Hi, I have a couple questions and need some help. I had surgery 2 1/2 wks ago by passing the j pouch and going with end ileo. I have to empty 3- 4 times a night, will this change with time? Todd stated he is sleeping thru the night now - will this ever happen to me?
Also I went to see my surgeon today and he isn't happy with my stoma, it is pretty much flush to my stomach - he said we will talk about this issue my next appt in a couple weeks. How can they fix that and can it be fixed to make it a little larger? Iam still having problems with some leaking I also use the Ekin seals.
I would appreciate any feed back or ideas.
Thanks
Jan C

Jan,
It will get better- promise.

If your stoma is too flush, you might want to try convex wafers until your surgeon can get you in to fix it... I'm surprised that your end ileostomy is flush to your skin!

Right now, I'm struggling with withdrawal symptoms from being on the narcotics for so long. I stopped them about 4-5 days ago, and am having the classic symptoms. I'm sleeping GREAT, but getting to sleep is a REAL challenge.

Anyway,
This past Tuesday was 6 weeks post-op for me, so you've got a couple more weeks I think until you begin to see things slow down a bit.

//Todd

Hi Jan,

I had my surgery in Oct. After about 2 month after surgery my output started to thicken up and wasn't so watery anymore. Then about 3 months after surgery I was able to start sleeping through the entire night! It took 3 months for the sleeping mainly b/c my recovery was so slow and my body was pretty weak for those first few months.

So far I've found that rice, bananas, baked sweet potatoes, corn chips, and bread help slow things down. I'm sure there are more but these are the ones that are coming to mind right now.

An hour or so before going to bed try eating a banana to slow things down overnight.

Like Todd said try a convex wafer until your surgeon decides what needs to be done.

When the swelling from surgery goes away try wearing a support belt, I waited until 2 months after surgery before I started wearing a belt (I use a 4inch wide Nu-hope belt). It might help keep your wafer tighter to your body, it will definitely give you more confidence.

Scott

Thanks Todd and Scott,
I am using a convex wafer now with Eakin seal and still getting some leakage. I also wearing a panty girdle for the support that seems to help. I am sure I still have some swelling and maybe thats why the doctor said we can discuss the size of the stoma later. I will try the bananna before going to bed.
I am amazed at how I get so exhausted over doing so little.
Right now I am disappointed over the out come of the surgery, I just want it to get better.
Maybe Iam expecting to much to soon.
Jan C

I was very scared the first 2 months post end ileo because I had to change appliances every 1-2 days, my skin was constantly itchy, and I had a high volume of output. After 3 months things were much better. Output leveled off, I figured otu the right schedule for me and I started taking one Immodium around dinner time and that gets me through the night with no problems (sometimes 9 hours prior to having my son).

Don't get discouraged yet...give it some time.

Jill, Thats a great idea - with my j pouch I also took Immodium - I'll give that a try. I know I am being inpatient wanting things to get better right now. I am changing the wafer every day with some leaking taking place. With my temp ileo before take down it was nightmares with blow outs and skin problems. I quess I am nervous over the same thing.
Thanks Jan C

Hi

I had awful leakage, very uneven craggy area around stoma..
I use Keraya powder (solidifies leakage, seeping), then cement (perma-type is 1 good brand) layering wafer and corresponding area around stoma with a liberal coating, then Eakins seal (Eakins rules!!), then wafer then belt.
Stoma powder was a big help as was the belt.

On diet, Bananas every morning and a rice/egg fritatta bind me up pretty good. No soda.

Rice cakes are good now too-Ranch flavor especially, Not like Mom's rice cakes.

And I have 2 Pectin capsules 3x's a day with water-helps solidfy stool.

Just came back from cruise to Cozumel Mexico and the Cayman's -ate all kinds of fish, meat, even tried turtle..swam with dolphins....no worries/issues at all

Good luck/Good Health

Hi,
I am still having problems with leakage and having to change every 6 hrs. I have tried to convex wafers from Hollister, Coloplast and Convetec with Eakin seals and every other seals and pastes. I am waiting for Convetec to send me the moldable wafer that will fit any stoma. My skin is raw in some places around the stoma.
This is getting old. Does anyone have any ideas what I can do.
Thanks
Jan C

Hi Jan,

Sorry I have only just seen this thread and was dismayed to read your last entry saying that you are still having to change your appliance every 6 hours.

I had very bad peristomal ulcers (pyoderma) just after my surgery which left no healthy skin betwwen the ulcers and Wee Willie ands was having to change up to 4 times a day for a while so know exactly what you are going through. It doesn't help the healthy skin either to be getting distubed so frequently.

I wasn't allowed to use a convex wafer while I had the ulcers but once they had healed a good friend (who is also my stoma nurse) recommended Convatec's convex moldable wafers and all I can say is that they have changed my life!

At that time I could go an average of 6-7 days between changes with the moldables and probably longer but I didn't want to push things. I've had more surgery since then though and have aquired a few more lumps, bumps and extra belly buttons so I have to change every 4-5 days now but again could probably get longer but just don't want to push my luck.

I hope you have the same success that I have had with the moldable wafers. Keep us posted.

Take care.

Shell

Thanks Shell, I am waiting for my samples from Convetec moldable wafers now. I hope I have success with th.ose as others have with problem stomas. Yes, my good skin is also getting a work out, but I have been useing adhesive remover that is helping.
I will keep you posted.
Thanks again
Jan C