HealingWell
Search Close Search
☰

suggestion?

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/28/2018 9:12 PM (GMT 0)
Hi I used to be on this site a while ago, then almost died and stuff happened. Anyway got a new post ID and I am back, but...I really find the ostomy section hard to use. I have a permanent ileostomy and I find that the majority of the posts here seem to be for j pouches or other semi solutions. Seems like every time I find a topic that could help me.....nope not for us permanent types. I know there are overlaps, and it would probably be a pain to put another category here. But could it be considered? Maybe take a poll? This site used to be so helpful but not for me any more.

Respectfully.
Posted 1/29/2018 2:36 AM (GMT 0)
I think it's a great suggestion. it would be fun to build out the ostomy area further, and expand upon it. The problem I see, is that it's not the busiest of forums, and a lot of the people are from the UC board. Many move on after surgery. The ones who post, often, (not always but often), do have j-pouches. I wonder if the board was split, if there would be much in the way of responses. I think us jpouchers have lived with the ostomy, so we have some ideas, and experience to share, but of course, we do not have the wealth of information that perm ostomy people have. When you post here, you usually get responses from both, people who have had temps, and people with permanents, and that's hopefully better than getting less responses from just one or the other.
Posted 1/30/2018 4:20 AM (GMT 0)
There does seem to be many more J pouchers than perms. Being a perm myself I still find it interesting and useful to read entries from the entire ostomy spectrum. Gives us all a sense of camaradarie as well.

Speaking of interesting, does anyone know any statistics for how long the typical perm illeo will last without additional surgery? There is a gentleman at my local Ostomy Society, the President in fact, that has had his perm illeo for 39 years! I think he may have had some "touch up" surgery done just last year. My surgeon told me about a gentleman that had his for over 40 years before needing additional surgery. Apparently over time the stoma shrinks or shrivels up and needs to be extended. I wonder if that's typical or if they're outliers.

For that matter, does anyone have any numbers on how long J pouches last? Is it forever maybe?

OT - Montezuma is really noisy tonight. Guess that'll happen when you eat blackbean enchiladas.
smilewinkgrin
Posted 1/30/2018 5:35 AM (GMT 0)
The moderator here, shaz, has had an ileo for a very long time I believe. I wonder a lot of the same questions you do. I wonder about both ileos and pouches. I hope we can have them forever, but I don't know. It is weird how we all kind of ended up lumped together, but I am happy about it. Having lived with an ostomy, and learning about it, and what it is entails, I've learned a lot and it's opened my mind. I've met so many amazing, strong people, who know what's important in life. It's kind of refreshing. I learned that I could be an ostomate and it wouldn't change who I am. It's interesting to say the least and not something everyone can say they've experienced.

Montezuma, that's a great name. Black beans would do that to anyone... the worst for me, even with my colon were heavy cream dressings and sauces.
Posted 2/1/2018 1:19 PM (GMT 0)
One thing I found interesting when my husband had his ileostomy was when I switched to convex barriers with a moldable opening, his stoma protruded more and got larger. It was getting so small that I was worried that it would disappear. Now that he's getting a colostomy, and his colon is so dilated, I'm worried that he's going to have a huge stoma already and that the convex barriers will make it even bigger. I guess we'll see what happens after his surgery today.

notbob said...


Speaking of interesting, does anyone know any statistics for how long the typical perm illeo will last without additional surgery? There is a gentleman at my local Ostomy Society, the President in fact, that has had his perm illeo for 39 years! I think he may have had some "touch up" surgery done just last year. My surgeon told me about a gentleman that had his for over 40 years before needing additional surgery. Apparently over time the stoma shrinks or shrivels up and needs to be extended. I wonder if that's typical or if they're outliers.

Posted 2/1/2018 2:01 PM (GMT 0)
I have noticed that even with temporary and permanent ostomy folks responding, this forum gets a lot less activity than the UC forum I also follow. I’ve always assumed that it’s just because as folks stabilize, whether with permanent or temoporary stomas, their need for support decreases. But I do agree, it’s sometimes hard to find the relevant posts. Although, really, being a j-poucher makes me an outlier for a lot of UC posts too, so maybe I’m just used to sorting through a bunch of information that doesn’t directly apply to me.
✚ New Topic ✚ Reply