Help...Bowel Resection Surgery next week - Decision????

Hi,
My first visit here. I am just newly diagnosed (It took them 2 years to diagnose me) I am a 56 year old woman. I have been struggling with cramping, gas, ++bleeding pain and diarrhea and severe fatigue since Dec 2010. I had been complaining to my Doc for months that I was feeling very unwell but no one took me seriously. Finally I ended up in emerg after passing out and injuring my ankle. My HGB was at 74. I finally got a referral to the GI Doc, and had my first scope. I had a nasty area of ulceration in the sigmoid colon. I had biopsies done. I was put on salofak enemas nightly for a year. I kept telling the Doc it was not helping and that my symptoms were getting worse. I was advised, "you do what I tell you to do,Do the enemas and you will be ok. " I saw the specialist many more times but no one seemed to think my symptoms were very serious. I was beginning to think it was all in my head, although I knew that it wasn't. Ten months later I ended up in emerg again after fainting HGB 69. Another scope with numerous biopsies, indicated crohn's colitis and diverticulitis. However the docs were not happy with that diagnosis as I was not following the usual progression of the disease. The only active area was the sigmoid colon nothing above and the rectum was clear. I was put on weekly iron infusions. I tried salofak enemas, salofak oral ,budinoside, prednisone, fatty chain acid enemas and finally Humira injections. None of which worked. The camera pill swallow, didn't show any ulcerations in the small bowel but indicated that I had an extremely rapid transit time. Microbiology noted crohn's in both right and left bowel biopsy tissue. The doctors feel that now my only option is surgery. I have agreed to the surgery and am scheduled for next week. How do I know if this is a good decision??? :confused2: I have read many posts about horror stories from surgery. I am trying to be positive but I already have a rapid transit time will it be worse once they remove the sigmoid? What about # of BM's per day. I was reading that some people have 20 to 30BM's after the surgery. If that is the case I would be no better off than I am now except that it may stop the bleeding. I am quite anxious about this surgery and hope that I have made the right decision. Has anyone got any advice, suggestions or comments that might make me feel better about the surgery...... For or against, any input would be much appreciated.

Thanks!!

/good luck with dcision I still learning and have mild crohns.

emacx,
Hi and welcome to the forum. I have had 3 resections and they went well. The # of BM's will be alot at first but they will go down to your new normal. Some people like me only have 1 a day. But it could be more. I am way better off after surgery and most people are. I wish you well.

Hi

Welcome to the forum. I can tell you that my last operation, an old fashioned re-section, was not the 'trauma' I anticipated. I was up, walking, with the assistance of two nurses, 5 hours after surgery. I continued to walk more and more every day, and I went home 5 days after my operation... and was able to care for myself. The surgery before that was done laproscopically... and was , although done with smaller incisions, a more unpleasant experience. But that may have been just my own experience, others may tell a different story. But the old fashioned resection was literally a walk in the park.

Now, after my 'successful' resection, I was told by the surgeon I was 'cured', that my problems were over. A 3 month follow up scope seemed to confirm his diagnosis. But, at the 6 month follow up... the disease was back, worse than ever, and far too much to be a candidate for further surgery. I was devastated. The fact that your disease does not seem to present as 'typical'... makes me wonder if the diagnosis is correct, and what the outcome of the operation might be. A general rule of thumb that I've heard on this forum since the day I first joined was... if it is Ulcerative Colitis, and the entire colon is removed, you are cured of colitis. But, if it is Crohns Colitis, and they remove the entire large colon, you are cured of Crohns Colitis, but there is a strong possibility that Crohns will return 'above' the colon, resulting in Crohns Disease. Now, whether this rule of thumb is true... I can't be certain... but, if it there is truth to it, your doctors should know... and they should answer you truthfully if you put that question to them.
IF there is a risk that surgery to resect Crohns Colitis will put you at risk for Crohns Disease... or that there is no guarantee the surgery WILL cure the issue you've got, then you MIGHT want to explore other options before committing to this operation. I say that because.. once it is permanently removed, there is no chance of getting that tissue back. Whereas, you might find meds that will reverse your condition except for the accumulated scar tissue. I wish I had found my LDN before they cut out that last 1 1/2 feet of colon. I can never get it back. You really need to know what all of your options are before going ahead. Sometimes a surgeon will only suggest an operation.