I am a fellow Crohn's with ileostomy. It is normal for the ileostomy to occasionally bleed a little. For example, due to abrasion when taking the appliance off. However, the amount of bleeding you are experiencing does not sound normal. You should not be wearing tight clothing, which will restrict the ileostomy and damage it. Make sure that you clean the skin around the ileostomy with a ostomy skin lotion, e.g. Dansac skin lotion tissues or use lint-free wipes and another brand skin lotion.
I suspect that you either have Crohn's close to the ileostomy or your appliance is ill-fitting - too tight leading to cutting off the tissue or too much play leading to damage due to the corrosive intestinal output.
Your first port of call should be a stoma nurse. The hospital where you were operated on should supply this or there are sometimes community stoma nurses funded by local manufacturers. This all depends on where you live. Ring up the hospital and ask them.
If you are not on maintenance medication for Crohn's or have symptoms of Crohn's then you need to consult with your gastroenterologist to do ileoscopy and to take biopsies rule out Crohn's in and around the stoma. Cancer of the ileum must also be ruled out.
If your appliance is ill-fitting and falls off or frequently leaks, you need to empty and change your bag more regularly to prevent the output washing the stoma to reduce skin and mucosa damage. In addition, I suggest that you contact the manufacturers in your country, ask to speak to their stoma nurse(s) or appliance expert(s) and explain the situation. You need to have the following information to hand: size of stoma, convex/flat baseplate, condition of skin, current appliances used and for how long. They will send you free samples to try out. Coloplast, Braun and ConvaTec where particularly generous with me. Keep a diary of how long the appliances hold, leaks and other problems experienced and then you will eventually find the right appliance.
Here are the USA manufacturers:
http://www.ostomy.org/ostomy_info/suppliers.shtml
If that proves negative then you need to consult your surgeon.
Lydia D.
Ileostomy bleeding? by: Peter Bray
Is it your stoma surface area that's bleeding or is there blood in your waste stream? I suggest working with a gastroenterologist who's familiar with your medical history...Was it an end ileostomy or a looped, temporary ileostomy? You may still have active crohns disease in the remaining portion of your colon depending upon what type of surgery you had. Work with your medical team AND ask questions, and do your own research as well...join support groups and ask questions...no one is more concerned about your health than you.I have 24 years of lay experience dealing with my adult daughter's crohns disease---e-mail me back at PetrBray@AOL.com and I'll send you my 12 newspaper columns on the subject at NO charge---MANY people are working on REAL solutions to the global Crohns tragedy and it is just that!
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