Hello Loustar42,

                          sorry to read of your predicament,its not a great option to live with a stoma,but the emohasis is focusing on living.

l should say that l had chemo/radio before surgery on bowel and liver ad ended up with a stoma bag which was suggested as being permanent. My body threw in its usual number with rejection of foriegn objects, and as a result l lived with a constant open raw bleeding site where the bags attached for 14 months. l well remember the joy of constantly wiping off the blood and quickly having to stick on the new bag to raw flesh before fresh bleeding made that impossible.

Your question concerning refusal raises the the following points in my mind.

Your initial reaction is understandable and would be shared by every single stoma recipient

Yes you can refuse a stoma, in doing so you could effectively be removing yourself from the option of having surgery if your medical team decide that having a stoma is the only option coupled to that. All that could be left would be pallative care until the tumour ran its course

You have the option to have a second opinion from another team,my advice would be for you to use that and from one operating from a different centre.

Your tumour is unique to you, and as such may preclude or include different options. l was made aware shortly after my surgery of differences in approach between countries (l live in Scotland) and centres by a neighbouring consultant oncology Professor who operates out of a leading pioneering hospital in England, who bought a holiday home here.At the time the difference was a national protocol had been decided in Scotland that no bowel resections would be offered with immediate rejoining of the bowel, due to prospects of failiure and leakage of bowel contents into the chest cavity with the subsequent horrendous consequences that would follow..

The Professor confirmed that his pioneering teams would rejoin bowels at time of resection with the caveat being that they were highly selective in only choosing those types of bowel that indicated a high probability of success,and that the bulk of patients could well wake up and indeed did, with a stoma insitu.The difference in the failiure rate between their system and the Scottish national one was at the time 1% higher, but that 1% was enough to trip the threshold for a Scottish surgical team into an investigation review and suspension whilst it took place.This gives you an idea of high standards and pressures these surgical teams operate by and rightly so, eight years ago the relevant figures were 4 and 5% failiure rates.

Permanent prognosis at the time does not always mean that further down the line,as mine was reversed, but it will be dependent on the conditions relating to the bowel downstream of surgery.

ADAMANT can come with a very high price attached

Stoma reversal is not a magic bullet, l traded 14 months of complete misery for five years of bowel blitzcrieg before the bowel decided to rejoin humanity. Even in your most vivid imagination could you ever get close to realising how that translates to reality.Two years in my bowel motions were of small amounts of successive multiples of up to 30 in an hour, l had now swapped a bleeding stoma site for a scoured bleeding back passage.In the following 7 years l have had 5 incidencies where the bowel ceased working with 3 leading to hospitalisation

There are no easy options in where you find yourself, and l accept my experience was on the extreme edge of oblivion, it  however demonstrates the need to think long and hard about the consequences you are prepared to face.In my case l have always been of a dogged determined nature,but my journey has tested my resolve to limits very few would  be comfortable to face, a stoma averts the misery

Comfortable is not the word to choose with my choice of direction which was made easier by the knowledge l was facing a lifetime of an open wound on my stomach, without that as much as l loathed the thought of a stoma bag for life,l am not sure l would have jumped. After 5 years of staring down the barrel of a fully loaded explosive weapon that was my rear passage l had reached the stage where l had accepted continued purgatory as the price to pay for continuing when suddenly a switch was flipped and a series of hiccuping steps took me up to a gloriously settled plateau that l occupy now.  Am l a happy boy today? oh yes indeedy,l have paid a high price and am making up for the cost of admission to a continued fully active enjoyable life.

  l hope my post can give you an informed insight into one of the potential outcomes of a stoma free existence and  food for thought,

                                                  hope your journey goes as smooth as it possibly can,

                                                                                                                                          David

Hi David

Please do not presume to speak for "every single stoma recipient" in terms of initial reactions-you cannot speak as if you know how everyone reacts, and indeed that was not my initial reaction in any way at all.

I knew pre surgery that my colostomy would be permanent and was fine with that thought, as I was also fine with the prospect of my urostomy. You had an experience which sounds horrendous, and again does not match mine in any way.  I have never had bleeding and the raw skin you describe, but you've certainly made having a stoma an horrific thought for someone who doesn't have one.

It was an easy decision for me, and I didn't even have cancer in my colon. I chose larger surgery for the chance of a better outcome overall, and have never regretted that for a moment. Living with stomas IS a great option for me, because without them I would have died. 

Hi David

Please do not presume to speak for "every single stoma recipient" in terms of initial reactions-you cannot speak as if you know how everyone reacts, and indeed that was not my initial reaction in any way at all.

I knew pre surgery that my colostomy would be permanent and was fine with that thought, as I was also fine with the prospect of my urostomy. You had an experience which sounds horrendous, and again does not match mine in any way.  I have never had bleeding and the raw skin you describe, but you've certainly made having a stoma an horrific thought for someone who doesn't have one.

It was an easy decision for me, and I didn't even have cancer in my colon. I chose larger surgery for the chance of a better outcome overall, and have never regretted that for a moment. Living with stomas IS a great option for me, because without them I would have died.