Do doctors know anything about this disease?

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LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 3/11/2009 7:09 AM (GMT -7)   
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.


Diagnosis Oct 07 and then Aug 08: Inditerminate Colitis currently under some. Current Medication: 500mg Asacol Suppositories, 800mg Asacol Tablets x 2 a day.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/11/2009 11:08 AM (GMT -7)   
I'd say you saw 2 GI's that are pretty useless in my opinion...patchy inflammation (regardless of where it's located) is crohn's and you can have crohn's affecting your colon only and not your small intestine (or anywhere eles) and that would still make it crohn's (as you said crohn's colitis, which is what I also have)...asacol isn't a miracle drug for many, I myself am extreamly allergic to it and for many it does make symptoms worse.

You should go by your symptoms, if you feel your symptoms are bad enough then try another med, maybe Imuran which like asacol is targeted to reach the colon that is affected with inflammation. You may simply be a mild case of crohn's but that doesn't mean it's not crohn's just because you're mild.

Crohn's can affect any part of the GI tract at any time and more than one area at a time as well, UC is limited to the colon rectom and with UC more often than not the rectom is involved and UC is not patchy but instead the entire area will be inflammed with no skipped patterns of inflammation (patchy) as it is with CD.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/11/2009 11:50 AM (GMT -7)   
I currently have Crohn's Colitis, too. Patchy areas just within my large intestine...ulcer here, good intestinal tissue there...2 ulcers here, another spot of healthy tissue there...

The Crohn's has not yet (and hopefully never will) affect my small intestine. But I was still diagnosed with Crohn's based on my extra-intestinal symptoms and my bloodwork and the patchy, bloody ulcers in my large intestine.

Have you had the bloodwork that tests for IBD markers? I'd be a bit nervous, too, about getting off your maintenance drug. I take Colazal, which is pretty much the same as Asacol (I actually take the generic of Colazal) and it seems to work well for me.

I know how you're feeling, though...lately my brain has been hurting wondering if anyone, including GI's, REALLY knows much about this disease. There's always conflicting reports...like do we have overactive immune systems, suppressed immune systems or immune systems that just aren't working the way they should? It's frustrating...

PB4, I'm glad you mentioned that about Imuran...I didn't realize that drug was similar to Asacol.


Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/11/2009 12:41 PM (GMT -7)   
Yes, Imuran also targets the colon and is suppose to help with inflammation.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 3/11/2009 1:04 PM (GMT -7)   
Imuran works on the immune system, it's not a topical med like Asacol.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 3/12/2009 12:49 AM (GMT -7)   
I think my issue is I feel well, the biopsies come back inconclusive, the blood tests are always good, and I have no diarrhoea of other symptoms. Only blood with my formed stools. Obviously there is inflammation in my colon but does inflammation mean IBD?

Diagnosis Oct 07 and then Aug 08: Inditerminate Colitis currently under some. Current Medication: 500mg Asacol Suppositories, 800mg Asacol Tablets x 2 a day.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/12/2009 9:08 AM (GMT -7)   
London, I wonder if you can do the promethous test? I think inflammation of any kind is something you keep a sharp eye on.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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