Drink coffee and drive at the same time! I never thought I'd be able to do that again. Have a blessed Sunday, friends!
Feb9HH
Feb 05, 2023 2:42 pm
AlexT
Feb 05, 2023 4:32 pm
I was thankful I could leave my GPS coordinates of every bathroom within a 50-mile radius at home. Plus, I don't need new underwear constantly now.
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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
gentlejohn
Feb 05, 2023 5:50 pm
Surgery gave me my life back. As I was treated with biologics, I got sicker.
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Past Member
Feb 05, 2023 6:13 pm
I am thankful for my ostomy for it saved my life. (I can't think of anything I can do now that I couldn't before except chat with you wonderful people.)
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TerryLT
Feb 05, 2023 10:42 pm
I am thankful, mostly because mine saved my life, but it also because it allowed me to live a life free of constant discomfort and pain. All the other little bonuses, like multi-tasking, and not having to constantly be in the vicinity of a bathroom, are just icing on the cake.
Terry
Longroad78
Feb 06, 2023 2:51 am
I am thankful that I no longer have to know where the nearest bathroom is wherever I am.
Ycitygrl3842
Feb 06, 2023 3:03 am
Mine saved my life. It gets hard sometimes but I am learning to live with it.
w30bob
Feb 06, 2023 3:23 am
Yeah, I hear y'all.........it saved my life too, I guess..........but I wouldn't go as far as to say I'm 'thankful' for it. I would be more thankful if I had better doctors early on, and big pharma got off its ass and actually made some meds that cured this shit, as opposed to making meds that just treat diseases (that you have to take forever instead of a cure you take once and are done with it). Not much profit in the latter though. Greedy bastards that they are.
But yeah, it's better than knowing where all the bathrooms are everywhere you go, as was said above..........or having to sit things out because there wasn't a bathroom near that event! And think of all the toilet paper I've saved!!
;O)
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ron in mich
Feb 06, 2023 2:20 pm
Hi all! Mine saved my life, but I can walk and chew gum and poop all at the same time so there's that to be thankful for.
southpawbass
Feb 06, 2023 8:32 pm
Holy cannoli!!!
I thought I was the only one who had a GPS for this sole reason (prior to my initial surgery).
Gratitude!
Storm54
Feb 08, 2023 5:03 pm
Which biologics made you sick? I am supposed to start Gattex soon and I'm really nervous about the many side effects that are listed. The doctor insists I try it and see how it goes because I'm high output and need more absorption. Ugh
bballman54
Feb 09, 2023 3:19 pm
I thank my ostomy for the opportunity to wake up every morning and do about 90% of the things I used to do and a few things that I couldn't do before, like poop while I'm cooking. :0 :) ;)
drums_weights_ileostomy
Feb 12, 2023 2:25 pm
I'm thankful that my surgery probably saved my life 49 years ago. But what I'm really thankful for is the fact that I don't have to have two sets of clothes, one for the skinny me when I was in remission, and one for the fat me when I was on medication. That was very difficult for a teenager.
Feb9HH
Jun 09, 2023 3:11 am
I'm so sorry I'm just responding. I wish there was a separate notification when someone comments on your post. I log on and it will say 86 and it's a bit overwhelming. I only recently figured out to just go look at my posts and check the replies.
I first took Remicade infusions. I got antibodies to it and had to stop. I also had a skin issue from it. Then they put me on Humira and I got some kind of nerve issue in my hands and arms. I had to stop it myself because my doctor didn't believe me. I still have it today. Just not as bad.
I have not heard of what you are taking or going to be taking. I hope though that you get great results if you decide to go that route.
Feb9HH
Jul 28, 2023 3:29 pm
I am so sorry I missed your comment. I was on Remicade and Humira pre-surgery for ulcerative colitis. I have a little neuropathy in my hands now and weird freckles on my forearms from Remicade. This was prior to my ileostomy surgery though. Just be aware of the side effects and notice if something happens that's different. Hope you are doing well and it's helping.