Saturday, September 10, 2011

Small Bowel Resection - 1.5 Years Later

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.

14 comments:

  1. I'm so glad you are doing well after your surgery. I had a very good experience with it as well and am so glad the option was chosen. It's been five years now for me and I'm still off medication and haven't had any major issues aside from the B-12 problem, but that was my fault. I hope things continue to go well for you.

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  2. Thanks Will!
    Yeah, I've been taking B12 vitamins ever since my surgery.

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  3. I'm really glad to hear that you have been doing well after your surgery. I realize that you made this decision to be drug free. I just wanted to say, that I've found some great information on recent clinical trials that are focused on improving treatment for crohn's.

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  4. Hi Stephen! Trials regarding improving drug treatments? If you have more info it would be great if you can share it with us. Maybe a link to an article?

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  5. this story melted my heart!! i just went thru a bowel resection in my small intestine will be nxt month a yr ago!! it really changed my life around!! more energy & happy & feeling so wonderful everyday!!! :) im so happy for you!!!! :)

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  6. It's nice to hear success stories about
    this. I had a bowel resection in 1990. Unfortunately this area is now the main site of inflammation and my CD is worse than ever. I don't regret the surgery- after all it could have worked!
    I hope you stay well.

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  7. Just wanted to say thanks for the really great posts! I am also quite interested in learning more about new treatments for crohn's disease. I would be happy to share any articles that I find on the subject with you!

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  8. Reading all the posts are incredibily interesting. I was diagnosed in 1982 and it has been an amazing journey for me, our family and my job. Thank goodness I was so young when diagnosed I rolled with it right away. However, I was misdiagnosed for 5 years prior to my diagnosis (I finally ruptured and was a very sick young girl); so when I was pitched back and forth for 5 years and ended up in the ER for the 9th time in 6 months - the doctors in the ER said they would admit me if my doctors didn't. I had emergency surgery and three more surgeries and am about to have my fifth surgery. My last three surgeries were due to scar tissue and i must say I believe that it is worse than Crohn's - way worse. You don't get used to pain but you learn to accept it and you don't get used to surgery but you learn to accept it. Also, from the get go I knew this wasn't my famiy's or anyone else's problem. People have illness that they deal with I think Crohn's is more of a bother than anything else. I live a great life with a few bumps but my family, job and friends are over the top supportive. More times than none i can get over a flare up without too many people even knowing. Oh, btw, I am not embarrassed of CD but it is no different than diabetes or any other disease - it's something you can deal with and it is your attitude that gets you through - sometimes surgery and sometimes a visit in the hospital. I usually good for about 7-11 years in between surgeries and feel LIKE I NEVER HAD IT AT ALL BUT it rears its ugly head (no pun intended..LOL!). I have used the disease too - I figure i might as well take advantage of it since it isn't curable - one example is at a pro baseball game i had to use the facilities and i broke in line and said "please let me go ahead of you, I have Crohn's disease." I went in and really only had to urinate but noticed people waiting wouldn't use my stal...I laughted to myself and thought oh, well, i just emptied all the fluid!! So, with that I wish everyone the best life and I'll be checking in now and again....Theresa

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  9. Thanks for sharing your story Theresa, and for reading!

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  10. I really appreciate your blog, too! Have a great weekend...oh, if you don't mind saying a few prayers for my cousin. She is in the hospital with a pretty tough flare up and trying to get it under control. thanks, again...Theresa

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  11. I love your blog! Thank you so much for writing it! I also have Crohn's and got the news today that I am going to have to have surgery. I really wanted to hear how someone is doing after surgery expectantly the med part because I am also wanting to have kids in the future. Thank you again for sharing your story.

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  12. You're very welcome! My son is now 1 and we are contemplating a second pregnancy. Still feeling pretty good and taking only Salofalk which I plan to stop taking once I am pregnant. Other than that symptoms are mild and my pregancy went pretty great. Still happy with my decision.

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  13. Thanks for your blog. I am just about to undergo a small bowel resection too and I am so nervous but this is really reassuring. Cheers

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  14. Thank for all the post they are very reassuring. I have had Crohns since July of 2000. I will be having surgery in the coming months and most likely have 12 centimeter removed at my TI. Never had surgery in all this time but was just released from the hospital after a week and had to come home with a drain in for an abscess. Since my bowel is healthy other then the one spot docs seem to be optimistic that I could get a long time symptom free. Thanks again these are encouraging.

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