedonal ulcer which then triggered my colitis.  I was diagnosed with Chrohn's Colitis. (Colonoscopy, X-Ray, MRI with Barium, Gastroscopy)
• In March 2009 I had black stools again from an Ulcer and H-Pylori infection. I just hope it doesn't set me off again but I think diet may be playing a big part in my symptoms.

This time though they did a capsule endoscopy which came back normal, and biopsies from my small bowel also show no inflammation. This was done at the leading St Marks Hospital in London which is the best in Europe for gastric disease.

My GI now thinks I might not have IBD after all and it is Colitis that is being made worse by Asacol. He wants to try me without meds and with VSL#3 which works amazingly for me by the way. I am scared to give up the drugs though as the problem I have is that I have an active patch of colitis on the right hand side of the bowel with the rest of the bowel in remisson - this was seen on the capsule endoscopy. I don't have bleeding from it as such and I don't get any symptoms from it. But surely leaving that patch alone will only make things worse and increase my risks of cancer in the long term?

The GI says that with IBD or Colitis it is best to treat symptoms and not get too bothered by a red patch in my colon as normal people often have some inflammation in the GI tract without medication... also does a lack of small bowel involvement make Chrohns "less likely" as the GI says?

Should I take his word for it? I am scared, and have been through a lot and many hospital stays with blood loss for the duedonal ulcers. My colitis or Chrohns isn't severre but enough for me to worry.

The GI I am using is in the Tatler top 10 in the whole of UK. The St Marks Hospital GI I just used is recognised as the best in London. So I don't think it is them as such, I just think that my diagnosis isn't clear.

LondonRed,
You sound EXACTLY like me...i am in the same boat as you, no true diagnosis but definitely some form of IBD. I went to 4 doctors trying to figure out what was wrong with me and finally my last doctor i went to is the best in the state and is well known for his clinical studies throughout the US. he ran every test possible (with same results as you) however treated me for an IBD with medications. He feels it is some 'sort' of IBD since I do respond to IBD drugs, however even though i dont' have true diagnosis he feels i should remain on them since they do help me (i get all the symptoms back when i am off of them). It seems like there are a few of us out there, maybe some day they will figure us out!

I've been through multiple gastro docs, including my current who is practicing at the University of Arkansas Medical Sciences hospital, which is a highly respected teaching hospital. I've yet to find one that could really help me all that much or could intelligently discuss probiotics and other therapies. The success I've experienced managing my UC has come through my own research and trial and error. IMHO, it doesn't hurt to get a second opinion, no matter how highly esteemed your current GI may be.

My diagnosis has been in question, too... was it UC or Crohn's? I have atypical UC symptoms, but the Prometheus IBD test indicated UC, so who knows? Ultimately, I decided the things that I've found most helpful - probiotics, dietary manipulations, omega-3 supplementation, etc. - are the same regardless of the diagnosis, so I no longer care what tag is applied to me.

I disagree with your doctor's advice to treat the symptoms and assume some inflammation is acceptable. I feel inflammation is not normal and should be addressed, regardless of whether or not you have overt symptoms. There are supplements that can help reduce inflammation and encourage gut healing. Diet also plays a role in controlling inflammation.

I do agree with your doctor that Asacol could potentially be causing problems. Many people have issues with it and, ironically, some of the common complaints are the very things we're trying to improve, like diarrhea. If you don't feel good about stopping your meds, why not ask your doctor for an alternate ASA?

Hello everyone,
I was originally diagnosed in Oxford ( England ) by a top doctor in this field -- even now other doctor's practically worship at my feet because I saw him !! Anyway the years passed and I was free of UC symptoms for 14 years. I returned to England ( from Scotland ) and was referred to the nearest hospital for my annual checkup. The consultant there told me I was cured and to go home , throw away the Asacol ( I was taking 3/day as preventative ) In fact -- says he-- I had been cured for 9 of those years. Well -- YES -- you've guessed it !! Almost a year to the day since I took that advice I had a flare-up -- luckily I followed a strict regime of many years ago and got it under control after 3 months,
. During these months I attended another hospital and the consultant there was gobsmacked that I had been so ill -advised -- so now I am back on those 3 tablets/ day and doing very nicely thank you. Been in remission now since mid - September and never looked back !!
Are there many we can truly trust ? Now I shall have my checkups at my second choice hospital and trust my own intuition too. Take care all.

UC is IBD. Colitis? I don't understand what "colitis" is?

IBD is an autoimmune disease. When the immune response is fully understood, a plethora of diseases will disappear.