Ileostomy problems

As happened when I had my first ileostomy, I’m starting to run into some problems, and sadly they’re getting progressively more intrusive.

The first issue to raise it’s head was the classic problem of the ileostomy herniating. Because of the way a loop ileostomy is formed, there is quite a large hole made in the abdomen. This forms a real weak point, with the result that about 50% of them herniate. I managed to draw that short straw, though not as badly as it could have been.

Unfortunately, other than wearing a (very uncomfortable) corset-like arrangement, there’s nothing to be done about it until the ileostomy gets taken down. So for now I have to just live with it. The end result is I have gained a rather lop-sided pot-belly, and it gets distinctly uncomfortable from late afternoon onwards.

Next up were the chemical burns. These form because of the high levels of enzymes present in the small intestine. Normally these get neutralised by the time they’ve worked through the large intestine, but of course in my case, that’s bypassed. The result is whenever I cut the hole in the flange of the bag a little bit too big, my skin gets exposed to my bowel contents, and gets burned. There are some barrier creams to help prevent this, but they tend to stop the bags sticking too, which leads to an interesting dilemma. Given the issues I’ve had with the bags coming loose anyway, I’ve tended to avoid using the barrier creams. But my skin is now very painful. Again, there’s no magic solution to this beyond more very careful cutting, and the judicious use of barrier creams.

And finally, I’ve got some physical trauma to the actual stoma itself. This has been mostly caused by my cutting the hole in the flange of the bags too small, allowing the flange to cut into the stoma. But I’ve also bashed the stoma on furniture from time to time too. It all takes it’s toll. The result is that they stoma (which is really a protruding bit of my small intestine) is now quite battered.

And that means that occasionally it will start bleeding – a lot. The small intestine is very well supplied with blood, to help you digest food. But it also means you can let quite a lot out, quite quickly. Scariest so far was managing to fill a couple of bags with bright scarlet blood in about 30 minutes on a Sunday afternoon. Not funny.

But a good reminder to take more care of myself.

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15 thoughts on “Ileostomy problems

  1. Hi Richard as an ileostomy person I can emphasise with your problems, I use Cavillon spray which is a barrier film plus it heals the skin and it helps the flange stick to the skin! I use nothing else and use it for every bag change, have done for over a year with no problems. It comes in a small bottle (small enough to pop in a pocket) or you can get cavillon wipes, I use these to put in my ’emergency’ bag that i take out with me. I find the spray slightly better as you can use loads at a time! Hope that helps, Alison

    • Hi Alison – thanks very much for the recommendation!
      I’ve ordered a sample from 3M to give it a try – hopefully it will work as well for me as it has for you, in which case I’ll get some added to my regular prescription.
      Regards,
      Richard

        • Sadly, hernias are a common side-effect in people with a stoma. The statistics are that about 50% of people will suffer from one to a greater or lesser extent. There’s not much that you can do about them once you have them (short of surgery) but you can significantly reduce your chances of getting one by the use of an appropriate support belt.
          The chemical burns are much easier to resolve; there are lots of specialist barrier films/creams that will make a huge difference.

  2. Hi Richard…also, For my husband, I’ve also used a liquid bandage otc product. I spray it on the area every time the pouch is changed, whether there is a sore or not, to protect his skin should there be leakage, and let the product dry. If there is a sore, I lightly apply Stomahesive powder, before applying the Cavillon spray… Good luck. Best, Rene

    • Thanks for the suggestions. After trying a few options I’ve now settled on using Skin Safe from Opus Healthcare, which seems to work very well as a barrier film for me, and in conjunction with their Lift Plus medical adhesive remover (which helps remove the used pouches & any residue adhesive from the flange) I’m getting much better results than before.
      Certainly far less irritation around the edge of the stoma itself, which was where most of my problems were occurring.

  3. Pingback: Still having ileostomy problems « Richard's Blog

  4. Hello Richard! I second Alison and Rene’s recommendation about Cavilon. I hope the spray has helped. I’d like to add what we’ve had success with in addition to that.

    We use an Eakin seal instead of adhesive paste. It holds better and comes off easier. For anything that does stick when we remove the pouch, we use AllKare adhesive remover wipes. They’re mild and don’t irritate the area. After using the wipe, we wash the area with a mild (homemade) soap to get off any residue, then use Stomahesive protective powder and dab the area with a Cavilon No Sting Barrier Film wipe. The powder protects and heals the skin and the wipe forms a sticky surface with the powder to heal and allows the seal to stick better.
    On top goes the pouch with an Eakin seal fitted to the flange.

    We still have occasional problems with his skin, especially if the output is very liquid, but it’s better than it was using the adhesive paste. I hope this helps.

    • Thanks for the suggestions – the Stomahesive powder & Eakin seals sound like something I should investigate when I next see the stoma care nurses.
      As I mentioned in my response to Rene, I tried the Cavilon wipes, and they were good, but for me I seem to do even better with the Opus Healthcare Skin Safe wipes that I’m using now.
      I’ve stopped using soap when I clean around my stoma, just using lots of warm water instead. Between that and making sure the pouch flange is fully up to body temperature before applying it seems to have make a big difference to the pouch adhesion problems I was having.
      I’m coming to the conclusion that the various barrier & sealant pastes & cremes generally cause more problems than they solve, and are to be avoided if possible. The film type products seem much easier to live with.

  5. Hi Richard, glad to see your problem is becoming easierto handle. Just a thought, have you ever tried a convex bag, maybe not suitable if you have a hernia or are less than 6 months post op or a 2 piece bag? I’ve recently had problems with my stoma leaking more and on recommendation I changed to a 2 piece bag, which for some reason sticks so much better than a one piece (I also found this with a convex bag) and makes the stoma protrude more into the bag therefore not getting the output near the gap around your stoma.

    I use the ones from Welland Medical and you can look at their products online http://www.wellandmedical.com/about-welland/

    Hope this may help.

    Alison

    • Hi Alison, no, I’ve not.
      My stoma has slightly herniated, so I’m not sure how well a convex pouch would work; I guess it’s something to add to the list of things to discuss with my stoma nurses when I next see them.
      At the moment I’m using Salts “standard comfort” pouches with the flexifit flange – and I have to say they’re very good indeed – but the nature of my work means I’m standing up and sitting down all the time, and that puts a lot of stress on the flange, so any improvement would be helpful.

  6. Richard, I have a problem with pain I the stoma, especially when I go to bed at nite. I tolerated the pain but finally hv to take a pain killer. the other thing is ,im up 2-3 x a nite to empty. im using a 2 piece convec and have lucky with the skin and leads, but do u have an answer for the pain, my surgeon can’t figure it out either

    • I have the same problem with emptying the bag through the night. The only solution that I’ve found is to eat earlier in the day and not eat anything in the evening, but for many of us that’s just not practical with our family and work commitments. Over the time I’ve had my ileostomy I’ve just got used to getting (a lot) less sleep.

      In terms of pain from the stoma, I’m not in a position to advise you. Everyone is different, but the pain I have is purely as a result of my hernia, and if anything, that improves markedly when I’m lying down. I think the best you can do is to keep pressing your surgeon for a solution, perhaps even consider getting a second opinion?

      Good luck.

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