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Author Topic: Ileostomy reversal success story  (Read 1250 times)
JulieK
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« on: November 22, 2013, 11:46:31 AM »

A bit about me & my story so far - Happily married for 25 years & have 3 beautiful daughters (25, 19 & 18) and I've been reading this forum on and off for the past 14 months. I was diagnosed with bowel cancer on 24 September 2012 (aged 43) operation 3 weeks later, chemo started in November 2012 and finished in March 2013 due to low platelet levels. Ileostomy reversal on 10 June 2013 and secondary cancer of the liver diagnosed on 27 June. Liver resection on 1 August and chemo started again on 14 October 2013.

Reversal success (and recommend to anyone offered it) I had arranged an appointment with my colorectal nurse for 4 June 2013 as I still had unanswered questions regarding my operation & sudden chemo stoppage.  Me and my husband arrived armed with my list of questions, to be told by my nurse, that I could have my stoma reversed on 10 June!  I was totally shocked & unprepared as I had been originally told that a reversal would be about one year post op. I want to point out, that I originally struggled to come to terms with having a stoma, I didn't like life with one, but with time, dealt with it. My nurse explained the procedure, even though I desperately wanted the reversal, I was very nervous and apprehensive as I'd read mainly bad experience stories. So much so, at one point, I even thought it's better the devil you know.   I went in for the op on the Monday, I felt very well after surgery but knew that I would not be discharged until I'd been to the loo. I was so worried about going as I'd been told and read that it could be quite explosive, constant diarrhoea, lots of trips to the loo day & night, sore, housebound etc etc. I was discharged on the Thursday, after my first "normal poo". All the above that I was expecting didn't happen, yes I did have diarrhoea but not uncontrollable, yes I did get up during the night but only for the first few days, until things settled down. No I wasn't housebound and no I didn't feel like I should be near a toilet at all times. It took about 10 days from my first poo for things to settle and go to some routine. By 3 weeks post op my toilet habits were back to "normal" (now, for me, twice a day) I even went to a concert at wembley Stadium on 29 June! My diet is back to its pre diagnosed state, meaning I eat anything I like and I love a curry!

I wanted to write a good news story, as we are all to often, quick to tell a bad story or experience. I hope my story has given someone the confidence, belief and positiveness to make the right decision, you won't regret it. Good luck x
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stevey
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« Reply #1 on: November 22, 2013, 01:46:29 PM »

Hi JulieK! What a fantastic reversal story! Feels like longer, though I've had my stoma just short of a month now! Had some early teething problems, though the bag is now far more managable than it was a couple of weeks ago! My surgeon hinted at maybe four months before my reversal and much like you, I've read all the horror stories regards post-reversal - so I'm so glad you've posted a good post-reversal story!
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Brian
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« Reply #2 on: November 22, 2013, 02:42:44 PM »

Julie,  thanks so much for taking the time to share your experiences. We love great news on here; it does wonders for the spirit and brings hope to those setting out their treatment plan.  All good wishes as you move forward. B x
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Jorton
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« Reply #3 on: November 25, 2013, 10:44:43 PM »

That's great news. Always good to hear something positive.

Christmas may get in the way of my reversal but all is healed so only a matter of time.  I was operated on at the end of August.

Having the ileostomy has helped me to monitor output and I will continue to do this post reversal.

As with my treatment I'll continue to be positive I'm sure it helps
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Brian
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« Reply #4 on: November 26, 2013, 10:44:46 AM »

Good on you Jorton. Sounds as though things are going well for you, too.  Enjoy the festive season and build up your strength for what's to come. All good wishes, B
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Every now and then beautiful angels appear cleverly disguised as ordinary human beings.

Alone we can do so little. Together we can do so much.

The kindness we show and the love we give keep changing the world long after we leave it behind. One well-lived life makes a difference forever.
Ian
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« Reply #5 on: November 28, 2013, 09:45:00 PM »

Hi Julie,
My story was exactly the same as yours - no probs at all following reversal in May this year - original op was August last year.
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Ian
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« Reply #6 on: December 03, 2013, 05:54:27 PM »

Thank you for recounting a wonderful success story, Julie!!

Its is so natural for there to be only sufficient motivation to post on these forums when we are in dire need to help and support, which inevitably means challenging news.
I was also petrified of all I'd read about reversal issues.
But I was pleasantly surprised that I was lucky to have a very successful and rapid return close to normality. Many will say that it will never be absolutely as pre-op when I still had all of my sigmoid colon and a complete rectum and descending colon. But I am amazed at how well it has gone none-the-less.

I made a huge effort to avoid taking any medication to slow down or speed up my bowel motions, aiming to do that by getting my dormant bowel and anal muscles to wake and get exercising to regain strength again. It was a lot of hit'n'miss but I persevered.
After a couple of months of strictly moderated diet, keeping with small portions I was able to even have curries back on the menu!
Now, 8 months after my reversal, it is only fresh chillies and large portions that sends my bowel into a tail spin.
I am still keeping up with regular aerobic exercises and things definitely feel as if they are levelling off to a normalised, well under control outlook.
I think I read somewhere that on average it would take one year to get there. So maybe I am a little ahead of schedule, touch wood!!
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Oct'11 diagnosed colorectal (T3N1M0), Nov'11-Jan'12 daily Radio+Chemo, Apr'12 surgery & ileostomy, Jun-Dec'12 fortnightly FolFox6 Chemo, Jan'13 First 'All Clear' CT scan, Mar'13 Ileo reversal, May'13 3-mthly check changed to 6-mthly, Jul'13 Colonoscopy clear, Sep'13 Bloods clear. Mar'14 CT All Clear
JulieK
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« Reply #7 on: December 07, 2013, 06:17:19 PM »

I am so pleased that my story has given encouragement to you and that others have also shared their good experiences. Let's hope that our reversal success stories give hope to others.

Merry Christmas & healthy new year to you all x
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You never know how strong you are until being strong is the only choice you have...
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