Rectal Pain After Reversal: Seeking Similar Stories

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latina63

I had a temporary ileo in 2011 for 11 months due to a carcinoid tumor in my rectum. I had a Lower Anterior Resection with Meso Excision (lymph nodes removed). I have been reconnected for 5 months and overall things are doing well.
I would like to hear from others who have had this type of surgery and still have your rectum and colon. I have pain sometimes and pressure, like the feeling of something down there. I understand that it has to restretch as my rectum is shorter now. It comes and goes and is definitely getting better, but I would love to hear similar stories.

jodelin

I was reversed on 22nd and still fresh so I don't know if I have much to offer. But maybe we can help each other out.
I am missing a foot of my colon and 5 ft of my small intestine. Everything else is left, radiation damage due to tumor low in colon (higher part of rectal tissue).
I have not been eating much but kind of feel like I have a blockage except I am still going to the bathroom very often so it is probably pain of food going through my colon and getting used to it. Did you have that feeling? Or maybe I have a partial blockage.
Eating some toast but that seems so dry, cream of wheat, crackers with cheese, and some potatoes and some mac and cheese. And water and Gatorade.
My incision hurt like crazy until today. I am very swollen.
Wearing Depends and using Calmoseptine for the sore booty.
Hope all goes well for you. And, hope your pain subsides.
Thanks for sharing.

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latina63
Wow! Sorry it took me so long to get back. I go next week for an EUS test, kinda like a colonoscopy but they don't go the whole length of the colon and it has an ultrasound on the end of the scope, kinda high tech stuff. The doctor wants to check everything and see if I have any scar tissue. Bowel movements are not as frequent anymore and the pain has subsided so much! My booty still hurts occasionally, I can't sit for long periods of time cause it starts to ache. I still get the dumping syndrome but not nearly as often, maybe 2 times a month. It has now been 7 months since my reversal and 18 months since my LAR surgery. Good luck and hope you are doing well.
Nora
latina63

Oh, and I am able to eat most of everything now, and I LOVE Calmoseptine! That helps my booty so much. The digestive system is so sensitive, and it takes a long time to wake up and function normally. Hopefully, that helps a bit.

jodelin

How long did it take to quit having accidents and be able to use that muscle successfully?
I am still having accidents and I am about a week and a half out from surgery. I was trying to strengthen the muscle but now it is very painful. Calmoseptine and hemorrhoid cream.
And, were you able to obtain the success of controlling your bowels by using fiber supplement or Imodium? I don't use either - dr wants me to try for 2 weeks to control by diet first.
And, when does the swelling in the tummy subside?

I have lots of questions, don't I? I am so happy to be reversed but I am very anxious to get back to a normal life where I can go where I want and wear what I want.

 
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latina63

Well, that all depends on how much rectum/colon they had to cut out. Frankly, I never had any accidents. They took about 3" of my rectum and 7" of my sigmoid colon for a total of 10". For the first month, I had to go a lot but I could hold it without an accident pretty good.
NOW, for the frank truth...it takes a long time for the colon/bowels to heal up and function properly. My doctor told me it could take up to 18-2 years before everything stretches out and the colon learns to function properly.
I will liken it to your arm, say for example it was tied to your side for 1 year and then untied again...it would take your arm a while before it learned to function properly...well, our insides are a lot worse.
The problem I have most now after 8 months is the pain in my rectum itself and the dumping syndrome which happens only about twice a month. It used to be every day but now it is down to twice a month and eventually it will totally go away.
By dumping, I mean my colon will have spasms and completely empty out (sore butt for sure). It used to take about 30 minutes but now it is down to about 15 minutes and it ALL comes out!
I am finding that Metamucil every day helps to regulate if you can stand the gas for the first few days.
As far as the swelling, it took me about 1 month before my tummy was down.
Unfortunately, with any surgery on the bowels, you have to be patient. I made myself so sick with stress trying to speed things up. When I finally stopped worrying about it and let my body do the healing, I started to heal. Everybody is different though...good luck with everything and keep the questions coming!!
Nora

jodelin

I am missing 3 cm of rectum and 9 inches of sigmoid colon. I was diverted for 16 months.
I am 4 weeks and 3 days out from surgery and still having accidents!! Very frustrating.
I do pretty good when I get the Metamucil dosage right. But, I just recently changed from powder to capsule form so had to adjust for a couple days. Back to accidents.
I use Imodium a lot. More than what the bottle says to use.
It seems like anything with the intestines takes forever to heal.
And, I think you are right, the more I want to push healing, the more frustrated I get and it seems to delay the process.
I am hoping the Metamucil will put an end to the accidents. I have been exercising the muscle like crazy and it seems to be getting better.
The swelling kind of baffles me. I am still kind of swollen, but I suppose until the bowels are no longer irritated, they will be swollen.

Thank you for all your answers. They helped a lot. I am a bit concerned that I am still having accidents. I thought it was kind of normal, but apparently not.
Will check in once I have been on Metamucil for a while.

latina63

I lived on Imodium and crackers for the first 3 months! Now, by you saying "diverted," I take it you had an ileostomy for 16 months. That might be the reason why you are having accidents. I had mine for 11 months. It might be taking your colon a little longer to adjust. By me saying I had no accidents does not mean I didn't have to go! It just took me longer to recover from my second surgery as they had to repair 3 hernias and they also checked my liver, so I had to be cut open again. They had to cut higher for the liver, so it was very painful.
So, by saying all that, I meant that I was real close to the bathroom for the first 2 months!
Now, if I can just stop the swing (hard to soft) and the cluster (never get it all out in one sitting) bowel movements, I would be so happy!
But the pain does seem to be getting a little better, so I will be thankful..
Nora

PS Peanut butter and banana sandwiches really helped my loose BM's, just a thought if you like that sort of thing.

jodelin

Latina63
Sounds like you have had a lot going on. The second surgery, liver issues.....
They did have to do a few things to enable me to be able to have the ileostomy take down.
I had that anastomotic leak which wouldn't heal. What finally helped it heal was a flap surgery. They took half of my stomach muscle and wound it through my pelvic area and around my colon where the original resection took place. They had cut open the pouch created by the leak and cleaned it out and wove the muscle through that opening and sewed to colon.
Healed up the leak.
I am now over 5 weeks out and still having accidents. Hoping time improves that.
Do the exercises mentioned on the Ostomy of America site - basically really strong kegel exercises. But, still not strong enough muscle control yet. It is amazing how quickly your body gets used to not functioning properly.
I have a question about fiber.
When I was taking two Metamucil 3 times a day I had fairly firm stools in the a.m. but not the rest of the day. Then, without any changes they loosened up and no longer had firm ones in the morning. Just fairly formed ones. Diet wasn't changed.
Upped my dosage to 3 pills, 3 times a day. No change. I use a lot of Imodium to control the stools. Probably double what it calls for on the jar. But otherwise I am in pain from going to the bathroom ALL the time and I spend all day in the bathroom.
I wish you the best or anyone that reads this.
Any ideas are greatly appreciated.