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I need someone to hear me

Posts:4
 

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 fist explosion and because i keep prolapsing to the soze of the bag, it hurts. 

Im so miserable. I cant function normally. I hurt. I cant stand for long or the prolapse gets huge and my entire body like folds on itself.

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

Does anyone know anything that could make this more bearable? 

Im also out of products and have been waiting for more for too long. 

 
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Posts:2646
 

Have you contacted your doctor? 

Posts:161
 

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 

Posts:1585
 

 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 

Posts:274
 

I'm sorry you have to go thru this. 
I know a gal that went thru a similar surgery/ pregnancy and you can make contact on instagram

Posts:18
 

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 skin side, I get a solid seal. The additions layered before attaching to skin are Hollister 4"x4" cut to fit size of 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 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 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. 

Posts:514
 

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 maybe helpful...I would call ostomy nurse, doctor or even the companies suggesting free samples etc...Maybe a 2 piece or a 1 piece etc...in the mean time when you apply ur bag also tape around the flange to ur skin with surgical waterproof tape it adds extra security to ur body, 😉 

Posts:15
 
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.

Posts:3
 

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 traciostomies), some for 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.

Posts:8
 

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

Posts:7
 

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.

Posts:165
 

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

Posts:137
 

WayofLife, 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. 

Posts:5
 

Have you tried barrier  rings  i had the same trouble  and when i got the barrier  rings i didn't have anymore leaks 

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