Loss of large intestine and dehydration

[only1marcee]

A little over 3 years ago, I had to have my large intestine removed due to a hernia and becoming septec as a result. The 1st year and a half, I spent more time in the hospital than out of it due to dehydration and accute kidney failure due to the dehydration amongst other things, the they decided that I should be on TPN and IV hydration at home. Well, I have been on the hydration for about 2 years now and got off of the TPN last May. I have tried to find help with diet and such as I want to get off the hydration too. I have an ileostomy and spend a lot of time in th bathroom. I am trying to find some help with diet and things that work for people like me there seems to be no one in the medical field that I can find that can advise me or even wants to help they just seem to want to "MAINTAIN" you as it is the easy way out for them. I want to get better and more back to normal. I still have all but about 4 -5 inches of my small intestine, they removed about 4-5 inches of my ileium when they did the surgery. I have about 4+ inches of my colon that is attached to my rectum/anus left, but it is sitting there unused. My underlying problem was Crohn's disease. Any suggestions would be appreciated!

[lashlypoo]

Sorry to hear that your having trouble with dehydration.. I have an Illiostomy because of Crohns disease too. I suffered for many years, no one could help me so, I stayed away from doctors till I really needed one. I developed fistula, three in all and my large intestine had become hard and I could feel material trying to get through what turned out to be very narrow colon passage. I was a mess but was determine to stay away from doc's till I had no choice cause I nearly died. Doctor thought I would not live and were surprised to see me a year after I had surgery.  God has a plan for me..
Anyway.. I was dehydrated constantly, and still and always will have chronic kidney issues.. it goes with the condition. I went to a Nephrologist, we decided after talking that maybe a daily dose of sodium bla bla, (can't recap the name, but I'm sure your doc will know) will help, it did.. also avoid excess perspiration, keep liquid with you always.. (I drink whatever I want), but stay away from alcohol, that stuff is the worst at dehydrating a person and not worth the risk to your health. Ultimately, unfortunately you will always have this issue, try to make the best of it. Once you get everything figured out, life will get better my friend. God bless and if you need a friend with this in common friend me on FB..  

[darkangelbeauty]

i know exactly how you feel.. my 3 daughters and i are patients at md anderson cancer center in houston, texas for Familial adenomatous polyposis (FAP) is an inherited disorder characterized by cancer of the large intestine (colon) and rectum... i had a temporary ileostomy bag that was reversed after 6 months... after the removal of my large intestine i couldn't keep nothing down.. i went from a weighting 95 lbs to 70lbs but it got under control thanks to my doctor.. i still have trouble from time to time.. but to help you need a be on a high fiber diet to help you absorb the nutrient you need.. i also take lomotil...  here is the site lots of people from around the world go to md anderson for different reason but they specialize in so many different area hope it help you in some way..
http://www.mdanderson.org/

[Mscowlady]

MARCEE:
   Hi, I have NO colon and very little small intestine left from Crhons disease, I was 27 and had the majority done then and had some more cut out a few yre back. I live on straight Codiene no tylenol just codiene and I can manage okay. yes if I drink only liquids tha tis what I put out. If i eat and drink little that seems to help alot. I do drink alot of water and never go anywhere with out a bottle of water with me, to the store, work driving in a car where ever.  I am a lttle over 55 now and yes its hard but just try to find a mediun where you are doing opaky.Aks the doc about the codiene I take 30mg every 4 hours and I 've been on it for almiost 10 years now. It works for me. My GI doc I love him said that if this drug fails then we can go to Tincture of Opium, but so far it helps me a great deal

[TrudieC]

You do have to drink though.  Yes, it is coming out but because you don't have a large intestine working for you you aren't absorbing enough of the water and the sodium and potassium.  You must take in lots of fluids and increase your salt intake.  Ensure you do eat potassium and magnesium rich foods as well - that can really help to keep cramps away.

[TrudieC]

I forgot to mention rice.  It is excellent for this.

[only1marcee]

Thanks for the advice. Unfortunately, the more water I drink, the more I dehydrate myself as it just goes right through me and out into the bag. I have taken Immodium and Lomotil (not sure I'm spelling it right) and they did nothing, I may as well have been eating candy. All sounds good but the eggs, they seem to come out as they are going in (sorry I know that is gross), but with an ileostomy, things are recognizable. All the rest I will try, and if there is more, PLEASE post it, my thanks! Like I said, I am only missing about 4 or 5 inches of my small intestine, and I know, somewhere out there there are answers to suit my situation, it's just finding them.
Much thanks!

[TrudieC]

Losing some of your small bowel does make it harder.  Some of the foods I found helpful to bulk your stool and slow it down are marshmallows, smooth apple sauce, and oats.  Eggs and low fat meat are good and only well cooked vegetables.  Really chew your food well.  Take a good multi-vitamin with B complex.  Drink, drink, drink loads of water.  Leave pop, coffee and tea alone as they can dehydrate you.  Sugar can cause diarrhea.  Are you taking any immodium?  You might also need an anti-spasmodic to help slow things down.