What is the most difficult thing about living with an Ileostomy?

what is the most difficult thing about living with an ileostomy?
being aware of "outputting" - 4.2%
feeling that the bag always needs to be emptied? - 0.0%
worrying about leakage? - 50.0%
body image? - 41.7%
feeling weak and tired? - 0.0%
I don't feel any healthier with it than without it - 4.2%

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Regular Member

Date Joined May 2009
Total Posts : 194
   Posted 11/7/2010 5:39 PM (GMT -6)   
I may have to have an Ileostomy done soon and I would like to know:
1. do you still take meds to control too much output?
2. do you feel weak?
3. what is the most difficult thing about living with an ileostomy?

Post Edited (Gilda) : 11/7/2010 3:42:05 PM (GMT-7)

Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 11/7/2010 5:43 PM (GMT -6)   
     My ileostomy is great!  No problems with it whatsoever.  Maybe a bit of irritation under the wafer.  Only med I take is Toprol for high blood pressure.  My main problem is in the anus..ugh....going back to the surgeon on Tuesday.  I did have a hematoma which had to be drained back in September and it feels like it came back...God I hope he squirts some novocaine up my butt if he has to do that again..I almost went through his roof shocked .
     I have a permanent ileo...colon and rectum removed but he left my anus intact, said there are more complications when sewn closed...what the heck you call what I am suffering with now though..lol.

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 11/7/2010 6:24 PM (GMT -6)   
I feel soooooooooooooooooo much better with an ileostomy.

1. No. the only meds I take are for allergies and prenatal vitamins.

2. I feel waaaay stronger and have more energy now. I knew I always felt tired with u/c, but I didn't realize how awful I felt, b/c I just got used to it.

3. For me, it's body image, but not even the bag so much, as the scars from all the stuff my abdomen went through.

Wearing an ostomy appliance is like wearing clothes. You get used to it, and can't even feel it after a while. If you think about it, you will feel it, but it doesn't 'pull' like I thought it would.

Veteran Member

Date Joined Mar 2010
Total Posts : 1595
   Posted 11/7/2010 7:08 PM (GMT -6)   
I take no meds in regards to my ileostomy, just for Parkinsons. I feel good. I walk a lot and run with my dog. I feel confident when I am out as opposed to when I had UC. This afternoon I was at a banquet to accept a racing award for a friend......in front of about 400 people. I spoke with confidence and never thought about my pouch. Three years ago, NOT A CHANCE. Tomorrow is my third anniversary of my surgery.


Regular Member

Date Joined Oct 2009
Total Posts : 474
   Posted 11/7/2010 7:31 PM (GMT -6)   
Since I have a loop ileo, I will occasionally take Immodium to control output. If I'm out with friends and stuff, going to a bar, out to eat, etc. At work not so much because my job my boss knows about my condition and doesn't care. Another one of my coworkers was having the same symptoms and he was recently diagnosed with Celiac's so people tend to understand about the issue.

Weak? Nope. I'm back to my old self. After going though an awful eight month flareup, I didn't realize how bad it was until after surgery. I went back and looked at the pictures my fiancee took the morning of my surgery and I was literally dying. I'm not sure how much longer it would have been until I ended up in the ER but I was down to 125ish lbs from 185 lbs only 8 months before that.

The most difficult thing? Probably getting used to it at first. I'm still self-conscious about people noticing the bag when it gets full, but I have yet to have anyone ask me about it. I can't stand not wearing the ostomy belt when I'm in public, it's just something I got used to like contacts.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Temp Ileostomy and colon removal surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Takedown surgery - 8/?/2010

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 11/7/2010 8:24 PM (GMT -6)   
I can't think of anything difficult about living with an ostomy, but I can think of about a hundred things that were difficult when I was sick with Crohn's.

I have tons of energy now, am 100% healthy, do not take any medicine, don't need to see doctors, exercise often, work full time, and am super happy that I can eat whatever I want, am never in pain, and don't need to be near a bathroom anymore!

I thought that I would not be able to wear a bikini, but I wear one with a skirt. I thought that everyone would know that I had one, but they can't tell. I thought that I would have to wear baggy clothes to hide it, but I don't. I thought that I wouldn't look or feel sexy, but I do. I definitely didn't look or feel sexy when I was sick.

Hope that helps!

:-) Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 11/7/2010 8:38 PM (GMT -6)   
1. do you still take meds to control too much output? No, I eat a very 'fresh' diet...meaning that I don't eat things that are processed. Fresh fruits and veggies and lean proteins. I don't have to drink extra liquids either since the foods I eat supply a lot:)

2. do you feel weak? Only after a 13 mile run!

3. what is the most difficult thing about living with an ileostomy? Not having time to read in the bathroom!

When I was sick I lived in the bathroom:( and never had energy.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 11/8/2010 7:04 AM (GMT -6)   
I think the ileostomy has given me freedom that I didn't have for a long time. (from pain, bathrooms, insecuritym accidents, depends, tiredness, not eating, ect....

I don't take meds except extra vitamins, and iron shots once a month.

I feel pretty strong and can swim, run and bike again but not as intensely as before. Or as long periods without care. Would like to do an ironman again someday and actually think it's possible, even if I couldn't win.

Worst part is the leaks at the most awful, inconvenient times. Middle of teaching aerobics class and standing in line at my son's wedding reception. Small price considering I couldn't have done those things at all without my little stoma, Bubbles.

Can't believe I waited so long and fought the whole idea so hard. The options just melted away before me as I struggled along. How crazy is that.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 11/8/2010 9:01 AM (GMT -6)   
1. do you still take meds to control too much output?

Never have nor do I ever anticipate having to.

2. do you feel weak?

Not at all!

3. what is the most difficult thing about living with an ileostomy?

I don't have any excuse to get any reading done while in the loo, two minutes and I've emptied and I'm out of there!
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums


I'm not a complete idiot - some parts of me are missing!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 11/8/2010 6:05 PM (GMT -6)   
1. i take vitamins, and if i dont want any output for a while i will take some immodium, or if know i am eating something that causes gas i will take some gas-x.

2. I have energy now, lots more than i did before.

3. the scar is bad i don't like it,but it's not a problem or anything, honeslty, the thing that annoys me most is that i have to put stuff in my left pocket instead of my right!
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!

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 11/8/2010 6:36 PM (GMT -6)   
1. Nope!

2. I have more energy now than I did before..

3. Worrying about leaks (it's not that often. Maybe once a month at MOST). Plus my skin is breaking out under my wafer...not sure what to do; I've tried everything. I can't not waer the wafer though...but still...never once have I regretted my surgery.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 11/9/2010 1:14 PM (GMT 0)   

Hi Gilda,

At home, I don't really find any tricky issues with an ileostomy, so far anyway, and it's been 3 years.

BUT while traveling I find I have to manipulate the consistency of the output as if you're not near a bathroom on a cruise side trip you want it thicker like pudding, not very active and runny like water.

SO FAR, wrap wood, my side trip breakfast that works for me is milk, pancakes, and eggs.  Then I go for a walk on deck then empty.  Then I drink a ton of plain water.  That seems to absorb into my body without speeding effluent flow.  I avoid any sugar while on a side trip and I also don't eat.  Then when I get back into the ship I eat and drink and use the bathroom.

BUT under normal circumstances like at home, as long as I don't get any adhesion related issues (so far so good with none for 3 years since I got the ileo), then there really isn't anything tricky about this. 

My thought on your case is that you may have some pelvic floor issue where if you thicken your effluent too much you can't poop it out rectally.  If all was well with your pelvic floor, thickened effluent should logically just come out of you quite easily.

I think an ileo would serve you well.  Rosemary

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 11/9/2010 11:29 PM (GMT -6)   
you can thicken output with those gel tabs, put three of them in your pouch and they make it thick
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!

still a lot to learn
Regular Member

Date Joined Nov 2010
Total Posts : 33
   Posted 11/10/2010 8:45 AM (GMT -6)   
I had my perm ileostomy in Aug '09, still learning what products and changing schedule works best, still feel like a novice.  Luckily my anus and rectum were removed too so I don't have any of those issues to deal with.  (mooping!)  LOL at the word.
1.  I still use Immodium and Lomotil, but *much* less than before the surgery.
2.  I do get tired at times, but *nothing* like before the surgery.  Before my surgery I was so ill and worn out from constant diarrhea that my teenage children and my sisters were doing my grocery shopping, laundry, house cleaning, yard work.  I was able to drag myself to work 2 nights a week and spent much of my shift in the restroom.  Since my surgery I have my life back!!  I do all my own chores!!  I work 4 nights a week and often stop in the fitness center at work before I leave! I take walks!  I visit my kids at college!!  My house is in the middle of woods and it's always been a chore to keep leaves off the grass this time of year. The last 2 years I was useless.  This year, I am keeping my yard green! YAY!!
3.  The most difficult thing...hmm..Probably my awareness of it almost all the time.  Sometimes I feel so preoccupied by my stoma:  Is it going to leak?  Worried that I will lay on my belly in my sleep and cause a blow out.  How long will this wafer last?  What is that itchiness? is it a problem?  What will I see when I remove the wafer for the change, some new problem? (I've had a couple of skin issues)  I am a nurse so I see other stomas, and I compare how mine looks to theirs (their stomas look more healed than mine).  I have a couple of great wound care nurses where I work and I often go pick their brains for ideas or suggestions.
I would like to put body image as a problem for me too.  I wear baggy tops, maternity tops, flared skirts.  I am far from a fashion plate, but I am comfortable.  I just turned 50, got divorced 5 years ago, would like to try dating, but can't imagine any man ever wanting any thing to do with me again.  I am so aware of this bag, it's hard to believe that others don't see me as just a big ostomy bag walking around.  LOL
When I was first home from the hospital I was on the phone with a good friend, he heard the very busy stoma making noise and he said, "Oh you are percolating!  You sound like a coffee maker!"  We both had a good laugh, it was the precise desciption.  I try hard to deal with things with humor.  I attend meetings with an awesome ostomy support group.  That helps a lot too.
Good luck with your surgery if you have it.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 11/10/2010 2:06 PM (GMT -6)   
nurse the longer you have had it, the less you will think about it. and i know that you think people can see it through your clothes, but they really honestly cant. I promise!
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!

Veteran Member

Date Joined Mar 2010
Total Posts : 1595
   Posted 11/11/2010 12:45 PM (GMT -6)   
summerstorm and nurse
That's absolutely true.......as long as you are not wearing just a tight Tee shirt!


New Member

Date Joined Nov 2010
Total Posts : 4
   Posted 11/12/2010 10:32 AM (GMT -6)   
For me it was the leaking!

Went to the Dr one day cause my stoma came out by 2 inches, he pushed it back in. Returned to my office and all of a sudden I felt something warm, I was leaking SO much! Stuffed papertowels down my pants (I was wearing sweats, because of the leaking issue). Luckily I live close to work so I was able to run home and change. And no sooner did I change and return............it was leaking again!! Needless to say it was an awful day!!


New Member

Date Joined Sep 2010
Total Posts : 16
   Posted 11/17/2010 1:17 PM (GMT -6)   
everything! I have a colostomy though and not an illestomy. mine is only temporary though due to emergency surgery. from a bowel obstruction caused by severe endometrosis. I get reversed hopefully in mid March, 4 more months.

1) being aware of outputting. yes, I hate that I can't control my bowels or output. feel so gross walking around with stool in a plastic bag on my stomach. I am still using the clear bags so I can see all the output.

2) always feeling the bag needs to be emptied. I never get heavy output usually unless I eat a heavy meal or depending on what I eat. but when I do get heavy output it always seems to hit me in public at the wrong times. and I am such a clean freak that if I get the least bit of output in my bag, I am running to go clean it out in the bathroom.

3) body image. definitly! I hate shopping and trying on clothes now. I am like down to a size 4. yet I am still buying size 8 pants and bigger shirts to try to hide the bag. but I still notice it. I have never showed my fiance the bag or let him touch me there. I refuse to change in front of him anymore. and we haven't been intimate since the surgery (my choice, not his) and won't til I am reversed in 4 more months. I feel so ugly and gross. even though he tells me everyday I am still beautiful and the bag doesn't bother him.

4) worrying about leaks. yes all the time. I had one where I was at work and stuck without any extra supplies and couldn't go home for several hours. nothing got on my clothes though. just leaked all under my stomach under the flange. don't know if anyone noticed, nothing was ever said. but other than that, I rarely have had a leak in the 2 months since I had the bag.

5) do I feel weak/tired? I feel about the same. I suffer from a underactive thyroid. I take meds for it but I get tired very easy. and I work full time in retail and working a lot of hours now with the holidays.

6) do I feel any healthier? there is no cure for endometrosis, just treatment which I am going through. I feel great. I never felt unhealthy before except for the severe flareups I would get with my stomach from time to time. I was rectally bleeding for 2 weeks before my emergency surgery and was having severe stomach pain. that is when they found the blockage. I was nausated and feeling like crap for about a month after my surgery. now I feel great, hardly any problems at all. appetite is finally back and I eat anything I want.

any meds? just my thyroid medicine which is 75 mg of synthroid. I also take 50 mg of prestiq which is an anti depressant. was severely depressed after the colostomy and still am but not as bad. I take daily vitamins. and once a month now I have to get a shot called lupron depot. it is to treat my severe endometrosis.
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