Anyone have a subtotal or total colectomy with ileorectal anastomy?
Hello! I'm trying hard to connect with other people who have had a subtotal colectomy with ileorectal anastomosis but it's so difficult to find other people who have had this same surgery.
I'm a 25 year old woman who had this surgery done on July 6th of this year. Recovery has been... harder than I thought it would be. I've had various surgeries in the past, but none of them have taken it out of me like this one has.
I'm having some weird problems that I'm not sure are normal or not after this surgery. For instance, I have days where I'm having liquidy BM's around 10+ times a day. Then there are days where I have to strain to get anything out.
It's so stressful. I had this surgery done for colonic inertia and I'm terrified of becoming constipated again. I'm currently taking stool softeners. When I wake up in the morning, it feels like I have the urge to "go", but nothing comes out. I have a ton of gas built-up in the mornings, too -- and unless I can get that gas out, then nothing will come out.
I avoid foods that are high in fiber, would probably cause gas, yada yada. I take gas-x everyday. I'm just exhausted. I know I'm still pretty early in the recovery stage (I think), but I'm sick of this.
I also have Ehlers-danlos Hypermobility type, POTs, endometriosis, bilateral carpal tunnel & cubital tunnel (that came back after surgery), and various mental health conditions. Dealing with those in addition to this has taken it's toll.
I'm constantly thirsty since the surgery, too. I always had a problem with thirst, but it's gotten even WORSE. I constantly feel like I need to be drinking something. I was drinking too much plain water before and my sodium dipped down to 120 -- so I'm only allowed to have 800 ml of plain water and the rest must contain electrolytes.
Due to all of my problems, I'm unable to work. All of these issues have been ongoing since I was a kid. I hate having to rely on my parents for things because I feel so guilty. I drink so many propel waters a day and I hate having to ask for them to buy me more. I feel like such a burden.
And even worse -- my birthday is coming up soon and I hate birthdays!! They just remind me that another year has gone by where I feel even worse than the last. 🙁 I just wish I could be a normal, independent person.
Anyway, sorry for the venting and the rant there. Please, if anyone has any support or advice for me, I would sincerely appreciate it. I'm a little late to replying at times, but I promise to read anything you write to me! Thank you!!
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Will love to know how are you doing now! I am supposed to have my colon removed and get my small intestine connected to my rectum (ileorectal anastomosis) all I ever find is negative experiences. People not been able to leave their homes because they go to the bathroom 10/15 times or more per day. I notice your post is from a while ago so would love to know how are you doing now. Did it get any better? Any feedback will be greatly appreciated and from any other person with this surgery .. I see my doctor again in August 6, 2025 to make my final decision. Hope you are well! And thanks so much
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1 ReactionHi, I hope you are well. I had a total colectomy with ileorectal anastomosis in July 2023. I can identify with everything you said about your colectomy. I spent3 weeks in a rehab getting used to walking around and eating regular food. Yes I remember frequent bowel movements day and night. I had to learn how to keep myself clean with all that stuff going out. I timed everything according to my gut. The first time I went somewhere over night was 6-8 months later. I couldn't trust this body to do expected things. I am now 2 years away from the surgery and can plan things so that my body doesn't hold me back. I do listen to it though. The reason I had this surgery was for a congenital malrotated colon.
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1 ReactionI'm sorry you are having so many issues. I have no experience with any of it as I'm just now working on curing BC. But on your digestion issues, just in case you haven't tried, on some similar digestion issues I had, I discovered my problems were substantially improved by making consumption of yogurt with active cultures a daily practice. If one brand doesn't work, try some others.
One suggestion on the cleaning issue, a bidet toilet seat. Look up Bidet King as a starting point, because they have many brands. I'm not a seller, just a happy owner. The brand we got 5 years age is Brondell. These are semiautomatic seats that replace your standard seat. They start at several hundred to over one thousand.
Or you can get a Bidet for $48! I broke my arm so my son got me one. Your existing toilet seat fits over it. Connect the water line and you are good to go!