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Author Topic: Ileostomy reversal success story  (Read 9229 times)
Lula
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« on: August 22, 2012, 01:49:00 PM »

I wondered if my story might help anyone considering a reversal - I had bowel cancer 20 years ago (at the age of 30), underwent a hemi-colectomy plus 6 months chemo and all was (mostly) well until 2 years ago when it came back - a primary in the splenic flexure.

A sub-total colectomy followed; unfortunately I developed an anastomotic leak, followed by peritonitis and septicaemia.  A return to theatre for emergency surgery and lavage, resulting in an ileostomy.  The septicaemia had been brutal and I suffered multiple organ failure and stayed on life support for 34 days.  Three months after that on the ward saw a mysterious infection in my lungs that didn't respond to antibiotics, plus further renal failure caused by dehydration which hadn't been spotted by the nursing staff or doctors. Or consultants.  In fact, my fluids hadn't been monitored at all!  Unbelievable.

Anyway, eventually I returned home for the long recovery - I couldn't walk; 3 seizures and a stroke had robbed me of my ability to concentrate, organize my thoughts or process information and I had difficulty adjusting to life with a stoma, mainly because of sore skin and leaking, plus dehydration which put me in hospital a number of times.

Four weeks ago today I had a reversal carried out.  I admit to being terrified as I had such a bad experience the previous year. Also, my lungs are compromised, so a GA was not advised.  I looked on loads of forums for others' experiences and was further disheartened by the prevalence of problems associated with the surgery and recovery - but I think this may be because those with a good outcome may not feel the need to post their stories...

I think it's important to try to redress the balance and I'm happy to announce that my recovery has been far better and swifter than I thought possible - it wasn't great for the first few days as I had an ileus, and after coming home I had a mighty sore backside, but things have settled down unbelievably satisfactorily and I am SO pleased that I had the surgery.  I am working again, driving, going out and about...

Obviously things aren't, and will never be, quite the same in the digestive sense; I have to be careful what I eat, in fact, I am still experimenting - some food, I think it may be dairy, causes untold gas, but in general, this is a success story that I hope may bring a feeling of comfort to those worrying about a reversal op.  I came very close to losing my life on 3 occasions, and having survived, I now make it my mission to spread the word about early diagnosis and to try to offer some positive words and thoughts to those who face difficult decisions.

Best wishes to you all in your journeys through this funny old life - Lula

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wikey
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« Reply #1 on: August 22, 2012, 02:25:25 PM »

hello Lula, wow you have been through the mill!

well done  on your recovery

it is great to read stories with a good outcome.

i shall be going the reversal route next year some time.
best wishes
mikey

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alisonhelen
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« Reply #2 on: August 22, 2012, 07:08:53 PM »

Hi Lula and welcome to our forum!

Wow! What a great story and congratulations on getting through what at the time must have been a horrendous ordeal. We do like to hear good stories on this site and there are several posted and I encourage anyone else reading this to post positive stories. They really do encourage forum members maybe newly diagnosed, that it certainly is not all doom and gloom.

I'm interested in how much colon you had left after your sub-total colectomy as I had the same op and have been told a reversal is out of the question. Did you have to have any of your rectum removed?

Continue to post on here as you sound very much like the sort of person who can encourage and advise others who have had similar diagnosis tou yourself.

I wish you the best of luck with your continued recovery.

Alison
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Susan
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« Reply #3 on: August 23, 2012, 06:57:06 AM »

Hi Lula
What an excellent outcome after all of the life threatening difficulties you have been through.  Keep on posting about your progress.  I also had a very good outcome from treatment and reversal,   I think that our stories must offer some level of encouragment to newly diagnosied members.  Perhaps we need a "successful outcomes" page Wink

Very best wishes
susan
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Graeme
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« Reply #4 on: August 23, 2012, 10:13:54 PM »

Lula,

What an inspiration you are!! Thank you for sharing your journey with all of us as it is an inspiration to us all.

I had the reversal 14 years ago and am very happy with the outcome.

May you be blessed with continuing good health and keep posting. It will be good to hear about you again.

Graeme
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HeatherL
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« Reply #5 on: August 23, 2012, 11:00:04 PM »

Lula, another person to inspire such as me, a newbie to bowel cancer.
May you continue to enjoy good health xx
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Lula
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« Reply #6 on: August 24, 2012, 03:11:45 PM »

Thank you for all your lovely comments - I can't put my survival down to anything other than luck of the draw really, as both times I was diagnosed late, having been fed the 'It's irritable bowel syndrome; deal with it' line.  Strangely, I had a clear colonoscopy only two years before the second diagnosis, so it was a very quick growing tumour.  I knew exactly what it was, as the symptoms were almosy identical to the first time round; apart from the fact that my abdomen became rapidly larger, whereas the first time I visibly shrank on an almost daily basis.

But my point is not to elicit congratulations, although we all do deserve to be congratulated on the way we deal with our conditions - but to try to give hope to those who worry or are understandably scared about their treatment.  And I know I preach to the converted here, but my other mission is to bang on ad infinitum to whoever will listen about the importance of overcoming the embarrassment that might lead them to ignore their symptoms, and also to prod GPs into accepting that bowel cancer is not necessarily 'an older person's disease', taking their patients' symptoms more seriously and offering prompt referrals based on the individual and not the statistic.

(I am on the list of patient voices here btw..)

The other thing that might be worth mentioning is diet-related - I have, through a proces of erm, elimination, become aware that it was fibre that was casuing the gas problems and not dairy, which I thought might have been the culprit.  I am now back on a low fibre, low residue diet, and feeling virtually 100% again.  I visit the bathroom twice a day (form every hour and a half during the initial days) and my abdomen has almost reverted back to its pre-op flatness.  I am SO happy to have been able to have this reversal and I am glad that my success story has been a help to some of you!

Heather - virtual hugs coming your way...
Graeme - I am so glad to hear that your reversal was also a success! Keep on keeping on!
Susan - brilliant idea - a successful outcomes page!!! Smiley
Alison - I retained all of my rectum fortunately, and I think this is what has enabled me to recover so quickly...
Mikey - good luck with your reversal next year - there were times immediately post-op when it was mighty uncomfortable, but I tried to remember that recovery is a PROCESS, and I went easy on myself!!

Thank you again for replying - Lula x

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PeteS
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« Reply #7 on: September 01, 2012, 03:40:35 PM »

Hello Lula,

you certainly have succceeded in giving me hope and encouragement. You have been through a hellish time and your strength and wisdom and encouragment to others shines through.

I am having an ileostomy reversal in 3 weeks time, and have been feeling anxious about the outcomes and the battle to regain a degree of 'normality' afterwards, but yur contribution and the help and advice of others has given me heart.

I agree with you 100 per cent with you about early diagnosis, and the need for GPs to investigate more quickly and more thoroughly. I know my cancer (recto-sigmoid)  which lead to a resection a year ago could have been treated earlier than it was. It was a combination of my own prevarication,  initially being persuaded that my symptoms could be put down to 'other causes', and also a very upsetting experience when being treated for piles  that lead me to not pushing hard enough for further investiagtions.  Fortunately the tumour was slow growing, but still at C1 stage by the time action was taken. I blame myself really for linking my symptoms to piles for so long, and believe that early diagnosis and more research into prevention are so so important.

It is brilliant that you are feeling virtually 100 per cent again and that all is going well. I must amdit I was anxious, very anxious really, about being housebound after the op and the thought of having to virtaully set up home in the loo was freaking me out. I am mightily encouraged and am approaching September 21 st in a good frame of mind. Thank you Lula!
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« Reply #8 on: September 02, 2012, 07:26:42 PM »

I took a very different view to my post-reversal diet ..

I was determined to eat healthily on a number of fronts that doesn't mean a low fibre or low-residue intake ..

 .. and so I pay the price for that, but I prefer to eat good stuff and smell than risk not doing the best I can for my anti-cancer regime ... and I ate it all from very early on, thinking I was going to be in charge!  haha

 Cheesy
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
suze
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« Reply #9 on: October 15, 2012, 10:23:26 AM »

bump
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
andrew1965
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« Reply #10 on: December 28, 2012, 09:26:46 PM »

Lulu,

Not sure if you are still reading this forum but your story is hugely encouraging for me. I had a tumour removed in December and an unexpected ileostomy. Discharged home and readmitted 3 days later with a collection. Discharged again Christmas Eve and now recovering. Nothing like your experiences which were horrific. However, have had a fear that ileostomy may not be reversed due to complications. Reading your story has restored my confidence. Thanks.

Andrew
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smokey
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« Reply #11 on: January 06, 2013, 03:41:46 PM »

Hello Andrew,
Like u i had one removed in Feb. 2010 and have lived with a bag for 2 yrs (which i hate), due for reversal, hopefully in a couple of months after scans, but i cant seem to put any weight on even tho i eat like a horse. hospital will use this to try and put me off i know, but i cant wait anymore. Fingers X-d for us all A. Hope i'm positive like Lulu. Good luck everyone.
Mags.
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Brian
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« Reply #12 on: January 06, 2013, 04:19:43 PM »

Hello Mags.  A warm welcome to the site.  I wish I shared your problem about not putting weight on!!  I hope you find the Forum and community a good place; we all try to support and encourage one another along the way.  Do keep us posted about how things go for you, and good luck with the reversal when it comes.  B 
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« Reply #13 on: January 06, 2013, 05:37:03 PM »

Hello Smokey/Mags. welcome to the forum.
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em_mell81
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« Reply #14 on: January 07, 2013, 04:20:29 AM »

Hi Lula,

Im 31 and was diagnosed with stage 4 bowel cancer in April 2012 (was 30 at time of diagnosis). I have a colostomy bag and am booked in for a reversal next month. I'm worried about getting used to things after the surgery, but it's great to read your experience - especially the bit about being back in action after just 4 weeks! Also, getting used to a new diet (again!) is stressing me out a little! It can be so hard to eliminate foods, especially the ones we have always enjoyed!

Thanks for sharing your experience - wishing you continued health & happiness Smiley

Emma
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