Eighty day update.

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Well, there are a few things that I can say looking back on this.

First, The volume of liquids I have to drink now just to be able to go outside at all is staggering. That means a lot more bladder accidents.

Second, heat is not my friend anymore. Being that I spent most of my life as ThatFLGuy, the heat was just something I got used to. Not now. Just a few minutes being outside here in Pa. (80*)yesterday made me need 3+ liters of liquid to not feel bad.

Third, I sleep a lot more but only when I am truly done. My body doesn't allow me to just sleep when I want anymore so I sleep when it does. This means that sometimes I am up every hour. Other times I can get 4+ hours of sleep in one go. But spent 12+ hours in and out of bed just about every day since I got home from the hospital.

Fourth, everyone with an ileostomy is different and for me this has been very hard. I truly do not have a lot of energy anymore. I need stuff like coffee or soda to get me going and keep me going but then I have that crash effect. That also means that a lot of time I get up, eat then rest for the day, and do nothing else.

Lastly, other people just cannot get how bad this is unless they go through it. I could not bend down to do anything for months. Even now it is an issue so keeping my apartment clean is a big task.

 

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ThatFLGuy -- Thank you for the update. Looked up Ileostomy. There are different kinds of Ileostomies. But sounds like 1 that came with an Ostomy bag. Am I right? My friend was going to have that done. She only 21 years old! Instead she's going to have a Gastric tube surgically implanted into her stomach & then into her small intestine. Getting back to you though, you've been thru the mill! I feel 4 you!!

 

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ThatFlaGut: Darn! you are amazing for Persistence! Keep going, keep fighting, keep adapting!
Had bezzare schedules: 3-days 12 Hrs, 2 1/2 off, 3 nights 12 Hrs, 3 1/2 days off: repeat as per orders for 3 years. That was Coast Guard Search-and-Rescue, weird schedule due to low numbers of workers to spread the schedule out. And a bad case could hype you out of your sleep rhythm badly.
Pulp Mill had 1 month days, 1 month swing, 1 month nights. That was deliberate to keep employees off balance. The evidence leaked. They didn't care about the accidents it caused
It all plays hell with your circadian rhythm. That's one of the things sending you for a loop, as you know. For heaven sakes, beware when traveling. I don't think you are running heavy and/or dangerous machinery, but you get the idea. If they didn't warn you or provide education, make them do it, even if it is only written stuff. There is some heavy-duty research on this.
There are some not-so-dangerous Medicines of anziety. Lorazabam is "as-needed, but addictive if used too much or too often. Buspirone is daily, not supposed to be addictive - they are just starting me on that. Will report.
Hope this isn't duplicating, and hope it gives you ideas.
Hang in there, friend

 

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@ThatFLGuy, thanks for the update. Sorry to hear it's continuing to be a struggle with your energy levels and with staying hydrated.

I've been following your posts with interest. 35 years of UC/PSC have done their damage, and my GI has found dysplasia in my colon on three separate colonoscopies over a two year period. He wants to be conservative and send me for another colonoscopy with a more specialized endoscopist, but I'm at a point where I think it's probably time to just take out my colon. I doubt I'm a good candidate for a J-pouch, so I'll likely get a permanent ileostomy.

Reading of the struggles you've had makes me realize how hard my road ahead may be. I know that everyone's different, but there sure have been a lot of bumps in your path. I certainly hope you continue to heal and adapt to your new digestive routing, and that things smooth out for you!

 

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@pegasi99

An Ileostomy is cutting your skin and pulling your small intestine out through the opening then attaching an ostomy bag. I have a loop ileostomy which just means that mine could be undone/reversed. It makes it so that my bowel is no longer part of my digestion. This means that there is no bowel to absorb water/liquids which is a huge part of hydration.

For me, this was the only option I was given to take care of my issue but it is just the first step.

So yea. I have an ostomy bag but still, need a diaper for urinary issues which is something else my doctor is going to be addressing at my next visit.

 

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Oh, thank you for explaining that. Glad you can reverse it it need be.

 

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@ltapilot

Feel free to PM me if you would like. Some of the stuff with this is TMI for this board.

I would suggest that you get on www.uoaa.org and read stuff there as well.

I am ThatFLGuy on there as well

 

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I was thinking back to when you first started posting and you were still working. Hard to believe what you’ve survived the dream mine and what you will continue to survive ahead of you. I think you have the compassion of everyone here.