Duck, various folks here have written about using a catheter to empty their pouches. There’s plenty of variation, but some of them have described using a bulb syringe (essentially a turkey baster) to irrigate the pouch, squirting water in to facilitate emptying. Just inserting a catheter will only work if the pouch contents are fairly liquid. If stuff has been stuck in your pouch for a while then it’s unlikely to still be liquid. Do they even know if there is stool in your pouch?

The key diagnostic question is where things are getting hung up. I still suspect the malpositioned pouch.

Hi all. I had the discharge meeting today with my surgeon. They think the pouch needs to come out. There is no information from any scans that suggest why this is happening. The malpositioned pouch on defocography wasn’t  much of anything apparently, all the CT scans have never shown any narrowing/strictures/wall thickening and the motility and pathology tests are clear. They’ve been about as thorough as they can be I think.  They said sometimes pouches do this? They suggested we try a temporary ileostomy to see if it makes a big difference, that way I don’t lose it for nothing if it ends up not helping. They can also check for rogue adhesions etc. that may secretly be causing problems. I still wonder about that given I have endometriosis and all the scarring that comes with that. I feel Ok with this plan, it will be a long road, but with a light at the end of the tunnel. Thanks all for your support through this!

The temporary ileostomy sounds like a good way to go. I suspect it will give you immediate relief from your symptoms, and it will allow you to get back on your feet. If you like it, you might want to keep it permanently and you can keep the pouch too, so there wouldn't be any more surgery. Most of the time once the pouch is "disconnected" it stops causing trouble. Since you've already lost your colon, the ostomy surgery isn't too bad, so recovery time is fairly fast. I'm hoping this is the "miracle" you've been hoping for. One more thing. When I finally lost my pouch, I felt that I was giving up. Don't feel that way. You're not giving up. You've tried everything available, and now you're moving on with your recovery and your health and your life. Good luck.

@duck11 posted:

Thanks for the reply Scott.

they didn’t give me any water to put in it at all, just said to insert the catheter c. 2” and it should come out. I even tried a bit deeper and also tried leaving it for 30 mins. Honestly none of the nurses here are familiar with it, and the colorectal surgeon was all “it will work it you just put it in 2”. Maybe there is more to it than that?

Hmm, I don't wish to contradict your surgeon, but when I tried catheterisation my surgeon and a continence nurse both advised using a small amount of lukewarm water.

So: Place catheter. Inject smallish amount of water (20ml). Try to release through catheter. Inject a little more water if needed or if catheter clogs.

Gotta say, the catheter did not work for me in terms of emptying the pouch. It clogged up as soon as any small piece of food hit it. I ended up just using it to get the water in, holding that for a little while, then removing the catheter and releasing the water + stool into the toilet.

However, I have read quite a few posts from people who found it worked, so don't be discouraged yet. It can take a while to find a routine that works.

If there's a continence nurse or specialist available, they are pretty good for brainstorming strategies with, even if they don't know this exact technique.

22 blockages????!!! DAMN!!!! I would have been gotten the permanent ilestomy lol. I am sorry for your suffering!!!

Are you doing better now???

Hi all,

it’s been a while since I wrote on this thread, but if anyone is still following and/or looking for help for similar issues, I thought I’d post an update.

its November, I’m 9 days post op from a laparotomy/diverting ileostomy. The year went from bad to worse. By mid year I could no longer eat solid food and have been living on liquids/Boost, and in hospital like a rotating door. I honestly don’t know how this was allowed to get to this point, but my surgery was eye opening....

Despite having every diagnostic test under the sun, CT, MRI, scopes, defocography, Sitsmark, nothing really definitive showed up so I (finally) convinced my surgeon I wanted an ileostomy. She went in and said my abdomen was a “trainwreck”. My pouch had a large twist in it, there was a piece of bowel wrapped too tightly all the way around it and another piece pinned underneath it, and soooo many adhesions she needed 5 hours to even make a dent in Lysing them. I’m 9 days post op now and still in hospital as my bowels just wont wake up which worries me as they thought pre-op I may have a motility issues, but already feel so much better getting that all out and disconnected. I may opt for a new pouch, or remove it, or just leave it, but she said I can live with my loop ostomy indefinitely and I just want to enjoy being healthy again for a while.

the moral of the story is, keep fighting. I KNEW all this time there was something very wrong going on inside me, but kept getting run over by a medical system that likes things in easy to treat boxes and definitions. I honestly think I may have died if this didn’t get taken care of soon. I hope this helps a few of you here who have posted with similar issues.

Duck, I’m very glad the source of your misery was found and corrected. You’re unlikely to have a motility issue, since that idea really came from grasping at straws. A post-op ileus is miserable (mine lasted 10 days), but they really are temporary. You’re likely to be much better very soon, and hopefully your loop ileostomy will be well-behaved. Please keep us posted!

@duck11 posted:

Hi all,

it’s been a while since I wrote on this thread, but if anyone is still following and/or looking for help for similar issues, I thought I’d post an update.

its November, I’m 9 days post op from a laparotomy/diverting ileostomy. The year went from bad to worse. By mid year I could no longer eat solid food and have been living on liquids/Boost, and in hospital like a rotating door. I honestly don’t know how this was allowed to get to this point, but my surgery was eye opening....

Despite having every diagnostic test under the sun, CT, MRI, scopes, defocography, Sitsmark, nothing really definitive showed up so I (finally) convinced my surgeon I wanted an ileostomy. She went in and said my abdomen was a “trainwreck”. My pouch had a large twist in it, there was a piece of bowel wrapped too tightly all the way around it and another piece pinned underneath it, and soooo many adhesions she needed 5 hours to even make a dent in Lysing them. I’m 9 days post op now and still in hospital as my bowels just wont wake up which worries me as they thought pre-op I may have a motility issues, but already feel so much better getting that all out and disconnected. I may opt for a new pouch, or remove it, or just leave it, but she said I can live with my loop ostomy indefinitely and I just want to enjoy being healthy again for a while.

the moral of the story is, keep fighting. I KNEW all this time there was something very wrong going on inside me, but kept getting run over by a medical system that likes things in easy to treat boxes and definitions. I honestly think I may have died if this didn’t get taken care of soon. I hope this helps a few of you here who have posted with similar issues.

I am so sorry to hear that! I hope things get better though!!! I am glad you have a loop, I think you should keep it instead of getting a new pouch- the same problem might happen again with the new pouch. I hope your ileostomy works out!

I wonder what caused that to happen to you? And I wonder why all of your problems did not show up on the tests??? I hear about that a lot actually, about having to go in and see the problem. Too bad that stuff does not show up on cat scans and such.

Keep us posted

Duck11,

Wow, I am so glad you finally found some answers! I am so sorry for everything you have been through, but like you said, you knew something was very wrong and this is confirmation of that! Now you can focus on recovering and healing and regaining some quality of life back! Praying that your recovery goes smoothly and you feel better very soon.

I echo SJAN810's comment above. I think you're about to see a huge quality of life improvement. Be patient as your body heals. As you adjust to your ostomy, keep focused on how well you feel, and on how much you've improved. I admire your strength, and I wish you all the best. Keep us posted.