I have had Crohn's disease for 46 years. My colon was removed 36 years ago. I had a temporary ileostomy, and anastomosed to what is left of a small portion of sigmoid colon. I have a stricture
that keeps bothering me. I have to have a balloon dialation every 3 to 6 months. I am currently taking triminclone, azathrioprine and asacol for the crohns, but my doctor said I should start Humira if I keep having trouble with this stricture
Hi Pat, my situation is not entirely as yours, but may be of some help - even if only talking to a Crohnie, of some 40 yrs!
Except for the initial laparotomy to diagnose my Crohn's, when I was 25 yrs old, I have been able to stay surgery free until this year, when CT and MRI scans, colonoscopy and endoscopy showed I had multiple strictures
in the small intestine, and severe ulceration and abscesses in the colon. My wonderful gastroenterologist referred me to a youngish Consultant gastro surgeon, (the only one he will let operate on his Crohn's patients) who recommended a right hemi-colectomy. I had the last part of my small intestine and first part of my colon resected and although I was in ICU for 3 days, then High Dependancy Unit, and ultimately a private room on the gastro-surgical ward, being an in-patient for 2 weeks, the wound healed perfectly, as did the anastomosis.
I was led to believe I would not need my weekly injections of methotrexate and would probably go another 10 yrs before further surgery. I am under no illusion that there is a cure for Crohn's.
However, although I did seem to put on a little weight, I still had severe faecal incontinence, and 4 months later was hospitalised with a severe flare - ulcers and abscesses from anus to mouth. My gastro recommenced the methotrexate injections and started me on Remicade. I understood this was just to be a 0, 2, 6 weekly regime and then stay on methotrexate. I did not get any better and was hospitalised again 6 weeeks later with severe abdominal pain, incontinence etc. They did a CT scan as they hypothesied there may be a leak around the anastomosis. To their, and my, surprise, they found I had pancreatic insufficiency, a rare complication of Crohn's. I was immediately started on Creon enzymes, and improved dramatically, so instead of 2 weeks in hospital, this was only 5 nights. I have put on 3 lbs in the last 2 weeks, which is a quantum step forward for me, as I still only weigh 103 lbs, but at least I am not losing weight. I have jusy had my 4th infusion of infliximab, and I understand I will have this on an 8 weekly basis for life.
My gastro does have some of his patients on Humira, but he is almost paranoid about prescribing it for me, as he was infliximab (the lesser of two evils he said), because I had breast cancer 7 yrs ago, which had spread to my lymph nodes and of course, both of these anti-tnfA drugs can, and do, cause lymphoma.
I did ask both my gastro and surgeon if there were any meds that could cure the strictures and they both said an emphatic no. I also asked about stricturplasty, in stead of resection, and again they said this would only be a very temporary solution. In the end I felt I had to go along with their advice - they are both highly respected in their field in England and I trust them implicitly.
It will be interesting to see what other responses you may get.
Let me know if I can help you any further.