Disappearing stoma the sequel

[UnXmas]

Long, rambling post - I don't expect anyone to read it all, I'm just posting it to get straight in my head about what's happening.

Some of you may remember that my first stoma suddenly retracted one day - it disappeared back inside my stomach, and I had to have urgent surgery, because the waste was being passed rectally as well at through the stoma, and then couldn't get out anywhere at all and was backing up in my intestine. It was so awful having to go to the loo "normally" again, with all the horrendous problems that the ileostomy had cured back again when I thought that was all in the past.

So I had my second stoma created at that point. I was so worried they might take my stoma away - I know people dread that they'll wake up from surgery to find they have a bag, but I dreaded waking up to find I didn't have one! But I woke to find I had my second stoma. I didn't want to pass anything rectally ever again, and my surgeon assured me after this surgery that now my rectum was not connected to the rest of my digestive tract, so that couldn't happen. That one prolapsed outwards sometimes, but this is common and not dangerous as the waste can still get out - it only needs correction if it won't go back in and bags can't be put on when it's out. I freaked out the first time - I was already in hospital to gain weight, and had just been told I would soon get to go home, and I saw the stoma prolapsed out and thought I was going to need surgery right away and never get home! (The thought of not getting out of hospital far surpassed any worries I may have had about whether or not a prolapsed stoma was dangerous. ). But a surgeon came to see me and said it was no big deal at all and showed me how to put it back in. It came out again a few times in the following weeks, but I got it to go back in easily each time.

Then I had the blockage/perforation and emergency surgery which, although the blockage and perforation had nothing to do with the stoma itself, resulted in a third stoma. The surgeon (different from my usual surgeon as it was an emergency) told me that my rectum had shrunk considerably, which is what's expected of it, having been cut off from the rest of the intestine for a while. She also said that with this new, third stoma was a different kind, an end rather than a loop (though I've never got my head round exactly what that entails, as I'd thought my second stoma was an end until after my emergency surgery and the surgeon told me my second stoma had also been a loop... just not connected to the rectum. Which I'd thought was what made an ileostomy an end ileostomy, so... :confused2: :confused2: :confused2: ).

My usual surgeon hadn't done an end ileostomy originally because, although he knew I really wanted a stoma, he wanted to leave the possibility of reversal open, just in case. But by now I knew more than ever that I want a stoma, always - not that I got much choice as this emergency surgery happened so quickly, with the surgeon having no way of knowing exactly what she'd find or what she'd need to do when she saw inside. The surgeon told me afterwards that with this end stoma would be better than the previous ones - that I'd tolerate fibre better without blockages, and that it wouldn't prolapse, etc. like the previous ones had. My stoma nurse said the same. Well, I gave it a few weeks to heal, then cautiously tested fibre - didn't go well. Then I had a couple of prolapses - but no problem, they went back in easily.

So today I wake up and take my bag off, and my stoma has disappeared - just like the first one! My stomach is just flat with a hole in it, with the waste coming out of the hole. I don't panic this time - I reminded myself that it is physically impossible for me to pass gas, waste, or anything else rectally, even with the retraction. Though this time the difference in appearance is much more striking, because my first stoma only protruded out a very little way, like a centimetre or two. My current stoma is very long - it moves in and out a bit but is usually several centimetres out. So all that length of stoma was back inside somehow. But I managed quite quickly to get my finger in and get it out easily. So much for this being a less problematic stoma! I am just very prone to prolapses and things. I also always need convex bags and I think that's something to do with having weak supportive structures.

I'm just a little worried now. I don't know how long it had been retracted for: it was normal yesterday evening, retracted when I woke up this morning. Some output had come out during the night, so I think it was probably working even when it was retracted, though it's possible the output came out early in the night and the retraction happened afterwards. The possible big issue here will be if it retracts again and the output can't get out and backs up in my intestine. Which would mean possibly an emergency again. :yfrown: But it's out now and working fine.

 

[DJW]

Awful. I'm glad it's working properly.
Mine goes in every now and then but comes back out just as quickly. All part of the rhythm of the intestine.
I hope this nightmare end soon and you can get on with life.

 

[Susan2]

My stoma disappears from time to time but I can usually get it to reappear by a bit of squeezing underneath it. This is why I wear a convex bag.

DJW is right in that we tend to think of the intestine as something basically inert but it moves around a great deal, as well as having a pulsing action that moves the food along. It might just that your intestine has settled back in and is pulling the stoma in with it. I think that you should talk to your surgeon about it if you are worried. There are some techniques that they can use hold the stoma out.

I also think that your output will continue even if the stoma is retracted - the peristaltic action of the intestine will continue to push things along. I wouldn't worry about that. The concern is more that the output will get under the base plate and cause irritation, as well stopping it adhering properly.

You can also wear belt that attaches to base plate of your stoma bag to keep it tight and help push the stoma out. Perhaps, with some training, it will behave better!

 

[Connie01]

Is your output thicker, causing it to retract? I've reverted to a low residue diet again, to reduce the risk of another blockage and retraction. Sometimes if the output is thick it causes the stoma to disappear. Pops back in to have a look where it came from

 

[Muppetgirl]

Sorry to hear this unxmas. I've never known someone have so much trouble with their stoma(s), (though I only know a few folks with them offline). Sending you good wishes that you avoid retraction again.

 

[UnXmas]

I also think that your output will continue even if the stoma is retracted - the peristaltic action of the intestine will continue to push things along. I wouldn't worry about that. The concern is more that the output will get under the base plate and cause irritation, as well stopping it adhering properly.

That was the problem when my first stoma retracted - the output couldn't get out so they had to do the surgery to fix it right away.

Is your output thicker, causing it to retract? I've reverted to a low residue diet again, to reduce the risk of another blockage and retraction. Sometimes if the output is thick it causes the stoma to disappear.

It's not that thick - usually it's how it's supposed to be ("toothpaste consistency") and maybe a couple of times a week it will be watery.

 

[UnXmas]

Sorry to hear this unxmas. I've never known someone have so much trouble with their stoma(s), (though I only know a few folks with them offline). Sending you good wishes that you avoid retraction again.

I still have no regrets about having a stoma. I'd happily go through the surgeries again. If I'd known in advance that it would retract/prolapse, I'd still have gone ahead with getting the stoma.

It's also only the blockages and the first retraction that have been problems really. The prolapse and this second retraction haven't meant anything bad - just weird. And I can avoid the blockages, just have to watch what I eat. I do miss fruit and veg, but since I'd be having to eat high-calorie foods to gain weight anyway, and couldn't have been filling up on fruit and veg for that reason, that's not much of a big deal.

The blocked intestine and perforation wasn't anything to do with the stoma, it's just that I ended up with a new stoma when they fixed the intestine. And I honestly don't know how I could have survived that hospital stay if I hadn't had a stoma. I don't know how I could have dragged myself to the bathroom, literally for hours every day and night (which was what I was doing before having a stoma) when I was that sick. When my right side was paralysed due to an air embolism when they removed my central line, I don't know what I would have done. The nurses could easily empty my stoma bag while I was lying in bed. I couldn't have spent hours sitting up, straining, etc. I don't even want to think about what that would have been like if it had happened before I had an ileostomy.

So I didn't mean this thread to be a "list of all the things that have gone wrong" thread - more a list of all the weird things my stomas have done.