Hello fellow ostomy people: I'm just 3 weeks post ileostomy and really having a difficult time adjusting to life with a bag. I had a failed j-pouch and now must learn to live with a bag. I'm very petite, 5'5" and 103 lbs. The bag feels so huge and ackward. I made a litte cloth sack to go over the bag but it still sticks out from my belly too much that I can't get my pants on. I feel so deformed and feeble. I wrestle with pain every day and the output from the stoma constantly burns my skin. I wear a 2 piece Hollister system, so maybe when I try a different system it will feel better. What tips and/or suggestions can anyone give who has experienced what I'm going through? How can I keep my skin protected so it doesn't itch around the tape and burn at the stoma? How can I get into my clothes? It hurts my stoma if I button/hook my pants closed. How can I get back in the swing of life? I'm so unmotivated to even get out of bed. And, yes my doc put me on anti-depressants because I'm traumatized over the whole situation. The one good thing I can say it that I no longer have pain all the time from my intestines being blocked and twisted up from strictures and a non-working j-pouch. I know the surgical pain will decrease over time and the stoma hole will shrink. Also, becuase I had a j-pouch my stoma's output is fairly thick and it's pretty well behaved. Thanks for any thoughts you have to share. I would not have made it this far if it wasn't for this great organization of people. This j-pouch group is the best out there!!
Catherine
aka MaggieCat
Issaquah, WA

My husband Paul had his ileostomy surgery in Jan. this year, for much of the same reasons as you- failed pouch, pain, meds not working, pouchitis, etc. He's doing really well; he's not home right now, so I figured I'd let you know what works for him. He uses Convatec SurFit Natura pouches; they're the 2-piece "tupperware" type. We have found that less is DEFINITELY more with the whole ostomy skin issue- just the "no-sting spray" and a little powder, and on it goes. No paste, seals, alcohol wipes to clean the skin. Just warm water and a little soap. One thing he does that seems to make a huge difference in the excoriated skin is squirting very warm water up into the bag EVERY time he empties it out. It keeps the stool off the stoma area at each emptying, and has made the skin heal tremendously.
The pants closing issue gets better with time; you still have a lot of fluid from surgery in there, pain, bloating, etc. We hope you feel better soon and somehow heal emotionally, too.
Paul & Betsy

First, try lots of different products. The manufacturers will all send you samples, and that helps. If the skin is irritated around the tape, you might want to go to the ET nurse to make sure you're not allergic to the tape. There are many products without tape. 3M no-sting Nexicare liquid bandage spray protects the skin, helps adhere the pouch, and should reduce the itching.

You might want to try a smaller bag. I like to wear 10” bags, though I’m wearing 11” bags for the time being because of some medical problems. Try the cut-to-fit kinds, as that lets you cut the wafer to the shape of your stoma. I always cut mine pretty close to my stoma. Also, paste or an Eakin seal/adapt barrier ring can protect the skin. Finally, if the hospital sent you home with clear stuff, get some opaque pouches.

When you ask for samples, ask for a carrying case. I have one that a manufacturer sent me, and I use it every day. I always carry a spare of everything with me, though I’ve only had to use it twice.

As for clothes, I was sore for a good two and a half months or so after my surgery. It took a while to be able to put on anything besides shorts and sweat pants without feeling pain. But everything is fine now (8 months post-surgery). The only clothing change I’ve made is my underwear (where I’ve switched from cotton to Lycra briefs). Other than that, I can wear what I used to—except for the fact that I gained weight since my surgery—a good thing—and the old stuff no longer fits.

This message has been edited. Last edited by: mdg,

Hi Catherine -

I'm just up the street from you in Sammamish...if you ever want to meet, PM me.

In the meantime, I am on my second stoma (am having a three-step procedure). Needless to say, adjusting to my "new" stoma has been a bit of a challenge, but what helps me is my ostomy support belt (check out: http://www.ostomysupportsystem.com/)

You can get them from Byram if your insurance covers that company, or you can just order from this site. I find that this helps me on so many levels:

1) Body image - bag is covered at all times, except when I shower.

2) Appliance wear - since everything is held in place and not pulling, I think I get longer wear time. Not scientifically proven, of course.

3) Clothes - I can wear anything with this, and no one can tell that I have a bag.

If I can ask, who did your surgeries?

Lisa

Hi Catherine,

I know it doesn't feel like it at the moment but things really do get better. The swelling around your stoma will go down and stop hurting so much and you will be able to get back into your regular clothes.

You've had some excellent advice regarding skin care and I would like to echo the "less is more" sentiment when it comes to preparation. However, if your skin is weepy then showering without anything on and if you can aim the shower spray at the skin around (not on) your stoma to encourage circulation and help with healing. Then make sure the skin is really dry (a hairdrier on cool setting will help) and apply a little powder making sure you brush off any excess. Then coat with a thin layer or no-sting barrier wipe or spray and allow to dry thoroughly before applying your wafer.

Measure your stoma at every wafer change because it will carry on shrinking for several months and it's really important to get a good seal to protect agains leaks.

As was mentioned, try different systems and ask the manufaturers for samples of their Durahesive systems as they are more suited to the high output of an ileostomy than the regular Stomahesive type. You may be allergic to the white tape on your current system but another brand may not affect you at all. Trial and error is the key. Most manufacturers do smaller sizes in bags but I find that wearing the bags at an angle diagonally across your tummy (tail end sitting in the opposite groin area to your stoma) not only stops that lopsided feeling but also spreads the load so it's not so noticable.

I know that it's uncomfortable at the moment but try to wear good quality close fitting lycra underwear that will support your whole system, it will help protect against leaks and more skin issues and will give a better body image, especially if you wear your bag at an angle as I suggested earlier.

I know you are still feeling weak and not very motivated but try to get up and walk as much as possible. Getting out and getting some fresh air is good therupy. Just do normal everyday things like taking a stroll or doing a little shopping and you will start to feel better about yourself and your situation. Just remember that once you are fully healed there really is nothing that you can't do that you did before you had your j-pouch removed, in fact you'll probably be able to do far more now that you are rid of the thing that was making you so ill.

If there are any questions that haven't been answered here then feel free to ask or PM and I'll be more than happy to help.

Hope you feel better soon.

Take care

Shell

Thanks for your feedback. What does "PM" mean? My surgery was performed by Steven Medwell at Swedish Medical Center. If I understand correctly, wearing full coverage panties with the bag inside my panties at an angle will help hold it and make it appear more even across my belly. Is that what you mean Shell? Do you know anything about the Cymed product "Micro skin"? I looked at the ostomy support belt recommended by Lisa, expensive. I'm not sure that would be better. I don't like all the weight of everything. That would be more fabric that my already too tight clothes couldn't fit over. My skin is so raw from the tape that even the soft cotton knit pouch I wear around the bag irrates my skin. Thanks for your tips Shell, I'll try to get out and walk more often. I did some house cleaning yesterday and really wore myself out! Its amazing how everyday tasks require stomach muscles. I hope to get on the live chat tomorrow, I missed it last week. That's the trouble with west coast time. Thanks again for everyone's feedback and tips, I really appreciate it.

Ditto to all people have said...I'd just add that you need to remember that you still had surgery. Things aren't going to be perfect right away. It took about 2 months for my body, skin and mind to settle into having a perm ileo (which I've had for 5 1/2 years now!).

Your stoma has no nerve endings, so the pain you are feeling is probably surgical pain around the stoma. Give it a little longer and you'll be back in your old clothes. I still wear the same jeans I had before my stoma - size 4 - and have no issues.

I use convatec convex wafers, 10" bags (I'm 5'1") Eakin seals and stomahesive powder when needed and that is it...no sprays, wipes or otherwise. My skin does better with less. I change my appliance every 3 days, though I can sometimes get away with 4 days.

In the fall I met a bunch of j-pouchers here in Boston and they all knew I had an ostomy and they were trying to guess where it was...none of them could. In time you'll get more comfortable with things and believe it or not, you'll even forget you have an ostomy sometimes!

As an aside, I tried the Micro skin bags and love the concept but they don't make convex (which I need) and though the wafer part of the system didn't bother my skin, the "micro skin" tape (which is clear and light weight) did. They will send you a free sample if you want to give it a try.

If you are concerned about weight and profile of your appliance, think about a one piece (which the Cymed product is). They sit flatter on the belly because there isn't the need for the flange to attach the two pieces.

Hi Catherine,
As Shell said it really does get better, with time and experience dealing with the illeostomy you should be able to do everything you want to do and probably a whole lot more. The 2 piece new image was my first order and it was good to my skin,I use convatec now. Hollister also makes a wafer with no tape so there is no iritation from the tape. I use a ostomy belt from hollister, order #7300. Helps with wear time and holds everything in place.
I also had my jpouch removed and permanent illeostomy 7/06.
PM means private message,just click on the persons user name and a list of things will come up, click on private topic to that person, you'll have to be signed in to do this.
Good luck with the new illeostomy.

If your skin is getting raw from the tape, you should try a tapeless wafer. All the major manufacturers have them. The outer area is made out of the same material that is inside the circle.

Dear Catherine,

Be sure you have a really good fit. Measure your stoma frequently to make sure that the opening of your wafer is only slightly bigger than the stoma. You don't want it so tight that it squeezes the stoma, and you don't want it so loose that the output spills onto your skin, causing the burn.

I love the Convatec convex wafers. I have a loop ileostomy, and they tend to be more flush to the skin than the end ileostomies. The convex wafers push down on the skin around the stoma, making the stoma "stand up" as much as possible, and that helps reduce the amount of spillage onto your tender skin.

If you have access to a nurse or other health care provider who can help you with your appliance, definitely ask for some guidance. My nurse really knew the products out there and was able to steer me to the right stuff. And she was great at showing me how to apply the wafer so I could get maximum stick and wear.

Another product that many people swear by is the Eakins seals. I haven't used them, but I understand that they can be very effective at protecting your skin.

Good luck!

it really does get better with time. its been over 2 months for me now and the pain of the stoma has reduced dramatically. i thought i was never going to be able to wear normal clothes but i am starting to get back into them now. give it time and you will get there. good luck.
JILLM can i ask you what are micro skin bags. i tried to google them but found nothing. thanks,d

Hi Catherine,

Those first several weeks after surgery can be tough. It *does* get better. Just give yourself some time. Do what you can to get out- go to a movie or out to lunch, or walk around the block. A little activity can really help you bounce back, and to stop feeling feable. Besides, the sooner you start doing things you enjoy, the sooner you will discover that you really can do anything with an ostomy that you want (well, aside from pooping through 'normal' plumbing), and the sooner you will come to terms with your ostomy.

As Shell and others have already mentioned, you're going to be swollen from surgery still. Not only with your stoma get smaller over time, so will your abdomen, and your clothes will fit more normally again. In the mean time, wear what's comfortable for you.

One piece systems do tend to fit more flat on your abdomen, but the system that does the best for me in that regard (and various others) is the adhesvie coupling systems that ConvaTec and Coloplast have. Shell and I both use a combination of the ConvaTec convex Durahesive wafer with a Coloplast pouch. I'm 5'3 and HATE when my pouch hangs too low, so I prefer to use a smaller pouch- 10". As Shell said, you can position your pouch to sit across your abdomen as well. That would allow you to wear a larger pouch and not have to empty it so often.

Try different systems, and try both one and two-piece varieties. All of the ostomy supply companies will send you samples of most any wafer/pouch you want to try. If you don't have an ostomy nurse, get one. She/he can recommend products and help trouble shoot if you have any problems.

Last of all, keep telling us how you're doing. We have all been where you're at, and if nothing else, can at least keep showing where the light at the end of the tunnel is.

-Rae

Hi Catherine!

I just wanted to check in and see how you're doing? Feeling any better?

-Rae