Community Forum

Hi all! I'm 25 years old and was diagnosed with Crohn's disease in 2008. My disease is finally under control, as in, my blood tests look great and my inflammation number is under control (it was sky high about 6 months ago). About 6 months ago, I was put on humira, and clearly it has worked wonders. Before being put on humira, my doctor knew I had some scar tissue built up in my ileum. Well, it seems the healing that has occurred with my humira has added to the scar tissue in my ileum. My doctor thinks I have about a 10cm stricture that cannot be healed via meds and needs to come out (small bowel resection) to stop my symptoms (extreme - I mean looking 6 months preggers - bloating, loud gurgling noises, sharp pains after eating). 
So, my surgeon thinks that I CAN get the surgery if I WANT to, but if it were his daughter, he'd tell her to keep living until she can't take it anymore. I think I'm already at this point, I take miralax 3-4 times/week and mineral oil almost daily to help things pass through the stricture.
Am I crazy to WANT surgery? I'm 25 years old and I want to eat whatever I want and live like a 25 year should live. My disease is under control, it's just the matter of this scar tissue, and according to the surgeon, without it, I'd live normally for what would hopefully be years. Should I make the decision to go ahead and have surgery while I'm healthy, or wait until it gets too bad and it's essentially an emergency situation? Either way it's got to come out (according to my doctor and surgeon) it's just a matter of when I'm ready/need it.
Crohn's Meds:
8 pentasa daily
humira shot every other week

 Reply posted for pirategirl.

I have had a very similar situation and could not take the bloating, the loud embarrassing gurgling and the discomfort. I was able to have bowel movements though. It has been 5 years now since the surgery and I am feeling good as far as this problem. I did not need a temporary bag or anything like that. I do not have much of my colon left, but that does not seem to be a problem. I eat whatever I want unless it bothers me. The only thing after surgery you may start getting fistula's and Perianal abcess's which I currently have and have had for 3 years. Cannot get them to heal up and go away.I know how you feel and I said to my self if I ever had those symptoms again, I will not wait to have it taken care of.

 Reply posted for pirategirl.

hi, i completely understand you to every degree i am also 25 years old, i was having problems with my bowel for a few years before i got diagnosed and every time the docs told me there was nothing wrong, when i ended up collapsing in my house and ended up in the A&E the doctors finally realized something was wrong i was admitted in to the hospital for 2 weeks and was then discharged upon waiting for biopsy results to come back, in January 2011, 3 months after my collapse i had the diagnosis crohn's disease since this day i have been researching the disease the development of medications and the progression of the disease, now 1 1/2 years in i have tried all meds with no relief while i was on humira i had a very bad exacerbation and got a very serious infection in my lungs, my GI stopped the humira as it was causing joint problems and creating purple marks on my skin combined with a rash and pain, it is now clear i have crohn's arthritis aswell, when i last spoke to my GI she set up a appointment for me for a new CT scan as she feels i have a stricture, but she stressed it is very serious for me if i needed a operation as  my crohn's is present throughout my GI tract, meaning my large and small bowel, colon and stomach, she feels now surgery is the only option but only on the condition that they find a complication from the disease.it was realized last year in December when i had a CT i had already showed significant narrowing of my ileum due to scarring and of my transverse, ascending, and descending colon, i have not yet had a day of remission since the day of diagnosis, and living in Cyprus is starting to bring it all home at how difficult it all is because the do not allow elective surgery here. my one and only wish like you is to be able to get rid of the bad and get on with my life with my family like a normal 25 year old, to beable to life in the pleasure that life has and what i have been missing out on.kiri hu