A year and a half ago I had about 30cm of my terminal ileum (small intestine near where it attaches to your colon) removed due to severe inflammation and damage from my Crohn's disease. This section was causing me pain, chronic diarrhea and had started developing fistulas. After discussions with doctors and weighing the options I decided on surgery rather than stronger drugs, because I wanted to be drug free and feeling well when I started a family.
Well here I am a year and a half later. I feel wonderful, energy level is up and I can eat almost anything except dairy and very spicy foods. I'm currently on no medications. I consider the surgery to have been a success and I'm happy with my decision.
I am left with a "C" shaped scar hugging around my belly button and two other tiny ones due to the insertion of the cameras - the surgery was done laproscopically. I also have a separate scar where an abscess was repaired. These have healed well and while my stomach will never look as nice as it once did, I consider my scars to be badges of honour, reminding me of what I've been through and how lucky I am. I'm not ashamed of them at all.
I don't experience any daily pain related to my Crohn's. I sometimes have little twinges that spark old worries but that's usually when I've been eating a ton of high-fiber foods (or beef). I seem to be extra sensitive to the goings on in my abdomen - though I think all of us with IBD are much more aware of what's happening in that zone. With my current pregnancy things are stretching and shifting causing all kinds of new sensations so it is now hard to tell if a twinge of pain is from Crohn's or the growing baby and the muscles surrounding it. I'm leaning toward the latter since it occurs on both sides.
I'm happy with my decision because in the last 18 months I've done so much without needing drugs - went on a cruise, got engaged, bought a house, got married, and became pregnant. whew! This would have been a much less fun journey if I was still in pain or on a restricted diet. I have also left the infusion type drugs as an ace in my back pocket if my IBD comes back. My doctor and I are now aware of what's going on (instead of shrugging it off as IBS) and I can get right in for the appropriate tests if I notice any new diarrhea, pain, or other symptoms I know so well. My hope is that if and when another flare-up arrives I will be able to catch it before it does as much damage as the last one did.
It's not recommended to take drugs like Remicade while pregnant, and if you stop taking it you can develop an immunity to it. So I'm glad I chose surgery and saved this option for the future, ideally after I am done having children. Hopefully I'll never need it, but the option is still there.
The experience of the surgery and recovery was intense and sometimes difficult. There was also no guarantee that the inflammation would not return immediately after surgery in the same location. However my last colonoscopy showed everything looking pretty good so I am going to live life to the fullest, eat healthy foods and stay positive.
If you are considering surgery for your IBD, talk to your doctor and to a surgeon before making the decision.