Crohn's Forever.....Brand New Ileostomy......HELP!!!!

[calcat54]

Hello all, my name is Cathy and I was diagnoised back in 1989 after 10 years of doctors playing guessing games. I am probably older than most of you on this site. I am 58 and in the last year things have gotten bad. abscesses never healed and blockages took longer and longer toclear. The pain was intense! My doctor told me that my x-rays looked lije a road map from all the fistulas. One fistula actually broke thru the vaginal wall. Things were just a mess.
In January, things came to a point that surgery was the only answer. On the 18th, I had an ileostomy and life changed for me. I am having a hard time adjusting. I am so depressed and angry. I thought I had changing my bag down alright, but I keep waking up with a leak or jyst a huge mess to deal with. Does anyone else have this problem? Can anyone tell me what I'm doing wrong? I had trouble in the hospital with my kidneys failing so they have me drinking Pedialyte and eating thing containing lots of water. Could this be part of the problem. Doctor jyst keeps saying things will get better. My question is WHEN! Any imput woyld be greatly appreciated.

 

[GutlessWonder86]

hi Cathy, I've had my ileostomy for over 25 yrs due to Crohn's.

First, have you called the wound care RN who took care of you in the hospital to see if she can help? that would be your first step.

Second, google the united ostomy association of america (uoaa) and they have a site where you can find information on tips in dealing with the appliance.

That is what I did when I had leakage issues, I contacted the ostomy (wound care RN) RN and made an appointment with her and she reassessed the situation and we tried Eakin seals, paste, stomahesive powder, etc.

have you tried another brand of appliance such as hollister, Convatec, Coloplast, to name a few?? that could the answer as well because some brands don't stick well to certain folks.

feel free to PM if you have questions. and yes, a very watery output does affect wear time on the wafer. your output needs to thicken up like toothpaste.

 

[Karen]

I am sure that you will find the FORUM to be a VERY HELPFUL place to be !!!

 

[Sybil Vane]

Hi CalCat! Welcome to the forum. I am so sorry for all you've been through. CrohnsForum has a Stoma Subforum with lots of great advice and support. I would take a look through the threads and post on the subforum to get even more responses from folks who have been through what you're going through now and have come out on the other side: http://www.crohnsforum.com/forumdisplay.php?f=46. I hope this helps!

 

[Jim (POPS)]

Hi Cathy, I had a ilyostomy for about 9 months and at first I didn't like it at all eather. I did get better though.
No, you are not the oldest on the forum, ha ha ha , I'm 62 years old and found out I had crohns at age 61, now I'm 62.
I also live in California, a little north of you in Antioch, Ca. I am trying to put together a support group that can meet every month. Would you be interested, if so send me a message and I will contact you.
Keep your head up.
Jim (pops)