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Ileostomy - Dehydration and leakage


Mon, March 29, 2010 5:07 PM

Hello,

I have had Crohn's for over 30 years.  My colon and some small intestines were removed over 25 years ago.  17 years ago I had more small intestines removed.  It was then I began suffering from dehydration - everything I would drink would go through me in less than 5 mins. and my pouch would become very fill.  In the last 6 years I have begun to faint.  I go to the ER many times they keep me because they were concerned about my kidneys.  I would average going to the ER atleast once every week to be re-hydrated.  My doctors (in Boston) were not sure of what was happening.  Now I am on disablity and had to move back home (in another state).  I don't have health insurance (LONG STORY).  I am forced to go to a clinic and work with residents.  who can not help and will not but me on medication that I was taking in Boston.  THAT IS PROBLEM 1.  My major issue now is that I am leaking from my wafer everyday sometimes I change my appliances 3 times a day.  I am afrad to go any place because many times, without warning I am totally soaked - a most embarassing situation.  THIS IS DRIVING ME OUT OF MY MIND and broke I am paying for all of my appliances out of pocket.  I have attempted to see other doctors but was told that they did not take charity cases.  I am deeply deeply depressed.  I don't know what to do to stop the leakage - my food does not form there are no answers.  I NEED HELP AND DON'T KNOW WHERE TO TURN.  Perhaps someone "out there" can help.

FPO librarian1
Joined Mar 29, 2010

Fri, April 23, 2010 11:52 AM

 Reply posted for Tia24.

Thank you for your information.

FPO librarian1
Joined Mar 29, 2010

Thu, April 22, 2010 12:00 AM

 Reply posted for librarian1.

Hello,

I am also uninsured and I use financial assistance programs to pay for my treatment and medications.  I have taken humira, remicade, prednisone, asazan, and imuran with the help of financial programs.  Log onto www.needymeds.org and you will be able to search for programs that apply to you, even including programs that will send you ostomy products and nutritional shakes to keep your nutrition intake healthy.  Some of the programs will cover the cost 100% and if there isn't a program for the certain medication you are suppose to be taking they also offer you prescription discount cards.  I am currently using a discount card and it takes 50% off my meds.  Good luck!

FPO tia24
Joined Apr 22, 2010

Wed, March 31, 2010 3:01 PM

 Reply posted for librarian1.

Look to see if there is an ostomy support group nearby.  They may be able to help or at least point you in the right direction.  I know there are a couple of clearinghouses for supplies ....do a search under the discussions on     http://www.uoaa.org/.
Ileostomies are sooooooooooooooo fickle. I wish you brighter days!

FPO kc
Joined Jun 23, 2009

Tue, March 30, 2010 6:07 PM

 Reply posted for librarian1.

i am not sure about the leakage- but my son has quite a few bags that he has and is not using- i would be more than happy to mail you what we have for your use. They are not "pre-cut" so you should be able to use them- I have both one and 2 piece- Hollister and Coloplast- That might help a little. If interested please email me your address- Hang in there- this site is wonderful and someone will be able to help you.

sulzers@sbcglobal.net

FPO wildcat
Joined Jul 6, 2009

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