This patient support community is for discussions relating to ostomy, colostomy, diet and nutrition, gastrostomy ileostomy, jejunostomy, ostomy reversal, sex and relationships, stoma, urostomy, and wound care.
My husband had his surgery on March 1st. He is still weak and has a lot of pain, especially at night. Processing food seems to be difficult, lots of diarrhea still and gas pains. He doesn't sleep well and hasn't since last July when this whole espisode started, colon cancer, resection, intestinal explosion, lots of infection, 40 days in the hospital, dealing with an ileostomy and after 6 months of healing, the reversal. He went to his surgeon, no real advise on how to deal with this, then went to a gastronologist who scheduled a colonoscopy but didn't give him a reason for it and didn't give him any advise. Two questions, should he go to some other type of doctor and what might the gastronologist look for while performing the colonoscopy?
The surgeon and GI docs should be able to sort him out. During the colonoscopy they will look for evidence of any perforation, and new polyps or leisions or tumor activity.
Did he have radiation treatments? The aftermath of radiation can really change things, GI-wise. Also, how much of his colon was taken, and where? if he lost a lot of his colon the system is going to work a bit differently from now on.
I had a similar experience with colo-rectal cancer, surgery, ileostomy and then takedown surgery, though I did not have any intestinal rupture. When I had my takedown surgery I was surprised. I thought it would be easier than the original cancer surgery, but it was harder in a lot of ways. I had trouble moving without pain for a long time. As far as gas, diarrhea and frequent, urgent bowel movements go, it was over a year before my digestive system settled down to something like "normal" again. Also, I had to adjust to a new "normal." Five years later I have accepted that things will never be the way they were before all the surgery. But it does get better. Adjust his diet and activities a bit til things settle into some kind of routine.
During all my treatment the doctors were very receptive to any complaints and together we tried different prescriptions to deal with the pain and the GI issues, but none of the meds were really successful for me. I get the best results from watching my diet (lots of water and fiber), and getting plenty of exercise. On bad days when my GI system will not settle down, marijuana is very helpful.
It takes a lot of patience, but it really does get better with time.
Thanks for all the info. Yes I do think we need to be patient. You're right about the meds, they can cause havoc and he finally gave up pain medication. No radiation or chemo, the doc cut out all the cancer and it was trying to get out of the colon but luckily the cancer didn't make it. The doc took out I think 4 feet of his large intestine and the doc did say that my husband's large intestine was longer than normal, so he has maybe 2 feet left. Also during the third surgery, the explosion part, the doc took out about 2 feet of small intestine. So you are right, his normal is going to be different for life. Thanks again!
My husband had an Ileostomy and the reversal. He had really bad gas as well in his stomach that did hurt and cause great discomfort. What helped him was knowing "when to stop eating" as to not get too full, and eat bland non-spicy food. Absolutely no sugar which causes lots of gas problems. He did great on noodles with butter sauce, white rice, pancakes with sugar free syrup, turkey bacon, white bread, Ensure (for calories since he lost so much weight), yoplait, cheese and macaroni, chicken and rice, etc......until he could start tolerating other foods which we introduced a little at a time. When he got gas build up and his stomach would get tight, he would walk all over the house, This helped a lot. He also made a website about his entire experience to simply help other people on what to expect, recovery time, and tons more info. You may want to check it out at www.freewebs.com/ileostomyreversalsurgery .... it may really help answer some of your questions.
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