problems with illiostomy

3greatkids Member Posts: 45
edited March 2014 in Colorectal Cancer #1
Hi again, you were all so wonderful to our recent posting yesterday, I was wondering if anyone had information on illiostomies. Mike had an operation for one just a week after treatments had started (finished treatments now). That was over 2 months ago. Our concern is that he is having SO many problems with it. The nurses that come in to the house do not seem to realize that he really is in pain. The problem is he has tried many different types of pouches and none of them seem to stick, thus his skin is getting so irritated that it is starting to ouze. It is extremely sore because he is having to change the pouch every other day. The nurses and drs. say that he just has to find the right one, however this is not proving to be an easy task! The other problem is his weight. He has always had a BIG problem keeping weight on. He started out before the cancer at 145 and is down to 130. He has the operation next week, which he figures will make him loose more weight and then 4 more months of chemo, and with the stoma, he tends to loose weight even faster as much of the things he eats go right through him. (I told him he still looks great to me!) Well after that long winded message, my question is, has anyone with an liliostomy had a problem with these pouches, and with the whole weight loss thing? He was very inspired by all of the wonderful stories of "real"people having this. It is sometimes hard listening to the drs. when they do this for a living every day, but have not actually been through it. Thanks
God Bless
Sylvia and Mike


  • houseofclay
    houseofclay Member Posts: 63
    My husband had similar challenges with his temporary ileostomy and the pouching system we finally settled on was a 2 piece system with a belt for added security (the belt was completely optional, not necessary, but it really seemed to help.) The 2 piece system is a wafer that is sticky and does not need extra adhesive or paste and then the pouch snaps onto it. The belt clips onto the sides of the wafer just to add some extra security and adhesion. My husband's stoma was an oval/mushroom shape and we thought this system worked very well.

    I don't know what you have already tried but I hope this is helpful. If you need a better description or particular information, I check the boards every day. Andrea
  • Moesimo
    Moesimo Member Posts: 1,072 Member

    Most of the nurses who come to your house are not ostomy nurses. ask for the ostomy or stoma nurse to come. Also when he had his surgery was he seen by a stoma nurse in the hospital. Call the surgeon or the hospital and ask to be seen by the stoma nurse. Now because his skin is irritated it will be hard for any system to work. I had a temp. ileostomy and now have a colostomy. I have tried many systems and now use a one piece drainable that I change every other day. I don't use anything on my skin and i haven't had any problems.

    There is a powder that can be put on the skin that will help clear it up.

    If his stoma is flat or inverted there is a convex wafer that will help the drainage stay away form the skin. He should not be having all these problems. If there is anything else I can help with just ask.

    BUT CALL THAT STOMA NUSE TODAY. The one that I see is great and always is so helpful.

  • markatger
    markatger Member Posts: 314
    HI Sylvia,

    I have had a temp ileo since September of this year. I absolutely hated it at first. I now am more at peace with it. But I haven't had too much skin problems, which is actually suprising to me considering I have very sensitive skin. One thing I did do was get small pieces samples of wafers before hand and attched them to my stomach to see how my skin would react. This led me to pick Hollister New image wafer. I also test any tape that I use on other areas of my stomach before using. I had a bad reaction to one kind of tape. I use tape to "windowpane" the edges of the wafer, which helps it stay on. I haven't needed to try a belt, but many use that.

    There are skin preps to help people who have developed problems. I haven't used them personally.

    As well as seeing a trained enterostomal nurse, I have found a great resource to be other people with stomas. There are many on the website - Shaz's Ostomy site

    I have learned many tips and tricks from there from everything from skin problems, leaks, foods to watch out for, keeping yourself hydrated, and lots of humor : )

    Oh, one other thing, I noticed my skin to be very sensitive when I was on chemo. You mentioned that your husband was on chemo. His skin problems might have been exacerbated by the chemo.

    Best wishes to your husband in getting the ileo manageable,
  • collardm
    collardm Member Posts: 6
    I have a temporary ileostomy. I had lots of problems with leaks until I called Convatec and talked to one of their ET nurses. They sent me free samples of the Convatec Convex moldable two piece. I use these along with Eakin seals. I change every 5 days, but I could go longer. I wash the area well and then dry with a hair dryer. I use Convatec's Stomahesive Protective powder for skin problems around the stoma. Put the powder on the skin, it doesn't hurt to get it on the stoma. You then spray the area with 3M Cavilon No Sting Barrier spray. I then put on an Eakin seal and finally the Moldable Convex wafer. I also use an ostomy belt. Please to the following ostomy discussion group for lots of good ideas and suport:
    Good luck!

  • JohnWest
    JohnWest Member Posts: 14
    My webpage at gives a lot of information about living with an ileostomy, and now fighting colorectal cancer.

    John West