• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My story with crohns

15 years ago I begun suffering with constant diahorrea, resulting in the Dr constantly prescribing Immodium for IBS. It was approximately 5 years ago I was away with my family when I begun feeling worse and worse ending in me being admitted into hospital. For what seemed like weeks of going back and forth into hospital I was finally diagnosed during a scan to having Crohns disease. This almost came too late as by then I had developed toxic mega colon due to the increased amount of Immodium and was rushed in to hospital as an emergency and it had now become life threatening. After a couple of weeks being on hydrocortisone infusions and daily x rays to monitor my progress , they decided to remove part of my bowel . A 4 hour key hole operation turined into an 8 hour complete operation which when i came too, had staples from my chest down and 4 drains hanging out of me ,an ileostomoy bag was also attached. After a couple of weeks I was able to return home on Christmas Eve and became very ill. After months of recovery I was able to get back to work , no sooner had I gone back to work then it was time for me to have my reversal.
This did not go according to plan and I developed a serious infection and I stayed in for 2 months ! Again all went well for a few months until I gave myself a hernia from some heavy lifting. i contacted my surgeon and he kindly performed the operation himself as he felt he knew me quite well !
Since that time I have been on prednisolone at different occasions. I regularly have B12 injections as I cannot absorb it due to my ilieum being removed during surgery. I drink 2 sachets of cholorestamine powder a day, Methotrexate , mesalazine granules daily , omeprazole and am about to embark on trying Imixiflab infusions beginning in a couple of weeks.
 
Wow that's quite a story. I can't imagine your shock at waking up after that surgery. How are your symptoms doing these days?

Welcome to the forum. You might want to check out the Remicade support area where there are lots of stories and Q&A about getting started with that.
 
Hi Shaun, thanks for sharing your story. It just goes to show that whilst we are all united under the "Crohn's" banner it can take each of us down completely different paths. I can relate first hand to many of the things you mention. I'm assuming the cholestyramine is for BAM. Along with the Remicade Support Group there is also one for BAM.
 
Holy moley, you've been through a lot! Hopefully the next year will be relatively uneventful for you!
 

dave13

Forum Monitor
Location
Maine
wow,shaun,hope things are going better. I can relate to the hernia after a procedure.Hope the infliximab works for you.Let us know how it goes.
 
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