More re bowel resection

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i have today accompanied my partner to see the surgeon who will perform his bowel resection. All was fairly positive until he mentioned an ileostomy maybe necessary if the part of bowel behind stricture is damaged. He said my partner should lessen and stop the Pentasa and azioprine which he referred to as POISON as they may affect the healing process. We then saw the colo rectal nurse who gave us more info and a discussion about catheters, epidurals and the dreaded BAG! I don't think my partner was prepared for this at all and although the surgeon said it may not be necessary I fear he will not go ahead with the op at all! Has anyone got any positive experiences maybe even with a temporary bag. The temporary time mentioned was 6 months which didn't help.

i am trying to remain positive but dread him refusing as his quality of life has been pretty grim for the past year on,this damn medication which does nothing at all.

help! 

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14 Replies

  • Posted

    I had a stricture and resection last December. They told me I may need a bag which may or may not be removed.  I did not need a bag at all.  I think it is protocol to warn you.  My quality of life went from nearly zero to 80%.  Well worth having done.
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    • Posted

      Thanks Sheila I do realise he had to be told it was a possibility but I'm afraid he may decide not to go ahead with the op.

       

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  • Posted

    Hi Katebrenda

    Oh dear love, I am so sorry that he had to come up against the comments regarding this and the possibility of having to have an ileostomy for a short amount of time. They will strive hard not to do that you know, but they have to warn him just in case things don't go according to plan. We all feel the same, and you are right when you say the" dreaded bag". I had five resections and a stricture done before I was told I risked getting cancer. The bowel is a dirty place and sometimes the only way to heal is to have an "outside toilet" which is what my Brother in Law calls it. I have had my colostomy for 30 years having had Crohns for 50 years, and yet I know from experience why he hates the idea of it. I absolutely and utterley abhored the idea and yet the other side of the coin was that I had been in so much pain and hardly had a life before this was done. I know it is easy to say and very hard for him to admit, especially perhaps for men, that at least it will give the bowel time to recover. It needs not to have acidity going through his system all the time, because it stops the internal skin healing. He knows really you know, but has dreaded this happening. Things have improved and although I think I would have hit someone who said that to me, it is true and the system I use is good, and I have a lot of control these days. But enough of that he needs the op and he has a good surgeon who has explained everything, as I said before, they won't do anything that they don't need to do. As much as I hated the thought of mine, when I see the soldiers with their limbs blown off it puts it all into perspective.

    Thinking about you both and hoping that he will be able to cope with whatever he has to face, lets face it he has probably been through hell anyway.    

    Best wishes  Sheila

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    • Posted

      Thank you so much for your helpful response. By your dates I assume you are an older person - my man is 71. I will try to feed back to him any feedback to help him make a decision.
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    • Posted

      Yes, you are right. I'm 71, 72 in November. So ok I know he is scared that is why he is acting the way he is, but he is intelligent and given his age, he will have had to come up against someone with a colostomy or ileostomy and with men they feel it will affect their maleness, it wont, but he would feel frightened about it. He needs the op so hopefully he will go through it.  There has to be a lighter side about this, and I will tell you a little story, that someone suggested that I should name my Colostomy - and it became George, so when it played up with wind etc I blamed it on George, nothing terrible, but people never knew I had "a bag" and once asked me to a party and also asked George along too. Well it would have been difficult not to turn up together!!!!  Best wishes  Sheila  
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  • Posted

    Howdy!

    Sorry to hear that your partner is feeling so rough. I've been there!

    The surgeons usually recommend a temporary Ileostomy to give the damaged bowel time to heal, giving better results.

     

    The medications are immune suppressants so they need to be out of your system so you heal quicker..

    I've had Crohns since 1987 and managed to put off surgery until last year. Things were getting steadily worse and after a brief spell in hospital in February 2015, it was decided that I couldn't put it off any longer. I was told that a selective operation is much more successful than an emergency one...

    I had a loop Ileostomy at the end of April last year. I was due to go to Cyprus in September and was told that I could probably have the reversal surgery before I went. I was unlucky and got an infection after the first op, so decided to put up with the bag until after my holiday. I was dreading the flight but needn't have worried. I sunbathed, swam and ate well  (just carefully - as there are some foods you need to avoid). 

    To cut a very long story short, having the bag was nowhere near as bad as I imagined.

    It takes a bit of getting used to but there are Stoma Nurses who are there to help and advise.

    Of course there were times when I hated it but most of the time it was not really a problem.

    I had a reversal on 31st March this year and although I am still off work things are healing nicely. In the end I decided to wait until I qualified for full sick pay with my employers otherwise I would have had it done sooner!

    The only thing I wish I'd known beforehand was, when they asked where I wanted the stoma to be situated on my stomach, that I hadn't chosen the exact spot where my trouser waistband went. I spent 11 months cursing myself for not asking for it higher oas it rubbed against my clothes!

    Well, I won't waffle on any longer..

    Hope this helps!

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    • Posted

      thank you for that. I feel it's better to have planned rather than emergency surgery but he says he would rather not know! He's not young so I feel rather now than later 
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    • Posted

      Do you think it would help if he spoke to someone who's had it done?

      I could email you my phone number..

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    • Posted

      That's a really kind offer but he's quite a private person so probably not.

      i will let you know if he would like to.

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    • Posted

      No worries! 

      Just give me a shout if he does!

      It may be worth you taking a look at another forum called Inspire com

      Put 'ostomy' in the search box and you will get to the 'Ostomy Support Community'. They are another very friendly bunch who all have (or have had) ileostomies, colostomies or urostomies. 

      It's predominantly American but there are several Bristish members.

      It may help give your partner an insight into how people get on with what is often referred to as their 'new normal' and there are several pepople who have had temporary bags who will share their experiences with you.

      You don't have to post anything if you don't want to but you will be made to feel very welcome if you do!

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  • Posted

    Hi there,

    It really isn't so bad.  I was fine and had no pain at all and all of a sudden I had no bowel due to it becoming perforated, an operation put it right and I was given a bag supposedly on a temporary basis but when they looked at the damage, it couldn't be reversed.  However, on the plus side, I was still able to work full time, didn't tell people at work and so it was all hidden, no-one could see anything at all and I carried on with a normal life able to eat and drink and enjoy my life.  Subsequently I've been ill and had a hernia behind the bag, which they fixed but didn't like the look of it the following day and so now am left with 12 inches of bowel and an illiostomy bag on the opposite site of my body, tiny, tiny scar where the original one was.  Just been on holiday no problems at all, been on the beach all day and, hey I'm still here.  Happy to speak to you anytime and can let you have phone number, it's really not all doom and gloom and I have no pain whatsoever.  Best wishes to you both.  x

     

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  • Posted

    Dear Katebrenda

    I have given a great  deal of thought to your partner's predicament, and I have come to the conclusion that it is    body and although we can come up with all sorts of pacifiers to help both of you, he is the one that will have to face it, and if in all honesty he can cope with the decision which he has made that he will not have an ileostomy done if it is necessary, then there is every possibility he knows what is right for him.  Maybe, although we have tried to say that  it is not that bad, and in general we have lived with it, but I know I suffered mentally about it, and perhaps he knows that he couldn't cope. I think a lot of us have had to be our own Doctor in a funny way and make our own decisions about what is good for us, and to some extent we are guided to make the right decisions.Crohns seems to do that to people because there is very little known about it. So what I am trying to say is that he has the right to say to the surgeon that you cannot do the ileostomy. Whatever they have said. It might sound a little negative, but he has the right to say that, if indeed.it is a life or death decision. Maybe you could talk to him about that and if, as he has said that he will not have a temporary ileostomy done, then so be it. His life, his decision. Try and realise that he has gone through a lot of pain to get where he is, and therefore his decision is valid, however upsetting to you particularly and the rest of us.  Best wishes  Sheila x

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