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Hi everyone!

LesaMarie

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New to the forum. Had an ileostomy on 12/12/2012 which is temporary. Having a rough time with it. Skin is stripping all over and ostomy bag won't stick at all. I have to change the bag several times a day due to leakage. Running out of options. Home health nurse discharged me but thinking I need the nurse back.

Any support, ideas, thoughts on how to get through this? I am an emotional wreck and feel embarrased to see friends or go out in public.




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Hi LesaMarie, there are lots of products and things to try. If you peruse the site you'll get lots of ideas. Stay calm, get comfortable and try warming the flange before you use it (down your bra or use a hottie etc). There are seals available too, its sounds like these could really help you. If you look in the products info pages you will find web site links. Perhaps it would be a dood idea to get in touch with your stoma nurse again, they are usually very helpful. I hope you get settled into a system that works for you soon. Hang in there, it will get heaps better!!

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Hi LesaMarie,

Welcome to Ostomyland! I hope you find your stay with us informative, supportive and enjoyable-ive. :)

You mention leakage, and I recent posted an in-depth editorial about leakage-combating products which the ostomate might not be aware of - some of which Nic has alluded to in her reply to this blog post.

You can find the article over on the Ostomyland information website (which we always refer to as the "main site"... ostomyland.com).

You can click this link below to be taken directly to the article. If you check out the sidebar menu on that page too you'll see the lifestyle guide which covers about 20 chapters about living with a colostomy. I appreciate you have an ileostomy but 99% of the information is still relevant, and where it isnt relevant to ileo's its clearly stated.

Combating Leakage: Some products you may not be aware of:

http://ostomyland.com/mainsite/combating-leakage-some-products-you-may-not-be-aware-of/

Also, you mention you've been seeing the home health nurse, which is presume is like our District Nurses in the UK. I suggest you contact your local hospital and ask if they have a Stoma Care Nurse there (often called ET nurses, or WOCN (Wound, Ostomy Care Nurse) in the USA or Canada.) The SCN/WOCN will have far more ideas to help you deal with the leakage as they specialise in stoma care whereas the district nurses are usually just about wound care and post-op recuperation etc.

There are various products to help with your sore skin too, such as powders which stick to your sore/raw skin, but not interfere with the pouch adhesion. The leakage page I linked above discusses them too.

Once your skin has started to improve you might want to look into trying skin care wipes, which create a microscopic layer over your skin for the pouch to stick to, so its not directly touching the skin, then when you remove the pouch, its the microscopic layer that is removed, and not as many skin cells. An excellent example of these are the Trio Silesse wipes/spray which is also features towards the bottom of the leakage article I've linked.

It's important to determine the cause of your skin issues. If you are allergic to the adhesive which can happen, then that needs treating and easing or the pouch will continue to have adhesion issues. You can usually tell if this is the problem because the entire pouch area is affected and raw. If only certain areas are raw, then it could be because of your leakage. So by treating the leakage your skin will slowly improve too.

I do understand how emotionally devastating leakage can be, especially in the early weeks or months where you are having to learn the skills of applying the pouch properly so that it doesn't crease, or slip or lift. The important thing for you to focus on is that your Ileo is temporary, it will be reversed in the future so you wont have these issues forever. In the meantime I hope I've given you some helpful ideas to ease your worries and concerns.

Also, things go get easier with time. You start to feel better from the operation recovery time, you are slowly getting better at managing the stoma (whether it leaks or not) and so things do improve with time, I promise. Keep fighting.

Please feel free to post any questions you have on the message board forums and we'll do our best to help you. If you havent already done so, you might want to post your leakage message from this blog on the forums too as its likely more people will see it there and be able to offer you more support. A good forum to post it on will be either of these:

http://www.ostomyland.org/ostomyboardipb/index.php?/forum/7-general-ostomy-support-issues/ (General Ostomy Support forum)

http://www.ostomyland.org/ostomyboardipb/index.php?/forum/3-ileostomy/ (Ileostomy forum)

Best of luck, I hope things get better for you very soon.

Take care,

Jason.

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You came to the right place LesaMarie dont be shy or bothered to post anything in here we also have time to have a laugh at ourselves too like your post lol "New to the forum. Had an ileostomy on 12/12/2012 which is temporary".do you mean 12/12/2011 or are you phsycic ? if you are phsycic whats this weeks lotto numbers.

I think Jason pointed you in the right direction but always feel free to ask questions as it is all new to you and dont be alone there is always someone here day or night.

Best wishes

Evan

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Hi lesaMarie im so sorry to hear that for you ..Just an idea for you if your doctor can try and make it so that you can keep your stoma nurse as long as you need her im new to all this i have had my stoma only a month but my doctor said she would let me keep my nurse till i get my reverse if i felt more comfortable with her ..She told me that as a doctor they could make excuses for as long as needed for me to keep her so i would talk to your doc and see what they can do to help you ...

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LesaMarie, Sorry you are having a hard time with leakage. I have a colostomy and I found my skin "weepy" and painful from leakage. Convatec makes Eakin Cohesive Seals. These are a blessing. You clean the area, pat dry, place the seal as close to the stoma as you can. Attach your appliance right on top of it. It makes a world of difference. No more leakage and the skin starts to heal. I tried powder, wipes, glue and paste. None of these worked for me. If you are in the United States try Edgepark supplies. Phone 1-800-321-0591. They come in 2 sizes 2", and 4" very pliable. You mold it around the stoma with your fingers. It worked very well for me when I wore the pouch. Hope this helps Lostsoul

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Hi LesaMarie, I am new at this to. Have you tryed to get adapt Stoma Powder? It should help dry the skin up.

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Hello Lesa Marie... I have both a colostomy and an ileostomy... I've had the ileostomy for 29 yrs and the colostomy since 94... I can't stand them and have yet to come to terms with them and feel like I hold alot of anger because of them... They have caused me excruciating pain due to the skin condition... I've had multiple revisions to no avail...

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Hi ya, I know you are having a difficult time but please stay positive and remember you are blessed as you can have it reversed.

I have recently had a stoma bag and am just getting my head around it, so I cant advise you on that bit. However, I can say if your feeling down which is completely understandable ask you doctor to refer you to someone you can speak to.

It will allow you speak to some one about your concerns face to face and just release some of that anxiety you have.

Please make sure you call your district nurse whenever you need, as that is what they are their for.

Also dont feel embarrased or down about going out as you are a beautiful lady (in presuming that you in the profil pic) with a fab smile xxx

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I had the same problem changed my bag to salts healthcare, it worked a treat kinder to my skin. I also got some great cream Dermoil 500 lotion. It cleared my skin and I don't have to use anymore. I would give it a try.

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