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Surgery Decision for dismotility: Subtotal colectomy with ileorectal anastomosis

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Posted 11/17/2016 2:21 AM (GMT 0)
Need help deciding whether or not to do the surgery.
Hi, I am so happy I found this forum, I have read almost all ofnit but I am still going back and forth deciding on whether or not to go ahead with a subtotal colectomy with ileorectal anastomosis.

I am 39 years old and have had constipation my whole life. I had to have suppositories every day as a child and routine enemas. Now if I am either constipated or have diarrhea. When I am constipated it is up to 10 days. When I have diarrhea it is relieving so I tend to make Sure that I do.

Daily I take: 2 x Miralax, 2 x resotran (prescription drug - 2x recommended dose), 2 x Metamucil, 2-4 senokot and lots of water. I don't know what the long term affects of all these drugs are on the system.

I've had every test.
- Had 24 of the markers left after 5 days,
- Defectogram shows prolapsed rectum
- ultrasounds show endometriosis on rectum and adhesions on bowels and colon,
- Colonoscopies cannot be done anymore as they cannot get the tube through;
- I have no obstructions or other diseases of the bowel other than IBS and motility issues
- Endoscopy shows significant GERD damage

I am scared of:
- not being able to hold myself in (I swim daily and life would not be the same if i could no longer do that because of accidents)
- gaining weight (I have fibromyalgia and the best way for me to stay as pain free as possible is to keep the weight off, as soon as I gain a little I feel it)
- going to the bathroom 15 times a day and always needing to be close to a washroom.
- being in more pain afterwards than I am now.
- waking up with a bag
- can you still have a flat belly afterwards (this is my superficial part, sorry 😃)
- Estimated life span being reduced, I wanna live a long time.

What are your thoughts, is it better to:
1) be constipated, distended and bloated. Take a lot of laxatives and 2 x max dose of prescription meds since we don't know the long term affects, having stool stay inside (is that toxic?)
2) Surgery

And, I am concerned about whether it changes your life expectancy.

I am not worried about the surgery itself, I have had an open radical hysterectomy, intrauterine fibroid surgery (open again), 2 x endometriosis surgeries, 2 x D&C (lost baby 1 at 2.5 months and baby 2 at 3.5 months) and have always livwd through it.

I would love to hear your thoughts. I want to improve my life so I am so scared of tsking the wrong decision. And the fact alone that there is a decision is scary - am I just complaining for nothing? Should I suck it up? Or should I do this and embrace a new life?

I'd love to hear from swimmers too 😃

Thank you soooo much!!!
Posted 11/17/2016 5:21 PM (GMT 0)
Ultimately, look at your quality of life. That is what made my decision for me with my Ulcerative Colitis to get a J Pouch. All meds failed me after 16 years of fighting the disease. My quality of life was terrible. I was having accidents non stop and was a prisoner to my home. I couldn't simply leave to do anything I enjoyed. Even a quick trip to the grocery store was a nightmare. I wore diapers 24/7. There are no certainties with surgery, you can go back and forth all day saying "what if" this happens or "what if" that happens. I had a host of complications following surgery with infected abscesses, blood clots, a leak in my J-Pouch which caused the abscesses and required open surgery again to fix it. After all is said and done, I took the chance to get my life back and that's exactly what I have. Am I perfect, no. I deal with a little bit of pouchitis which isn't terrible for me, it's more of a nuisance but it's something for me to deal with. I've gained back all my weight I lost during my surgeries (40lbs). I'm able to control my bowel movements but do have occasional leaks while I sleep. I've been through the dreaded butt burn and still get it every so often. I go to the bathroom 4-7 times a day and I really just empty my pouch when I urinate. Get as much information as you can. See multiple surgeons who are very skilled in this procedure. The ostomy wasn't terrible when I had it, it just wasn't for me but could live with it fine if I had to. Everyone is going to be different, some have smooth sailing with this procedure, others it's a nightmare. There is just no way of telling the outcome. I know for me, it was the right and only choice for me and I'm happy with my decision as I now have my life and freedom back.
Posted 11/17/2016 6:17 PM (GMT 0)
For me it was also about quality of life. I have an ileostomy not pouch.

I swim and exercise with no problem.

As far as your condition I don't know much about that however, I would think that you would potentially have a longer life span with surgery than your current condition. Constipation is known for being related to a host of diseases bc you are not eliminating efficiently and toxins are reabsorbed by the body instead of leaving the body. Personally I would be very concerned about only going every 10 days.

There are several people on this board and through my support group that have had a jpouch for several years or an ostomy for several decades.
Posted 1/13/2017 3:19 AM (GMT 0)
I was happy to see someone with a few similar issues also question the idea of such a surgery. I am quite a lot older than you but I have had a lot of the same issues since childhood and will tell you it only gets worse. I'm not a swimmer, but I do enjoy daily workouts and was concerned about being able to be active, the appearance and all the typical questions. I have had tons of tests, in fact tomorrow is the last day of the sitz marker test so having not gone to the bathroom for over 10 days... I'm miserable! --> a bit grouchy, mushy brain, hurting and frustrated too! I'm reminded of being told how having an ostomy certainly wouldn't be worse than going this all the time. It was also eye-opening for me to hear how my chances of ending up with colorectal cancer if I continued with the chronic constipation. Thanks for starting the conversation and know that I wish you the very best. Keep me posted... maybe we can exchange notes on the next (post-surgery) chapter!

Vicki
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