Wait for reversal??

[janeindeed]

I had an ileostomy placed after a resection of 10cm of my ileum/ileocecal valve/a tiny part of my cecum in March. The surgeon said I would be ready for reversal in about 6 months, which is around now. I have changed surgeons due to insurance and the new surgeon said that I should try to loose about 25 lbs before I have surgery (December is what we discussed). I am having a lot of trouble losing weight and have actually gained some since I last saw him. I really don't mind the stoma and don't miss diarrhea at all! I'm considering waiting to have the surgery until I lose some of my belly fat-- I really don't want to go into surgery with extra risk factors. I have had a ton of weight fluctuation in the past 2 years. I went from 265 to 165 in 6 months because of a bad flare and then back up to 200 because of high dose steroids, then down to 180 when I had surgery and now I'm around 225 because I can actually eat things I enjoy again. I have started working out, but am having trouble being satisfied with healthy foods that are not high in fiber. Most fibrous foods give me a lot of stoma irritation. I have an appointment to get a referral to a dietitian, but may be a month before I actually get an appointment there.

I really want to know if anyone has voluntarily postponed reversal for any reason. I can't find anything like that on the internet and I just want to know a little of what to expect when I bring it up to my surgeon.

 

[2thFairy]

I was given the okay for reversal almost 6 months ago and have elected to keep the stoma instead. I plan to keep it long term for now. If I start having complications of some sort, I suppose I will do it then, but for now I am quite happy this way. Like you, I don't like the idea of starting over with diarrhea, food restrictions, postponing events, etc. after reversal.

 

[janeindeed]

Thanks, I was starting to think I was crazy for wanting to keep it. I work in a hospital as a secretary on a surgical floor and I see so many people with horrible complications after reversals. I want to have the lowest possible number of risk factors going into such a major surgery electively.

 

[Terriernut]

I think there are plenty of people who postpone reversals. Toothfairy is one, and she could have a j pouch done as she has UC.

I do think you should be in good health of course before undergoing anything but emergency surgery. And most of us do understand the weight gain after getting stomas, because...OMG! we can EAT! :yfaint:

The weight loss before surgery is a good idea, but if you decide you want to keep your stoma...nothing wrong with that!

 

[2thFairy]

Yep. I have a J-pouch ready to go, but not using it. I wonder if it feels neglected that I have shown Bob such favoritism?

Oh well...

 

[2thFairy]

I should also add that my GI told me of another patient, a doctor, who also has a temp ileostomy with J-pouch but has chosen to keep the stoma, going on 3 years now.

 

[janeindeed]

This is all very encouraging to hear. I'm having such an excellent time living life these days that the thought of trading the stoma in for possible infection and incontinence is SO unappealing!

 

[Samboi]

What complications have you seen post reversal?
I'm meant to have mine at the end of the year - so want to be fully informed about what might go wrong as well as right.

 

[SusanB]

Yes Samboi, I would like to know the same thing. What does happen , if anything, post op.
Anybody?
count down is on for me ... 14 days (scared)

 

[janeindeed]

I have seen several people on the floor that I work on come back time and time again with infections and abscesses post-op. Most had to have their ostomy replaced. I'm sure this is a small percentage of people who have reversals. There is one lady who has UC who had her ostomy placed last December, came to have it reversed in July and I have seen her readmitted at least 3 times since then. I think she has had surgery 5 times. I don't want to scare you, but I certainly have been scared.

I talked to my surgeon and the plan right now is for me to wait until December of 2013 to get my reversal. I saw my PCP for help with weight loss. He gave me a script for Adipex and it is working really well to help me keep my portion sizes small. I am feeling very satisfied on about 1200 calories a day. I'm struggling a little bit to stay hydrated, but it's an adjustment period. I have lost about 10 lbs so far.

 

[highlandsrock]

Hello All

Here's my experience - I had the reversal (Jun.11) 8 months after my ileostomy (Oct. 10). (It should have been 6 months but my platelets were too low. A problem we are only just starting to understand).

After the reversal I was on a three month course of antibiotics (Metronidazole 400mg) as my consultant has found it helps recovery and prevention of infection. The only downside was no alcohol and my taste buds were shot. They recovered once I stopped taking the tablets. I took it fairly easy after the op but it wasn't long before I could get back to driving and returned to work.

Since the reversal I have kept taking Loperamide (2 capsules/day) as I find it helps regulate my digestive system. My surgeon said that some patients do end up taking it long term and that's OK. I'm not on any Crohn's medication. I've had a couple of colonoscopies which have shown no inflammation and I was given a Rutgeert's Score of i0.

The only problem I have really had is a bit of aching in the area of the reversal scar and wearing a tight belt seems to make it worse. It's only a mild ache but I'm wondering if there may be some adhesions in there. Will ask my consultant next time I see him.

I hope the above shows you what a positive experience the reversal can be. It's great being able to sleep lying on your tummy and not having to explain some of the strange, involuntary noises that your stoma can make!

(I did however end being rushed into A&E losing a lot of blood at the end of May this year. Nothing to do with the ileostomy and reversal but probably as the result of a Crohn's operation in 1979).

 

[janeindeed]

I am by no means saying it's a bad idea to have a reversal, I just want to make sure I'm not going into it with extra risk. My surgeon would do the reversal now if I wanted- he just advised me that I have a choice about how and when I have surgery. There are always risks with any surgery. I just like the idea of having control over some of that.

My advice is to do what you want. Don't do something because it's what people normally do. Don't do something because you are afraid. Do what will make you happy. Being healthy makes me happy- pooping normally I could take it or leave it. Doctors know about how your body works- but they don't know how you feel or what you want.

 

[jenyb62]

Hello Everyone, had emergency surgery 5/30/12, perforation, bowel resection and ileostomy....the bag was not my favorite thing, leakage, constant emptying, etc...although I could eat, I continued to lose weight because everything dumped into the bag so fast, that was a problem while being out and about. I had my reversal on 9/11/12; it went fine and I was back to work full time in 3 weeks; other than nausea, gas and diarrhea, I can't complain; no serious complications and I have continued to lose some weight, which is good, I was overweight prior to surgery. I will say that after the reversal my hair started to fall out, anyone out there experience that? But I believe it is due to all the stress my bodies been through, also, my period stopped...I am 50, but prior to surgery I still had my cycle each month...any thoughts from anyone would be appreciated.

 

[SusanB]

Jeny, I also lost over half my hair. I had big 80's hair too!! lol Its been a year and a half since my first surgery and my hair is starting to grow back in little whiffs.
My period also stopped for a few months. I just think its from the trama your body goes through. Mine has come back..

 

[KazT17]

My stoma is permenant now, wouldn't reverse if I could. My hair fell out but grew back thicker than ever. My periods stopped and have not returned after 18 months xxx

 

[jenyb62]

Thanks Susan for your reply, yes the 80's do, remember it well, I've always had long hair but when it started falling out everywhere, called my sister the hair dresser, she was more than happy to cut it for me, I actually love it now, but it's still coming out, not at the rate it was....

Thanks again...Be well.

 

[jenyb62]

Hi KazT....thank you for your reply, I have to say, I had to look up proctectomy, and I work in the medical field, LOL, sounds like you've been thru the ringer my friend........I don't mind not having the period thing, I'm not even experiencing the menopausal thing either....HOORAY!

 

[KazT17]

I don't mind either Jenyb. The proctectomy sounds a lot worse than it is, well in my case anyway. Now it is all healed it is fab not to have any issues down there!! Xxx

 

[robbo87]

My reversal was mean't to have been done earlier this year but for various reasons it can't go ahead at the minute, its nearly 18 months since I had my surgery and it could be well into next year now before I get the reversal.

 

[jaydawg9116]

I had my surgery in December 2010 and my takedown was in April 2011 - I now live with the j-pouch.
I have had very little luck with losing weight. I had gotten quite plump before the surgery due to all the prednisone I was taking. I had gotten up to 185 lbs (I am only 5'3) - not good at all. After the first surgery, I did go down to 165, but after my takedown - it has barely moved. I am still at 155, I take adipex (two a day), walk at least five days a week and have cut back on my portions. I thought for sure it would be easier now with my system moving faster but no such luck. I will say this though, there was major irritation in the anal region after the take down, but with the help of immodium ( which I still take 8 a day) and a great little ointment called ILEX - I have overcome the major irritation. I have my moments, depending on what I eat , but really happy with the decision that I have made. Either way Iw ould still need to lose the weight and would like to know why it's just not happening.