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.
I've had my ileostomy since October 2007 following extensive abdominal surgery for appendix cancer and psuedomyxoma peritonei. I saw my surgeon last week who said I can have the reversal, how soon is up to me - I'm leaving it until the end of the year as I've had so much time off work and want some time without feeling rough after surgery.
I'd really prepared myself for her saying a reversal wasn't going to be on the cards, and to be honest I haven't really had any probems accepting 'the little 'un' either psychologically or practically. I have, however, read numerous tales of raging diarrohea and up to 20 BM's daily following reversal, and quite frankly I don't want that!
I'm not entirely sure how much colon I've had removed. My surgeon is a bit (no a lot!) scary and I haven't asked, although I do know I had a lot of tumour around my rectum and it's usual to have at the least the ascending colon removed with appendix cancer. I've also had all non-essential abdominal organs and linings removed including about 6 inches of small intestines - my whole abdomen was described as looking as if it was spray painted white with tumour, all but 2 spots that are less than 2.5cm have been removed and they should be 'killed off' with intraperitoneal heated chemo during the surgery - I feel almost back to 'normal' again and I want to get on with life again rather than having to worry about feeling tired/sore/embarrassed/ill/reminded/worried etc.
I would like to know about other people's experiences of reversals, is 'it' like 'it' was before?
Is it really just the odd few that have problems afterwards, and do they have an idea beforehand what it's going to be like?
How much colon has to be left for good results?
I've actually spent more time worrying about the consequences of getting rid of my ileostomy than I did getting one, which is mad!
I had an ileostomy in August 2004, during treatment for rectal cancer. Had the surgery reverse it in January 2005. For a couple of weeks post reversal I had some control problems and very little warning before a bowel movement. I also had a few months of very frequent bowel movements. This has since improved, "it" is maybe not as good as new but its pretty close. Well worth it to get rid of the bag!
I was diagnosed with rectal cancer and had an anterior resection in early February 2008. This left me with an ileostomy which proved endlessly troublesome, so much so that I was in hospital until I had a reversal of the stoma on April 1st and was discharged one week later.
Now six weeks on I can honestly say I am on the way back to a normal life. My bowels are still somewhat unpredictable, but if progress continues at the present rate I can foresee very few problems ahead.
I realise that I have been very lucky in my recovery and that not everyone will get back to normal as quickly. However, this shows that it is possible and all I can do is to wish you all the luck in the world.
I can only comment from my husbands point of view. He had his reversal 2 months ago and during that time, it was an adjustment. Yes there were nights of raging bathroom visits and dehydration. BUT we got through all that and he's now on a more normal schedule. He's still taking something to keep the urges down from having to go to the bathroom but he's looking much more vital and feels better. He recommends it highly even though you go through quite an ordeal. He got the J-Pouch in Feb [day after Valentines day 2008] and got it reversed at the end of April. So overall that's not bad considering he was considered Pre-Cancerous
Now we're planning a trip for our vacation and we're BOTH looking forward to it!
I'm writing for a friend. She has a little girl that will be two in Jan. She was born without a rectum opening and had to have a colostomy bag. That was reversed in July. The problem is she only has six inches of colon that was attache to the rectum. At this point the little girl has lose bowels frequently, which in turn leaves her bottom almost raw and sometimes bleeding from the sores. The doctors that preformed the surgery has suggested several oniments that have not worked to clear this up. The mother at this point doesn't know where to turn to ask for help and the doctors which the list goes on and on seemed to be mute on the point. Does anyone have any suggestions.
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