Lack of hunger and sugar sensitivity - ileostomate

Any ileostomates have lack of hunger and/or get severe diarrhea from sugar/fake sugars?
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any ileostomates with lack of hunger? - 100.0%
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any ileostomates get severe diarrhea from sugar or fake sugars? - 0.0%

 
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esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 12/21/2010 10:51 AM (GMT -6)   
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

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 12/21/2010 10:54 AM (GMT -6)   
Sugar is a known laxative for a lot of ileostomates so not so unusual.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

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esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/21/2010 10:57 AM (GMT -6)   
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

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/21/2010 12:26 PM (GMT -6)   
hey i would be happy with a lack of hunger, lol.

but yeah the sugar thing is common, if i eat a lot my output goes wonky too. You should have seen what happened after i ate all that cake the other day!
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!

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 12/22/2010 10:18 AM (GMT -6)   
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
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 12/28/2010 2:07 AM (GMT -6)   
Hi Rosemary,
 
Sorry it has taken me so long to write on this Forum after getting my temporary loop ileostomy on 11/23/2010.  I guess I still feel in shock that I actually did it.  Unfortunately I don't feel very much better for having had the surgery.  The only positive is that I don't have to use the bathroom so often.  I do have a liquidy output but I only have to empty my bag about every 3 hours which is an improvement from the chronic diarrhea I had after my sub-total colectomy!  What upsets me though, is that I still have many of the "weird" problems I had before getting my ileostomy:  never hungry (or almost never), can't gain any weight,  either freezing cold or burning up!  I sure don't have much energy either.  Many days I truly feel like I am 100 yr. old!  I am now taking care of my 90 yr. old father and he usually has more energy than I do.  I hope things get better but in addition to the problems I mentioned, I just feel so uncomfortable wearing a bag.  Within 3 wks of my surgery my stoma totally retracted; now my stomach just has a hole where the stoma used to stick out!  My Ostomy nurse said I am o.k. and that it happens to many people; just used a 1/4" wafer (opening) with an Eakin Seal.  I do have quite a lot of skin damage from leaks though.  I hope this all gets easier.   I am glad that you and many others are doing well though!
 
Gilda

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/29/2010 6:12 PM (GMT -6)   
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

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 12/29/2010 11:39 PM (GMT -6)   
It was great to hear from you Rosemary. I am still very impressed with all of the cruises you go on; so often I don't even want to leave my house. I guess I just have to get used to living with an Ileostomy and I am still at the "freaked out" stage. My doctor was hoping my health status would really change almost immediately but this isn't happening. I guess I am eating a tiny bit more so that is good. What is difficult is getting up 2-3 times a night to pee or empty my bag; I feel like I never really get good sleep. I don't think the freezing cold/burning up issue is hormonal because I have been using an Estrogen Patch for several years now and up until the Sub-Total Colectomy (my April 2009) surgery; I was fine in that department as long as I used the patch. As far as the stoma retracting I think it usually happens within the first few months after an Ileostomy; if it is going to happen. It was weird for me because within a 3 wk period (following the Ileostomy Surgery), I went from a large stoma which protruded about an inch to one that basically disappeared! It really just looks like I have a hole in my stomach, I can no longer see the stoma. My Stoma Nurse said; it's o.k. as long as your skin doesn't break down anymore then it currently is. He told me I really don't want to have any surgery on it for at least a few months; not a good idea in his book. Anyway I see my Stoma Nurse tomorrow for the last time (for Home visits); I guess I can always go to the Stoma Clinic if I need further help. I will be really glad if I can ever feel strong again; I still feel quite weak. I am trying to keep a good attitude though. Anyway it is really good to hear from you!

Post Edited (Gilda) : 12/29/2010 10:42:49 PM (GMT-7)


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/30/2010 2:11 PM (GMT -6)   
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
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