Stoma Closing Up

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Philly Indiana
Posts: 8
Joined: 2008-01-31 11:10:38

Stoma Closing Up

Post by Philly Indiana »

Hello! My stoma seems to be closing. It started the size of a dime. Now I have a struggle getting in a size 14 catheter. I went to my uro and he has me putting a catheter in and leaving it in for 3 hours everyday, which I have been doing for months. If I skip a day of doing this, it gets even smaller. Does anyone else have or had this problem? If so, what are you doing to keep it open? Do I have to do this with the catheter everyday for the rest of my life?? What are the possibilities of the stoma closing completely if I do not do this 3 hour catheterizing everyday? I read on this site that someone uses the catheter but also uses a cap/plug. I can't seem to locate that post now. I also read a post that said a star shaped stoma was less likely to close. Any information on this? Thank you!
squid56
Posts: 796
Joined: 2005-10-20 23:48:34

Post by squid56 »

When I had my ileal conduit, my stoma started to close up and I had to have it revised. I have not had that problem with my continent stoma, but I used to have problems with not being able to get a catheter in. When this happened my uro would have me leave a catheter in for several days, you may want to see if doing something like would be of help. Judith
Philly Indiana
Posts: 8
Joined: 2008-01-31 11:10:38

Stoma closing

Post by Philly Indiana »

Thank you for your suggestion, I am responding on behalf of my husband. His Uro has suggested my husband cath daily for 3 hrs attached to a bag to see if this will help keep the stoma open. He has done this for months every night for 3 hrs or more. According to the Uro he said the stoma looks good, its the scar tissue around the stoma. It appears to be covering over. Each time my husband needs to cath he needs to break through skin and has some pain and bleeds, I feel terrible for him. He went through so much with having the Indiana Pouch surgery and now every time he needs to urinate he has to contend with this. We had an appointment with his uro yesterday and Dr said he could trim around the skin that formed around the stoma. Dr stated a revision may be necessary if he could not pass a cath through at all but for now the uro provided 14F clear stiff cath to try and in two weeks if we decide to have the skin cut out he will do so. The surgery was Dec 2007 and was a complete success as fa as recovery and no infections or set backs but this scar tissue seems to be on going. This has been is greatest challenge dealing with breaking through the skin each and every time. In your opinion do you think cutting out the scar tissue around the stoma may be helpful, please advise. Your input is greatly appreciated. :?
gillian
Posts: 16
Joined: 2007-11-07 11:08:44

Post by gillian »

I have an ACE and my stoma is closing, too. I'm waiting for a MC-KEY to come in (like a G-tube), so I can keep the tube in permanently. I can't wait! Right now I have to keep the cath in 24/7. I hope your husband gets it figured out.
Ellen M
Posts: 12
Joined: 2007-02-26 18:42:33

Post by Ellen M »

Hello, I leave my cath in everynight (per doctor's instructions). I find it easier to deal with and all I have to do is wash my hands before I empty. I do put a cap on the end of it. When I was sent home from the hospital they gave me all kinds of supplies and I cut up one of bags and used the cap on the bag. I had my surgery 3/3/07. I still see blood when I empty because your body does its job by trying to close up. I do not have any pain just a showing of blood after I cath. I hope this helps your concerns. Ellen
Rosemort2004
Posts: 34
Joined: 2006-11-05 02:50:04

Post by Rosemort2004 »

gillian you can use ACE plugs to stop an ACE stoma closing, but they only go to 12 fr, so not much good for the other stomas mentioned. I think there are other stoma plug products available for these though.
If you want further info you can email me aceplugs@gmail.com

Cheers
Rosemary
NZ
Carl W
Posts: 14
Joined: 2007-10-04 20:45:38

Stoma Closing

Post by Carl W »

I had that problem as well. It got so bad that I had to switch to a 12fr cath, which helped. Then, I had to have another surgery to repair some very large surgical herinias, and was in the hospital for a few days with a full foley cath. (which was a mess, since it kept getting clogged, and had to be pulled in and out several times). Anyhow, since that happened, I was able to go back to a hard silicone 14 cath. As for the skin healing over between drainings, that still happens to me if I don't put some ointment on the stoma, and cover it with a large bandaid or a piece of gause and tape that down. Then, it seems to stay soft and I can cath without too much trouble. I use a steroid ointment, but I'd think that anything, even petrolum jelly would work. The idea is to keep it soft, and keep it from healing. I know it hurts like the devil when it's healed over. Mine even hurts when it's soft. Feels like a knife in my side until the first inch is in. But, when it's soft, at least the knife is sharp. When it's healed over, if feels like someone's trying to put a saw blade in my side!
wolfva
Posts: 658
Joined: 2006-01-12 04:50:36

Post by wolfva »

Years ago I had a urologist who told me to lube my little finger and use it to expand the opening of the stoma nightly. He was surprised I hadn't done that the previous 12 or so years and that it hadn't sealed up. So, apparently it's not uncommon for a stoma to seal. Catheter, finger, whatever works; eventually it may settle down and stay the same diamater. I was lucky, mine never started to close.
Carl W
Posts: 14
Joined: 2007-10-04 20:45:38

Re: Stoma Closing Up

Post by Carl W »

Update on my post. I had a second surgery to "re-repair" the surgical hernias two months ago. I was in the hospital only 3 days with this one, since it was done without having to filet me this time. However, this time I had a 12 fr foley while I was in there. For the next 6 weeks, using the cath was a breeze. It's begun to close again, but now the pain isn't there. I think the tissue is finally healing around the stoma. I still keep the ointment on it, and cover it, but there's progress. Hopefully you too will improve with time.
khali00
Posts: 1
Joined: 2017-07-29 04:50:14

Re: Stoma Closing Up

Post by khali00 »

I want mines to close up completely since stoma team seem reluctant to do revert the ace surgery , it's so annoying when leakage appears everytime I do fibre diet just like normal people, who wants it open it's embarrassing when am with mates and it suddenly leaks who in the right mind wants an hole in the right side of their belly I should have not went with surgery I should have used lactose when I was young.
Ljassem
Posts: 4
Joined: 2019-06-17 11:25:47

Re: Stoma Closing Up

Post by Ljassem »

I have had this issue more than once
First time my doc Dr Bauer in nyc opened it up
And the second time he did a plastic surgery
With a plastic surgeon to keep it open
Good luck. There are solutions
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