Please say a prayer for me. I just found out my colostomy is most likely permanent, and I have a couple more surgeries at the least. I have liver disease, GERD, and gastrointestinal disease. I was already struggling before this news, so it's a real kick in the face. I appealed Medicaid and Social Security denials and spoke with a disability lawyer, but all this is going to take time to get going, and I can't afford supplies without income or insurance. I need prayers to just keep trusting God will provide. I'm in need of Sensura Mio Click 11482 and Sensura Mio Click 16961, Brava moldable ring 4.4, Brava protective seals 4.2, barrier sheets 4x4 32105, or anything at this point. No support or income, and I'm really struggling.
Meri ostomate
Apr 02, 2024 8:24 am
aTraveler
Apr 02, 2024 9:00 am
Meri, I know the Lord hears your prayers. I join you in prayer in seeking a speedy adjudication of your appeals. I further pray for your health and that you will be able to attain the supplies to help you maintain your colostomy. You should also apply to KindredBox for help with supplies:
https://www.kindredbox.org/apply
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Posted by: Karen & Stella
Fay,
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
AlexT
Apr 02, 2024 3:17 pm
Well, now you know what you're dealing with and you can get on with life. Smile, enjoy what you do have, feel the sun on your face, and live. Dwelling on things doesn't do your mindset any good.
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Hollister
A convex ostomy skin barrier can help prevent output leakage and skin issues. Unfortunately, some misconceptions about convexity may keep people with ostomies from using it.
Learn about convexity and 4 myths surrounding it.
Learn about convexity and 4 myths surrounding it.
MoeMoe
Apr 03, 2024 4:48 am
Hi Meri, I too join you in prayer. May God's holy hands bless you. You can call suppliers and get samples, and maybe they know of places that could assist in times of emergency. Sometimes it's difficult to stay positive, especially when the road seems bumpy, but darkness never prevails. Sending good vibes and sunshine to light your way!! ☀️
My Ostomy Journey: April | Hollister
