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!!