Lack of hunger and sugar sensitivity - ileostomate

Hi,

Have had ileostomy for 3 years due to irreparable gut injury (no underlying disease).  Otherwise very healthy.

Have this phenomenon that I wanted to see if anyone else has.  Two things going on.

1.  Real lack of hunger.  My electrolytes measure fine, in general I stay hydrated enough to pee out two quarts of urine per day (I was told to do this by multiple docs).  Eat light breakfast then it takes me about 8 hours to get hungry again.  So far so good and what I do eat passes. Weight is healthy and stable.

2.  If I have a lot of sugar (or especially fake sugar) in some food, I get severe ileostomy diarrhea.  One GI doc said I likely don't absorb sugar.  If I have a decaf latte with sugar and three scoops of ice cream SOMETIMES I will fall into a situation where I just fill bag after bag of clear yellow digestive juices and have to take 3 immodium before output slows and thickens.  SO, I obviously try not to do too much sugar and avoid all fake sugars.

My stoma nurse says she has not heard of this happening unless someone has the Noro Virus.  This has happened multiple times to me without having the Noro Virus and while the rest of me feels fine.

Does any other ileostomate have these 2 things or either of these 2 things going on with them?

Thanks, Rosemary

Shaz,

Are you kidding me? Why did only one GI doc mention this very off handedly in three years of the multiple docs I've seen? WOW!

Thanks so much for your response. Do you have any experience with the whole lack of hunger thing?

This forum is a God-send. Thanks for doing this for all of us.

Rosemary

Rosemary, I just wanted to pipe in here. I have only had my ileo for 6 months, but here is my situation.

I can eat candy, cakes, pies, chocolates, etc and this type of sugar does nothing to my output, I eat candy canes everyday, alot of them since quitting smoking, and the only ill effect I have noticed is a weird, orange output. HEEHEE It looks like neon orange. YUCKY

I can also drink sweet tea with no effect.

BUT, I can not drink any fruit juices because these cause me to have diarrhea. I am not sure what is up with that, but when my output gets too thick all I have to do is drink some grape juice or cranberry juice and it thins my output down to total liquid.

I have basically changed my diet to where I only drink water. I do occasionally drink lactaid milk with carnation instant breakfast or muscle milk in the morning to try to get some needed vitamins and protein to start my day, and I am okay with this too....

As far as appetite, mine is HUGE and I have to watch how much I eat. I have gained 7 pounds since surgery and I do not want to gain anymore. But, I have gotten many comments that I LOOK so much healthier than I did presurgery. Everyone said I looked gaunt and sickly before surgery.

I have still been walking everyday and have increased to 3 to 4 miles a day. I can do a slow jog, but this still seems to cause my muscles around my stoma to hurt. OUCH...so, I don't do this very often.

How are you?

Gilda, I am still out to sea cruising up South AMerica on way home from Africa cruise I went on Oct. 12. Am ready to get home but am enjoying all I can. I responded under Tracy's post before I saw this one. The internet connection on the ship really comes and goes. Today it is good. Sorry that your stoma retracted. This you did not need. However there are convex wafers and dip into the skin I guess, that people use with retracted stomas. My appetite never did fully return but don't forget that I was unable to eat for 13 months prior to getting my lysis of small bowel adhesions and ileostomy, so likely some nerve center or whatever stopped feeling the sensation of hunger. I am glad that you do not have to get to the bathroom so often, and your stoma (though retracted) is working, so at least that is something. You will have issues with skin burn and am glad you are using the Eakin. Also you may want to try some Stomahesive powder on the burn. Your stoma nurse must also have other ideas. Are they offering to re-do the stoma? What caused it to retract? Does this happen soon after surgery normally or can it happen any time after one gets a stoma? YIKES! As Tracy said in her separate post, this all does get easier with time. It used to take me 2 hours to change my appliance, now I'm down to 20 minutes unless it goes active, then it can take 40 mins. I change in the morning and eat nothing past 5 p.m. the night before, that is how I usually get it at a quiet time. I used to be chicken to change it now it's like brushing my teeth. I change every 3 or 4 days. Just part of the routine. I was curious to know what decision you had come to. Thanks for posting. Your either freezing or burning up sounds like menopause to me. I'm the same way and just a few years younger than you. I use an Estraderm hormone patch on my butt every 3 days (.1 mg) and that takes care of that issue.

Best wishes, Rosemary

Hi Gilda,

That is odd if the hot/cold issue isn't hormonal. Hmmmm, can't think of anything else. Welcome to the world of ileostomates. A solid night of sleep without having to get up even once, I think, is rare. BUT, at least you have more time between BR visits than you did before. Best wishes with the rest of this situation. I tire easily, have little appetite, have gained about 35 lbs, and I think my thyroid needs rechecking. Gotta do that when I get home.

Rosemary