Jpouch surgery with ileostomy on 5-1...PLEASE HELP

Hi. I am 26 and just had my jpouch and temp ileostomy surgery on Tuesday{5-1}. I have FAP.

I am having horrible leaking problems, mostly because I am not a thin women. I have been changing my bag what seems to be every day or every other day(which causes pain and irritation) I am useing convtex wafers(first flat ones but ran out so not I am using convect ones) and the bag is a velcrow clsoure with a vent and filter...although I dont think the vent does anything for gas. anyway I also use covtex stomapaste. I didnt have success with the other thing(can remember name but looks like a washer).

I tryed metamucil to help bulk up my stool. which had been mostly liquid(water consistancy) and became very sick from it. today I am trying benifber chewables. so this should help with leaking.

I just cant handle when I get a leak I get so stressed and upset. is there anyone out there like me? any advice or tips would be appreciated. I need to survive 7 more weeks and I feel like I cant keep going along this way. The ostomy nurse hasnt been to my home yet and I am running out of supplies. Hopfully she comes today. I have my follow up with the surgeon friday to remove my staples.

Sorry you're having such a hard time. Definitely do what you can to see the ostomy nurse asap -- many, many people have had the problems you're having and had an ostomy nurse figure out what to do differently. So, don't despair, and try to focus on the present -- it is very likely that things will get better, it's not going to be 7 weeks of this.

A few questions: are you measuring your stoma before you change? It gets smaller as the swelling goes down, and if the hole in your wafer is too big, that can be a problem.

Are you using adhesive remover? If so, are you making sure that you wash it off very well with an unscented soap? If there's adhesive remover left, it can cause the pouch not to stick (I don't use it).

Are you using any powder? That can also cause the wafer to not stick.

The name you're forgetting is probable Eakin seal or barrier ring, btw.

The vents don't tend to work on ileostomies -- the output is too liquid and clogs them. There is a lot more gas at first, that might settle down some (and if you're drinking carbonated things, that will make it a lot worse).

When you take off your old pouch, it's good to move the skin away from the wafer (slowly) rather than pulling the wafer from the skin. Causes less irritation....

Convex is probably a good idea, both because you're not thin and because it sounds like you have a loop ileo. How far does your stoma stick out from the skin? The temp ones can be short, which also can cause problems. The nurse might have some tricks with extra convexity to make it stick out more.

You might also find that a different brand works better for you. You can call the companies and ask for free samples (major ones in the US are convatec, hollister, and coloplast) or if you're ordering from a supplier like edgepark, they can send you a bunch of samples.

You probably want to talk to your surgeon about whether it's a good idea to be taking fiber so early after surgery. Your intestines are sore. You might be better off with immodium or lomotil to slow things down and thicken up the stool.

Hang in -- it will get better.

Are you allowed to take showers? That's one way you can have a bit of a break w/the bag off.

I never got the hang of paste, as the eakins work well for me -- but others can probably answer your question.

I think what you're using is a moldable wafer, and that's good that you don't have to cut it -- but they do come in sizes, and if yours is too big, that's going to cause all kinds of problems. Do you have one of the guides to measure your stoma? It's a big card w/circles cut out. You could check next time you see and compare to what it says on the package (if you have samples you might not have the package, but you can look up online by the brand and number).

Definitely make sure you have an ostomy nurse, not just a regular visiting nurse -- this list is full of stories about the incredibly unhelpful things visiting nurses who didn't know what they were talking about have suggested (although some know more... but the ostomy nurses have special training).

If your stoma is flush, you definitely need more convexity. Hopefully others will be along who have had that problem and can give advice. I know that others here have been pretty desperate and then worked it out....

Hang in.

I agree, sounds like you need something with deep convexity and perhaps even trying out the belt for a bit would be helpful. I have a skin condition right now and when I change on the weekends or when change day happens to fall on a day I have off of work I will shower and then put down a chux pad on my bed and just lie there with everything uncovered for as long as I can. Typically I have better luck with it first thing in the morning before coffee/breakfast. And as someone else said, taking a shower with everything off is just delightful :)

I could not edit the above post. I have to use the Coloplast because I developed an allergy to the Hollister adhesive. I am extremely allergic to the Convatec products. One of the lucky 0.06 %.

sorry it took a while for an update. The ostomy nurse came and was helpful. She changed everything and did help. ordered my supplies(which were delivered yest)

I went to the surgeons yest and she was please with everything. she removed all the staples except for every other on over the larger incision. I go back in a week for that.

I can kinda tell when the seal is going to leak now. So this morning I had a feeling it was going to and I decided I was going to shower without anything on when it happened. and it FELT GREAT to be free lol. My incision has been ozzing a little(she said old blood) nothing to worry but its what I though was stool. so once I have figured that out I haven't had multiple changes during the day anymore just everyother day.

heres a question and something I am trying today. I have a great seal around the stoma and a belt on. Do I need to use the adhesive paper? I feel so much better without it and i figure if I am not moving around to much wouldn't it be nice to give my skin a break?

EVERYONE says if I could get my stool firmer it would solve alot of the leakng issues. so I tried benifiber and it isnt working at all. I tryed Immodiom AD this morning and having had much of a BM yet. actually strike that it is starting now(been about 2 hours since last) and still pretty thin. the metamucil made me sick, any other options?

side note I was so thrilled that my supplies came. This morning when I went to change everything the bags were to big and so that was again frustrating. I am SO looking forward to take down surgery.

ps: what was your typical weightloss, I am 12 days post surgery and down 20 pounds

I had a proctolcoectomy with j pouch construction and temp ileo at Robert wood johnson in new Brunswick. they ordered me coloplast instead of eakin seals. I used the for the first time today but I noticed there not very thick and are not as structured as the eakin seals.

you dont have any leaking issues?

I agree with all those foods, but not the cream cheese. If I eat anything that has a lot of butter fat: cream, chream cheese, butter, any of those in sauces, I will get diarhea (not in the bag, out my butt, and being not even 2 months post take-down, diarhea will just leak out uncontrolled.
Keep to low-fat foods.

When I left the hospital I was 92lbs - my normal is between 125-130 and I am now 127 (discharged Feb 7). Be careful about thickening your stool too soon, you are close to your surgery date and things may not have had a chance to really get working yet. I didn't have "appropriate" output until mid-March and my initial surgery was Dec 15.

The whole thing is supposed to stick but you need the BEST seal right around the ring. I still have a divet right down the middle of my stomach from where I was gutted (LOL!) so one edge has to tuck down in there and it ALWAYS starts to come up about 2 days after I put it on - but even though it comes up I don't have any leaks b/c I have a super seal right around the opening.

I wasn't trying to supercede anything your docs have been telling you, just telling what my personal experience was. Sorry. You may also want to try the metamucil "cookies" if they are really concerned about it - 1/2 of one of those babies made my output like cement! No bueno. If you get it too think you may end up pancaking and then you'll have a whole 'nother issue to deal with :)

I was 94 when I left the hospital, but most of that was water retention from the IVs. I was down to a little over 85 lbs a few days later. My normal weight was 105 and I am about 5'2", give or take a half inch. Now I am about 94-95. I think this is where I will stay. My appetite isn't what it used to be, but I feel okay energy wise. I will probably lose more when I go for surgery on the 29th. Oh well. We leave for vacation in early July and I plan to eat like crazy!

Maybe to see what is going on with the incision? Just a guess? I have read from others that is output gets on those Eakins they start to breakdown pretty quickly, maybe this is causing your leaks? I am not familiar with the loop ileos though from what I have read from others they are a real pain in arse!