Is there anyone struggling with Gastroparesis and a k pouch? I'm starting to wonder if I made a horrible mistake having my k pouch as I struggle with GP too.

I don't know where to turn but trying to connect with ANYONE suffering too.

Original Post

No, but maybe some of us can help...first off, why did they do the k pouch on you?

Didn't they know at the time about the GP? 

What are your symptoms? Is it major or minor? Does your stomach empty out only partially? is the small bowel implicated at all or is it only in your stomach?

Would a liquid diet help? Or a low residue diet? Higher concentration foods mean less food in your stomach...can you digest proteins? 

Sharon

Hi Sharon.

Yes I'm on low residue diet. Mostly liquids and ton. Can't digest meats. GO has some degree of impact on small bowel. Eat very little. Have a ton of allergies. I had my kpouch in may of this year. Have had global dysmotility had large bowel removed due to complete paralysis in 2014. 2 failed end ileostomies and terrible terminations. But since my kpouch my GP is worse than ever and I have been to the hospital 3 times for at least a week each since my kpouch. Coincidence ??? Or complication IDK I'm just very exhausted and in terrible pain like constient and somewhat dibelating. IDK where to turn. My go dosent have much knowledge of kpouch and my surgeon has little knowledge of GP. I had GP manageable before kpouch now I'm at a loss. It's hard to get thru most days.

Am willing to travel to a new doc in another state if I can find the right doc knowledgeable in both issues.

Thanks for any direction

I am so sorry,

I have no experience but from what I have read it can be caused by a damaged vagus nerve...is it possible that during one of the surgeries it got injured...If it hadn't been already? Is it possible that each surgery made it worse?

Not sure if it can be stimulated through electrodes or ultrasound or some sort of biofeedback...like they do with other nerves?

Just some random thoughts...

Do you use any bowel stimulants to help things along? 

Are there any intestinal-spasm stimulators?

I will see what I can find out here...different countries/different protocols...you never know.

Sharon

sounds dreadful and i'm so sorry you about both symptoms and docs not being attentive.  i suggest either cleveland clinic or university h, also in Cleveland --dr dietz is at the latter and he did my surgery when he was at cc.  currently i see dr kiran at columbia in nyc.  there are other docs in nyc.  sorry i can't be of any more help, but did want to acknowledge your terrible situation.

keep us posted.  janet

You may want to try doing a search online for centers specializing in GI motility disorders. Gastroparesis is pretty common, but the causes can vary. Your K-pouch itself probably isn't a major factor, but the extensive abdominal surgery to create it could have caused problematic adhesions and/or worsening neurological damage. There are a number of centers in Texas (mostly Houston and Dallas I think). Have you considered a gastric neurotransmitter (pacemaker)?

https://my.clevelandclinic.org...stroparesis-overview

Jan

Thanks for both replies.

Unfortunately I have had a gastric pacer and it did not work for me but the success in non diabetic GP patients is marginal for most. I am going to possibly see a doc in CA that can hopefully convert my k pouch to a BCIR. the problem is I not only have GP but global dysmotility which affect my small bowel and as aided in the fact that my kpouch is as big or bigger than a lunch box. I also have stenosis of the channel as well as atonal stenosis. Seems my body is just one big mess. Anyone else have similar issues? How do you cope? I spend most of the day with either cramping nausea vomiting and pain most of the day. And although I Cath at least 5 times a day some times it will be 2 or 3 days before I have decent output then it is massive I mean we r talking 500 + cc easily.

Thanks for any direction. Takin it 1 day at a time  currently.

Anglilanr,

As Jan said, a BCIR and a K pouch are essentially the same pouch, it is just the valve that is different...

As for output, depending on what I eat, I usually intubate 8 to 12xs/day...my pouch hates gas and will not let me sleep until it 'burps' or evacuates its gas so I need to stay up late enough to empty...and I can empty up to nearly a liter.

What do you use to thin out your output? Are you drinking prune or grape juice (or both)...Do you drink green tea (they say it helps, does nothing for me)?

I guess what I am saying is that the thinner your output is, the easier (I think) the emptying out of your pouch should be.

If you keep it liquidy it should take less effort to empty.

Do you irrigate? I irrigate daily or more...only rarely is my output thin enough not to require it (prune costs more than wine here and I am cheap when it comes to buying and drinking it...so I deal with thick output by irrigating)

Do laxatives help? Some laxative teas might do the trick.

Just some random suggestions...Sorry if you have already tried them all and failed.

Sharon

 

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