TWISTED POUCH/ LIQUID DIET ADVICE

I am so sorry you are suffering! I hope things get better soon, I do not have any experiences with bowel twists but I hope you recover! I hear bowel twists are mainly corrected with surgery.

If you do need to go back to a ostomy, please do not be afraid of that- that is definitely not the worse that can happen, especially if you need that to live. Definitely keep us updated!

I am so sorry for what you are going through. I had a very short-term pouch twist. It had twisted up into a hernia and was removed surgically very quickly.

But I have had a lot of blockages due to a loop of bowel that causes problems (adhesions and stuck to the wall).

I bought myself an immersion blender. It is a handheld device that you can put directly into a pot or a jug.

I use it to make smoothies, soups, puréed vegetables and just about anything.

It is a godsend...it has allowed me to keep up my nutrition and eat a large variety of foods.

It is not a solution to the twist...it is just a safer way to eat if you have one.

Sharon

What is going on now??? Are you better???

Hi Lauren,

As the saying goes no news is good news!

I’ve completely recovered from this episode and will shed some light on what my CS and GI think is happening.

First off, the defecograpgy didn’t reveal much as I expected since I can’t “properly “bear down - as I have no control over my internal sphincter -...Now, two pouchoscopy 2 months apart since my hospitalization revealed a anastomotic pouch sinus, also known as sinus tract, right by the anus entrance. My GI doesn’t know yet how it was formed but could be the results of anastomotic leak - might have been there (without causing issues) for up to 28 years since I’ve always had a leak since the take down - at the seam where the pouch connects with the anus or else to the skin where the old stoma was - I had a skin abcess lanced there 2 years ago -...Not sure yet what the next step will be, but my GI at UCSF suggested surgery (pouch re-do???) or endoscopic surgery (sinusotomy ???). I’m a bit concern about a surgery because I feel so good now - as good as I ever been during the past 28 years post J-pouch - and sometimes doing nothing can mean less trouble down the road, but I’m listening to options.

Tony

@TONY LAVICTOIRE posted:

Hi Lauren,

As the saying goes no news is good news!

I’ve completely recovered from this episode and will shed some light on what my CS and GI think is happening.

First off, the defecograpgy didn’t reveal much as I expected since I can’t “properly “bear down - as I have no control over my internal sphincter -...Now, two pouchoscopy 2 months apart since my hospitalization revealed a anastomotic pouch sinus, also known as sinus tract, right by the anus entrance. My GI doesn’t know yet how it was formed but could be the results of anastomotic leak - might have been there (without causing issues) for up to 28 years since I’ve always had a leak since the take down - at the seam where the pouch connects with the anus or else to the skin where the old stoma was - I had a skin abcess lanced there 2 years ago -...Not sure yet what the next step will be, but my GI at UCSF suggested surgery (pouch re-do???) or endoscopic surgery (sinusotomy ???). I’m a bit concern about a surgery because I feel so good now - as good as I ever been during the past 28 years post J-pouch - and sometimes doing nothing can mean less trouble down the road, but I’m listening to options.

Tony

Sorry about all of this! Are you open to getting an ostomy???

I am open to get back to an ostomie if it comes down to little or no option. My colorectal surgeon has opted to wait and see before a sinusotomy. My pouch looks pretty good now but if infection reoccurs, the next step would be to heal the sinus tract.

@TONY LAVICTOIRE posted:

I am open to get back to an ostomie if it comes down to little or no option. My colorectal surgeon has opted to wait and see before a sinusotomy. My pouch looks pretty good now but if infection reoccurs, the next step would be to heal the sinus tract.

Sounds like a plan!

Sorry to hear about all this. Why do you think it’s a twisted pouch, did your doctors suggest it? I have (had) a twisted pouch with some other problems from adhesions. I had worsening symptoms over two years of chronic partial bowel obstructions, so severe pain, nausea, vomiting and difficult evacuating. It got to the point where it was blocked  most days of each month and I couldn’t eat anything, and even liquids would cause symptoms. I had every test under the sun but nothing definitive showed up, my surgeon discovered it in my surgery for a diverting ileostomy. My symptoms resolved immediately after the diversion, after 85 days in hospital over 2 years my ostomy is a life saver and I’m super grateful it worked.

for diet, I lived on liquids only for over 6 months. It’ s really hard, and not advisable without a doctor or dietician monitoring you. Prior to that I ate low residue. I was sick and tired all the time. My dietician told me to drink enough boost/ensure to get enough protein each day (I think it was 80-100 grams or something, so about 6 Boost/day). You can buy high cal/high protein versions. I also made veggie purred soups like butternut and carrot, and used an immersion blender. But, if things were bad, nothing helped and I couldn’t even eat the purées.  I’d stay on clear fluids but end up in hospital. Boost also makes a clear fluid drink with a bit of protein and vitamins if you do need a clear fluid diet a fair amount. It really is a problem that requires a surgical solution it seems. Good luck, I hope you don’t go through what I did and don’t have a twist.