Digestion Pain After Total Colectomy

Posted by future2025 @future2025, May 2 11:24pm

I had a total colectomy with ileorectal anastomosis to treat colon cancer 7 weeks ago. Fortunately, no chemo or other treatments are needed besides the surgery. As of now, all the direct surgery issues (incisions, etc) are healed just fine. But, I'm struggling with resuming a normal-ish diet, which causes a lot of pain and discomfort. I'm still on 1000mg tylenol 3x a day and I've started a muscle relaxer at night, which has helped a lot. Also Gasx and Pantoprazole.

But even with all that, I still range from uncomfortable on good days/moments to significant intestinal pain. One day was so bad I couldn't do anything all day but lie on one side of my body without moving. So much as turning over or sitting up was intolerable. That's when my Dr added the muscle relaxer, which helped, and nothing has been that extreme since. And I've tried to go even slower about adding fiber back into my diet. But my abdomen is still quite sensitive- to the point that I still can't wear my normal pants for more than a few hours (even after losing 15lbs in this process). Pajama bottoms and loose gym pants that don't apply pressure on my abdomen only.

This last week, the Dr recommended I try slowly adding metamucil for fiber, starting with just 1/4tsp. I tried but only drank half of it before getting sharp, painful cramps. I haven't touched it since. I'm currently getting ~10-15g of fiber/day.

Is this normal? What have others' experiences been diet-wise after total colectomy?

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Colleen Young, Connect Director | @colleenyoung | May 15 9:37pm

I'm tagging a few members who have experience with a total colectomy like @rjjacobsen @stanley23 @forcv @bevjoy @mkgdesigner and others.

@future2025, how is recovery going? Has some of the pain been reduced with time? Has adding fiber helped?

future2025 | @future2025 | May 16 5:53am

I haven't been very successful in adding fiber. Now in the 15-20g/day range. And only simple fibers. No fruit/veggie skins, oats, legumes, etc. Eating those cause issues.

The pain has gotten notably better, though. Oddly, I drank my first beer in months. Sounds ridiculous, but it really seemed to help. Just one beer. Had another one a few days later, and I improved again. There are some studies looking at the pre/pro- biotic aspects of beer. Maybe that was it? But since then, I was able to stop Tylenol and the muscle relaxer. I've also stopped the Pantoprazole, though that is likely separate.

I am still struggling with the return to a normal diet, though. It would be nice to hear others' experiences on all this.

lisag03 | @lisag03 | May 16 8:26am

I didn’t have a complete colectomy, but two partials with two anastomosis. It took a long time for things to get back to normal. I take a strong probiotic ans use digestive enzymes (MassEnzymes) with meals. I lived on ready made protein shakes for awhile. My abdomen was sore for a long time (partially related to other issues). Sometimes the only thing that helped me was laying on my right side. That’s always where the pain seems to come from. You are still so early in, so it will get better

bevjoy | @bevjoy | May 16 9:13am

It will 2 yrs in Aug that I had a the same surgery (TC-IRA). Metamucil made me sick and stopped that after several months. I have pain only when I eat too much at one time, or have a gassy meal. My recovery was good. But, to get my daily fiber, I eat all-bran with greek yogurt, blueberries, a little bit of banana, a few canned peaches, and 1% milk (all mixed together to make it soup like). I have this for breakfast and before bed. It really helps and is delicious. I don't have a gallbladder either, so I eat small my meals and snack every few hours. I have an occasional beer and it hasn't bothered me. I used to drink white wine, but can't tolerate it anymore. I'll have a small glass of red if I feel like something with dinner.
I do have a sigmoidoscopy, upper endoscopy, and a CT of abdomen and pelvis each yr to monitor since I have MAP (mutyh-associated polyposis) and still high risk.
I have limited internet access currently, but am happy to compare notes when I can. Wishing you well.

rjjacobsen | @rjjacobsen | May 16 12:12pm

In reply to @colleenyoung "I'm tagging a few members who have experience with a total colectomy like @rjjacobsen @stanley23 @forcv..." + (show)

My experience, now 51 months post colectomy:

7 months after surgery, I was having trouble with digestion - had to eat smaller meals/more frequently. I looked for things that were easy to digest. Had to push fluids even though I hated to because of the loose stools. Note: I was still doing chemo at the time, so it's hard to isolate the impact of the chemo vs. the recovery from surgery.

Metamucil or equivalent (as a slurry with minimal water) was helpful to tighten the runny stools, but wasn't helpful with any gastric pain/discomfort and may have worsened it (constipation) if I took too much. It had the side effect of severely foul-smelling flatulence, so I stopped it.

I've found some foods can cause such pain even now - I have difficulty with some, but not all fats - heavier, plant-based fats seem to be the worst for me. Lots of cheese and spicy things in excess cause issues too. And no more all-you-can-eat buffets! Very tight limits of chocolate as well (sorry).

I do have difficulty staying hydrated even now, so that's something to look into.

Hope that helps.

All the best.

future2025 | @future2025 | May 17 8:44am

Thanks all for your responses. I guess my experience sounds fairly normal. The pain so bad I couldn't move had me very concerned (even though the Dr wasn't). But sounds fairly par for the course, it seems. And looks like I have a long time before I get back to anything like a normal diet (if achieving that is even possible).

Thanks for sharing.