Struggling with Ileostomy Reversal Recovery - Need Advice

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tudibird
Mar 29, 2014 2:16 am
Hi all. Been a while since I've posted. On March 4th, I finally went in for my reversal. Since that time, I've been incredibly sick. I've lost 10 lbs. My nausea has been the worst ever, and I've got constant abdominal pain (not surgical pain but gut pain). To top it off, unlike most who undergo a reversal and suffer from diarrhea, I am incredibly constipated and unable to go. I was just hospitalized again for extreme dehydration and vomiting. I have no desire to eat or drink for that matter. I'm trying to force myself to get something in each day for fear I'll end up back in the hospital. I would love to hear from anyone who has undergone a reversal and share their recovery story. Is this normal? Should I be so sick? I'm lucky if I make it out of bed for one hour each day. My husband says if I don't start to take in more food and/or fluid, he's going to have to take me back to the hospital. He's been incredibly supportive, but this has been very hard for him watching me cry each day, unable to eat and drink. Any words of wisdom are greatly appreciated. Thanks so much.
betrdanevr
Mar 29, 2014 4:53 am
Hi, Tudibird,

I'm new around here, and I haven't had a reversal yet, but I can relate to the dehydration and vomiting. I'm sorry to hear you're in such discomfort and hope your doctor can do something for you!

In the meantime, you may have to force yourself, but do get hydrated. I forget sometimes that water even exists! (But thank God I don't drink colas any longer.)

I was having my first ever migraine headaches, nausea included, a few months back, and I read something someone posted here (I'm sorry, I forget who!) that led me to believe dehydration was the culprit!

It's funny how it works, we feel too bad (or are disinterested) in doing what we need to do sometimes. At least that's my experience. Put it that way.

Do you think you could tolerate Gatorade?
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tudibird
Mar 29, 2014 4:23 pm

I've managed to drink half a Gatorade each day and like you said, I must force myself. I'm trying to force myself to eat at least something small each day. It's been very hard. I was wondering if all my abdominal pain isn't a direct result of the fact that my body is starving. I see my GI doctor on Monday. Hopefully, he has some solutions for me. Thanks for writing.

SigmoidFreud
Mar 30, 2014 2:33 am

May I ask? Why did you have the reversal only 4+ months after the initial surgery? I'm no expert but always thought you were supposed to wait a bit longer.

I'm finally decided to go for a reversal... but it's been 3.5 years.

Good luck and feel better.

Primeboy
Mar 31, 2014 3:16 am

I waited over 4 months for my reversal, which was 10 years ago. The reversal was very successful, and I was playing golf within a few weeks without any complications. Unfortunately, 6 years later, precancerous cells spoiled the fun. I think the success of my surgery was due to a very skillful and meticulous surgeon. So, my advice is to see another colorectal surgeon since things are not improving. You should not be going through this turmoil with such uncertainty.

 

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latina63
Apr 01, 2014 6:07 am
Hello
Well, first of all, everyone is different and it depends on: how long you had the bag - do you still have your colon or part of it - are you connected to the small intestine or large intestine - do you have a J pouch, etc.

I had about 4" of my rectum removed and 7" of my sigmoid. I wore an ileostomy for 11 months. I had a successful reversal on October 15, 2012. Although I am doing much better, it has not been an easy road. Do I regret getting the reversal? No! It is worth every pain to be normal. It definitely is a gradual recovery and you need a lot of patience for sure. I lost a lot of weight in the beginning due to no appetite and depression from everything. It is a delicate balance of diet. For me, it is fiber and lots of it! I also take Miralax every day (recommendation of my gastro doctor). Hopefully, you will start to feel better soon, but just remember, our guts will not be rushed.
mollymoo
Feb 05, 2015 2:01 pm

Hello Primeboy - would you mind telling me who your surgeon was? I am desperately looking for one for a referral for a second opinion. Best wishes.

Primeboy
Feb 05, 2015 7:01 pm

Hi Molly. Check your Ostomates inbox.

PB

betrdanevr
Jul 25, 2015 4:11 am

Hi, Tudibird. Checking in to see how you are doing.

Terri

Imkimba2
Jul 28, 2020 2:26 pm

Tudibird, desperate to see if you ever found any answers. I've been dealing with this exact thing for two years, and I am absolutely miserable.