weird 'build up' behind stoma..

Hi Sarah,

I wear NOTHING in terms of clothing that even comes near my stoma let alone tight leggings. I too have an end ileo (will be 4 years this August). I just had to drink an 8 oz glass of coca cola (decaf) to bust up a food clog such as the one you describe. In 4 years I have not even tried coke (I did stir the bubbles out of it.) I think I have found my miracle cure for busting up food clogs! All I had that was cloggy was baby food banana this morning because my output was too watery, but the baby food banana tightens it too much and it pancakes on the stoma like you describe. Next time try some coke and see if that breaks things up.

In 4 years I have had 3 serious food clogs: 2 on mashed potato and 1 on a whole ripe but real banana. These were actual food blockages (worse issue than you describe) but I had to walk for about 6 hours with each one and dump down tons of hot tea. THEN when the food came out into the bag it popped out all at once. I was thankful as I was in the middle of an ocean for two of these on a ship. Had I known about coke back then I could have shortened the process!

I have never had a loop ileo so have nothing to compare loop v.s. end ileo in terms of function. But yes, I get that pancaking if I eat anything even as mild as two pieces of bread or a good amount of crackers. I also drink a LOT of water, so I don't know the cause. I even had a CT enterography to see if there were any adhesion narrowings in my small bowel and there were none.

Rosemary

PS I know that hot salty broth, grape juice, chocolate, alcohol, hot tea or coffee, and anything with caffeine will help me break up a clog.

Welcome to my world Sarah. Hope my ideas help. I have tried food logs and such. Then I finally gave up in sheer frustration. On trips I normally have milk, egg, and a light fluffy pancake. Then in about an hour I start sipping water so I don't get a kidney stone. (never had one and don't want one. Without use of the colon to hydrate us we are more prone, oh joy!) THEN, the breakfast is basically all pancaked on the stoma, so for lunch I have LOTS of hot or cold drinks and some ice cream. This seems to break it all down and out it comes.

Then more water.

Then for dinner a scrambled egg, one piece of toast, chicken broth, and ice cream, and hot decaf coffee. THEN out for a walk around deck. (I cruise a lot), then dancing and I literally have to shake the poop out of me. THEN by the time I get to bed, it is out of me. IF not, then I get into lots of grape juice.

I have experienced severe ileostomy diarrhea without having the stomach flu. ONce from fake sugar, once from too much sugar, once from bad tap water, and once from unknown reasons. This is really scary. THEN I've had the food clogs listed above. My stoma only sticks out about 1/2 inch if that and is 7/8" oval. I just pray it keeps working. (It saved my life after a severe colon/rectum/small bowel injury/scarring in 2006)

If you find the right "recipe" let me know.

THEN I have disuse colitis in my colon and rectum which are still in me. This activates every so often and I get low down cramps and lots of mucousy watery bloody out put. OTHER times, I have these literally rock hard pieces of mucous that stack up in my rectum (and I am wondering if in my colon too) that I have to blast out with an enema. Or have suctioned out. I have heard that eating a lot of chocolate makes a lot of mucous in the colon and rectum even if we are not using them. Hard to believe, but my ileo surgeon told me that and he has tons of experience with ileo patients. He was the only one who would fix me up the best that could be done, so I tend to believe him. My lysis of adhesions and ileostomy was a difficult surgery due to the prior injuries. I have been into a lot of chocolate lately and I have had horrific mucous issues all month so no more chocolate for me! I have to take the pledge.

Rosemary

How do you deal with retained mucous in the colon/rectum? Rosemary

Post Edited (esoR) : 7/18/2011 4:06:18 PM (GMT-6)

Ok so I have found if u leave a little bit of air up around the top of the pouch it let's everything slide on down I don't mean like balloon amount of air just enough so that the top of your stoma is barely touching the pouch it really helps when your wear tighter clothing and since it's all compressed anyway you can't tell!!! It really is just a little bit of air and I don't use a filter on the pouch and if there is one I cover it with the sticker! ;-) hope this might help! Take care!!

Oh, so that is why the coke worked for me to break down the baby banana? The carbonation moves things along? I did stir the bubbles out of it, but there were some still in there. WOrked like a charm.. Rosemary

Carbonation can cause gas and your bag to "blow" up like a balloon. Some people tolerate it well, and others do not. Experiment with it at home before going out in public.

i drink purne juice and fresh squeezed pear juice every day. w/o these juices nothing hardly comes out. i have a slow small intestine.

i hope this pain goes away soon. sounds rough. hang in and keep us posted.

thanks Shaz.. goodness you guys are all brilliant! what knowledge.

the new pouch seems to be helping this afternoon and have upped my fluid intake too

also just sent my mum off to the supermarket for some pears to juice and prune juice.

thanks so much to you all - big HUGS x

yes I do thanks Hodaya.. am looking forward to giving that a try! seems bizzare that I'm having to consider increasing my fibre intake even at this stage.. sigh!

Sarah,

As Hodaya said just above, no fiber for you. That will thicken and make things worse. The juicer machines need to be checked as some let the fiber come down and some just let the juice come down into the part that you will drink. Be sure you are getting only the juice.

I have found that Sorbitol, sucralose and all those fake sugars really speed me up but I have no transit issues, so my situation is different. Try a liquid day with pudding, milk with protein powder or boost shakes, tea, decaf coffee, juices and see what happens. You can also do a transit test yourself. Try some tomato soup and see how long it takes the red to come through. Rosemary

Hodaya, What is the temp over there these days? Rosemary

Yeah, that in place colon can become an issue. Up til now I have just had the mucous suctioned out twice per year and I did small enemas at home in the meantime. BUT, my latest is new and I have been OK for 4 years. Maybe on the long term disuse colitis issues become and issue.

Oh, be careful, Hodaya needs the prune juice as she has slow small bowel motility. WIth me, if I had prune juice it would induce severe ileostomy diarrhea not what one wants.

Re: the wine. I never will be able to have any again. I had a glass once and the bag filled and filled all night I ended up dehydrated having dry heaves. THEN had to take 4 immodium to make it STOP. THEN the effluent turned so thick and so hard that I had to drink about 10 glasses of grape juice to melt it down. WHen it finally started to move it was like concrete moving into the bag. FELT BETTER THOUGH!

Then when I emptied the bag, it was like milking concrete down to get it out. THEN the poop (It actually looked like real normal colon poop) It stood upright and formed in the toilet.

The happy medium, yeah we can dream! Let me know if you find it. Then what is worse is that Normal is arrived at differently for all of us. Rosemary

Oh good grief on the wine!!! well I'll give it a try and report back.. Jeeez! that doesn't sound good. If I'm even thinking of wine though I must be feeling better havent' touched the stuff for months.

I have no idea how the loop works compared to the end .. all I know that with the loop from day one everything just whizzed through. None of this build up and blockage and weird thick poop! perhaps it was higher on my small bowel. who knows. Of course there's still this question mark over whether i have dysmotility in my small bowel too, but yet to be confirmed.

All of this is a huge learning process for me.. so really grateful for all the input!

Although today has been a much better day - the change in pouch has definitely helped too.

I'm all for gathering as much info as possible and then figuring out my 'normal' - I do like a challenge
S x

thanks Hodaya.. sure it will.

In the UK it's about 13 degrees and raining... am wearing a sweater :-(