illeostomy woes

kristasplace Member Posts: 957 Member
edited March 2014 in Colorectal Cancer #1
Well, it's been three months, and i just can't get used to my illeostomy. No matter what i eat, it fills up with gas during the night, and this morning it burst in bed! I was horrified! What if that happened in public?? It has always been really itchy too. Especially where the wafer and tape are, but also the stoma sometimes itches. I'm tired of complaining to my onc about it. He knows i was eager from the beginning to be rid of this as soon as possible, and was very disappointed to learn i had to keep it through six more months of treatment. Does anyone have advise on how to cope with this thing?


  • Moesimo
    Moesimo Member Posts: 1,072 Member
    Do you have an ostomy nurse that you can call. They are a great source of help. When I had my ileostomy I did have to empty it alot and sometimes it was only gas. I also couldn't wait to be rid of mine and had it reversed only 8 weeks later. I then had more chemo and such bowel dysfunction it was AWFUL. 18 mos later I had a colostomy done. I haven't looked back. I got my life back. My case is very rare though. I am not trying to scare you. Most people have a successful reversal. Once you begin chemo you wil be glad for the ostomy.

  • nudgie
    nudgie Member Posts: 1,478 Member
    I had a colostomy and had the same issue with the gas build-up at night, but the bag never burst. For itching, redness or little bumps around my stoma, my surgeon recommend zinc oxiode (sp)? It came in a black and red tube and was located within the Pharmacy area of my local Wal-Mart. I would put it on the skin around my stoma each morning.

    I hope this helps
  • funnyguy
    funnyguy Member Posts: 89
    I had my ileostomy for 8 months before reversal and agree, the itching was quite annoying. Unfortunately I never did find a good cure other than to take a shower with the bag off and keep it clean in between changing the wafer.

    I would recommend that you speak with an ostomy nurse about other issues.
    The gas problem for me was controlled in a couple of ways: diet (avoiding gas causing foods/drinks), bags with a vent (but they don't work for long), taking a gas-x after late meals.

    And I do understand your disappointment at six more months of treatment as I had the same suprise. Just take one day at a time -- it is worth it to wait a little.

    I never had the issue with the bag filling up so fast in public to cause a problem. It just never occurred. Only while sleeping and going a very long time without emptying.

    For itching under the wafer and tape I found a special powder and liquid band-aid combination would help to protect skin and reduce itching. But as I said, nothing for the actual stoma. (ask an ostomy nurse about the powder - I found it through a local medical supply store)

    Your Onc can't help you with this one.
  • 4law
    4law Member Posts: 110
    I had a bag for several months and understand everything you are going through. After an ostomy nurse that was not very helpful, I lucked out and had a nurse who had a permanent bag. She understood best what my issues were and gave me practical advice re proper equipment and encouragement. I don't believe most doctors are very helpful and your best bet is finding a good nurse. Don't be shy about asking for a new nurse if the one you end up with is not helpful. Good luck -- -- you will get by. We all have had the same problems and have worked through this. I'll pass on what someone told me when she learned I was diagnosed with rectal cancer and just started treatment: In a year from now, you look back at this as being a horrible nightmare. The important thing is to believe that you'll wake up and be be OK. A look at the postings on this board will show you that so many of us have made it through -- there is no reason preventing you from getting through this also. Never give up.
  • davidsonxx
    davidsonxx Member Posts: 134
    A good ostomy nurse is worth their weight in gold. I had terrible problems with my ileostomy at first until I found help from a good ostomy nurse. A vented bag will help with the gas issue. There are a number of different skin protecting products that can help with the itching around the stoma. Find an ostomy nurse to help you with the issues you are having.
  • kristasplace
    kristasplace Member Posts: 957 Member
    Thank you all for being so helpful! You're right, my ostomy nurse was not very helpful. She did not tell me i had any choices with bags, and she really was kind of rude. I will try the zinc oxide too. I know we've all had such a rough time with this completely unnatural situation, but i'm sure you're right about getting through it. I just thank God every day that it isn't a permanent thing.

    Health to us all!