Subtotal colectomy w/ileorectal anastomosis support...

Posted by bluehedgehog @bluehedgehog, Aug 11 6:51am

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!!

Interested in more discussions like this? Go to the Digestive Health group.

Hi @bluehedgehog and welcome to Mayo Clinic Connect.
You might benefit from the experience shared by members in other discussions who posted about subtotal colectomy, so I would like to invite them to the conversation.
@ellemorganhttps://connect.mayoclinic.org/comment/666834/
@nobletypehttps://connect.mayoclinic.org/comment/72874/
@bermuda56https://connect.mayoclinic.org/comment/160240/

And here is an NIH article with helpful information: "Currently, a total colectomy and ileorectal anastomosis are known to be more successful than a subtotal colectomy and ileo-sigmoid colon anastomosis [20]. Some remaining sigmoid colon can cause a recurrence of constipation, but anastomosis below 7-10 cm from the anal verge can produce diarrhea and fecal incontinence." — Surgical Outcomes after Total Colectomy with Ileorectal Anastomosis in Patients with Medically Intractable Slow Transit Constipation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180598/

It looks as though it has been just over a month. When did your doctor say you would start to see improvements?

REPLY

Hi bluehedgehog🙂
I hope you have seen your surgeon by now and have an answer to your
post-op problem, and are feeling better? I have read that sometimes with an anastomosis, a flap of tissue can sometimes cover the outlet and cause constipation again.

As a Mum to adult children myself, I'm sure your parents are more than happy to do anything and everything they can to help you get better.

I was drawn to your post as I'm on the waiting list for a total/sub colectomy.
I am 67 and have had terrible bowel problems since I was 32. Getting a proper dx has been very difficult as has getting a colonoscopy so I've had many misdiagnosis's. I changed surgeons about 3 years ago and a Bowel Transit Study I had last year has revealed an obstruction at the splenic flexure and a tortuous colon.

I know the constipation and bowel pain very well and have been in excruciating pain since the bowel transit study in June last year. This procedure meant no laxatives for 7 days and I'm sure the many extra loops I have in my bowel changed position due to the pressure of the build up of poop. Morphine is the only med that can mask my pain. I can no longer do jobs around my home and yard that require any bending.
For the past few years I've had to spend hours in the bathroom in the mornings, which leaves me in such pain and exhaustion, that I need to spend most afternoons in bed😩
You are not alone with horrible bowel troubles.
Kind regards
Anne

REPLY
@amandaa

Hi @bluehedgehog and welcome to Mayo Clinic Connect.
You might benefit from the experience shared by members in other discussions who posted about subtotal colectomy, so I would like to invite them to the conversation.
@ellemorganhttps://connect.mayoclinic.org/comment/666834/
@nobletypehttps://connect.mayoclinic.org/comment/72874/
@bermuda56https://connect.mayoclinic.org/comment/160240/

And here is an NIH article with helpful information: "Currently, a total colectomy and ileorectal anastomosis are known to be more successful than a subtotal colectomy and ileo-sigmoid colon anastomosis [20]. Some remaining sigmoid colon can cause a recurrence of constipation, but anastomosis below 7-10 cm from the anal verge can produce diarrhea and fecal incontinence." — Surgical Outcomes after Total Colectomy with Ileorectal Anastomosis in Patients with Medically Intractable Slow Transit Constipation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180598/

It looks as though it has been just over a month. When did your doctor say you would start to see improvements?

Jump to this post

Hi Amanda,
I'm new here and so pleased I found this forum although scared of the surgery I now need.
Thank you for the very informative links you posted in your reply to bluehedgehog.

Kind regards
Anne

REPLY
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