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Crohn's Disease Forum » Your Story » Crohns with Ileostomy, still no improvement - Help please


08-25-2016, 10:13 AM   #1
rahul0929
 
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Location: Pune, India

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Crohns with Ileostomy, still no improvement - Help please

Hello all,
I am 63 years old and based out of India. I am in acute pain, a rather long story is below.

In July 2003, I had acute uncontrolled diarrhoea. Initially it was diagnosed as inflammatory bowel disease and stress induced diarrhoea. I struggled with frequent high fever, weight loss, diarrhoea, and vomiting and medication up to 2006.
In 2007 upon being referred to CMC Vellore I was diagnosed with Crohnís disease. For a year I was treated with Azoran, Prednisonole, Prothecia, Ome prazole. In 2008 I was administered 3 doses of Remicade. I was back to normal upto 2 years. But again symptoms reappeared. I had to take Remicade (3 doses) for 3 years.
But I still suffered from same symptoms, low bone density, cardiac problem (heartbeat is only 40%) fistulae and abscess in anal and vaginal region. The doctor treated the anal fistulae by de-roofing of abscess and fistulae. Doctor prescribed Budez since Azoran didnít suit me.
In July 2015 I lost strength in rectum and also suffered from too much pain and bleeding. My surgeon took the risk of conducting ileostomy in spite of cardiac issue as the pain was worsening and to give rest to rectum for at least a year. He also prescribed exemptia injection (3 doses). It was not effective. I still have acute pain, too much swelling, and wounds in peri-anal region. The doctor has prescribed metrogyl and ciplox for one month. For my heart condition I take Lenoxin (1/2 tablet).
Since the doctor said the only option now is to go for steroids (as they cannot remove my rectum owing to my cardiac condition) I have now opted for Ayurvedic treatment. I still suffer from uncontrolled anal discharge and lack even basic strength to stand.
Is there any other way forward?
I have heard about Humira and would like to explore that with my doctor. Please share any more information related to patients with Crohns and ileostomy.

regards,
Madhu Sinha
08-25-2016, 12:44 PM   #2
ronroush7
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I am sorry for all you are going through. You might try reposting in the surgery section.
08-28-2016, 10:01 PM   #3
wombatgirl
 
Join Date: Aug 2016
Location: Townsville, Queensland, Australia
Hi

Have you tried getting tested for MAP (Mycobacterium avium subspecies paratuberculosis)? I read somewhere that (I think it was Dr Chamberlain) said that often in cases of crohns where there are fistula, it is MAP. I myself recently got tested and was positive (I also have just developed a fistula, though I didn't know about that connection when I got tested). John Aitken of Otakaro Pathways in NZ did my testing (you fedex a blood sample over).

I also had an ileostomy (that was eventually reversed), previous to the MAP diagnosis.

Incidentally, remicade has some anti-MAP activity, though it is generally treated with antibiotics.
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