How long with a stoma.

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Matt.B

Matt.B

Joined
May 12, 2012
Messages
13
I'm curious to know how long people with a temporary have had to wait until the reverse surgery. My Op was pretty intense with 3 sections being removed and quite a lot of damage removed. I know the longer they leave it the better but maybe someone can give my a vague idea of how long i have to wait until i can ride my motorcycle again.
Im healing pretty quickly but are there any other issues that can arise in the meantime? I read somewhere about absysts and the like developing around the stoma site.
 
Hmmm, I cant really get my leathers or jeans on because the belt goes right across my stoma. I dont really want it to get blocked and have a blow out :(
 
Ah... I understand now. It's too warm here for leathers. The jeans issue--For me, the bag is right above my waist line. I lost enough weight after surgery that I can pull the waistline of my jeans down around my hips enough that it doesn't impinge on the bag and yet my pants down fall down.

I usually wear my bag out anyway and use a bag cover in case my shirt slides up. I don't mind if someone sees the bag, I just don't want anyone seeing green poo. Ha!!
 
Matt,
I had a"temp bag" for a little over 4 months...no issues. Stoma located above waistline (looking down to the right and a little lower than my belly button).
There is a product (I forget the name but it is in the online catalogue you can order from a Company called edgepark) --it is almost like a holster for the bag--instead of the bag hanging down, it "craddles it sideways" allows for function while maintaining an active lifestyle...sking or in your case biking.
 
Thanks for the info. At the moment i only wear track pants as they can pull right up over the top and its OK but if i wear anything lower and hang the bag out it tends to ride up and push the bag which unpeels it. :(
Might just have to be content with teaching the Mrs slow maneouver practice out the back and rebuilding my engine in my spare room. Idle hands......
 
Matt.B,

I wear low rise jeans...they are very comfortable and the waistline is nowhere near my stoma. Levi's 511's are my favorites, 514's are good but sometimes a bit baggy. I let my bag hang over my jeans.
 
Matt, sorry it sounds like your stoma is in an awkward place. Shop around once you are up to it for trousers that work for you. I'm sure you'll find something. As for getting on your bike, I would guess you could do it rather soon. If it ever ever ever stops pissing it down with rain!?

As for how long before reversal....what did the GI say? At my hospital, they usually wait a year for reversal, minimum. The earliest I've heard of was 4 months. But alot of reversals take place around the 6 month mark. It really depends on how your crohns is behaving, and if you are healthy.
 
[Matt.B] but if i wear anything lower and hang the bag out it tends to ride up and push the bag which unpeels it.
Click to expand...

Hi Matt.B

Just a quick question. Are you only wearing the bag? Do you not use any flange extensions etc...? They will help keep the bag secure. Definitely worth looking into :)

Hydro frame is a good product to use.
 
I tried using the 2 piece bag but the ring didnt flex well and caused it to peel off. I'll have a look into alternatives as i did hear about some type of protective box.
 
Matt, once your stoma stops shrinking it's a good idea to ring the manufacturers and request samples. They will go over with you what your stoma and output is like, and suggest things for you to try. Most of the companies employ ostomates for this particular customer service job. So they know what they are talking about!
Try Convatec, Coloplast, Hollister (my least fav, but hey) Salts (for their barrier rings.
 
Cymed works wonders for me. I swim with it. The adhesives are so strong that the pouch has NEVER fallen off. In fact, sometimes I struggle with taking it off for replacement.
 
When I left the hospital the surgeon told me 2-3 months till I could have the tear down/reversal. I hope I don't have to wait 6 months. I want this thing off me now and it has only been 3 weeks.
 
It was 4 months (was initially told 3-6 months) with a temp ileostomy for me after emergency ileo/caecal resection last year. Had the reversal 8 months ago and doing well! I had to nag the surgeon for the last month to get it done though.

I see you are in the UK too so you'll be familiar with the how the NHS works! :D
 
I hope to have mine for exactly three months so I can go on holiday in August without a stoma. I passed a grastrografin enema test last week (all healed, no leaks or obstructions), so no obstacle to that at present.
 
Terriernut said:
Matt, once your stoma stops shrinking it's a good idea to ring the manufacturers and request samples. They will go over with you what your stoma and output is like, and suggest things for you to try. Most of the companies employ ostomates for this particular customer service job. So they know what they are talking about!
Try Convatec, Coloplast, Hollister (my least fav, but hey) Salts (for their barrier rings.
Click to expand...


Excellent point. Also, instead of a product manufacturer, try a an expert with an online retailer of ostomy supplies- they can send you samples from multiple companies so you don't have to call each one individually. They will certainly be able to send you some samples and see which ones fit the best. Once your stoma size is done shrinking, be sure to measure how tall it is. I can't remember the number, but if your stoma is too short you'll need a pouch with a convex wafer because flat ones won't be as secure- if I wear a flat one mine will leak out the sides. That may be part of your problem now, but I'm just guessing. A good specialist will know. I use best buy ostomy supplies (google it) because they are cheap, and free next day fedex if spending over $55 (roughly), but there are many others. The good retailers will advertise on their websites that they have specialists available to talk to- all easy to find with google. These specialists will be your new best friends!

I have had a permanent ilieostomy for over 20 years now, and at the time of my surgery the internet browsers were just about starting. Back then I was only getting 2-4 days worth of wear time with each appliance, but after talking to specialists, I changed my routine and now routinely get 7 days or more per use. I use a one piece, but added an Eakin barrier (large size) underneath (it fits over the stoma). Some like the smaller sizes, or barrier rings, but those didn't do much for me. Once applied, I also use a little paper tape around the edges of the seal- if they pouch has little hooks for a belt, I would put a little paper tape on them to hold them down. That also helps a bit.

Don't get too discouraged or try to change your lifestyle too drastically in order to accommodate a bad fit pouch. Pouches should be very secure and provide peace of mind.

Keep us posted,
Hobbes650
 
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