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Have a bag fitted after history of DV and UC in sigmoid long story short and much doctors scratching their heads, the op was 5 weeks ago and seeing the follow up tomorrow with the surgeon

Ok with the bag but had a fistcula fitted for mucus and still having the nurse around each day to change the dressing. A bit from the back end also but not much. Has anyone had a similar thing and how long it should take? Is this time normal as the sergeon at the time said it would be around two weeks.

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  • Posted

    Hi My son had his ileostomy in Dec 2013 as he perforated from UC. He healed well and had reversal surgery after being diagnosed as only UC after being indeterminate for some time. He had a mucous fistula too and he had a stoma bag and a dressing next to it to cover his mf. He had mucousy, brown discharge out of his back passage which his Doc treated with asacol suppositories, approx 2 a day but variable. The discharge from the mf was a pain for him as it sometimes caused his stoma bag to leak or come off as they were so close to each other and it varied in it's out put too but I think it did slow down over time. The mf closed a little but was still active until closed up.

    The first surgey to make the internal J pouch was in Feb 15, so 14 months later, removed the rectal stump, closed the fistula and made the pouch from the lower end of the small intestine through the ileostomy scar at the lower end. He then had no symptoms as all disease had been removed, only the stoma to contend with, much easier. In July he had keyhole surgery to connect the pouch to the rectal passage, and close the stoma. He is delighted with his fully functioning internal storage and disposal area and he uses his muscles to control and empty. I have said all this incase you consider the reversal with internal pouch. I didn't ask at the time what would happen to his mf and stump if he didn't have the reversal but I know they said the stump should be removed at some point as more likely statistically to get cancer. All this done at the excellent John Radcliffe hosp Oxford by Prof Mortenson, best there is.

    Good luck with the stoma, Sheila

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    • Posted

      Wow thanks that's was a good outcome.

      DV over the last 18 years and UC over the last 3 ish years but the thing was they could never get to the issue and they have given us s roller coaster ride over the last couple of mts of poss cancer then not etc sad

      But they said that due to the sigmoid area and the mess its in that it can't be removed because it's fused and gone hard. But the stump still in place and will I guess remain there. 77 now and better than was as was on the loo after eating all the time and weight loss. Just thought it was odd to have the back end discharge (more so at night.) and the fiscula dressing going on for this long.

      I did read about the chances of the stump and cancer but it's just the way it is I suppose

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    • Posted

      Hi, We went to John Radcliffe NHS Hospital Oxford under Prof Mortenson as he is highly recommended and we knew someone who had been treated there and been very happy with the same op. They are so modern and well resourced as not only NHS but they do private work there too with patients from all over the world. My son was lucky enough to have his own room and food could be ordered 24 hours a day. Was a bit like a holiday. It is the large Oxford University hosp so lots of reasearch there too. I did joke to my son it must be private and wait until we get the bill!

      My son was told after ileostomy that the mf would almost close and stop producing but it didn't, don't know why. He was still dressing it 4x a day until he had it closed, that was almost the best bit of the reversal.

      Hope you get some news soon. sheila.

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    • Posted

      What? why moderated ,  didn't say anything contraversial.

      John Radcliffe Hosp is Oxford University Hosp and NHS. Prof Mortenson  is the leading GI surgeon and a real pioneer, vastly experienced.

      I would have sold the cars to pay for it if nec as so worth it!



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