New food sensitivity after surgery / reversal

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Joined: 2020-01-10 10:59:10

New food sensitivity after surgery / reversal

Post by mlh23 »

I thought I would share my reversal story as it might help someone else as I haven't come across a similar story yet.

I had a colostomy for 6 months and then an ileostomy for 5 months as well as a sigmoid colon resection (12 inches) due to diverticulitis. Like most describe, my recovery to anything resembling "normal" bowel movements was very slow - 2 steps forward and then 1 step back.

Steps I took that helped included:

- Reducing insoluble fibre (especially anything raw) including whole wheat products
- Introducing soluble fibre in daily in the form of metamucil
- Limiting coffee to one a day

However, by last October, I still wasn't where I wanted to be. I was averaging around 3 bowel movements a day and still had clustering issues almost every day. And everyone once in a while I would have a really "bad" day where I was running to the washroom every hour or two.

I noticed a pattern (which I first ignored) - every bad day was preceded by me eating pasta. I ignored this because it didn't make sense - pasta was something that was supposed to be easy for my system handle.

After a really bad day (after eating pasta the night before) I wondered if gluten could be the issue. I hadn't had a gluten sensitivity before my surgeries but decided to try eliminating gluten completely from my diet. And the results have been astounding.

No more clustering, no more bad days and am having a bowel movement 1 to 2 times a day. It has been a few months and it is still working.

I looked at the medical literature and could find nothing about gluten sensitivity after colon surgery or reversals so decided to share my story here. I realize my case may be unique but even if one person benefits, that would be a good outcome.

- August 2017 Perforated Bowel, Colostomy, nephrostomy tube
- January 2018 Bowel resection, hysterectomy, ureter re-attachment, ileostomy
- June 2018 ileostomy reversal
- September 2018 ueteroscopy for scar tissue
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Joined: 2020-02-12 20:35:42

Re: New food sensitivity after surgery / reversal

Post by Kalehue »

Goodness, your story certainly resonated with me. I am only on day six after my reversal and feel I don't have a lot of room to complain after reading about so many who have suffered for much, much longer than I have, but I am very impatient. ;) I set aside one week for my recovery from the reversal surgery (haha) thinking that it should be a walk in the park compared to what I've already been through. Mostly, I'm realizing that my "walk in the park" will likely be as you describe -- two steps forward and one step back.

Before my emergency bowel resection (diverticulitis -- perforated colon with formation of three abscesses), I followed a paleo diet. With the ileostomy, I was told I would have to eat food that was more easily digested and, of course, I would have to avoid nuts (the mainstay of my diet before my bowel resection) with the diverticulitis once the ileostomy was reversed. I lost 26 pounds in 22 days and had a very high output ileostomy. I ended up being hospitalized several times because of dehydration and electrolyte imbalances. I learned to eat white bread, white rice, and pasta all over again - and pasta became one of my stand-by meals. Before going into the hospital, I prepared one of my favorite meals - pasta with Italian sausage and a wonderful tomato-vegetable sauce - so it would be waiting for me when I got home.

I found this wonderful online resource yesterday as I was trying to find something -- anything -- that would guide me as I move ahead after surgery. I have had bouts of diarrhea without any warning (incontinence) followed by a short period of "normalcy" (a whole 6 hours!), formed stool, then more diarrhea -- with no rhyme or reason. I could probably even manage the diarrhea better if I knew it was coming, but I have no warning until it's too late. Other than taking 1/2 tsp. twice a day of Metamucil, my surgeon has not given me much guidance. His only response is, "It's better than the bag!" As my husband and I have mopped up messes a time or two, I wasn't sure I agreed!

After reading through various postings on reversal last night, I put myself on a low residue diet this morning hoping to have a little more control over my bowels. I started the day out with Cream of Wheat and for yummy pasta. I have been eating it for the past three days. To be fair, I did not have a gluten-sensitivity before and was on a paleo diet just to avoid processed foods, so I wasn't even that strict about it (would occasionally eat chicken piccata or something I knew used a bit of flour in preparation). I'm waiting to see how things go this evening and am wondering if the pasta/gluten might be the issue. It's something I hadn't considered. I will say that addition of the Metamucil has helped. My colon-rectal surgeon wants me to go slowly with it, so I will increase it according to his recommendations, but I will also watch to see if the gluten might be an issue. Thankfully, I am not a coffee-drinker.

I have honestly been very lucky compared to some of the stories I've read on here, so I am not complaining (okay, maybe a little). But I am willing to do whatever it takes to at least come up with a semi-normal/more predictable pattern!

-- First bout of diverticulitis in August, 2019, treated with IV medication in hospital x 5 days
-- Second bout of diverticulitis in November, 2019, treated with IV medication in hospital -- perforated colon at some point during treatment and developed 3 abscesses
-- Emergency bowel resection w/temporary ileostomy - November 7, 2019
-- Reversal of ileostomy - February 6, 2020
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Joined: 2020-05-12 13:27:59

Re: New food sensitivity after surgery / reversal

Post by Tom58 »

Wow your story and how things happened is crazy. You and I have a lot of the same systems, but the difference is i had my reversal in Nov 2019. I had rectal cancer and they remove 90 percent of my rectum only enough for reconnection. My was 6 months and even thou it's still not 100 percent predictable. It's much better than the first few weeks. Remember this is a long process. You will as you know have a new normal, my doctor at MD Anderson told me that it could take a year or more to develop this New normal.
I can eat almost anything as long is not fried, I can only have a few bites, small McDonald fries (only eat half) and I'm fine, any more than that it sends me to toilet with diarrhea very quickly.

Bowel moments. My somewhat normal is, will have small amount for 1st hour, 2” here and there. Then the wave of solid stool comes that seems will fill the toilet, a lot. This usually happen 2 times after the first hour session of little 2” bits. After the two waves I will have one more session about 5 to 10 mins later which is normally diarrhea. Then it's finished for two days.
All sound perfect right, there is a lot of pain from burning, I have learned it's associated with stomach acids, normal stuff. But since we are not normal we need to intake less acidic foods this helps me. In this 1st hour it can be difficult as you mention to get thinks to fully drop out, it stuck which causes burning and inflammation to my spinster muscle. That in turn causes swelling, very painful even to pass gas. Hot showers helps.
Last week I went to the toilet 3 times all week had 3 complete fill the bottom of the toilet bowel movements with NO diarrhea, pain felt it coming as I normally do then the world or ass opened up and Everything was expelled, every thing and no diarrhea
This made me sing, I'm normal. Then the weekend came and on Sunday it went back the other way. But it all had to do with diet, lots of starchy foods, vegetables (chew good) all good add grease food you have issues.
I feel the new normal is still some time away but it getting closer.
Have faith and don't let it get you down it could be worse.
Thanks tom58
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Joined: 2020-11-07 09:00:15

Re: New food sensitivity after surgery / reversal

Post by _Lily »

Thanks for sharing your story as mine is similar. I’ve been searching for months now and finally got the right word combination to have come upon your post.

Gluten is in everything I love! Now I just have to have the will power to avoid it as it is definitely the culprit of my GI distress :(

My reversal was back in April and went somewhat smoothly for awhile. I was eating many of my favorite foods until I started to get very loose 😯. A painful and frustrating trial and error method led me to the conclusion that I am now sensitive to gluten. I have also been led to think that any fiddling with the intestines lead to all sorts of new and exciting GI adventures.
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