Deciding surgery is your best bet?

Hello Everyone,

I was diagnosed with CD in 2002 (misdiagnosed in 2000) after several surgeries for abscess, fissures, and fistula. I had a colonoscopy attempt on Friday. This was the fourth attempt at a successful colonoscopy within the last five years. The doctor hasn't been able to screen me for colon cancer because the scope won't advance beyond my sigmoid colon due to a stricture. Last year after my GI attempted the colonoscopy she referred me to a surgeon who advised me to hold out. My GI has now made the same referral. She is really concerned about not being able to properly screen me. I fear having the surgery will worsen my quality of life rather than improve it if I'm left with a ostomy. I struggle with low residue diet from time to time and always have pain when I deviate from the diet. Its hard enjoying time with my friends who dont have the restrictions that i have. I want to feel better and want to believe that surgery will help. For those of you who have had the surgery... Did you worry about the risk of an ostomy?

Thank you.

I think you are the one who has to judge how much you are suffering. I would not do surgery just to screen for colon cancer. You are only 35 yrs old and the risk for cancer at your age is pretty low. If you are in pain all the time and the medications are not working, then you may be putting off the inevitable. I am concerned that the surgeon told you to hold out. Maybe getting another surgical opinion would be helpful to you.

Your quality of life after a resecition depends on how much they cut out and how good a surgeon you have. 

My cousin had a resection two years ago and they took 7 inches of small intestine and the valve and she has been in remission ever since with no problems, and with BMs 100% normal.  She wishes she had the surgery much earlier rather then listening to the GI who insisted he could solve the problem with humira.

She had a really good surgeon who didn't take more intestine then he had to minimize problems after surgery with BMs. The surgeon had a pathologist in the OR with him who was analzing samples of intestine as he was cutting so he knew he was not leaving any CD behind to flare up afterwards and also so he was not cutting out more than necessary.

To this day two years pots opt, my cousin is symptom free.  The only maitenance she is doing is taking pentassa and following the SCD diet. 

I would listen to your surgeon, but if you are questioning still, get a second opinion. For me, I didn't decide on surgery until I exhausted all other options. Now, if you have strictures that are caused by scar tissue, surgery is your only option. I was very ill when I had my surgery and was basically sustained on TPN for 6 weeks leading up to it because I could barely eat without severe pain. I was also on high doses of narcotic pain meds daily. My surgeon removed about 3 feet of small intestine but I didn't wake up with an ostomy. I was a little worried about it, but my surgeon and I discussed it and she ensured me that it would be a last resort decision and she would do everything she could to avoid it. I was in the hospital for 2 weeks recovering.

This was in September. I have since gained back about 30 pounds, am no longer taking pain medications, and can eat almost anything. One side effect I have from the surgery is frequent diarrhea because I lost so much intestine. Some foods don't seem like they digest at all - but I am actually absorbing enough vitamins still as most of my blood work is normal and I am gaining weight. I am frustrated with the D, but there are meds you can take for that and things seem to be slowing down every day. If I have a really busy day I just eat light because it seems like a meal will pass through about an hour later.

Again though, I would hold off as long as possible. For me, I was in and out of the hospital all summer and was severely malnourished. I tried upping my Remicade, changing diet, adding Prednisone, and bowel rest before I agreed to the surgery, and this was after meeting with several surgeons (including one at the Cleveland Clinic) who recommended surgery (what can I say, I am kind of stubborn). I don't regret the surgery, but do realize that this may only be my first (I am only 30) and worry about what will happen if I have to lose any more bowel down the road. All things to keep in mind and think about. And never be afraid of second opinions! Good luck!