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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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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.
@ellemorgan - https://connect.mayoclinic.org/comment/666834/
@nobletype - https://connect.mayoclinic.org/comment/72874/
@bermuda56 - https://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?
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4 ReactionsHi 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
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2 ReactionsHi 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
Hi and thank you @bluehedgehog @annewithane and @amandaa
It is really comforting, helpful and also scary to have found this. I have been wondering and searching for people who have had the same operation as I am told is my only option. I wonder how you feel now @bluehedgehog ? I hope better?
What did you do @annewithane ?
I have slow transit constipation from colonic inertia and a rectal prolapse when i poop. I am completely dependant in stimulant laxatives since the surgeon told me to take them daily over a year ago. Its painful and I take them at night so I can contain my Diarrhoea and pain to the night and morning so I can work. But I ve run out of energy. I ve not had a social or normal life for years and have found it easier to eat virtually nothing to decrease the pain and effort to rid it.
It is suggested I have a Subtotal colectomy with ileal to distal sigmoid anastomosis following a rectopexy.
I am extremely scared of a future where I am incontinent -, still constipated minus an organ or needing an ileostomy. I went to an ostomy support group last week and the ostomy nurses seemed pretty sure that incontinence would be highly likely and having heaps of bowel movements each day and that needing an ileostomy later is very plausible and likely.
I guess Im hoping to find people who have had this operation and are living a free and normal life thats not centred around diet and toileting and laxatives and supplements. Anyone?
I wonder what is happening research and treatment wise for this world wide. Im also hoping that some crazy scientist genius with an underground lab and a holistic health wire is figuring out some alternate solutions / treatments. 😂 And a big part of me hopes that others have healed naturally or otherwise creatively from this. I definitely believe trauma plays a big role here. and I know the our bodies minds and spirits have the potential to heal and do unimaginable things. I am running out of energy faster and harder now though and so by default leaning towards the operation. This also makes me very uncomfortable. I would appreciate other peoples experiences and knowledge concerning this topic so much ♥
Thank you and
Kind Regards
Michele
Hello all!
I was born at 25 weeks (a premie) and had NEC in 2001. As a result, I had a total colectomy with ileorectal anastomosis. I am 22 now and was wondering if anyone else has had a similar situation or the same surgery. I am struggling to understand my body's reaction to different foods to help regulate my system to the best it can (less air). Does anyone have any experience with this surgery and can relate? I would love to just chat with someone so I feel less alone!
Welcome @madso25. To help you connect with other members, I moved your post to this existing discussion:
- Anyone else have a subtotal or total colectomy with ileorectal anastomosis? https://connect.mayoclinic.org/discussion/subtotal-colectomy-wileorectal-anastomosis-support/
In this discussion, you'll meet @bluehedgehog and @annewithane. I'm also tagging @ellemorgan @nobletype @bermuda56 @bevjoy @grammam @rjmobe, who have experience with a total colectomy and ileorectal anastomosis.
I've also added the discussion to the Ostomy support group as well to bring in fellow ostomates https://connect.mayoclinic.org/group/ostomy/
I understand you have necrotizing enterocolitis (NEC) at birth, which necessitated the colectomy and ileorectal anastomosis, correct?
What foods work well for you? By less air, do you mean searching for foods that produce less gas?
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1 ReactionHey! Thank you for the reply! Yes, so the NEC caused the reasoning for the ileorectal anastomosis. I am looking into getting a nutritionist to understand my body better but have had a hard time finding one that would recognize a case like this, but i will keep looking. Yes in saying less air, I mean foods that produce less gas. Thank you for connecting me with people of the same surgery, there aren't many, but I am glad to see some! Thanks!
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2 ReactionsHello @madso25
I see from your posts that you are looking for the best foods to deal with your digestive tract issues. I would recommend that you ask your doctor for a referral to a registered dietician. Most large hospital systems have dieticians on staff, and they are great for helping people find the best foods to eat.
While I don't have the same disorder you do, I've had three surgeries of the upper digestive tract and have met with dieticians several times with very good results. Your PCP or your GI doctor should be able to help you get a referral.