Stoma reversal

Welcome to the stoma support group.

You seem to have arrived at a very difficult decision to make, stick with the stoma or face the unknown.

The surgeon has put his cards on the table by saying it will be a difficult procedure and will be open surgery and although he is willing to go ahead it would a pity for your husband to put himself through the surgery and possibly come out still with a stoma bag.

He appears to be able to live with his stoma as he is still able to play in his rock band but I can understand his other problems which are all probably connected his dislike of the stoma affecting his libido and being conscious of letting you see him wearing a bag and I think he needs to talk to someone about these concerns, his stoma care nurse is a good place to start as they are trained in addressing these problems, otherwise it's a talk with his GP to seek his advice. Either way it's a meeting that both of you should attend and be able to express your own feelings, your thoughts are just as important as your husbands.

I can also understand the constant patting of his bag it's a security thing checking to see if the bag needs to be emptied or looking for other problems, we all do it subconsciously.

Most pouches should not stick out and it maybe a simple matter of changing the type and make of his pouch and again the stoma care nurse is the best person to advise him.

Is the reason his pouch sticks out because he has a hernia which might be solved by wearing a support garment.

I would suggest that you both draw up a list of pros and cons separately then discuss the points together and hopefully find a solution

You don't say if husbands has a colostomy or not if he has and decides to stick with it he might want to look into irrigation. This means that every other day (more or less) he irritates his bowels and removes all the waste then instead of a bag he can wear a plug and this would get rid of the worry of the bag sticking out and may have the affect of increasing his libido as he won't be so conscious of you seeing him undressed.

The Colostomy Association has produced this leaflet Introduction to Irrigation which maybe of interest to you both.

I afraid that I've probably not been of much help in your decision making and it looks like I'm making a case for keeping his stoma.

I'm sure that others will be along shortly to give you their comments on reversal or not but the main thing here is to consider the risks involved and the quality of life your husband wants to achieve and this may mean an in depth meeting with the surgeon to go into everything in great detail,  surgeons don't normally operate unless they think that the procedure will be a success but they really don't know what they will find until your husband is on the operation table and surgery begins and at that stage they make a decision which way to go.

I wish you well in your decision making and would like to ask that you let us know what you both decide and if he does opt for surgery you keep us informed on how things went.

Ian

Hi . Yes it’s a tough decision and you’ve had some great advice so far. I had a small leak after my Resection which was resolved by inserting a drain in my right buttock for 6 weeks and then had another ‘infected fluid buildup’ after my reversal which was resolved by nil by mouth for several days then fluids only etc. They seemed to infer that it might have been down to the radiotherapy I had before my op which weakens the bowel but I don’t think your hubby had that did he?

Having looked back through some of your earlier posts I noticed that mrs2017 commented that she was in a similar situation so I’ve tagged her in to see if she can offer any advise?

Hope you’re both able to come to a decision that you’re happy with

Karen x

Your post could have been written by me, same age, same set of circumstances with the leak but we are now two years down the line and my husband is booked in for reversal on Tuesday next week ! .  He was originally told that it was likely that his stoma would be permanent due to the emergency Hartman’s on his second op and his surgeon said she would not even consider it for at least a year but after the year said she would attempt the reversal, he was then given a few months to decide and he decided that he would go for the op. he feels the same as your husband about the bag , it really makes no difference to me but I guess unless you are in their position you can’t really understand how they feel.  But it has been his decision and it’s not been easy, we are both scared , sounds like he has been given the same information as your husband and no guarantees that it will be successful, so sorry no real advice other than I know how you feel and will update next week after the operation.  Regards. Chris x x

Hi Chris, thank you so much for your message, it really does help to talk to someone is going thru the exact same route. My hubby has the 'decision' meeting with the consultant on 8th Jan, so have sometime to mull it all over, atm he changes his mind daily.

When youre told of all the risks/complications the 1st time around, you just sign because you don't think they're going to happen to you, but when they do, and you are choosing to put yourself through all that again, so hard to make the decision.

The consultant told my hubby that because there was 'just enough' Bowel stump left to attempt a reversal, that even if its all successful, in the future he wouldnt get much warning before he had to go as not much 'storage space' inside? anyways, please keep me posted as to how your hubbys doing, we'll be thinking of him on Tuesday next xx 

Hi, surgery has been done yesterday and hubby sitting up out of bed and looking good, they told him it was a long and quite difficult operation due to scare tissue from prev. Ops and that he also only had a small bowel stump, about 5 cm I think they said, anyway they have managed to join him up. he does have a a temporary ileostomy to allow the join to heal,  this was expected and is likely to have for a couple of months, so still a while off knowing how this will all turn out.  Chris x 

Hiya, Hubby asked me to check with you how it went, and  I had literally just logged in to message you, and saw your message. That's good news, so far so good!!, we'll be thinking and praying for u both each day for as long as its takes. We really are on the same journey aren't we, and as much as we wouldn't wish it on anyone, it does help to have companions that know exactly how we're feeling. Strength for today, bright hope for tomorrow, Donna xx

Hi

I would just like to chime in with Ian’s comments about irrigation, which your husband may be able to do with his colostomy if he doesn’t go for the reversal surgery.

I had no choice with my permanent colostomy.  I tried for a second ultra low anterior resection with my recurrent rectal cancer last year but the join didn’t work and I ended up with the colostomy. (Details in my profile if you’re interested)

15 months on and I’m well and irrigating, so feel almost back to normal regarding bowel control.  I used to pat my bag a lot to check if it was full/filling, but now I just wear a small stoma cap (like a large sticking plaster) over my stoma.

After my first cancer surgery I would have some urgency in going to the loo and was told it would be worse after the second operation.  My surgeon said I’d always need to be near a toilet! I was quite worried about being more or less incontinent!!

It is a huge decision! I really wanted not to end up with a permanent stoma, but now I’ve got used to is and have the freedom of irrigating it’s really liveable with. 

Anyway the very best of luck to you and your husband with your decision.

Liz x

Hi Chris,

How are u and hubby doing? been thinking about u both a lot. xxxxxx

Hi Chris, wondering how u and hubby are doing? Been thinking about u both a lot xxx

Hi,  fine thanks,  husband has done amazingly well and was only in hospital for three nights after his open surgery, was told to expect about 7 nights.   He has had the staples out and wound has healed well, he now has an ileostomy which he is finding harder to look after than the colostomy as it’s more liquid output and diet is more restricted but so far so good, we are expecting the next stage when the ileostomy is reversed to be harder but it will be a couple of months before that happens,  thank you for asking. Chris x x