Ileostomy Reversal - My Journey

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Xndman
Posts: 12
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Sat Oct 02, 2021 9:55 am

Thought I'd drop in with another update. I'm just over 4 months out from reversal surgery now. I still go upwards of 10x a day but the stool is typically pretty well formed. Boozing does indeed make things pretty watery for some time the next day. My control keeps improving and I don't even think too much about going out anymore. I prefer to have an hour or so after eating but I haven't had any accidents in quite a while and I've gone as long as 8 hours without pooping.

It feels like the last step for me will be for my new "colon" to accumulate more stool before making me feel like I need to use the bathroom.

Aside from the pooping saga, my energy is very slowly improving. I do a lot of walking but not much vigorous exercise, I need to start that. However, when the end of the day comes I'm usually pretty tired.

DennisG
Posts: 2
Joined: Mon Oct 04, 2021 8:01 am
Facebook Username: Dwg3636@comcast.net

Re: Ileostomy Reversal - My Journey

Postby DennisG » Mon Oct 04, 2021 9:07 am

After my second bout of colon cancer, because I have Lynch syndrome my surgeon thought it was time to remove my large intestine. It’s been 18 months since my surgery and I continue to suffer. My weight dropped from 198 to 166. My stomach is almost always bloated, stomach feels as if I was punched and I am very weak.

I have about 10 BM’s a day, however about every four weeks I have about 20 BM’s daily for a week. I lose 5 pounds and am so week I can barely function. I lose my appetite and feel nauseous after BM’s. I get dizzy when I first stand up. Quality of life is a 2 at this point.

I take 6 imodium every day. Two capsules three times a day. I just started hyoscyamine sulf (Levsin) 3 times daily.

Any ideas would greatly be appreciated.


Thanks, Dennis

Xndman
Posts: 12
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Wed Oct 06, 2021 6:07 am

Sorry to hear it's been so rough for you Dennis.

How's your diet? Do eat high fiber foods like rice, etc? Are you taking a fiber supplement like Imodium? When you do go are you stools formed at all? Do you have control when you need to go? Are you exercising regularly?

Apologies for all the questions but your answers will help with giving you advice. Good luck and don't give up.

Xndman
Posts: 12
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Thu Jan 13, 2022 7:39 am

Hello everyone, I'm now approaching 8 months post ileostomy takedown. Thinking back on the last 14months, I had two open surgeries (8hours and 3 hours) and two hospital stays (11 days and 4 days). I'm in my early 50's and I guess I'm a little surprised how long it's taking me to get back to normal from an energy perspective. My energy is really good when I wake up but I still find myself having difficulty staying awake past 10 or so. But that said, I typically get up between 4 and 5. I have started working out again so hopefully that will help get some of my old energy back.

I go around 10x per day, but not due to an emergency, mainly out of convenience. The stolls are mixed from decently formed to more liquidity. I rarely us A&D these days so I consider that pretty good progress. If I go to an event that doesn't have bathroom facilities, I won't eat or drink because doing so typically makes me use the potty at least once or twice shortly thereafter. I have been out to eat a few times and I've just used the facilities at the restaurant/bar when needed. One thing that's interesting is that I've kept the weight I loss from surgery off. I wasn't really fat when I went in the first time but I was definitely overweight. I'm still down around 15% from that point and seem to have settled at my current weight without really watching what I eat or trying to lose any.

Anyway, that's my update. From all the horror stories I'd read prior to having the takedown surgery I consider myself really really lucky. I wouldn't call myself close to normal yet since I do still need to use the restroom after eating, but this is easily managed. My butt rarely hurts and I've been both back in the office and worked from home with no real issues. I hope that people going through this find my storying a little uplifting and I'm happy to answer any questions or give my thoughts.


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