You can refuse any treatment you don't want to have, including having a stoma as it's your body and your choice. I've lived with 2 permanent stomas for 2.5 years with no issues so I'm curious as to why you're adamant you couldn't cope with one? My priority was getting rid of my cancer, which is what happened and stomas are a small price to pay for that. I know lots of people who have had surgeries and stomas and don't know anyone who refused, because our priority was doing everything we could to be well. 

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. 

Hello Minska,

                         enjoy reading your posts and should point out that reading mine makes it clear that it was a personal account in no way presuming to speak for others.It attempted to portray the other side of going stoma free to one that is railing against having one,  and the "difficulties" you may find you are stood in further down the line having chosen not to have one

l am sorry if my writing skills failed to get that across but admit to my chosen profession being a long way apart from journalism.

We can all come on and post yeehaws and sound like patronising cheerleaders,sometimes a warts and all honest depiction can give someone a little more help in arriving to their life changing decision.

l was very aware that the stoma;s  have been a great option for yourself from all your previous posts,and l  am really happy to read that positive. l think if you read past the point of my bleeding stoma you will find plenty of points made in its favour linked to the balance of the possible pitfalls of rejecting that route,As in every consideration there will be pro;s and con;s, l am sorry if some of mine has offended you or anyone else in any way,

                                                                         take care,

                                                                                         David

Hello  Minska,

                         fair enough,in hindsight l should have prefixed with "the bulk of people". l will admit to never have met anyone during my treatment whose first thought was not to recoil from the suggestion.But thereafter its true to say people vary in the time and route they take to arrive at a decision of acceptance, some like yourself are fortunate in arriving there quicker than others,  who can  expend a lot of themselves in unhelpful stress in the process at the very time they need calm focus as their ally

For my part l will admit to being closer to turds than nerds, but thats what you get for keeping livestock,so l.m off now to clean up some more of them from my grazing fields

Keep up the good work posting and helping others that face treading that difficult and uncertain path we have previously succeeded in travelling,

                                                                        David,