Struggling with Ileostomy Complications During Pregnancy

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Wayoflife23

I am currently pregnant. I had my ileostomy surgery in July. Little did we know, I was pregnant during the surgery (about 5 days pregnant). My pregnancy test came back negative.

I haven't had any issues until recently. My bag is constantly leaking. My skin hurts so bad. I had the first explosion and because I keep prolapsing to the size of the bag, it hurts.

I'm so miserable. I can't function normally. I hurt. I can't stand for long or the prolapse gets huge and my entire body like folds on itself.

I've tried everything. It goes back to normal when I lay on my back awhile but the moment I get up and walk around it's back. The leaking and the skin pain... it's so much for me right now. I feel like I'm at my wits' end.

Does anyone know anything that could make this more bearable?

I'm also out of products and have been waiting for more for too long.

AlexT

Have you contacted your doctor?

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Ben38

Convex bags could possibly help stop leaks. I would advise speaking to an ostomy nurse if you can about the bags and doctor/midwife for other problems.

TerryLT

Sorry you are going through this. It sounds pretty awful. Yes, you really should speak to an ostomy nurse. Hopefully this will only be a temporary situation, and you will be fine after giving birth. I hope a convex bag will help with the leaks, but I'm not sure anything will do much for the prolapsing. It's probably due to the increased pressure being caused by your pregnancy. I hope you are far enough along that you don't need to deal with this much longer.

Terry

Cplumber

I'm sorry you have to go through this.
I know a girl that went through a similar surgery/pregnancy and you can make contact on Instagram

 
Living with Your Ostomy | Hollister
suzeekew

Each site requires finding the right pouch and the additions to make it seal. When it burns, it's not sealed. I've tried so many products and the Marlen deep convex is the only pouch that works for me. Your situation will be changing as your pregnancy continues, but if you don't get a seal, you need to look into a different pouch or a different application. Once you find one, work with it. I requested samples from every company I could find.

Is your actual stoma site recessed into your abdomen? This could help. I could never get a seal until an ostomy nurse fit me with Marlen deep convex pouches. With a Marlen deep convex one-piece bag and multiple additions toward the skin side, I get a solid seal. The additions layered before attaching to the skin are Hollister 4"x4" cut to fit the size of the stoma and rounded to fit inside the wafer. Attach to the 4x4 around the stoma opening a Convatec Stomahesive strip which has been folded in half. This may be enough for your pouch to seal.* If so, you may add paste, or not. Note: if your abdomen creases when you bend, you need to add a filler to fit into the fold, for example, add extra paste or ΒΌ of a moldable ring molded to fit each fold. Then attach the prepared 4x4 with Stomahesive strip, etc. to your ostomy site. Add the pouch to the applied 4x4. *I have to also add an Eakin cohesive Stomawrap over the top of the Convatec Stomahesive strip.

What is the stoma size? And do you need convex pouches. I do have a lot of pouches that worked before I had a parastomal hernia repair. And, a bunch that were ordered after the surgery that didn't work for me.

Keep trying, but don't keep doing the same thing and expecting to get a seal. I know it's miserable, but that means you haven't found the pouch and additions that work for you.

Homie With A Stomie NS

Hun, you may need to change products that suit your body in the stoma area. For skin protection, skin barrier wipes and a barrier ring may be helpful. I would call an ostomy nurse, doctor, or even the companies suggesting free samples, etc. Maybe a two-piece or a one-piece, etc. In the meantime, when you apply your bag, also tape around the flange to your skin with surgical waterproof tape. It adds extra security to your body.

zackpatjunior
Reply to Ben38

What others have written, get yourself to medical attention at once, hospitals have trained staff and supplies to get your ostomy under control. Do not wait. Go.

underdog78

Have you tried Flamazine cream to calm the burned skin (you may need a suction pump to deal with any stoma output... (It's similar to the ones they use on tracheostomies), some form of barrier cream to protect the skin and also a hernia belt for the prolapse? Talk to a stoma specialist as they'll know the best products to try for you.

History2u

I was miserable, leaks, pain, irritation, horrid! Contact your WOC nurse; ask for a convex barrier, look into two-piece systems and be insistent! Not nasty, but insistent. It took a few months, but my nurse took care of it and instructed me and my wife on how to improve life. We were afraid to do anything because I leaked everywhere. Haven't had a leak/explosion since last March and I / we are recovering life. We just got back from a long weekend reuniting with life; it's grand. Good luck and God bless you, it will get better. Be insistent, please.

Joe

meatman1

I had a 6-inch prolapsed stoma. I know what you are going through. I also felt like I was folding into myself. 3 weeks ago I had it surgically removed. Been happy ever since. It is a very safe surgery. Takes about an hour. Talk to your doctor about it. I think you will be glad you did. I use Hollister wafers and pouches. Never had a leak. I don't think being pregnant would interfere with getting it removed, but get with your doctor on that. Everything you described, with the exception of the leaks, I went through exactly as you described. I'm left with a very short stoma and all is working great.. So much easier to clean and change. Please check it out anyway. I really hope this helps you.

Redondo

I am so sorry you are going through this. Whenever my skin breaks out, I use calamine lotion and let it dry before I put the pouch on. But, probably best to seek out the advice of an ostomy nurse.

Best of luck.

Connie.

Superme

Way of Life, first off it would be helpful to know how far above your skin is your stoma. If it is less than a 1/2 inch, you may need a revision. Really, an Ostomy Nurse can give you the best advice and best options. What works for me is putting an Eakin Seal on my skin around my stoma then use a two-piece convex gasket and pouch. It is easy to use and generally lasts for 4-5 days.

frostsdl8

Have you tried barrier rings? I had the same trouble, and when I got the barrier rings, I didn't have any more leaks.

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