Managing a non-working ileostomy stoma

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esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 4/28/2012 8:45 PM (GMT -6)   
OK, so have been trying to live on shakes and clear liquids so they will get through my stenosed stoma. LAST night I got soooo hungry I thought I was going to pass out.

SO I melted 2 jars of baby food meat into hot chicken broth, then I had crackers and cottage cheese, then ice cream (too much fat in this). Then liquids.

AWOKE this a.m. with BAD pain behind stoma and totally empty bag. NOT the norm for an ileostomate. Prior to march 11 I had emptied about twice per night. Though I have not been eating that much due to being not able to output, there should not be a TOTALLY empty bag.

So I KNEW There was stool behind the stoma. So I did my thing with SPLENDA fake sweetner made of sucralose! It acts just like MIRALAX! Why did I not discover this back when I was all together!

Anyway, I put it in grape juice, then I had a splenda ice cup, then I put it in hot tea. Soon I could feel the pain behind the stoma start to ease up and out came a WHOLE bag full of the thickest poop an ileostomy has ever put out. Back before March 11th this would have come out through the night and I would have emptied a few times then just gone back to sleep.

I had been lying on my left the whole night as I do get a pain when I lie on the right side the stoma side. BUT if I do not lie on the right side now NOTHING comes out. So luckily the splenda melted down everything and forced it out.

I tried to eat mini meals today interspersed with water and other beverages. THEN I had to melt those down with splenda. THEN I got really hungry and had an egg and cottage cheese for dinner. NOW I am having to do the splenda thing again because I do not want that pain again behind the stoma. I also worry what if sometime the splenda does not work and the real waste does not come through the stenosed stoma?

This coming week I will write the new (good) surgeon about the routine I have to go through to pass stool and see if we can move the ileoscopy appt up. I do love the taste of splenda but this is not normal If it ever fails I am a goner. Rosemary

uc_free
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Date Joined May 2007
Total Posts : 646
   Posted 4/28/2012 9:50 PM (GMT -6)   
Rosemary,

Have you given more thought to purchasing a juicer? You can get tons of vitamins and nutrients that way. You can drink good protien drinks, and GNC carries great vitamins that come in powder form that you can add to milk. At least then you'd be getting good nutrition until your appointment. It is terrible that you have to go through this!!
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 4/28/2012 10:33 PM (GMT -6)   
Yes, my nutritionist brought over her vitamix the super blender and we turned a chicken to water literally.

We also talked of juicers. Tomorrow I will call some stores and see if they have the juicers that completely eliminate the pulp and leave only the juice. Then I could do carrot water, any kind of veggie water. One would not think much could back up drinking vegetable juice.

I just had to melt down V8, egg, and a bit of cottage cheese with prune juice. Even the splenda would not touch it. I was like what the heck. COurse now I have ileostomy diarrhea, but better than gunk in back of a stoma all night.

Auuuugh! I just did up a short letter I am going to fax to the second surgical consult who is going to do the ileoscopy and told him of all I am having to go through. I called it "gastric gymnastics" like someone on here said. He will get a kick out of it. He is warm WITH a sense of humor. I SHOULD have picked him after my original ileo doc retired. He was the NEW doc on the block, but hey new is not always a bad thing. SOmetimes they are more with it and are not complacent.

I will check the juicer. NOW the issue I have is I have to let this prune juice diarrhea stop and not take anything to firm it up or the whole cycle will start all over again. noooo! Rosemary

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 4/28/2012 11:12 PM (GMT -6)   
I think you need to quit the baby food. I don't think its going through you, and might be part of the problem. Just because its smashed up foods doesn't mean it won't still slow you down. And maybe try small small amounts, but if it doesn't come out right away, don't do all the juice and such, just give it a bit. I'm wondering if maybe your intenstines have forgotten how to work, if that makes sense. I totally understand why you get so worried and do the juice splenda thing, but maybe that's part of the problem? Try eating something like pudding, its got a lot of sugar and should come out easily, and then just wait it out. Or eating some pieces of deli ham or turkey or something. Nothing hard to digest or bulky. But give your body time to work it out itself.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/28/2012 11:51 PM (GMT -6)   
I know. I was thinking the same thing. The baby food has that corn starch thickener. If not for the swollen stoma I would totally agree my guts have forgotten how to work. BUT did the stoma swell from all the diarrhea inducing stuff? Or did I need that because the stoma swelled and does not peristalse in and out any more. Which came first the chicken or the egg?

One time, what really worked well was some very well cooked summer squash no seeds and no peels and butter and salt. Slid right out of me.

BUT, what was the small bowel obstruction over easter. It was not throwing up poop. It was nausea and inabilty to drink but not that horrid periumbilical pain that came a few days later with no vomiting. This is sooooo hard to figure. Prune juice diarrhea finally ending. NOT a good thing. Need to stick to water. Rosemary

Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 4/29/2012 3:14 AM (GMT -6)   
Hi rosemary,
I was just wondering: how much do you drink in between your meals?
I agree with summer that baby food is too thickening, to starchy and too much fibre, I would say the same for V8, juiced veg or fruit juices, they are liquidised but still contain a lot of fibre, unless they are completely clear. Have you tried drinking more coffee or tea?
Maybe you need to start what we crohnie's call elemental diet, cut out everything and then reintroduce one by one, start with proteins only first, low residue ones first such as boiled eggs or chicken, then slowly carbohydrates, white bread only, diary etc. to find out which nutritional group causes the slowing down of your output. I would stay away from veg and fruit, if you are worried about vitamins, you can get some children's multivitamin syrup supplement.
39 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns,meds: Pentasa Pred humira which all stopped working, battling with flare and fissures until temp ileostomy on 7/19,QOL improved - I can eat what I like- but still having fevers due to active colitis-next proctocolectomy.

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 646
   Posted 4/29/2012 7:17 AM (GMT -6)   
I do have to agree about the baby food. Sometimes the food we think will come right out doesn't. My soft, ripe mango is an example of this! Also, when I eat applesauce it comes out like cement. It's crazy how foods are processed once in our bodies! By the way, a good juicer takes out pulp and only leaves the juice. It's not like a smoothie, as people think before buying one.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 4/29/2012 7:50 AM (GMT -6)   
Rosemary I really do feel for you and hope you get some answers soon. Agree with the babyfood thing.. it must swell up like crazy inside. I have a fantastic Dualit juicer which I use every day. I do one apple, one orange and 2 carrots and it makes a really nutritious juice, with no pulp or fibre. Not sure if you can get that brand there? anyway.. hang in there and keep pestering the medics, you know your own body. Good luck and keep us posted S x
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June 2010 - Emergency partial colectomy for peritonitis/perforated diverticulitis. Temporary ileo, reversed Oct 2010.
Reversal failed - then diagnosed with colonic inertia
July 2011 - Permanent end Ileostomy - elective
Follow my blog - http://bagthatruns.blogspot.com/

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/29/2012 9:57 AM (GMT -6)   
Drink 10 glasses of water per day, then tea, coffee, juices, etc. Elimination diet sounds like a plan the reintroduce. I have to check into the juicer.

I know, I remember your mango story. Motts applesauce used to come out of me OK but any brands with pectin were like cement. I find that yogurt makes like a glue. This is going to take major work.

I got some digestive enzymes and will try them. I just wonder after I have to induce diarrhea with all that fake sugar does my intestine not have gut flora and I need a probiotic. I took the one my GI prescribed the night before I had the major food blockage in back of the stoma, so I did not take it last night.

If the stoma is stenosed then it is a mechanical thing, but lots to deal with in the meantime. Thanks for ideas. Gotta get that ileoscopy appt moved up if I can I will wait and hear tomorrow from the Friday request I put in. Then maybe a letter to the doc faxed telling him of the "gastric gymnastics" I have to go through and the need to lie on my right side to get ANYThing out at night. That is telling as doing that must open the stoma a bit or press on some intestine in just the right way. That not working as well as it had been. Last night after all the prune juice diarrhea calmed down I slept great as nothing was in me and the left over prune juice came out any position I was in.

SOME nights, not all, but some nights i do take a 5 mg valium to sleep as I just need sleep. BUT I am wondering if this could be adding to the issue. I will try not to do this or just take a half. Only do this about 3 times per week but likely NOT a good idea. BUT need sleep. So wish I knew if this was structural as it seems to be, but.....

THX for ideas. Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/29/2012 11:40 AM (GMT -6)   
So today in addition to working with the non working ostomy, I am having to disimpact colon mucous from my rectum. I am going to ask the new surgeon if it would be safe for him to go get the large collection of mucous in my cecum that has inflamed my cecum. My current surgeon who does not want to deal with any of this wrote that as long as I have no fever YET from this inflammation he would not deal with it. I am like do we wait until I get a fever from infected colon mucous???????????? No harm in asking the new surgeon if he can go get this out of there safely while I am sedated. Rosemary

PS no matter what, am heading out to enjoy the nice weather here. 51, sunny cool breeze, WOW! I want to feel good!!!! and get fixed up however!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/29/2012 10:59 PM (GMT -6)   
Ok semi good day. Rice crispies with skim milk and protein powder, orange juice, and coffee. THEN a soft serve from McD's. Then waters and coffees. Then for lunch two scrambled eggs and 5 gluten free crackers. (Negative on the celiac) but am going to avoid wheat just to see if it makes a difference. Then more liquids. THEN 6 chocolates. not the best nutrition. but, then I got all nervous and did the prune juice and the splenda ice cups. NOT a good thing. Nothing was stuck in back of the stoma all was good.

SO no wheat no cottage cheese and lots of caffeine coffee and chocolate and a good day. Not the best diet but AOK on no stomal issues. Another time NO prune juice unless an honest food blockage not just the worry of. I am thirsty and gotta drink water to make up. RJ

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 4/30/2012 7:53 AM (GMT -6)   
I'm going to come confiscate your prune juice and splenda ;)

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/30/2012 9:42 AM (GMT -6)   
I will lock my door Allblue! LOL hehehehe! I know I have to not panic, but.... RJ

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/30/2012 11:17 AM (GMT -6)   
Rosemary have you talked to the surgeon or gi about what to eat? Seems like you're making it up as you go, and they might have more info.

Agree w/the others on the baby food -- you don't want things w/cornstarch and other thickeners in them.

Also, just reminding that you've been on this eating cycle for a long time, well before you had the current problem.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/30/2012 11:51 AM (GMT -6)   
Hi blue,

The gi actually prescribed a laxative and then said that prune juice would be ok instead of the laxative. All the gi and surgeons said was no fiber and mostly liquid intake. They did not seem to have much for nutrition suggestions.

Faxed and called to see about move up of ileoscopy date. All they said was we will check. Who knows? I may just drop a copy of the letter I faxed and mail it direct to the surgeon. Who knows what really happens with faxes?

I do remember swilling grape juice and eating effluent thinning foods
Prior to this march. I have indeed been doing that for awhile. I am wondering if this stenosis or whatever it is has been gradually coming and became acute this march. Otherwise I would not have. Started doing all these "thinning" foods to losen effluent.

When the ileo was new I remember being able to eat fish, potato, soups, baked apples and they all just came out of me just fine. It was a non-iSsue. All I had to do was drink water.

I wonder because the stoma was made when I was 99 lbs then I gained 39 lbs now back to 125 I wonder if inner structures changed and that is what is closing off the stoma? RJ

WonderTurd
Regular Member


Date Joined May 2011
Total Posts : 129
   Posted 6/3/2012 10:48 AM (GMT -6)   
This sounds like what I am going through. They originally thought my intestines were kinking and unkinking but when I saw my surgeon about a week and a half ago she thinks what I think. That my intestine is narrowed behind my stoma. I'm waiting for the next two months to get a small bowel follow through done basically to tell her what ISN"t wrong with me... Im so frustrated, I'm scared to eat and I'm tired of being in pain and not being able to do much including going to work. I have no idea what to eat and not to eat, or what might possibly help when I get that horrid pain in my guts. I'm actually sitting here blocked up to high heaven right now...
Stacey
Ulcerative Colitis since 2002
Interstitial Cystitis since 2010
Asthma since 2011
July 12 2011 - Proctocolectomy with end Ileo (UC FREE!!!)
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