MY Personal Ostomy Skin Care Tips

Good Skin Care is Imperitive

No matter what kind of stoma you have, it is very important to take care of the skin surrounding it. I have seen several sites recommending plain water with a cotton pad. But I am a firm believer in antibacterial soap. Unless you are allergic to this type of soap, it will not hurt you in any way. I have always used Dial soap, whether it be a bar or liquid. Every time you change your pouch you need to thoroughly cleanse the area around your stoma. Use a soft cloth. Just soap up the cloth and gently scrub that area. The soap will not hurt your stoma. Once you have cleansed it, you might just pour a cup of clean water over the area to rinse it or use a clean wet cloth to wipe the soap off. ~the only other reason you might not want to do this is if you have extremely dry skin. Then, just dab it dry if you can without spillage, because if you have small blisters you do not want to burst these by "rubbing" dry.

Every stoma site is basicly the same, but different too. Some people have an inverted stoma, some have one that will protrude.My stoma was slightly protruding. Sometimes what I ate would cause it to invert slightly, and it was a little painful for me. The pain doesn't usually come from the stoma, but mostly from the exit tissue being pulled or pushed.

I found Hollister products to be the best for me. Since it has been awhile that I have had to wear a pouch, I had to do some recent research on some of their products. What I found to be helpful in any situation was the skin gel protectant. Not only did it protect my skin with each change, it aided in healing my skin of dermatitis. It does have alcohol in it, so it stings greatly. But the alcohol seemed to heal my problem. ~please see dermatitis photo Once you have dried the skin, lightly apply the protectant, wave it dry, then apply the pouch. We all know that you have to be quick at this. I would fold over 3-4 paper towels and lie them on the bathroom counter while doing all of this, and keeping somethig close by to dab any spillage quick so as to not re-intoroduce the skin to it's irritants. In the time that I had my ostomy, I met only a couple of people to talk about this with. They were generally people I come into contact with as a nurse's aid. I had one fellow who firmly believed that using wet tea bags to dab the skin with, "through" the tape of the pouch, helped to keep his skin unirritated. I tried this once or twice, and it did help with small irritations but not for big blistery ones. Allowing the blistering to heal without it being bursted is the best.

It is always best to consult your ostomy care nurse or physician first.

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Dermatitis

Click thumbnail to view full-size
the stoma is also inverted
the stoma is also inverted
the stoma is also inverted

After Irritation

Once your skin becomes irritated it is a well known fact that keeping an appliance on is near impossible. Using a pre-paste helps if the irritation isn't too bad. And, using 2 separate pieces was always best for me. I used the wafer (one piece), then applied my pouch over that. I have seen where most people use the one piece product that has the wafer as part of it. The only problem with this is that it is "one piece". When you cut out the size to fit , there is no safety. With using 2 separate pieces, you assure for leakage. I would cut that wafer as close to the stoma as I could without it having sharp edges. I could dampen my fingers and soften the edges to fit perfectly. And usually your stoma entrance isn't perfectly round, but you know your pouch opening is, so custom fitting the wafer first assures that there is minimal leakage. Then I would put the pouch (with karaya seal) on top of the wafer. I know that products are very expensive these days, but if you have insurance to cover this, make sure to speak with your physician and make him or her understand that you need BOTH products to insure healthy skin. Without this insurance you are going to go through more pouches anyhow. Right?

Another source of irritation is that darn plastic pouch. Years ago, way before all these nice coverlets came out, I was a home economics student who enjoyed sewing. And together with my grandma, we designed our own coverlets. I have found a few sites online where you can order them, but if you know someone who sews, ask them to do some for you. It isn't hard, and it's much cheaper. Simply take one of your pouches out and lay it on a piece of typing paper. Hold it fimly down and trace around the outside. This is one piece of the pattern. I came out about 1/2" and traced another outside line to leave room for hemming.  Label this "front". You want to trace the entire pouch, top to bottom. The back side is the same, only you are going to measure and draw a circle slightly above the center that is the same size as the piece between your pouch adhesive side and where it attaches to the actual pouch . You will cut this circle out.  I made about 4 copies of this pattern. I also chose material that was pleasing to my skin first and foremost ( a couple of different types- flannel too) and then pleasing to the eye also. Silk or silk-types are a bother. They slip slide on the pouch and don't stay in place, so find a nice cotton blend that is just as pretty.   Just pin the patterns to doubled over material, all 4 if you like, both sides, and cut them out. Set aside the ones that won't have the center cut, and proceed to cut out your holes for the ones that do. Once you have this done, you want to take the ones with the center cut and do a close zig-zag stitch around the cut out on all of them. This will keep the material from fraying from a lot of use.   Then take all pieces and put in a very small hem along the bottom piece of each of them where your clamp would go. Once you have the bottom hems put in, and the centers too, you want to then pair the fronts to the backs. Before sewing, of course, you want to flip them so that the showey material is facing. LEAVE THE BOTTOM PIECE THAT YOU HEMMED, UN SEWN. Simply sew the sides together then flip back out. You leave the bottom open for quick empties, that way you don't have to take off the entire cover. You just pull it up/fold it, pull out your clamp and do a quick empty.

I did not rinse the inside of my pouch with every empty. This leads to softening of the seal much quicker. It all depended on the consistency of the B.M. With an Ileostomy, it's generally thinner.

Coverlets 2

One of the finished coverlets you can order from the koolostomy page.
One of the finished coverlets you can order from the koolostomy page.

Great Lady

I have had contact with Verna G. of the koolostomy.com site and she has had some information changes, so please note the above changed web site of hers and good luck with the coverlets. I couldn't have done without them.

She is a very nice lady and will be happy to help you.

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Comments 72 comments

Lgali profile image

Lgali 7 years ago

very informative hub


shawna.wilson profile image

shawna.wilson 7 years ago from Arizona

I commend you for writing about this...many people would be too embarrassed. I love the idea of making your own coverlet. I'll have to share that with ostomy patients. Great hub!


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Thank you so much Shawna. I just remember how alone I felt at that time and I know there are others out there.


Marisa Wright profile image

Marisa Wright 7 years ago from Sydney

I agree, great to see someone willing to share information on this. My mother had a colostomy and I'm sure these tips would have helped her.


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Thank you Marisa. And I have only touched the surface. It gives me hope, thinking that someone out there will read all this and know "they are not alone". Love your hubs too. You all are providing me with so much help. Be blessed!


Mighty Mom profile image

Mighty Mom 7 years ago from Where Left is Right, CA

Hi Anitariley, I came to see what you were inquiring about on the Hubbers Hangout. Guess this wasn't the hub where someone with a 12 score accused you of being too graphic and personal.

Knowing a bit about ostomies myself (have had 2 people close to me with them) I can read what you wrote with interest. I believe this subject would be very useful for many people. And good for you for sharing something about yourself.

I wish you good luck here on HP. Welcome!


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Thank you Mighty Mom. I have since broken this hub down into 2. And I also deleted the rude comment. I am a newbie still so it is taking some time to learn to edit and not make them so big. LOL I appreciate all your comments, and once I'm wel and on my feet again I am truly looking forward to writing some more.


Monica 7 years ago

What do i do if the filter leaks and gets on clothing. I am just 2 months pro op with the ostomy and now I am having this issue and is really emotionally draining for me. Another, i have the two piece also, and the piece against my skin does not stick for very long, Just something I need to get used toon or something I can do? Also itches like crazy, does that eventually go away?


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Dear sweet Monica,

I know all about emotional drainage. First, is the piece against your skin not sticking because of a skin issue, such as a rash? I'm really sorry I am just now getting back to you, I have been without a computer for a little bit. Lets start with the skin issue first. Get back with me A.S.A.P.

thanks~ Anita


Monica 7 years ago

Well you know...this week it seems to be working ok. I do have a red spot on my skin that really hurts. And then it burns sometimes when I put the paste around the stoma to put the piece against my skin on. I know the stoma is not supposed to hurt, but the area around the stoma does.


amanda 7 years ago

came across ur page, and I have an infant with an colostomy. He will have until he reaches 20 lbs. He was born with an imperforated anus. We were quite surprised. I was looking for ways to clean the skin around the ostomy, and saw your posting. I've been looking for soap that I can use to clean up the stickiness from the skin barriers. So I will try using dial soap! Thanks! Really informative page!


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Dear Monica- Think of pouring battery acid, or something similar to that, straight onto your skin and what that does to you. The BM coming from your stoma is quite similar. Anything you eat or drink that is acidic is going to irritate you skin. Especially things like fresh fruits, fruit juices, soda pops, etc.

I know it burns, it's like pouring alcohol or salt onto an open wound. The only way to get it to heal, and protect it, is to apply the Hollister skin barrier right over the irritation. I keep something to wave over it to cool it until it dries, then the burn goes away. The alcohol in it seems to dry it up quickly (1-3 days). You may even want to try things such as pepto bismol or maalox with your meals, or even a benadryl, to help reverse the reactions. And I will tell you all now, Beano should be your bestest friend. LOL

The direct area surrounding the stoma will hurt occasionally from any bulky, fiberous food that may be too large to pass through the original opening. Eventually, you will learn what foods you should or should not eat. If you should happen to feel constipated, and nothing is passing through, try the "milking" procedure. It will hurt a little, but it's better to get it passed through than to suffer. I am adding my email address here so that you can contact me with ANYTHING you need to know, anything I can answer any how.

anitariley65@yahoo.com

Good luck, and don't be afraid to email me for anything you need.

Anita


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Dear Amanda~ I feel so sorry for you and your child to have to endure this. If you cannot get the sticky cleaned up with dial, another thing that works quite well is regular, old, Dawn dish soap. I have tons of it around the house for many little things. Just wet your cloth and put a tiny dab of Dawn on the tip of one of your fingers (cloth over your finger) and gently scrub. GENTLY. It shouldn't hurt a thing unless your childs skin is sensitive to it. Think back to the old days, the only thing folks used as enema's was plain soap and water.

I hope this works for you.

Anita


myislam 7 years ago

thanks for the informative post.

http://skincarefree.blogspot.com/


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

You are quite welcome.


Karla Oz 7 years ago

Dear Anita,

Thank you for your helpful posts.

I am interested in reading about how you dealt with the irritated skin under the adhesive as our little 1yr old is using a one piece Hollister product which seems to irritate him. I am also having trouble cutting the wafer/base plate to size as his stoma is oblong, and narrower at the base than the top. I guess it kind of looks like a mushroom. So what happens is we sort of scrape the stoma a bit trying to get a good close seal to stop leakage onto his skin. Have you come across any solutions for this?

Karla


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Dear Karla-

The product I used for the skin irritation may not work for a baby. It had alcohol in it and burned a little when applied. Not only did it protect the skin, it also helped to heal it quicker. It was hollister skin barrier. It is a clear paste.

http://www.hollister.com/us/products/product_serie...

This one on the web page here may work better for a little one.

When working with getting the cut right, cut just a hair (1/8") smaller on the barrier. The next little trick helped me loads. I just moistened my fingers with warm tap water and ran it along the inside cut to soften it. Once it's softened about another 1/8-1/4" around the inside cut, then slip it on. Stoma's are quite sensitive and tend to bleed a little, but as long as it is just a little, it won't hurt the baby. Softening it like that will help it to mold perfectly around the odd shape of his stoma. Mine was that way too. I hope this helps.

Anita


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Dear Karla & Amanda- Do you have any of the cloth coverlets for your baby's pouch? If not, please get right back with me as soon as you can. I would like to have you do some measurements for me so I can send you some homemade coverlets.

Anita


Linda1109 7 years ago

Dear Anita,

First of all, thank you so much for all your information, for I learned quite a bit. I'm fairly new to having this ostomy, and need to learn a lot. I have a lot of little blisters on my stoma, and don't know how to care for them. I don't know why but they scare me! I'd sure appreciate it if you could tell me how to take care of the blisters. They seem to be getting larger. My stoma also bleeds very easily. Is that normal? Thank you for all the help you can give me!

Take Care!

Linda


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Linda- how long have you had your ostomy? I had what looked like little blisters too, and they and the stoma bled easily too. But it is not a major concern. Especially if your ostomy is new. If you yahoo IM I can give you my ID so we can talk that way?

Anita

And you are very welcome. I had some ppl ask me how I could get this personal on open web, and all I can tell anyone is that I was sooo friggin lost and alone, and I wouldn't want anyone to feel the way I did, so I put it out there. I'm on for awhile, so drop me a line right back if you can.


Laurie 7 years ago

Hi, I have had my ileostomy since Jan. 1976 after ulcerative colitis at 7 years old. All of this time has provided lots of testing. The skin under the face plate is a huge issue. I would like to hear what "ostomy type" products others are or have used. I have been told and believe that liquid soap is not always the "best" choice because the faceplate may not stick as well.


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Laurie- ulcerative colitis is tough, and has different issues than mine, but, Hollister was always the best for me. You are right about liquid soap, but cleaning with dial, regular dial and not a moisturizing type, will not give you problems, unless you are sensitive to it. It's all such a messy job, but completely necessary. After you cleanse and rinse it, pat it dry with a paper towel. Do you have ridges to fill in or very irritated skin? What you use to help depends on that. I hope I can help.


Ben 7 years ago

Dear Anita,

Thank you for writing about such an important issue.

I have been involved in ostomy skin care for 13 years, mostly in the development of truly life-changing accessory products, designed to improve and maintain the condition of peristomal skin.

Recent exciting developments in ostomy skin care may not have reached you yet, depending on where you are in the world, but I would be delighted to discuss with you and would value your opinions.

Please feel free to contact me: ben.curtis@triohealthcare.co.uk

or visit the website.

It would be great to learn more from you.


Gary 7 years ago

Dear Anita,

My daughter just turned 5 and has lost most of her intestine and the ability to eat do to side effects from a bone marrow transplant. She has endured much over the last year and will need to endure much more. Her skin under her Ostomy is really red and irritated and it is very painful. Nothing will stick to it now. Her stoma is egg shaped and sticks out about a quarter inch but it is crooked so her stool always comes out the side opposite her belly button. She has a fistula about 1 1/2 inches from the stoma and we have to cut a half moon in the wafer so we don't cover it. She also hasn't had any formed stool at all for over a year so it is basically just watery from the TPN. My wife and I are at our wits end trying to get a bag to stay on for more than an hour. We blow through a months supply in a couple days. We also have an ostomy nurse that has been helping us but she hasn't found the solution yet. Any suggestions are greatly appreciated.

Gary


anitariley65 profile image

anitariley65 7 years ago from Little Town Ohio Author

Dear Gary-

What has the doctor said about the fistula? Has he put her on antibiotics? Or is it already fully formed and leaking BM through it. If not, the doctor needs to treat it immediately. It CAN be treated and eventually go away.

I would also recommend using a second piece/the wafer, under the bag itself. I know it is a lot of cutting, but it may be necessary. Just buy one box of 5 and try them. Like I said above, in another note, moisten your fingers after you make the initial cut on the wafer(make it a tiny bit smaller than the stoma) and soften the edges, about 1/4 inches in, like molding clay. If you think she would tolerate it, I would use the skin gel protectant on her skin first. Both of you blow on it to cool the sting, make a game of it. You would have to leave the area of the fistula dry though, and still cut a place for it.

Getting that taken care of is so important.

I don't know how you are doing this. I would feel the same as you. You may personally email me if you like. My email address is above. You can even call me. I'll provide my phone # in an email address.

I am checking out some of the products offered from the site mentioned in the email before yours. I want them to send me some samples to check out, and possibly send to people with the skin problems such as yours. It's worth a shot. God bless you all. I hope I can help.

Anita


Mzoghori 6 years ago

Its a good hub anyway.

Keeping your natural skin is of great importance and also choosing the right medication is another since once infected,we have to look for medication.

This hub has information on how to look for a good medication, and indeed i mean good. Try it out.


Carol 6 years ago

I find that when I put the skin prep. on using a hair dryer to blow it dry takes the sting away a bit more quickly. I had an ileostomy in May 09 and thought they would do the reversal in Oct., but now I have to wait 3 more months. I had cancer and chemo and 3 abdominal surgeries, so they want to be sure everything is healed. Also, I use stoma paste when attaching the bag. A small amount around the stoma and the same on the bag, adhere it to the skin and use the hair dryer to heat it a little and then rub it good. Seems to work pretty well. I appreciate a site that goes into detail, it is a scary thing to deal with when you don't have any other resources to ask questions with. I have had some irritation under the wafer and found that at the first sign of itching or burning you need to change the bag. I do use Dial soap and the skin preps. Have had a couple of major leakages during the night, what a MESS!


anitariley65 profile image

anitariley65 6 years ago from Little Town Ohio Author

Wow Carol, you are right. I never thought about using a hairdryer, lol. You sound as if you've done very well also. I had the ileostomy for so many years, yet I can remember every detail. Now I have the Barnett Continent Intestinal Resivoir. BCIR

It is taking as long to get use to as the ileostomy did. I had it done in June 2000, also had to have a complete hysterectomy too because of all the scar and indometrial tissue. You still have to deal with a stoma, only it is an internal one that you just wear a big band-aid over.

I will be doing a page on that too, when I have time. Right now I'm preparing our worn down house for my first grandbaby. IT'S A BOY !!!

I couldn't be happier.

Take care all, and keep writing your own advice in here.

Anita


Mary 6 years ago

Hi Anita and everyone!

5 weeks into my colostomy (sigmoid) and the past week the wafer ( I use a two piece hollister system) won't stay seated around the stoma for more than 20 hours. Stoma is not perfectly round and I'm cutting to fit...skin has some small red marks but changing these wafers everyday is going to make it raw in no time. I've used the paste and the seals around the stoma before applying the wafer. Doesn't matter after a few hours the wafer starts lifting until it's above the stoma and at that point I'm changing it again. Isn't there a safe glue" to keep this thing in place?


Acne Scar 6 years ago

Thanks for the post . it was very informative.


BILL DAVENPORT 6 years ago

MY SON HAS HAD AN ILIEOSTOMY SINCE AGE 4 (ULCERTIVE COITUS) THE PAST 7 YEARS HE HAS HAD HORRIBLE SKIN PROBLEMS WHICH MAKE IT HARD TO KEEP ON HIS APPLIANCE. HE IS SCHEDULED FOR A SECOND SUGERY TO BUILD AN INTERNAL POUCH TO RELEVE THE SKIN PROBLEM. TESTS DO NOT INDICATE ALLERGYS TO THE APPLIANCE. HAVE YOU HARD OF SIMILAR SKIN PROBLEMS? THE DOCTORS AT CLEVELAND CLINIC HAVE NO ANSWERS. ANY SUGGESTIONS OR SOLUTIONS WOULD BE APPRECIATED.


anitariley65 profile image

anitariley65 6 years ago from Little Town Ohio Author

Mary- does your stoma go "inverted" at times? This could cause the lifting too. I haven't worn an appliance for 10 years now as I now have a BCIR. But in the many years I had my ileostomy, I never had the lifting problem. I had lots of irritations but not from lifting. Colostomies are a little different from Ileo's. Gas will cause the stoma to move around even more with the colo. So I'm not sure, but I would start watching what gas causing foods you eat also, or just use Beano. That stuff was a life saver for me in my last year in high school. I had my surgery done when I was a junior in high school, and it was very embarrassing and hard to deal with. I wish you loads of luck.

Bill- is your son having the BCIR done, or another surgery? Have you checked around for a local Ostomy Support Group? I found them quite helpful. I had a lot of irritations too. And like I have said before, the only thing I found to help was the Hollister Skin Barrier gel. It burns when applied, and if the problems are pretty bad, it may take several changes(pouch) before it completely heals. Many blessings your way, and especially for your son and his new surgery. Please keep me updated.

My personal email is anitariley65@yahoo.com

Please don't anyone abuse it. I've had enough mean emails lately. LOL


angela_michelle profile image

angela_michelle 6 years ago from United States

I have several ulcerative colitis hubs, I will be adding a link to this site. :) This is great.


Phanti profile image

Phanti 6 years ago from Levack, Ontario

Thanks so much for being so brave. I commend you on that. I have Crohn's, and there has been talk of someday having to have an ostomy, and I have bookmarked your Hub in case of that eventuality. I will also pass this link on to friends that have one now.

Thanks again and take care.


anitariley65 profile image

anitariley65 6 years ago from Little Town Ohio Author

Thank you so much angela_michelle. I really appreciate that. There are so many factors involved with the different types of ostomy procedures, causes and effects. But one thing we all share is the effects is has on all our lives.

Phanti- you are so welcome. After all the suffering and no education on what I would and did go through, I had to share it all so others wouldn't feel as alone as I have.

Love you both. Take care.


Kevin 6 years ago

Today I found what looks like a blister on my stoma. Have you ever heard of anything like this?


Kelly 6 years ago

My newborn had a colostomy a week ago (a reversal is planned in about 6 months) and she just came home today. We are having an AWFUL time keeping the wafer attached to her. We have changed it probably 5 times today. Needless to say, her skin is getting quite irritated and we are emotionally drained from this, as someone else said. Are there any other suggestions anyone has for helping it stay on? A nurse gave us some stoma powder to use on the area but it seems to be minimally effective.

Thanks, Anita, for all the info!


anitariley65 profile image

anitariley65 6 years ago from Little Town Ohio Author

Hey Kevin- Those are normal. Sometimes it has a lot to do with what we eat or drink, anything acidic. The acid comes straight out, and sometimes stronger, and as it sits in the pouch it will cause some blistering. If it gets worse and bigger though, I would talk to an ostomy nurse at your local hospital. They may not do this type of surgery locally, but there is usually a nurse to help with questions in every facility.

Kelly honey, I feel your pain. I could not imagine what you are going through. The product I sugguest to adults would probably not go well with an infant. There is a lot of acid in breastmilk AND in formula. Lactic acid. And this will cause the skin and stoma to become irritated. Using Dial (gold bar) soap to gently wash around the baby's stoma, about 2 inches out around, will definitely help. It will help to dry out the irritation, plus it is antibacterial to help prevent further blistering. Try to time: when you feed and then when it passes. Then try to pick a time when you know there is the least amount of stool passing through, to thoroughly clean AND let dry, the stoma area. You may be able to go onto the "Hollister Ostomy Supply" site and see if there is anything they have specifically for infants.

Wishing you all the luck in the world. And if you ever need someone to talk to, I'll inbox you my home phone #.

Anita


Karen 6 years ago

Anita

I was wondering if you are an ostomy nurse or health care professional. I have had an ileostomy since 1999 and know a lot about them but I wouldn't give some of the advice you give as if you were a doctor. Some of these people who write to you clearly need to be seeing a doctor or ostomy nurse. But you seem to be comfortable just handing out the advice as if you were a health care professional. If you are, I truly apologize, but just having or having had an ostomy does not qualify you to be giving out medical advice.


anitariley65 profile image

anitariley65 6 years ago from Little Town Ohio Author

Dear Karen- to answer your questions, I am a nursing student focusing on ostomy care. I decided after having had a total colectomy done at the age of 17 and never having been taught anything about it or what it would do to my life, that I needed to help someone, anyone, from having to go through what I did. I then had the Barnett Continent Intestinal Resivour (BCIR) done in 2000 at the age of 35. I state in my blog that (when I started this) in no way am I a healthcare professional. My advice is not medical. It is advice on what is okay, and what is not. It also helps us to deal with the daily problems that we ostomates go through that the Dr. will tell you you have to figure out on your own. Most people don't have anyone to turn to. I call the ostomy nurse at our local hospital, who helped me best as she could way back in 1981, who has learned a lot from myself and other patients like me. You did give me an idea though, to post my credits and experience on here one day soon so that this doesn't happen again.

I truly value your concern.

Anita


Karen 6 years ago

Anita, Thanks for your reply and explaining your credentials. I haven't heard about the procedure you had done called the BCIR. Is that like a J-pouch? I have Crohn's and was told by doctor that mine can't be taken down because the disease could come back somewhere else. I don't think he is being truthful with me. He is angry because at the time after I had surgery I had to have a gallbladder surgery too in a few months. I got gangrene because I was still on Prednisone and didn't heal well. However, he was on vacation and the residents didn't come around and check me like they should because it was at the end of their rotation. I had a lawyer to check to see if or what mistakes were made because I ended up in ICU on a ventilator for 2 days and had to have extensive surgery to get the gangrene taken out, and in the process they removed a big chunk of my abdominal wall. They basically screwed me up. My stomach is all one-sided. I didn't sue him but I should have because now every time I try to go to another doctor they call him for medical history and he tells them not to touch me because I might sue them. I literally despise this doctor. If there's a place in hell for him, it won't be hot enough. Sorry, but that's the way I feel. It is no fun going around with an ostomy that is sticking way out, because the other side of my stomach is so far down from tissue that was removed. It is the worse thing that you could wish on your worst enemy. I wish there was some kind of surgery for me that could reverse this "Oscar" out of my life. I despise it. Thanks for listening.


anitariley65 profile image

anitariley65 6 years ago from Little Town Ohio Author

Oh my gosh Karen. There are several locations to have the Barnett Continent Intestinal Reservoir done. But I had heard the same issue for folks with Crohn's. But, I did get to talk years ago, with a lady close by where I live who did have the BCIR done. It was her choice and I guess she had the insurance to cover it and the money to pay what they wouldn't.

The ordeal you went through is horrific. I went through something similar with MRSA. I had been getting cortisone shots in my knees and ended up contracting the MRSA from the needle. It was internal and extremely dangerous. I was counseled not to sue too because when it comes down to it, a physicians say trumps a patients. To me, there was no other way I could have gotten it, even if it was on my skin (which I'm told is on everyone) I watched them clean and prep my skin before the shot.

Wearing a bag on your side is both a curse and a blessing. we try to think of it in as, if we didn't have it we would probably be dead. Only thing that got me through a lot of times, but even twice I had decided that I would have rather been gone, at peace and not in the pain I was in. But then I found a way to talk about it. And I decided that no one in my family would ever understand unless they had to do it too. And I reached out to those who DO know what it is like.

I would constantly run to the bathroom to let air out, not eat anything because I just didn't even want to deal with contents (but that doesn't work either because there is always something), and I found it very hard to sleep at night because I had had so many accidents in the night.

I struggled for almost 10 years with having had the BCIR. Some days I wish I hadn't, and others it is a God send.

We will have something to deal with that isn't normal no matter which route we take.

The thing is, we have to find OUR OWN WAY TO DEAL. I choose to do it by writing about it. It makes me want to live. Especially when you get emails from people thanking you for your help and advise. Even a lot of professionals don't want to deal with it, so you look until you find someone who will. My Dr. looked at me, said you'll have this the rest of your life, and walked out the door. I was 17. But every time I saw him I also saw the pain it caused him for me. Bless his heart.

I am always here. I didn't have Crohn's but I did have FAP and Juvenile polyps (which I just recently found out) and no matter how you end up with it, it hurts.

Choose to find something good out of it. Learn as much as you can, not just from your Dr. but those right alongside of you, and through your own trials and errors you will persevere.

I would still get another opinion about what you could do about that doctor. Even if you have to make an appointment with he or she, and go in there and make them sit and listen to you and what all this has done to you. Sometimes they just need a wake up call. Once I did this with my pcp he really started to listen, diagnose, and care. I pray the same for you. It is so hard to find someone like that.

You can email me any time. My personal email address is linked to this.

Take care- Anita


Karen 6 years ago

Anita,

What are the cons of having the BCIR? Can you have accidents with that too? I thought it was inside. I know you said you struggled for 10 years with having had the BCIR and some days you wished you hadn't. Can you tell me what is the down side to having this done. Thanks also for your prior response.


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anitariley65 6 years ago from Little Town Ohio Author

Karen, the cons would have to be the foods you can no longer eat. Dark leafy greens, cabbage, corn, things like that. The pain from the gas build up when you can't relieve right away. I have a problem with medications. Things do not digest for me very well, any medications with a coating, and especially if they are very much bigger than an aspirin. Anything that will cause blockage. With the ostomy you can use the milking procedure to help things pass, but if it won't pass through the openings in the intubation tube you'll use for the BCIR, then it's not coming out for a long time. I often feel like I have such an awful build up in my internal pouch, and it is a miserable feeling. There are no accidents like with the ostomy, because nothing comes out until you intubate the internal pouch. When you only have a bag to empty, it usually is a quick trip, but with the BCIR everything depends on what you have eaten, if you're getting enough water to drink, and if you have diarrhea (sorry so graphic) the pain is horrible. Maybe not everyone is the same, but if you've had an ostomy, you more than likely have a lot of internal scar tissue in that area, and that can cause a lot of pain for some. If you talked to everyone who has had this procedure done, I'm sure you would get a different story from everyone. Right now I am having trouble with getting the right kind of tube for my intubation. The new ones I ordered are much shorter and just will not work, so I am in a tough spot currently.

Take care.


Janet 5 years ago

I had a BCIR for 17 years. It worked fine for about five years and then I had chronic pouchitis, which is inflammation of the lining of the pouch. I took antibiotics for years. The pain of the cramping and gas was terrible and then I became very anemic for which I had iron infusions. I met a doctor that I truly trusted and now I have a conventional ileostomy for which I am VERY thankful for. I do have skin issues at times but this is nothing compared to the constant nagging of pain and wondering how long I will have to stay in the bathroom to relieve the gas build up. Thank you for your information. Being an ostomate can be lonely so any information is appreciated.


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genwriter 5 years ago from Singapore

Wow very informative hub and comments! Thanks :)

Please do check my hubs on skin care as well..follow me :)


anitariley65 profile image

anitariley65 5 years ago from Little Town Ohio Author

Janet- did you have a conventional ileo first then go to the BCIR? I am wondering because I have seriously thought about going back to the conventional. I know I fought for years with it, from 1981-2000, but along with worrying about someone having to take care of my BCIR when I am older, I suffer horrible gas also. There isn't a single Dr. around here who is familiar with this so I really get no help. Any input would be greatly appreciated.


Janet 5 years ago

I went straight to the BCIR. Doctors and friends told me not to have a conventional ileostomy because it would be so devastating. I was concerned what my husband would feel about me also. But after all the suffering I went through with the BCIR, I am very thankful that a doctor, that I learned to trust, became very frank with me and told me that I was still living as if I still had ulcerative colitis! I'd never thought of it that way. So with prayer and a lot of thinking and with the support of my sweet husband I decided to go ahead and have the BCIR removed and I am so thankful that I did. I don't have cramping almost continously, I can sleep on my back without the gas bothering me so badly that I'd have to get up during the night to go get rid of the gas to be able to sleep. I'd have to stay in the bathroom for at least 25 minutes to try to make sure that I'd removed all the pressure from the gas. I also was concerned about how I would be taken care of as I became older. I wore a MedicAlert bracelet and had a sticker on the windshield of my car because I was nervous about having an accident when I was by myself and no one would know how to treat my BCIR. I have learned that some people have to have a BCIR because of peristomal hernias and uneven skin from multiple surgeries so I do feel for them.I know that the BCIR works very well for some people but I wasn't one of them. I had chronic pouchitis for which I had to take antibiotics.

Sorry it has taken me so long to answer your question. I guess I didn't think anyone would be too interested since there isn't a lot said about BCIRs. My operation was done in 1990 when you couldn't find any information about it from anyone or any doctor except the hospital where I had the surgery. They were very kind and helpful but living such a distance away from them made it very hard on me. I now use a dr. in my hometown and I feel much safer and happier. I'm not saying that everything is always perfect with this ostomy, I have skin issues like most ostomates but I'm much more satisfied.


anitariley65 profile image

anitariley65 5 years ago from Little Town Ohio Author

Thank you Janet so much for sharing all of that. I know it can be hard, but there are people out here who need to hear what you have to say. I am troubled during sleep also. I have found that I have to raise my arms above my head for a few minutes to get the gas to pass down where it will be released. I'm figuring this is because of adhesion's attaching to things in there and causing them to become displaced. I worry a lot to about what would happen if I were in an accident or something and there was someone with no clue on what to do to help me. They would never think to grab my med bag and know what to do with what was in it. Before every surgery I have, I explain in great detail and physically show the surgical and nursing team what needs to be done if I'm out for too long or don't wake up at all for a while. I really need a medic alert bracelet, I keep saying that and just have never done it. And the Dr. who did my surgery is now retired, so I have no clue on who to get ahold of should I have major problems. I am still struggling with what choice to make, and if it can even be done with what little I have left in there now.

Keep us up to date, and never be afraid to ask questions. I'm here for you, and I'm pretty sure there is a nurse practioner who is keeping her eye on this site who may be able to add some advice if needed. I got a very nice letter from her thanking me for what I've done here.

So hang in there and stay happy and healthy. Hugs- Anita


Janet 5 years ago

About the bracelet, I think I went online first and looked at the options to wear. I think, if I'm not mistaken, they just need to know the doctor you're using now, your pharmacist and a description about what needs to be done for you in case of an emergency. My first surgeon died suddenly so I had to find a new dr. I called MedicAlert myself and told them the new information. You could call MedicAlert and ask them questions. They were very helpful to me. I hope that your discomfort gets better. I remember how it felt. How long have you had the BCIR?


anitariley65 profile image

anitariley65 5 years ago from Little Town Ohio Author

Sorry it took me so long to get back with you Janet, I changed email address' and am just getting caught up. I have had my BCIR since 2000. June will be 11 years. I plan to get a medic alert bracelet in a couple of weeks. I don't know why I waited so long to do it. Have talked about doing it a couple times a year for years. Procrastinator. That's me. I have come to the conclusion to keep the BCIR. I can buy several of the intubation tubes and they keep for a very long time, plus they are so much more inexpensive. But I don't think I could ever go through not having my ostomy pouches again, ever. And I just recently found out that I cannot get medical coverage at this time, so for me the BCIR is much more economical. But if I find out that my kidney disease stems from having the BCIR, nothing could stop me from having the Ostomy back. Make any sense? I will need a new kidney eventually, and if the containment of things in the BCIR pouch is what is causing the damage to my kidneys, no way will I let that happen to a transplanted kindey, because who knows if I could ever get a second or third kidney donated or even find a match.

We are snowed in here in our little town in Ohio, so looks like I need to find something to write today, lol. You take care, be safe and warm.

Anita


Star 5 years ago

Found this very helpful! I have a six month old who was also born with an imperforate anus and it's a very hard and learning experience, really u have to figure things out for ur self and keeP trying n trying until something works. My son has a flat ostomy and it's hard for his bags to stick I found it very helpful to use tegaderm film around the bag to keep it down n Tight on the skin but it is kind of expensive (a box can run u up to $125 dollars and contains 100) but most insurance cover it....for a while I also used the 3m micropore tape which is safe for skin and also allows the skin to breath, I would cut 4 strips of tape n place it around the wafer it also helped keep it on the skin longer I hope this helps someone n may god bless all of u all that have to deal with something like this everyday b cuz I know it's not easy and it can get very frustrating.


anitariley65 profile image

anitariley65 5 years ago from Little Town Ohio Author

Thank you Star for sharing that! I haven't had much experience with children and ostomies so your input is greatly appreciated. That's what this page is here for, for us all to share our experiences in hopes of helping someone who is having a tough time.

Anita


Loving Wife 5 years ago

Hi Anita. My husband had a colostomy done about 10 weeks ago. Things have been going fairly well for him, but he recently has started having a lot of problems with the stool getting under the wafer (he uses a hollister 2 piece system)and lifting it off the skin. His skin doesn't seem to get irritated from the stool but changing the wafer several times a week has the edges of where the wafer goes quite irritated. We've tried everything the stomal nurse tells us to try and it is still happening. He has CP and is in a wheelchair so I have to do all the care of his ostomy. We have been wondering if the wafer getting wet in the shower is the biggest problem. I try to keep it dry for him, but let's face it, it's a shower. The wafer is going to get wet. Do you have any ideas on how to keep it dry? Also, how can I help his skin heal up in the mean time? I hate to see him so uncomfortable. He works f/t and when this happens he has to just "deal" with it as he can't change it on his own mid-day and can't keep taking time off to come home. Any thoughts or suggestions would be much appreciated. Thanks.


AlegroMedical 5 years ago

Thanks for sharing! I can only imagine how many people your post has helped.


rag 5 years ago

remove bag in shower- wash area soap only- shave flip out trimmer only-pat dry

apply domeboro solution with cotton ball- blow dry cool - for me (urostomy)

no more rash or follucitis


Ingrid Berry 5 years ago

Hi

Have an inverted stoma with skin irritation and have found your information very informative and helpful

I use a bit of vaseline on the irritated area around my inverted stoma around the baseplate when I take the bag off and then put the bag back on again - this helps with the burning


I Burch 5 years ago

My husband who has had an ostomy for over 25 years claims that using soap to cleanse around the stoma will make the wafer not stick and it will leak. Just his opinion, but he has had a long time to decide. I am a nurse, myself, and I also find that using soap is a problem. He just uses water to clean around the stoma and he never has problems with his wafer leaking unless he has been exercising a lot or using the hot tub a lot.


anitariley65 profile image

anitariley65 5 years ago from Little Town Ohio Author

Thanks so much to everyone! Each and every bit of input is extremely helpful. I know I had my ileostomy for 18 years, having had it done at 17 and never taught a thing about it. Everyone's skin is different, soooo, it is important for you ALL to share your own experiences with each other. What works for one may not work for another, that's why I started this.

The vaseline around the stoma is a good idea for protection but I always found it to cause the wafer or pouch to not adhere. But that all depends on which appliance you are using so I would say give it a try at least a couple times for sure.

I Burch- I found that with different soaps too EXCEPT Dial. And it has to be rinsed thoroughly. The liquid type worked well for me.

Loving Wife- even though I now have a BCIR, I have to use bandaids and I still have irritation around the edges of the bandaid. All we can do is keep it clean and find a protective gel to apply.

Is your husband using any type of cloth pouch cover? These are really a skin saver. They keep the plastic from sticking to the skin and sweating. Sometimes it is all trial and error.

Sorry it has taken so long for me to get back with you all. My account here was hacked and caused me a ton of problems. Had to get a new computer and a new email account. But I'm hoping to get caught up soon and go forward. Stay here for one another. It's very important. That's why I started this.

Anita


ronnie 5 years ago

hi, i had a temp ilestomy for about 2 months. Reversal is in a couple of months but I'm having troubles now. My stoma does not appear even and i have many leaks and burning and pain around the site. i use the hollister one piece drainable pouch, stoma paste, and stoma powder but still have issues. The area around the stoma is what hurts most because its irritated. If i cut the stoma smaller it leaks more. Any recommendations?


Jakes Phras 5 years ago

Awesome hub..Really informative as well.thanks for sharing such a wonderful piece of information :)

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http://www.facedoctor.ca/research/research21.html


anitariley65 profile image

anitariley65 5 years ago from Little Town Ohio Author

Thanks JP. And ronnie I'm so sorry it has taken me so long to get back with you. I need to ask what you mean by "cut the stoma smaller"? Are you talking about the seal around the stoma?


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htodd 4 years ago from United States

Nice hub anitariley..Great skin care tips


beth 4 years ago

My mom had a sigmoid colostomy done about 8 weeks ago. Her stoma is inverted and she is having issues with her wafers leaking and in turn...more changes than she'd like. She's already returned to work but keeps "blowing her bags" She seems to believe a lot of her issue is gas but hasn't found much relief from gas-x or beano. Anyone ever heard of a digestive enzyme that could possibly be taken in pill form that maybe could tackle the gas before getting to the bag?


Peter 4 years ago

I use Tape Relief to protect my skin. It does great for preventing contact dermatitis! You can order it on their website: http://www.taperelief.com/


Ejanbow 4 years ago

Hi Beth, I had my ileostomy 6 months ago and was having constant problems with leakage and blowing my bags so having to change constantly. One day after my third change it was easier to shower than to clean myself up so showered without the bag and as I stepped out of the bath (my shower is over the bath) I noticed that my stoma, mine was inverted like you Mom's, stuck out more so each time I now change I put my knee on the side of the bath and get a better fit so no more leaks (unless I am too busy or lazy to empty lol) or my biggest problem is my output is very thick and I try to push it down the bag. I was also using extra adhesive of a half moon shape around the wafer but have now stopped using them. Unfortunately I have a very sore spot (about 3" x 3" below the wafer on my tummy and have tried several creams but to no avail, my dr. and stoma nurse have seen it but have been no help at all. Any help out there for this. I have had antibiotics, tried Canasten, Daktarin, Nyroform (I think it's called that or very similar) and Sudocrem and none have helped at all. I am now using the wipes as a barrier between the bag and my skin but it is still sore and weeping.


nikhil 4 years ago

i like my cp


Kelleysue 4 years ago

Thank you so much. I had a colostomy a month ago and am still adjusting. As my stoma heals applying the bag keeps changing and when it leaks oh does that burn. I'm trying to stay on top of it with the help of an ostomy nurse and pray that it will eventully become easier. Thank you for your tips and encouragement.


ashley 4 years ago

Anyone know how to make the adhesive stick longer after showering? They say you can swim with this but I can't imagine how if I can't even take a shower hardley. Please email me at, ashleymaxine@gmail.com


connieholm 4 years ago

I am five months out from a colostomy and what an experience. Thanks so much for posting this it has been very helpful. I am going to order the protective cream tonight. Yes you can swim in it, I do it all the time. Also I have to use milk of mag to keep my stool lose enough to pass I drink some everyday and if I get backed up just drink alittle more. I also have to be careful with meds getting stuck. I have another problem I am wondering if anyone can help. I am 44 and have 4 children. I had an absess and prefrarted colon from diversticulisis. They said they would reverse it in six months, but I have no insurance and my husband and son are disabled. I live in the central texas area. Any ideas.


Connect 3 years ago

Am on second stoma in 4 months-this one now stenosing (dying)! Have had so many surgeries in past can't stand thought of another just 2 months after last stoma surgery! Would like to consider BCIR but GI doc says no! Won't say why. How are people who had problems with ileostomy doing with BCIR? Do you like it? Where beat place? The place in FL or Cleveland Clinic, mayo in Phoenix (know Mayo in MN always tried to tell me illness in head! Have rare auto immune disease called Scleroderma! Any info greatly appreciated! Anyone had to have theirs reversed? Also due to multiple GI surgeries had to place my stoma above my navel to right! This stoma is constantly changing all day and night from 1/2 in to 3/4-impossible to keep wafer on! Know how supposed to be-with original ileostomy felt terrific and could eat and drink almost anything by 3 weeks! Now have few soft things and am down to only weighing in 90's! HELP!!!


Tessa 2 years ago

How do I get rid of the itching under the ostomy tape

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