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16 replies

1st surgery a piece of cake, now the 2nd one..

ceewceewMember
First of all I just joined the J-Pouch community a few minutes ago. I have read many post before joining. I love all the great info on here. The reason I joined tonight is because I had My J- Pouch surgery 1 week ago. The first surgery went great and no problems with the end ileostomy. Now I have the loop, oh my have things changed. I was only in the hospital 3 days and they changed my wafer and pouch for me. When I changed it this weekend,leakage began. I put on 3-4 new pouches Saturday and Sunday. Finally got one to work Sunday afternoon. This evening it all came loose. What a mess! My skin is also very red and irritated. I'm hoping this one will not leak. I can't wait for the final surgery when my J-pouch can be connected. I'm very frustrated.
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MH Mike HMember
I am in the same boat and most of us are with the loop. Once the swelling goes down ( 3 weeks) you will be able to keep the bag from leaking for about two to three days. I used a convex wax ring until the swelling went down thenwent back to using a regualr was ring with stoma paste applied to the ring as backup and it sems to work for me.

Mike H
TE MarieTE MarieMember
I hated my temp ileo too and hear permanent ones are much better. I had to use the wax to build up one side under my convex wafer because it was so close to my belly button it kept breaking open right there and draining into my incision. Please do what you need to get the correct one to fit. Have you tried one with a belt? Those are the best for holding them in place and didn't bug me at all, compared to the stupid stoma location!
mgmt10mgmt10Member
The loop ileo is the pits! I had such a hard time with mine and I tried all kinds of tricks. My stoma was actually sunken in a bit so nothing worked. Unfortunately all I could do was count the days until takedown. The time went by fast thank goodness. I second getting in touch with a stoma nurse. Hang in there!
LesandiegoLesandiegoMember
Sigh, I remember those days.....

After 8 months of a colostomy bag, I think I became a pro and then it was gone and on to having to learn how to deal with the J-Pouch.

Try different positions (laying down, on the toilet, standing up)when applying the appliance to see what works best for you. I had the two piece coloplast appliance and generally prepared the two pieces ahead of time. Sometimes, it was best if I not use scissors to pre-cut the holes and just stretched the wafer to a bigger size.

Sweating in the summer also effected how well the appliance would stick to my body.
P PluotMember
Loops are tough. I had the same experience because my end was so easy.

Are you using a barrier ring, like a Hollister Adapt ring or an Eakin seal? I think something like that is necessary for a loop. The loops wriggle around and expand and contract a lot more than end ileos. You'll inevitably gets leaks unless you have some kind of barrier that can move with it.

You might also need a convex wafer if the new ileo isn't sticking out nicely like the end.

I'd strongly recommend getting in to see a WOCN as soon as possible. I would call right now since people are already knocking off work for the holiday...
K ktaMember
Here's another vote for the stoma nurse. I had the same experience. The skin under my wafer became so raw that the wafer would not stick. She fixed me up and calmed me down. I ended up with a steroid spray to spray on the raw skin, allergy tests to find out which of the supplies I was allergic to, an Eakin seal and a belt. By the time I had my takedown, I was sure the scar from my raw skin would never go away, but it finally did.

This will be over some day!
ceewceewMember
Thank you for the advice. I live in a small town and not sure if there is even a stoma nurse here. I talked to my suregeon's assistant and she said I need a Stoma nurse also. I have a call in about that. I also talked to the people were I get my ostomy supplies and they are sending me some convex wafers to try out. I also told her how irritated my skin is and she is sending some medicated powder to use with skin prep. Hopefully, I will get this taken care of soon. The wafer and pouch I put on last night is still holding, fingers crossed Smiler
S SirToadMember
I traveled an hour to see my stoma nurse during the 3 months I had a bag. Definitely worth seeing one, couple advantages to my stoma nurse at Duke was that she was available almost all the time. I didn't have to make an appt, just emailed her an hour before I arrived. 2nd, she gave me her email and responds rather quickly when I had issues. I would send her Iphone pics of my stoma when I was concerned about how it looked.

Hang tough! I finally got the hang of my ileo bag I think a week or two before take down hah.

Regards,
P PDXDavidMember
The loop illeostomy is much more problematic. It isn't a nice circle that ends outside your body.

This is almost universal. Mine ejected fecal matter onto my skin next to stoma like a jet, instead of out into the bag. It almost ate a hole in my stomach.

Make plenty of appointments with your stoma care nurse and watch out for fungal infection. Get as many free samples from the stoma product companies as you can, and try them all. Some products are better under different circumstances than others.
L ljkMember
1st surgery was awful for me, it was an emergency situation for me too though! 2nd step is just HELL I am still having cramping and the leakage just drives me insane! I am fed up knowone should have to live like this just to not have an ostomy, its crazy!! I still have limited energy and with all the other stuff its just down right hard.Although I finally have control with my ostomy, the rings are what works for me, it has changed so much since 6/17 in size. At first it was huge and kinda scared me a bit to evan look at it. My stoma has always been very small in size. I am NOT giving up though, I guess I am just venting!!

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