About Ileostomy

I would like to share tips, secrets, anything that helps intimacy be more alluring to others.  Dont be shy, I need answers.

Hi - I got my ileostomy 3/7/2022, so I'm about a month out from surgery. I was re-hospitalized with quite an infection, and so now that I'm home again I'm finally beginning to wrap my head around the day to day with the pouch. 

My output is not extremely liquid like it was at first, but it's also not very thick. I think this may be the case with ileostomies in general. What are your experienc...

Hi everyone! My name is Nicole. I am 30 years old. I was diagnosed with UC when I was 16. I have been struggling this entire time, switching medication and diets, trying to find something that will work. And unfortunately, nothing has helped. I am currently getting Entyvio infusions every 4 weeks, taking Lialda every morning, 9 fiber pills a day, and sometimes maxing out at 8 imodiums a day. I ...

Looking for feedback from those who have ileostomies and especially anyone who had a colostomy that was changed to an ileostomy.

A little over 6 years ago I got a permanent colostomy. But now my gastro doctor said because of a bad stricture and polops in my bowel he is recommending to my colon surgeon that it be made into an ileostomy with most of my bowel removed--right now I have about 40% o...

I have had an ileostomy for 51 years. Does anyone have any information on how long a person has lived with an ostomy? Also, any information about conditions that are caused by having ileostomy for so many years would be appreciated.

Hoping someone out there can give me some words of wisdom.  I had ileostomy done 2 1/2 years ago.  Due to chrones and my colon exploding in seventeen different biopsied pieces, I had a Very Good outlook of my surprised surgery after a colonoscopy, mainly cuz I was no longer in awful pain 24/7 anylonger.  However, my great mood has slowly turned into a very depressed (even tho I fight it) ...

What foods do you eat? Also I don't have a large intestine so that compounds the problem.
What foods to stay away from that cause gas and how does the gas come out, does the pouch expand out, I know NOTHING about this. Consult is Fri-13th, yeah!!!! I dread this and also is anyone expericing acid..... I have alot of anal acid that keeps me raw and in pain, do you think or does anyone know if th...

Hi ...i had a emergency ileostomy done in feb 2012. I was on life support and in a coma in icu for over 4 weeks.

It was a shock to wake up with this bag hanging off me....they said they could do a reversal....in a few months...

Well a few months turned into 15 months....because i had a infection and plus the surgery was scheduled 4 times and cancelled....twice by the doctor..to put a emergenc...

Well friends once again I'm in need of information. A little background, two months ago I had to buy new jeans so I got them a couple of inches larger than normal, next I put on my braces to keep my pants from falling to my knees. As i sit here now, no braces, no belt, top button open. This started about two weeks ago after getting some sharp pains above and below the stoma and a circle about s...

Hi all, I’m new to this site. I’m here trying to get other people’s experiences that might be similar to my mom’s. My mom is 78 and has been living with a colostomy bag for about six months now as a result of having a perforation in the distal sigmoid colon. We are discussing the possibility of reversing the bag. We just met with a colon and rectal surgeon to get a second opinion and sh...

Hello does anyone know what food to stay away from or what is good. I only had this done so I am all new to this.

Hiya everyone. I am soon to have surgery for ulcerative colitis. I'm just very confused which surgical option to choose. 

- I can either choose to have a total colectomy with removal of rectum and anus and have a permanent bag.

- I can have a j-pouch formed and have a temporary ileostomy while it heals and then have it reconnected later on. 

- or if undecided they said they can leave the r...

I have to have one last surgery to take out the rectum (can't leave it due to cancer risk) as I've decided not to re-attach.  Haven't had any issues since my ileostomy 4 years ago and don't really want to go through the recovery and possible complications of re-attachment. The main problem is that I am healthy and have to go in for surgery which will make me feel crappy.  It's easy to go in...

Hi all,  Well, I thought I was done reporting about my hospital experiences, but I was wrong!  I had only been out of hospital for one month since getting my old colostomy stoma and large bowel removed and everything with my ileo (which I've had for just over a year) was working just fine, until Sunday night.  I started having severe pain just after going to bed.  I tried all the recommende...

I am looking for advice on what I can eat that won't go right through me. I had my ileostomy surgery 8 weeks ago and can not seem to gain any weight. I have tried protein shakes with a banana, jelly beans, crackers, etc. I had lost over 40 pounds when I was sick and have only gained six pounds. Any suggestions would really help. Please and thank you.

i seem to always be hungry and since i cannot eat raw fruits and veggies..does anyone know what to snack on?? i have an illiostomy so whatever goes in comes out pretty quick  thanks< >

Hi All I have a 6 month old ileostomy  and this is ust a question regarding hydration with an ileostomy.  I am drinking lots of fluid I including at least 1 litre of ORS daily. I have noticed that my urine output is nowhere near as much as it was before my ileostomy despite all the fluids. I tend to have pale to straw coloured urine and don't feel dehydrated. I did read that ileostomates do h...

Can I ask what others experience has been with weight gain (or lack thereof) following an Ileostomy?

I had my Ileostomy coming up to a year ago (it will be a year in May). This was after suffering from an acute attack of Severe Ulcerative Colitis.

Before the illness I was about 75 kgs. I'm 5 ft 9, so I wasn't a muscle man to start with, but was a fairly respectable weight.

After the opera...

I was wondering if anyone has any experience with wearinig their pouch sideways.  I use a two-piece pouch system.  My stoma is located in a kind of different area - pretty much in the front/center of my abdomen, just to the right and above my belly button.  Therefore, the pouch hangs pretty much down the center of my body from just under my bust to my crotch.  Normally, I wear long blou...

I have itchy skin under the tape around the appliance. I have had the ileostomy for nearly 3 years. I have no leaks and the itchiness is not under the flange. It is under the tape. Any ideas of what I can do? I also use fungal powder before installing the appliance. Is it possible I have developed an allergy to the tape (part of the Hollister appliance)?

 

Newbie here, with a question. Ive read and watched videos of people wearing jeans with their stomas. Do you have to wear a stoma cap to do this? How do you keep from squeezing the life out of the stoma? Im not sure how high waist jeans would work either...like I said, new to this and not sure how to get past having to wear leggings all the time. Any help would be great :)

I had an ileostomy in April 1983, then in October 1987 I had a (BCIR) Barnett Continent Ileostomy! Does anybody out there have one? I was in Mississippi and met 2 people; however, I cannot find them? Freka and John Busan?

Hey friends!< > So I am eligible for the j pouch reversal, but I’m very conflicted. As someone who had severe UC, I can imagine that I will possibly face complications with pouchitis, and honestly I don’t miss being on the toilet 6+ times a day, which seems standard for the j pouch. < >I’d love to hear from those who have had their ostomy for 10+ years on how aging with the ostomy has been/ if...

I haven't posted much here in my seven month journey as an Osteomate, but I have read a great deal.  There is so much wonderful support here and, alas, much need for support.

My colostomy was the result of diverticulitis, an exploding intestine, and a severe case of stuborness while I somehow decided that intense pain would just go away...even though the pain got to the point where I had lit...

I am having a very difficult time dealing with living with an ileostomy bag. I am not a candidate for a J-pouch and I gave up on love because who would want me like this. My surgery was on NOv 2018. Prior to that I have been living with Ulcerative Colitis since 2001. I am undergoing chemo for stage 3 rectal cancer, and if anyone I didnt tell anyone they would know by appearance. How did you ove...

Just over a month since my perm ileostomy. Have had moderate to heavy anal discharge and thought it was the rectum healing/weeping (surgeon left a rectal stump) or an infection.

Saw surgeon last week ... he's saying it's the UC in what's left of the rectum .

I see my GI specialist tomorrow.

Darn - I still have to use a heavy menstrual pad and am back on the Salofalk suppositories. And I...

Hello everyone......i just want to complain for a bit.......ive had a colostomy done in january 2010 and almost lost my life.  I had that reversed in september 2013 because the surgeon felt it would give me back life....im really not sure why he said that because i absolutely loved my COLOSTOMY!!!

Now fastforward to present day i had an emergency surgey done february 2015 and had all of my c...

How does a person adjust with an iliostomey ??
Ive had this over a year now and it doesnt seem to get better. I think sometimes how id love to be the person i was before. I do have a chance of revesal but im so scared to go thru this again. When I had this surgery, which was a flute from a sm bowel obstruction and a busted appendix, I remeber how I had to regain my walking skills again and I c...

I have had my ileostomy for three years now and still have not gotten used to it. If I eat after 2pm in the afternoon I am up all night having to empty my bag or in fear that I will have a break because a thicker consistency will break through the barrier. This ensures that I only eat once a day really and I am constantly hungry. Also, I have yet to figure out which product will work to make su...

Wondering if anyone has had a tummy tuck while they had an ileostomy. After a year of leaks and daily bag changed and skin breakdown,my surgeon with the assistance of a plastic surgeon is going to perform a tummy tuck in an effort to make the pouching surface flatter and hopefully fix my issues. Anyone had this experience? 



 

I've had my ileostomy for a year and a half now and feel I haven't to accepted or came to terms with it. How would people advise I try to accept it

Hello,

I began to formulate this very question to my male surgeon and he got so embarrassed he mumbled something incoherently and said he'd send me in a female surgeon to speak to me about it. Well, she never showed up and I am left with no answer. I am 6 weeks post op and can tell my body is not healed enough yet. But my main man and I long for one another. It's been approx 10 months since I ...

I wanted to put a quick update here to let those interested know how I'm doing since my ileostomy reversal 3 months ago.
I had good progress for the first 2 months but the past 3 weeks seem to have gone backwards.  I'm still in a lot of pain and spending too much time in the bathroom (8 - 12 x daily).  I am housebound all morning and if I need to go out at all, I fast beforehand.  Gas and...

Hi all,

About 8 months ago, I (ilostomy '09, proctectomy '11) started hgaving some intermittent, occasional pain to the right of my ostomy (about 1 to 1.5 inches from the stoma).

Saw GP who seemed to ask the right questions and said it was probably muscle related (ostomy working fine). I had had a particularly active few months ... so with my poor abdominal strength/muscles, his diagnosis s...

Hi, new poster. Searching for a reason. My bag changes were about five days until recently. Now I am able to get only 3 maybe 4 days. Two questions. First I enjoy one can of beer on occasion; does the alcohol break down the pectin faster?

Second, the Hollister bags recently became more flexible. Could that cause a more frequent  bag change?  I like the flexibility but would like longer chang...

hi. i have had my ileostomy for 2 years now. I was single before my operation and have 2 lovely girls. I would like to meet some special, male.

I have tried dating and obviously have had to tell potential new boyfriends. I found that very hard as I cant really come to terms with it.

They have been reassuring that it makes no difference.

Why do I feel after telling them I am not good enough,...

Hi, don’t have a bag yet but we are in process of scheduling a colonoscopy before surgery to do ileostomy and probably total colectomy. I have been on a fairly restricted diet due to motility issues, so a lot of what I’ve read about easing in after surgery is what I’m doing now. The biggest change will be volume, drinking before and after meals, etc.. My dietitian that I met with once sai...

Would like to chat with anyone who has had a continent ileostomy.< >

I have had an ileostomy for 18 years.  I was diagnosed with UC and was incredibly ill for years hence the bag...  I was told I could consider the j pouch op but after years of ill health and then feeling great finally I decided to forgo more surgery and just live with the bag.  

Then last week, I spoke to a specislist about a reversal.  He told me he could join me up without the jpouch and...

I had Crohn's and got an ileostomy in 2009. I am a 65 year old man who has been married since 1972. I have read similar stories as mine on this site. My wife is my ostomy nurse (she helps me shave and change my bag). I don't know what I would do without her. But, that is where the love stops. Since the surgery we have become nothing more than roommates. The sex and romance are gone. It wasn't g...

My doctor, a colorectal surgeon, has recommended a temporary ileostomy for puborectalis contraction and constipation that have resisted other treatment for years. I'm trying to seek out ALL the information I can beforehand. I want to be prepared particularly for the smaller details I should expect. I want as much of the stress and shock as possible over with while I'm not sick either from a col...

Hi everyone,

         first time posting, I have an ileostomy since xmas eve 2009. (emergancy surgery). I am 55 year old female and live in Australia. I have gained 30kgs since then. Cant seem to loose any weight, getting a bit depressed about it. Just wondering if anybody else has had the same problem. If you can help me please let me know.


              cheers but...

I am trying to find some sort of diet regimen that will result in weight loss that will work in harmony with my food limitations with my ileostomy. Most standard weight loss diets require a lot of fresh fruits and vegetables. I have discovered (over the past 30 years when I had my ostomy surgery) that I am extremely limited in what I can eat in the fruits and vegetables department. Too much rou...

Short version:

I am a FAP patient and I will have my colon and rectum removed. My doctors want me to go for the J pouch but because I could develop polyps in there and also because of all the possible complications/issues (explained below) that could come with the pouch I am thinking about going with an end ileostomy which for some might sound stupid but the less surgery the better for me and ...

Once again, I am turning to you all for advice. My surgeon had told me that, once in a while, I might find that I pass mucus from my rectum, even a small amount of stool. He did remove about 1/3 of my rectum but said I still have enough of a functioning rectum that this could occur. Well, in 3 weeks since my surgery I have now passed stool 5 times. This seems crazy to me. It's always a sma...

Hi. I am new to this group. My son is 26, he is scheduled for completion protectomy surgery in a few weeks time. Last March he had sub total colectomy and end ileostomy. His sigmoid was too inflamed to be removed which is what they are removing and the rectum. 

His surgeon gave 2 bits of advice. 

1... loose some weight as healing will improve post surgery and eat accordingly (because of my ...

So I am presented with changing my colostomy to ileotomy due to chronic constipation and obstruction issues from that. What are the pros and cons to having an ileostomy over just a revision to colostomy.

I am 7 months out from surgery and still have lots of output and frequent trouble with bags coming unattached. Also have trouble with skin inflammation. I'm wondering if my body will ever adjust and calm down to a more predictable routine.

Hi

Keen to one day return to running. Not sure if I need a support belt. Not sure what type of bag might be best. Any tips and information appreciated.

Hello. I am still getting use to my stoma and have started running again. Slowly.

And was wondering what your set up was like ? Hydration, what bag?  Any tips or advice

All being well i hope to do a long  distance at some point later in the year

Thanks

Eddie

Hi ladies,

This may be a silly question but I will ask it anyway.  I have a important event coming up next month.  I am round around my belly.  I know a lot of women out there wear spanx to help with fat.  My question is has anyone heard of a product that does the same thing but you can use it with a bag?  Any advise would be appreciated.  Thanks, Pamer

I'm hoping someone can help me...I've had Crohn's for many years and had an ileostomy done more than 10 years ago. I've recently had a complete proctocolectomy and my husband and I are wanting to start a family. Anyone out there been pregnant? I've heard that fertility decreases due to the crohn's and surgery? What can I expect during pregnancy? Will I be able to care for my stoma myself?Is the...

Hi all,
Fairly new to this site, not too sure if I am in the right place, just wanted to know if there is any info or what is everyone's take on salads? That seems to be the one thing I miss not eating. Has anyone here eaten salads, and have you had any problem with lettuce? Thanks for any input.

Hi all 

I am new to this forum so apologies if I have posted this in the wrong category. 



I had a loop ileostomy done less than a week ago and I have a question about medications, specifically about slow release anti depressants. I am on Effexor XR, 150mg, per day. I believe it's the slow release type. Does anyone know if these slow release type of medications are absorbed by the stomach/b...

New here and new to having an ileostomy. I have to drink pedilyte (or gatoraid/power aid) and I started drinking cherry punch pediyte with ice this evening and had a banana for a snack. My output looks red. Could it be blood? Or is it probably just from the drink? I have a ton of cherry popsciles I'd like to eat as well and they are super red, so I want to know whether to expect this or be cons...

Hello!

This is my first post on this site. One of the things I was curious about, and am hoping people have real experience and tips for, is how to manage with an ileostomy and traveling, specificaly in New York City? I fear this ileostomy will be permanent for me, and am struggling with a lot of the things this means for me as a young adult woman. As I am figuring things out and trying to sta...

I'm 5'0 Ft. and about 90LBs and am having a hard time trying to figure out how to dress since having my surgery.  Because of my small frame, any little bulge shows. . . I wear oversized tops in order to hide it, but sometimes that doesn't even help.  I used to wear jeans, but now yoga pants are my jam. . . but not by choice.

I'd like to be able to wear whatever I want.

How do you dress with...

Hi All,

First post on here :) 

Brief background on me. Diagnosed with UC in 2018. Been on medications since. 

At this moment I have two medications left. However I'm heavily considering elective surgery later on this year. I see surgery as a when not an if, and would rather I'm fit and well when I have surgery rather than in a serious flare up.  

In terms of the ileostomy, I have two ma...

I am 1 year post-op after my ileostomy surgery I had performed at the Mayo Clinic. I still have daily pain from the hernia involved - most days are manageable but some days are very painful. After my surgery, the Mayo Clinic told me I cannot take Vicodin for pain management because it will cause a blockage. I had a particularly painful weekend so I saw my local GP doctor this week and brought u...

Hello all! For some reason, I seem to have lost the ability to send private messages on here, so I thought I'd just put my news here. I'm to have an ileostomy on 4th December! Not much fun but I'm looking forward to spending much less time in the bathroom when it's all settled down! Got my pre-op appointment on Saturday afternoon, and a meeting with the Stoma Nurse next Tuesday. I've got loads ...

Hi Again ! Today makes 3 Months with my Ileostomy ! The only vegetable I have eaten is Green beans and Potatoes  :( !!! And Mostly chicken as far as meats go !!I have been scared to try any other veggies !! Help !???

Hi There,

Just thought I'd introduce myself and ask a couple of questions. I've been reading the forum and I have found it SO helpful and SO uplifting. Thank you for your kindness and openness. 

And now I will reveal what a spaz I am ;)

I am a 40 year old female, generally healthy but last year got a horrible attack of acute diverticulitis (7 hospital stays, an abscess, a perforation, etc)....

July 11th is my follow-up scan to check the big C business...been doing treatments every 2 weeks for months so it's almost time....So has anyone drank this gastrografin and if so how did it effect you and or your output etc.....If ya believe in prayers I will take every 1 of them for remission or controlled...thank you all have a great 1....remember it's free to be kind 

Hi everyone! Im new here.  A quick recap of my life.  About 22 years ago, i was diagnosed with UC.  I was treated with meds for 3 years but it was quite aggressive, so i had my colon removed and j-pouch surgery in 2000.  All went well (temp ileostomy for 3 months, takedown surgery, then, well, life went back to normal...or new normal). Then Thanksgiving 2018 i started feeling bad.  I thoug...

Hello everyone it's me again! And I think I might have a interesting topic I was searching for this topic to see if it was already discussed but I didn't find anything so here it goes.

Ok as a "Medical Marijuana Patient" I smoke not everyday like a stoner would but here and there and it seems to actually help me in a way with my ileostomy it relaxes and it calms me down and overall I like it t...

I'm going blind (and not finding what I know much be out there) looking at the websites -- so maybe someone can lead me in the right direction.

I'm interested in getting a support belt. Not one of the narrow ones that attaches to the pouch and just holds it down better against your body.

Something wider (hopefully not too cumbersome) that goes around the body, supports the abdominal area, a...

I know this may sound weird but...is water heavier then ice tea? For some reason, I can drink all the tea & soda I want but when I drink even a little bit of water, it comes out IMMEDIATELY and with force, usually causing a leak.

I don't drink alot. I have a cup of hot tea in the morning, then a glass of iced tea with lunch, then 2 glasses of ice tea with dinner, then maybe a glass of gingeral...

Does anyone have problems with making the underneath part of this bag (the part that attaches to the skin) last 3 days like they're supposed to? I do!

The stoma nurses/doctors say that seeing a white line around where the bag is fitted after a day is normal, but I think It's a constant worry, because after just hours of having a fresh one on, it feels as though it's going to crinkle or tear. ...

Ileostomy due to rectal cancer surgery here - just 4 weeks in.  Still getting used to stuff.

Some days it's like peanut butter, but for the past 2 days it's been complete liquid.  I know this is based on what I eat, but I had lots of pasta yesterday so I'm worried about the output.

MAJOR MAJOR gas too!  I'm going to try the marshmellow and BEANO advice you've all given here.

Is it alwa...

I am scheduled for a colonoscopy on Thursday and pretty confused.  I still have my colon, but due to abscesses on my colon and a fistula, I was given a (temporary?) ileostomy. Trying to get a correct diagnosis.  My question is: why do I need to do this movie prep and fleet enema when my colon should be empty from all the testing they did in my two week stay at hospital.

Also, can anyone a...

So, I posted once before about the constant back pain I now have since surgery. Well, at my second follow-up I brought it up to my doctor who "assured" me that he's never heard of such a thing.  Am I just crazy or aren't there plenty of you out there who now suffer with back pain.  I should mention I have an ileostomy.  Needless to say, Christmas shopping has been just about impossible be...

I have a new ileostomy . Still struggling with what I can and can't eat. Just wondering if I can eat canned carrots without them causing a blockage? Thanks

 

Hello

My name is Mike, 34 and I have recently joined the Ostomy Forum. I have had my permanent ileostomy now for a few years due to Ulcerative Colitis and a failed internal pouch. Ever since my surgery, I have always had problems with extreme fatigue and tiredness, lack of motivation, dry eyes and dry mouth. To control my output, I am currently taking Loperamide (10mg) and Omeprazole (80mg) on...

I'd like any information, advice, referrals for doctors that did a phenomenal job with a vaginal hysterectomy, with a patient that has an ileostomy.  I have the operation set up however, my doctor is concerned with the complexity of me not having a rectum etc.  I'd appreciate any insight! May you all have a very Happy Thanksgiving! 

I had a LAR with ileostomy in Dec 2018. After the post-surgery chemo, my doctor is pushing a reversal. Prior to the LAR I had radio/chemo. It was successful as the pathology report showed that cancer has been downgraded from stage 3b to stage 0. I had 27cm (10.6") removed which included all my rectum and probably most if not all the sigmoid. I also had some burning / scarring in the 'back passa...

Does anyone with an ileostomy have shortness of breath and if you do, do you know the cause and solution

 Also no energy. Thanks

hi all,

 

i’ve had an ileostomy now for nearly two years and because of high output have an ongoing problem with low magnesium!  I spent last year, once a week every week at hospital having a day long magnesium infusion which was starting to play with my head, slowly bringing down my mental state!  For the first part of this year it seemed to settle but in June I suffered a blockage and ...

Greetings! I'm asking this question on behalf of my husband who has been an ileostomate for 10 months now. While he's adjusted admirably, there is one issue that is ongoing and causing him quite a bit of stress.

It seems that everytime he removes a bag in order to replace it, his stoma will expand. We aren't sure if it's the air hitting it, or if it's because he does it immediately after taki...

Hello,

 

I have always been very active all my life, no IBD, but...I broke my butt...yep, that can really happen and need advice from real experts.

Lifting weights, age and years of spinal damage from doing the same culminated in nerve damage after an exterme lifting session that left my rectum paralized.

I have gone from exercising every day for the last 40 years (since I was 16), sociall...

Hello all I have had my little friend since December 2011. I did think it was hard enough finding a fella as a single mum but this makes things that much more harder.

I met a guy on a dating site so have had the chance to get to no him and him me before meeting. Well the time has come to bite the bullet and will be going on a date tomorrow night. The only thing im worried about is telling him...

I have had my ileostomy since 1991 when I was 19. I am now 42 and have started having open wounds develop on the skin immediately surrounding the stoma starting about a year ago. I have never had this occur in all these years. These wounds are not being caused by any excoriation issues, changes in skin care products, my hygiene routine, etc or anything else I can possibly think of. I am a regis...

It's been 10 days since my ileostomy reversal - thirteen months after cancer surgery. I'm in the throes of agony dealing with ULARS  (ultra low anterior resection syndrome) which I hadn't heard of until last week. Not one person in my medical team ever mentioned there would be anything more than some incontinence, frequency and urgency issues - all of which go away. I've learned differently. E...

Hi all, So, is this even a thing? I've had my ileo for just over a year and I've noticed my skin is dry as the desert. I've always had dry skin, but this is beyond what was normal for me. I know you don't retain your water when your large bowel is not in play, but I drink tons of water and other liquids to compensate. I am getting older, 70 now, yikes, and I know it's normal for skin to lose it...

Hello!

Has anyone had a their ileostomy refashioned due to retraction?

Especially if it’s over a year after it retracted? 
My stoma retracted soon after my surgery but not quite sure exactly when because I was so unwell. 
The surgeons tried to fix it initially but said they couldn’t because I was too unwell and it would need to be done by someone more specialist around a year after when I...

In 2008 at the age of 20 I inherited a neurological disorder that caused 15 daily BMs and a constant fecal smell. Other than nerve problems of the internal sphincter, my health & fitness were excellent.

In July 2013 I got an elective sigmoid colostomy. I still smell like feces and have been severely bloated since surgery. I'm very lean and barely eating but have a huge stomach most of the time. ...

I've been having problems with my ileostomy for well over a year and been in and out of A&E with severe abdominal pain several times. The A&E doctors only seem concerned that the stoma still has output. It stops working while I'm having the episodes of pain but there is always eventually some output. Once output resumes I'm treated as a pain management case and turfed out home again.

I'm takin...

I have been recently told that seatbelts and ileostomys do not mix.  In a serious accident you would bleed out so fast that it would be all over quickly--  This was from a very reputable medical person.  

I know I find the belt most uncomfortable as I have an ileostomy and do the driving thus the hook is on my right side.   I was told that cushions or a small pillow will not help in an acc...

I had surgery 2 weeks ago. Besides just feeling numb, I can't shake this overwhelming feeling of fatigue. Will it get better? I would have posted this in forums but don't know how? I click on forums but nothing comes up to post on. < >

I recently had to have an emergency right hemocolectomy which resulted in an Ileostomy. This was due to my bowl twisting and completely rotating. The result of this was a lot of my colon died and was removed.

I am greatful to be alive as it was a close call but have found the suddenness of it all quite hard quite to adapt to. On top of this I have a long standing eating a ( anorexia and occasi...

Hello, I’ve had my ileostomy for five months now.  I have to travel to Europe in the not too distant future and quite honesty scared of the entire journey.  Can anyone give some advise I.e. flying, bathroom, eating, drinking and staying sane? Any help would be appreciated. 

Hi Guys ........

It looks like I will need to make a decision before long as to whether to have an ileostomy or a colostomy which I will have to have for the rest of my life .....(currently have an ileo...)  I am fortunate enough NOT to actually have any 'bowel problems' per se as do many of you, but wondered if anyone out there had any experience of having both? What are the pros and cons, ...

Hi all,

What are others experiences of flying in the UK with an ileostomy?

The specialist assures me it is safe to fly, but why do I get the feeling you have to have been there to really know what it's like?

I'm due to fly next month (internal flight) but am a bit concerned about security checks - presumably my device will show up on the bodyscanner - am I then asked to step into a door f...

Hello everyone.

I have recently been told that my bowel resection/reversal is likely to be in September this year which is earlier than I thought. Great news but less time to lose weight before surgery. surgeon says it will make things easier - want to lose weight gained recently in any event. In the past prior to ileostomy and gastro problems had a lot of success with Slimming World which es...

Hi, i had a stroke in august of 2011 and soon after they found a tumor in my large colon, upon having it removed i was left with an illestomy and annoyingly very little support after the first time i needed to change my pouch (so all my "knowledge" is self taught from trial and error and blogs online and such, so appologies if i use a wrong term).

I was due to have my reversal in may but i was...

Hi I just had the ileostomy but im finding it leaking. Is this normal ?

I have never suffered from back pain until now.  I am now 4 weeks post op and find the littlest amount of walking and/or standing causes me terrible back pain. Even when I'm sitting down I must prop pillows behind my back to avoid the pain and discomfort. I'm wondering if anyone else had this problem post-op.  I'm hoping this is maybe because I had a large incision cut down my belly.  Any...

Hello my Ileostomy bag keeps filling up with water been doctors they gave me dirolyte and immoduim but nothing working. Can someone help me please ?

Hi there, 

the last few days I have had this horrible feeling the way that I felt pre surgery when I had constipation. I have been taking tramadol due to abdominal pain and Im wondering if this could have caused constipation. Is it possible to have constipation with an ileostomy?

 

Thanks, Hannah

Ok Ostomates.....I'm facing surgery to remove my gallbladder in the near future (I meet with the surgeon at the end of this month to schedule). My PCP who has referred me for surgery has told me that it will be a very complicated surgery because of all the previous surgeries I've had and all the scar tissue I have as a result. I know it will be open surgery because I've also been told I cannot ...

Has anyone tried doing yoga with an ileostomy?

 

I am interested in finding a blog about eating healthy, vitamins, for people with an ileostomy. I would like to eventually make the move off anxiety meds and dig deeper into healthy eating. We have some challenges with not being able to take time released, coated pills. Also having an ileostomy and the challenge of know what vitamins we need that we may be falling short of. 
I would hope to fin...

Hi everyone!! I have been cleared for surgery and have scheduled it for early this upcoming December. I am having a total colectomy with the formation of an ileostomy. After 13.5 years of Crohn's/Ulcerative Colitis (Drs still can't figure out which one it is), I am ready for this surgery. I was wondering for those of you who have had the surgery...

1) What is something you wish you had known b...

Hi Osto-friends..I have had permanent Ileostomy for 20 years with a couple of trips to the hospital since then....this past mid December I had a partial blockage which sent me to hospital by ambulance ...they were able to get things moving after about 6 hours on IV drip plus meds..I was able to go home and of course told to drink lots of fluid.. it was a horrible week after with emptying bag af...

Hi Gang, particulary my fellow ileostomates.  I haven't yet been able to get an answer from the medical community, so I though I'd go to the source.  I am trying to gauge what is "normal" in my new world as an ileostomate.  I feel like my transit time, that is the time it takes for what I eat to exit my body, is longer than it should be.  So what is normal?  I have read many posts from tho...

I just have been diagnosed with recurrant bowel cancer, my question is has anyone got a ileostomy and a urostomy. this might be a question that will have to answer to if i get the option after my pet scan results. I would like to make an informed choice on this matter.
If i'm lucky enough to get this option. As it is ,i will be getting my whole pelvis cleared. Will it be worth it? Can anyone h...

Here's my question does any one have the first two condition's and do they use Metamucil?  I was just wondering if I should start using the Metamucil again, would it help with the diarrhea and or what other benefits that I might get from using it.


Thanks a bunch
Terr

I have had Norman for 2 1/2 years now and appart from the occasional urge to pass mucus which I was pre-warned about, have this week been for a pooh twice!!! It is real pooh, the same colour as it used to be, and I am quite concerned. My stoma is working but at the same time this has happened??

I have had stomach aches a bit like the old monthly pains and my back has been hurting but why is t...

Do you have web sites to recommend for buying ileostomy bags on-line with no insurance?

I am looking at Coloplast 16768 which is not available on Amazon.  Thanks in 

Would like to know what exercises are good for a iliostomy person like me.  I am 61 and fairly active and love to hike.  I would like to trim down everywhere and around my belly area.  Any suggestions.  I did join a fitness center.

Hi all. My mother was recently in a head on car accident (oct 03 '14) in Spain - visiting from the UK for a friends birthday - and it resulted in her having some of small bowel removed under emergency conditions due to heamoraging, I am here to find some advice for her.

She now has an ileostomy from this surgery (05 oct). After about a week in ICU she is now in a *normal* room with her husband...

Greetings to All....

I am jotting down and seeking help on behalf of my beloved Aunty.

    My Aunt is 52 yrs old who has undergone major surgery due to ovarian cancer in the year Aug 2013 and was under chemotherapy.Due to obstruction, On Feb 26th 2015, she underwent ileostomy surgery where she got her stoma. After the surgery, Again she was on chemo but that didn't help much so the chemo m...

My ileostomy output is sometimes thick, sometimes thin and sometimes like water. I'm used to that, and I know that foods can affect the consistency. But I also have noticed that sometimes the output seems what I might call "blended"--a smooth consistency--but a lot of times it just seems like chunks of various sized pieces in a watery base. Is that typical? Has anybody else experienced this?

Stage 4 colon patient here, Mets to lungs, liver, nodes.  59 yro had original resection with resulting ileostomy.  Wanted bag gone 8 months later had reversal.  Been total disaster with incontience, pain, and burning.  Having colostomy placed in 3 days.  Wondering about eating habits with a colostomy as all I seem to see is ileostomy cases.  Did fine with my ileostomy but was busy every 2...

I had an ileostomy Feb. 2nd colonic inertia and pelvic floor issues. Before the surgery, I was probably a little over-the-edge with saunas because I couldn't stand the thought of what was happening with all the toxins since I was only able to go to the bathroom every couple weeks or so. Now, I'm noticing a bit of a muffin-top starting and want to nip it in the bud. I would like to do my workout...

Hey Everyone,

 

I have recently been diagnosed with gallstones and need surgery.  Anybody with an ileostomy and gallbladder removed?  Any changes in output?  Im mostly concerned about the change in output, as I have never really had bad issues with leaks and what not.  I know the more watery the output, the greater increase with leaks.  Thanks for any insight or advice!

Been lurking for a month and want to give Kudos to all for sharing their knowledge and experience.

Back in the first week of May I had bleeding diverticulosis and after the first surgery there was a leak that caused (for the life of me I can't think of the word) an infection which required a second operation to drain the area that resulted in the Ileostomy.

So last week I met with the surgeon...

Hi, I have an extremely large, heavy & painful stoma hernia (2nd one in 2 yrs).  My GP contacted surgeon staying he advises urgent surgery. Surgeon says (without seeing me) I've to wait 12+ mths.  I almost have to "carry" my hernia around, suffer excruciating pain and constant leaks. I'm virtually housebound and desparate.  Can anyone advise me how to seek help/who to appeal to please? Thanks

Can a person with an Ileostomy still scuba dive or snorkel??  I know swimming is ok.

Im getting a colostomy reversal and incisional hernia repair and diverting ileostomy . Anyone been thru that,whats it like. What am I in for?

I see alot of people talking about a colostomy and irrigation and being able to go without a bag for a while.  I am somewhat confused between the two.  Is an ileostomy when you lose all or most of your colon and a colostomy  when you still have part of your colon working??  When you have an ileostomy, you can't go without a bag or wear a plug but do people have control when they have a colo...

I am having my first colonoscopy this week and I have an ileostomy.  I dont understand why they have mailed me the golightly and pills to take after I heard that someone with an Ileo should never take laxatives.

Isn't it dangerous to drink a gallon of that vile demon liquid?

 

Thanks guys. As always very helpful!!!!

 

 

Need suggestions for what to eat to thin ileostomy output. I know lettuce makes it pretty liquid. Anything else?

Hi all.  Looking for feedback from anyone who has had a reversal or is being considered for one.  I am 3-1/2 months post ileostomy and my surgeon has said I am a candidate for a reversal.  He wants to scope me next month to make sure everything "looks good and healed" and if it does he plans to do a reversal in March which will put me at 5 months post ileostomy.  Originally he told me s...

I am 9 days after surgery. Nothing could have prepared me for this. The pain, not feeling well, the constant trips to bathroom. Its hard work. I have had leaks and dont know why. Not being able to do much for myself. They kept telling me in the hospital "your doing great, your doing great". When I got home totally did not feel like Im doing great. My ostomy nurse ordered me supplies and now I h...

Hello, I am 9 weeks post op from getting an ileostomy and everyone says to slowly increase your diet. I tolerate carbs. with no problem, but I also do not to gain too many pounds. Any suggestions on proteins, receipes? Thanks, looking forward to hearing back. One "mate" to another

I just had a Ileostmy due to a failed jpouch. I'm 2 weeks out. Sorry, I have no patience but I'm just so tired. Beyond tired, I just want to get back to life again. How long is a recovery? And what can I do to speed things up? 

Anyone that has an iliostomy have or are on Lomotil would like some feed back my dr put me on it today due to output is so frequent and having to empty my bag all the time, Thankyou.

Hey guys. I have had my little friend (I call him sammy) for 8 years and was out on a very strict moderate fiber diet. 8 yrs later I'm still trying to figure out what I can and cannot eat. For example...i love honey roasted cashews...can I still eat a bit at a time? What about sourkrout? I have found that, with moderation, I can eat a lot of things on the "no no list." 

 if any of you can le...

I got my ileostomy in 2016, and have been absolutely miserable since. It has nothing to do with "Ruby", it works fine, no weeping or sores; it's me! I feel like a misfit with this pouch in me. First of all, I'm only 4'8" tall, so the average 11 inch pouch lands on my thigh. If I roll it up and tuck it into my panties the velcro closure cuts into my groin (plastic clips are worse). I can't use a...

I have had a permanent Ileostomy for 18 years and have very loose bowel movements..I empty often throughout the day and night and have always dreaded the putrid smell from contents which would literally stink up my bathroom for hours regardless of how many times I would flush toilet or use air fresheners.. a couple of months ago I Googled anything that may help and found a Hollister product cal...

Is it 3, I guess so as it is 2am. My ileostomy is gurgling embarasingly loud but I'm alone so only I hear it.

My surgery went well but longer than expected...the 3 hour time slot ended up up being 7 hours. They scraped part of my rectum and it's lymph nodes. And then obviously removed my whole colon. What's weird is in FAP you get clusters of polyps. I had just little polyps all around. And my...

Is it  normal to have a bowel movement out your rectum? Has any one experience this with a ileostomy? My grandmother has had a the ileostomy for at least 3 years.

I need guidance from another ileostomy person please . 
I know I cannot eat apple peels ,cucumber peels,pepper skins ...but can I eat and pass Potato Skins ? 
Im afraid to try as I don't want/need a blockage. I have NO large intestine at all.

Thanks,Ritz

Hello everyone,

I've not been on here for such a long time. Last time I was on here my boyfriend was facing the prospect of stoma surgery back in the summer, and now here we are, 5 months later, with a very special little friend we've affectionately named "Rocky".

Having Rocky in our lives has changed everything. Mostly, I'm pleased to say, for the better. My boyfriend has adapted to life wi...

Hi all.  Been a while since I've posted.  On March 4th I finally went in for my reversal.  Since that time I've been incredibly sick.  I've lost 10 lbs.  My nausea has been the worst ever and I've got constant abdominal pain (not surgical pain but gut pain).  To top it off, unlike most who undergo a reversal and suffer with diarrhea, I am incredibly constipated and unable to go.  ...

I am new to this forum.  I had an ileostomy for one year and just had it reversed in August of 2014.  I am having a difficult time and would like to meet individuals and have them share their experiences with me.  I am seriously considering going back to the bag as I definitely feel that my quality of life was better.  I should have done more research on my own.  However, my surgeon explai...

Has anyone had a stoma prolapse and had to have their ileostomy moved to the other side of their abdomen along with an abdominal hernia?

Hi everyone, I didn't think I would have so many problems before and after my ileostomy surgery. Question(s) I have today is what would anyone recommend me eating after ileostomy surgery, they told me liquids at first then move to solids and so on. I am having trouble keeping anything down since I believe they gave me to many medications that make me very loopy and not me at all. These medicati...

I’m having a ileostomy Reversal one week from today… I’m nervous as hell, not from the surgery itself but from the healing afterwards.  I’d love to hear of some advice or anyones experience.

I just swallowed a while small olive and I'm afraid that I'm going to get a blockage. I'm looking for any advice. 

So as most of you have sensitive stomachs too, I do like to travel and travel a lot but always end up having a day into my vacation where I get travellers diarrhea -want to know what you guys pack in this instance? Do you take anything prior to trip during etc ?

 

Thanks 

It has been almost a year after my second surgery and I have started to pass odd mucas material through my anus.  This is like thick putty, slightly pinkish.  It makes me feel like I need to move my bowels but my large intestine was removed because it died in less than 24 hours.  I have never had this before.  It has a very bad odor but it is not hard material, rather more soft. Since this ...

I'm a relatively new Ostomate... Colostomy Sept 2019 changed to an Ileostomy Jan 14 2020.

 For 2 months with my new ileostomy I was doing ok, trying different procucts to meet the need of a highly liquid & at time high volume output.

About a month ago after regaining about 5 pounds quickly I started having leaks... Before when I had a Colostomy with a thick output I rarely had leaks... a few...

I'm very depressed in my morning routine. That's what starts my day. I need to get up 5 hours ahead of time so I can make it to work. I just focus on time, and stress if my stomach will slow down in the shower or not. I need to know what meds when combined slow down osteomyelitis output. Right now I'm on loperamide 2mg tabs 13 in am and 13pm, I'm also on tincture of opium and I take 1.2ml in th...

Help! I've had an loop ileostomy for 4 months (colostomy for 10 months prior to this).
I still have a small amount of faecal matter passing through my large bowel and due to the Imodium to slow my bowels done, I am now really constipated.
I've tried Fleet Enemas, Microlax, Fleet Mineral Oil, Cooking Oil and water but nothing is shifting it and I'm in a lot of pain.
Does anyone have any suggesti...

I've noticed 2 or 3 times my husband's ostomy seemed to retract, which of course makes it harder to fit the flange as snug as we'd like.

This seems to happen when there was pancaking. And it always returns to its normal slight protrusion.

It sure is a frustrating game trying to figure what works best. We think we have it figured out and then OOPS no we don't. Or I guess what he ate or drank c...

  I have three outlets in my stoma. One is an iliostomy that is VERY liqued unless I take immodium or something to slow down my gut.  The second is what they call a mucous colostomy that for the most part just has clear mucous but from time to time has stool.  The third is a tiny colostomy outlet that backs up and has resulted in three or four ilius situations.  The stool that comes fro...

Hi,

I'm a registered nurse that has just started working on  a general surgery unit. I don't have that much experience with changing ileostomy appliances. I had one patient the other night who's ileo appliance is always leaking. Sometimes her appliance is changed 1-3 times in a 24 hour periord. We use eaken to fill in any skin depression in order to increase the seal... The problem is that ...

Hi: I am a 53 year old woman who has had an ileostomy since January 1996 due to ulcerative colitis.  I haven't had too many problems over the years expect for a few blockages due to bad food and taking codeine for a toothache pain.  But last month (October 2010) I was diagnosed with breast cancer.  Thus I have 2 questions: (1)  I am worried about the side-effects of the upcoming chemo, ...

Does anyone experience low body temperature especially cold hands and feet with having a illeostomy. I am wondering if not having a colon  could cause this ?

Hi, O'mates!

I've had a chronic UTI, and I believe it's due to being an ileostomate and not getting enough fluids to my bladder, frequently, to flush out bacteria.

Do any other ileostomates have this issue?  And if so, have you tried the new-ish product Uqora?  How did it work for you?

Thanks in advance, Everyone!

Lily17~

 

Hi everyone! I am new to this kinda thing!

So i had my operation last August due to severe ulcerative colitis. I was wasn't suffering very long and the fact i had a major operation very quickly was a bit of a shock! I had to have a sub total colectomy and an ileostomy. So far everything is going ok luckily enough! I have a choice of getting the ileostomy reversed later this year. The surgeon ...

Hello all! I need some advice. I have had my ileostomy since 10/11 & we are just now getting into the heat here in the South. I was at my daughter's softball tournament yesterday & it was about 90 degrees here in Georgia. I drank ALOT of water & Gatorade yesterday & also ate fruit, but was really dehydrated & zapped from the sun yesterday. I am afraid that I have seem a glimpse of things to com...

Hi I am an almost 23 yr old female who just had to have her colon removed for having severe C.Diff for over 3 1/2 years and it was causing major problems causing my kidney function to go down to low 70's and exreme water retention around 15 lb's. I was wondering from other people who have had there colons removed how much weight they have lost in the 3 weeks after surgery. Different doctors hav...

I have ostomy on my left lower abdomen. For the last year I have been experiencing a burning sensation from left hip bone to left edge of ostomy. No pain but the burning at times is very uncomfortable. I have a nice size raised area underneath the sticky portion of my wafer hence making the wafer on the left side pull away from my skin and having to change it. I seem to be changing it every day...

Me again.  I keep writing because I find myself so lost in this whole thing.  Question for anyone out there that has undergone ileostomy reversal.  I've been told if all goes well and I heal well I should be able to undergo ileostomy reversal in 6 months but before that I will have to successfully complete a defecating proctogram.  Because my rectal muscles don't work real well I did no...

Hi friends,

I’m new here and new to ileostomy life so I’m really hoping someone can offer some help or advice…

just to give the full picture, I had my surgery on 7th June 2022, so not even 3 months yet. My ileostomy ‘lips’ have been for the first month and a half very small and neat. When leaving hosp I was a 25mm. 


On Wednesday 10th August 2022 I saw my surgeon and showed him a p...

Hi all! I am a 48 year old male and I am one week post ileostomy takedown. I had a temp ileostomy for 5 months due to bowel resection for diverticulitis. I read many horror stories online in my quest for information and I have to say I couldn't be happier with the way things have turned out.

I had my surgery on Feb 19 at 8:30 am and by midnight I could feel my bowels starting up. The sounds were...

Hi There! First of all, thank you for taking your time out and reading my post. I had an emergency operation of tuberculer intestinal obstruction and 3 feet of my small intestine was resected and ileostomy was created. One night I felt something weird (like a shock) near my stoma something like my intestine is pulling inside and whenever this happens gas came out, discussed with many doctors al...

Dear All,

I have a partial gastretomy and an ileostomy for almost a year now. I live in the UK. Recently I have started to throw up a lot. I don't know what best to eat or drink. I wonder does anyone have a similar experience and if so could offer some advice? Thank you very much in advance for your help. 

I have a loop ileostomy and had the surgery due to dymotility of the gut and pseudo obstruction( no longer had any peristaltic wave to move things along ) this happened after two lots of major surgery on my spine done through my abdomen. I had the surgery done one year ago this month. The problem I now have is that I have a buildup of mucus in my back passage fairly high up and can't get it out...

I'm having debulking surgery for ovarian cancer in a few weeks and need to prepare for a very likely ileostomy.

I don't think the one-time visit with a stoma nurse pre-op is going to cut it. I want to be prepared before I go under the knife so I know what kind of food and supplies and incidentals to have on hand when I return from the hospital. From what I gather, I'll get some "lessons" in th...

Hello everyone,  I am asking a question about the skin around my ileostomy.   It is quite red and sore.  It looks like it is irritated where the stiches are starting to disolve but it is really burning.  My first stoma used to be about 1 1/4th inches but the stoma nurse told me this one is a little larger, about 1 1/2 inches.  I am not sure if I should be cutting the skin barrier a little ...

I've heard a colostomy output is a less watery, but that's about it. Anyone knowledgeable on this?

Hi

I am 8 weeks post surgery for Panproctocolectomy with permanent ileostomy and just wondering if anyone can tell me when I could start back at the gym ? I am currently walking a lot each day and feeling fine.

I was hoping to start cycling/cross trainer/swimming with maybe some light weights.

The last thing I want to do is cause any damage and end up back in hospital so would appreciate any...

Has anyone had only colon remal. And had a success rate. 

Hello,

I'm soon to get an ileostomy but there's one thing putting me off massively! I've heard for a few women now that vaginal intercourse is either impossible, very sore or (for lack of a better way to say it) can't go very deep after the surgery.

I've had appointments with my consultant and 2 stoma nurses who have never heard of this but they also gave me a leaflet that said exactly my poi...

Looking for opinions on ileostomy reversal...my surgeon has told me I can in fact get this reversed, as soon as next month. I'm wanting to be sure this is the thing to do. Just looking for others opinions or what they would do in the same position. Being still new to this, there may be things I have no clue to think about before making this big decision. I also have Crohns to factor in as well....

I had my surgery in March. Since then I haven't slept through the night. I'm so exhausted. I used to wake up every hour to dump but now it's longer...maybe 3-4 times a night. Will this ever change? How do you sleep through the night?

Has anyone had a problem with Medication not having time to disolve with a iliostomy? It seems a good part of my med's do not have time to disolve. The pill is still whole when it comes out. There isn't a liquid to replace the pills, I have asked. I have also tried waiting 2 hrs after I eat, that helps some bit it still happens sometime. When I try to time it, I often forget to take it. (I thin...

Hi anyone -
Following a question I asked in another thread and based on Does reply -
is it possible that I may have crohns or UC orsomething and we can't tell because I have an ileostomy - how would itpresent itself in that case, any ideas?
Currently experiencing
bad gastric reflux/horrid taste in mouth bloating nausea fatigue muscle aches/tics/generalised pain all over sleep disorder - apnoe...

hi

I have an illeostomy have had it for 4 months any tips would be a great help

what is the difference between an ostomy and an iliostomy--I feel so stupid for asking. I am four months post op. I had my colon removed and I am new on your link.

Hi I am new to this site and would like to find out about lossing weight. I had rectal cancer in 2007 and have had 4 opperations and this is my second Illostomy, had one for a year then had a reversal then had a year of pain they had to give me another illostomy.I have only had this Illostomy for 10 months I have been in remission for a year. I have gained some weight and want to lose it but no...

Hello All,

In March of 2022 I had surgery for rectal cancer and I currently have a temporary ileostomy. Today, for the first time I drank cranberry cocktail juice. I have noticed that my output is really dark. Has anyone else experienced this from drinking cranberry juice? I have left a message for my doctor as well. 

Can it be reversed? Ive searched and searched for any info on it and i'm coming up with nothing.  I'm OK with living with the bag I just didn't know if maybe sometime down the road i wanted to reverse it, I could? Anyone know anything about that?

Hi everyone, serious newbie here.
I am due to have an ileostomy in a few months time. I have had a stoma for about 15 yrs due to having an ACE button. But having an ileostomy bag is scaring me to death, although I know it's going to make my life easier and hopefully I will be able to start going out and about again and not be tied to a loo for hours on end!
I was just hoping if anyone can te...

How often will I have to empty my ileostomy per day? I know it's different for everyone, but hoping to get a general idea. Also, will I have to set my alarm at night to get up and empty it several times a night? I have surgery March 21, 2014 to get an ileostomy. I am not thrilled. :-/

Just got my ileostomy yesterday. And oh my stars! It is noisy! I hate it! When air passes through it, it literally startles me because it's so loud! And it's so embarrassing! I don't see myself going out in public with this noisy thing... EVER! Does anyone have any tips/suggestions for sound-proofing???

Can anyone tell me how often you should change your bag.

I'm sure this questions been asked many times....

As mentioned on my profile I've put off getting the Reversal done for around 5 years.Aside from being a bit unsure of the outcome there were other circumstances too,unfortunately.

I was to get it done about 2 years ago,but my dear Wife of 16 years,Tracey was rediagnosed with Metastatic Breast Cancer in June 2014,but this time it was through he...

So I went to a doctor that sounded confident he can reverse my colostomy, but he would have to give me an ileostomy for a min of about 6 weeks, then reverse that. Has anyone else gone through this or know someone who did? What differences are there between a colostomy and an ileostomy? I know I e is large bowel and I e small, but that is about it at this point. Does this usually work to get whe...

Have ileostomy. Still have colon. Sometimes still have small rectal discharge (poop), usually very liquid type. Surgeon said its normal due to colon still producing mucus and poop. You would think the medical field would make you aware of things like this. But they don't. Just about all ileostomy people have a discharge if they still have colon. Hope this helps someone.

I had an emergency Ileostomy May 16th. I was connected to a wound vac in my incision. My problem is that my 6 inch incision is only about 1 inch from my stoma. The bags that I have researched all are too wide and will stick to the incision which is not healed and very tender. Does anyone know of a bag that is narrow enough to fit over my stoma without touching my incision?

 

Hello, 

I am new here, but not new to digestive malfunctions. It's finally come time to say goodbye to my colon and at this moment I'm not too sad to see it go.  I can no longer go to the bathroom on my own and my pelvic floor is all messed up from 16 years of colonic inertia. 

So now I'm going to get the colon removed and getting a permanent ileostomy.  I cannot be considered for reconne...

Hi there.

Can anyone comment on using a CPAP for sleep apnea with an ileostomy? I am having some problems and wonder if it is just me? Thank you!

maryellen

I was in a motorcycle accident last August. Very lucky to be alive. Broke back in three places. Done spinal cord damage. Broke 11 ribs. Collapse one lung partially the other lung. Which lead to being on a ventilator that lead to having a tracheotomy that lead to pneumonia and that infection settled in my colon. Couldn't get rid of infection so they had to do a total colon or large intestine rem...

What does an Ileostomy blockage feel like?  I am experiencing really painful cramping on my upper right side of my stomach, across from my stoma.  The area around the stoma is very tender and sore but not like a skin rash sore. It is more deep inside.  Thinking it was a blockage,  I switched to liquids for a day but the stoma is putting out material into the bag.  When it empties, it is re...

I currently have an ileo-anal anastomosis and will be having elective permanent ileostomy on Oct 26.  I had a temporary ileostomy back when i had my first surgery 30 years ago.  I remember how liberating it was after 3 years of full-flaring UC.  I look forward to the full liberation again as i've suffered a very painful fistula for 29 of the 30 years.  I've just bore the pain but now that t...

Well, I've been in the Hospital now since late Wednesday night.  I had another blockage and this time the CAT scan showed another problem and enlarged intestines.  I have had bad bouts of pain since getting the first emergency surgery.  I was basically unable to eat anything without difficulty.  I have been telling the doctor for the last 5 months that something was not working right.  My ...

I realize leaking is going to occur periodically. My husband lost a lot of weight so he does have creases in his skin. We are still in the experimenting phase and I've watched a few suggestions on you tube. We had some success with the paste for awhile and also with the slim barriers. Someone suggested Hollister adhesive spray. Have any of you tried this and any other suggestions? He's a prior ...

Hi prior to surgery in Jan 2018 i was a size 10 then due to ill health and an over abundance of steroid medication i put on 5kgs in weight. I just cant seem to shed this weight conventional dieting is no good for me as i am limited to what i can eat and when i do eat can only tolerate child size portions my 5 year grandchildren eat more than me. 

Does anyone have any suggestions i cannot cope...

Hi all, on vacation in pv, ended up going through three times the supplies I thought I would.  Does anyone know of a location to buy more supplies down here? Thank you kindly

Hi

I am a new member and looking to see if anyone else has experienced some of the issues I currently have.

I had an Ileostomy surgery in July due to ongoing bowel issues for 3 years with no response to treatment and causing severe weight loss. Since having the procedure I now suffer the same symptoms with high output stoma which Imodium is not currently being responsive. I also have high dig...

Hi everyone!   I'd appreciate feedback from others with an ileostomy who have had to deal with "stones" that we can get from time to time... kidney stones primarily.   I've had my ileostomy for over 30 years now, and seem to get a kidney stone like every 5 years.  Doctors tell me most likely they're caused by general dehydration from having an ileostomy (despite drinking what seems like pl...

A year on and I'm still not sure what the best things to eat... My diet is very minimal and because i have also Hiatus hernia with constant Gerd.... So have to watch what i eat with that too!.... 

I love mushrooms but told not to eat them

Salad...

most food i love seems to be a no no ... lol 

Hi,

It's been a long while since I have posted. I have an ileostomy and may possibly have a blockage going on. Please remind me of what to do at home to try get beyond it. Thanks

I've had my Ileostomy since November 2005. Everything has been going fine with the Ostomy EXCEPT. I seem to have reoccurring kidney stones. Has anyone else experienced the same problems? I drink plenty of water and try to watch what I eat but I still keep making them. Right now I have a stone (size of a peanut) in my right kidney. My Urologist  just completed blasting and clearing my left kid...

I’ve been told that the pain underneath the skin beside my stoma is likely nerve damage. My skin looks fine. Has anyone else been told this?