Please help with stoma and fistula

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

L

lemmony

Joined
Mar 20, 2013
Messages
7
Hi, I'm new and didn't know where to post this.
I have a colostomy and a permanent mucous fistula. The fistula produces what is normal for it- smelly horrible stuff. I've seen the doc and it's all normal. The stoma caps I am using don't collect the goo properly as the fistula is on an uneven area and the caps are flat .I have tried melatonin dressings and they don't do the trick either.
Does anyone have suggestions or know any tricks ? The Eakins seals just disintegrate into a mess on my skin ,though I know others swear by them.Is there such a thing as a dressing or cap that works on uneven skin ? any help much appreciated.
thanks
Lemmony
 
Hi Lemmony, I haven't had experience with mucous fistulas but do have a very leaky ileostomy. Have you tried paste? I use convatec paste which helps a lot. it is helpful for filling scars and creases so maybe might help you.
 
Hi Anna, no I have never tried paste .I've never seen it either .Is it runny ? how do you apply it ? is it like cement texture or paint ?
thanks for the reply
L.
 
Its sort of the texture of toothpaste. I apply it around the hole in my baseplate but you can apply it directly to the skin to fill any hole/creases. The warmth of the skin hardens it up a bit and after a day, or longer if you are lucky it comes off when you remove the baseplate. If I have to change before a day is up I sometimes find it very hard to remove from the skin, but my stoma nurse says you don't need to, just put new baseplate and paste if needed on top. Could be worth trying for you, various stoma supply companies make it but I like the convatec.
 
Lemmony, do you have a stoma nurse?

I use Coloplast Brava strip paste. It works like caulking. It feels like sticky clay and you mold it directly around the stoma before putting the bag on.

With your uneven skin, you might try some stoma paste first, like Anna suggested.
 
Hi thanks for that info.
Yes,I do have a stoma nurse and I saw my doc who put me in touch with her when she thought the nurse needed to do a wash out of the fistula .Unfortunately, the stoma nurse came out and said she didn't like doing wash outs, so she left me with a long needle like tube which I!!! was supposed to push through my fistula and out of my back passage !! needless to say, I wasn't risking that .So I am stuck with trying to keep the leakage from soiling my pants etc.
L.
 
lemmony said:
Hi thanks for that info.
Yes,I do have a stoma nurse and I saw my doc who put me in touch with her when she thought the nurse needed to do a wash out of the fistula .Unfortunately, the stoma nurse came out and said she didn't like doing wash outs, so she left me with a long needle like tube which I!!! was supposed to push through my fistula and out of my back passage !! needless to say, I wasn't risking that .So I am stuck with trying to keep the leakage from soiling my pants etc.
L.
Click to expand...

That is SO wrong!! You should let your doctor know the nurse did that. It's her job to do the washout, right? Arrgh! What country are you in?
 
the UK of course !!
It's very hard to get a decent GP who knows anything about stoma's, and even harder to get a stoma nurse who will do wash outs .I lived down South for a while and had a great nurse who would do it, but she warned me never to attempt it myself as you can puncture things.
Since then, I've had to make do.
 
Hi lemmony, I had a mucous fistula with a high output. Sorry if I have misread this, but are you using a stoma bag over the fistula? I had small ones which did the trick from coloplast. It shrank down considerably and then i used optsite dressings after that. It did need changing regularly though. How long have you had it and what are they planning to do, a reversal maybe?

Kaz xxx
 
Thanks Fairy ,and Hi Kaz. No it's permanent .I have tried coloplast and all makes of stoma caps but they don't seal well as my skin is very uneven ( it's right where your pubic hair should be )What are optsite dressings ? it's way too small to place a bag there or even a mini pouch. The size of a stoma cap is right but it dips into like a v shape there .I have tried melolin dressings but they don't absorb much and the smell is awful - though normal my doc says.
 
Yes, I remember it well. The opsite dressing where the ones they use at hospital to put over an op site (lol). They just really contained it until I could change it. The smell was an indicator that it needed changing. The mini pouch worked for me, before it shrank, but mine was higher up on my belly. The opsite dressing were nothing special but stuck well and didn't irritate my skin. The output is not pleasant and quite thick, so I don't think it will absorb well into anything. I used opsite plus, 6.5 cm x 5 cm. My GP would prescribe them for me. Hope you find something that works well for you. I was advised and opted for a proctectomy in the end xxx
 
What is a protectomy ?
A surgeon said he could simply just sew up the fistula site and it would all come out through my bottom but the surgeon who did the actual colostomy and fistula said it would require major surgery to get rid of the fistula. ???? I am assuming the proc thing is rectum removal ??? it doesn't annoy me that much !!!! I really don't want more surgery.
 
A proctectomy is the removal of the rectum and remaining bowel. Click the link above in my post. I don't blame you not wanting more surgery. Do you have crohns? I am glad now that I am this side of it and it was the right decision for me. But if you can cope you might well be better off leaving things as they are. Some on here are opting to have a proctectomy, others are against it. I was advised, as I have crohns, I would be better off, although their is a risk of healing complications for us crohnies. Xxx
 
Hi Kaz, no I don't have Crohns, thankfully.I had my op as I was left incontinent when a doc cut me too far during an episiotomy in childbirth. The surgeon who did my op did the fistula in case I had a change of heart or advancements came along.But my rear end is stenosed ( closed over with time ) and no changes can be made.

Thanks for your help
L
 
There are convex ostomy wafers that conform to uneven skin. Please contact ostomy supply stores or an ostomy nurse to help you.
 

Similar threads

S
Recto-Vaginal Fistula - Help?
Replies
5
Views
3K
AFS
A
B
Possible Recto Vaginal Fistula? Please Help!
Replies
3
Views
2K
caretothepeople
caretothepeople
I
Have abscess on labia,could this be a fistula!?!? Help please!
Replies
13
Views
3K
Ihurt
I
blobbyknobby
Invisible Disabilities...
Replies
1
Views
1K
ronroush7
ronroush7
D
A Father's Light Take on a Heavy Load
Replies
0
Views
56
dave seerman
D

Latest posts

Back
Top