Concerns about Adhesions with Redoing Loop Ileostomy to 'End' with Colon Removal?

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vdahl
May 30, 2018 11:54 pm

I had a loop ileostomy on 2/2/2017 because of colonic inertia with pelvic floor issues. Knowing what I know now, I would have questioned why they didn't remove the colon and do an end ileostomy at the time. We knew it would not make sense to do a takedown because of the other issues, plus I'm nearly 65 so living with the pouch is easier than what I have gone through for so many years. Nonetheless, it was done and I realize they were trying to be conservative. I was told the bypassed colon would continue to produce mucus and to expect it to pass occasionally. Evidently, there is inflammation and a collection of mucus and stool in the ascending portion of the colon. Just like the initial problem, it takes a long time to get through the colon and is extremely difficult to pass. I have a lot of cramping and discomfort when it's getting ready to pass. We've tried cortisone enemas, which work for a short time but they don't want to use them on a long-term basis. This morning it was like having an actual bowel movement; mostly stool with very little mucus. Additionally, the skin around the stoma hasn't been able to heal because the active portion of the stoma is recessed (I do use a deep convex) and the inactive side pushes over the top. Now they've decided to remove the colon and turn it into a true end ileostomy. I have a history of adhesions and know there is a portion of the bowel that is fixed by adhesions. Should I be concerned about making things even worse because of messing with them? My husband sort of planted doubt and I'm stressing over not wanting to hear "I told you so!" Know what I mean?

I'd appreciate your thoughts.

maddie50322
May 31, 2018 12:56 am

I am in the same boat as you. I have colonic inertia with pelvic floor dysfunction. We tried every laxative regime before resorting to an ileostomy. However, I also had the loop ileostomy, also with no intentions really of getting rid of it. However, now 7 months out from surgery, I am realizing I need to get my colon removed, get my ostomy converted. I was told within a year I need to get my colon removed because it will start deteriorating if not used. I have not had any mucus passed since the first few weeks.

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Bill
May 31, 2018 5:51 am

Hello Vicky. In reading your post, I feel that you have summarised you position very well and, there may always be some doubt about decision making one way or another as there are risks attached to anything we do. I cannot give advice on whether or not to decide one way or the other but I do have ideas on negating the  'I told you so '- game. There is a general theme to 'game-playing' which, according to Eric Byrne, means that they are basically 'dishonest'. The only effective defence against them is to 'umask' the game and give a clear indication that you don't want to 'play'. In this case, it might be useful to lay out all your medical options, risks and potential outcomes. By doing so, whatever outcomes ensue, you can genuinely say that you had considered that option and therefore you can imply that you 'told him so!' Interestingly, your husband might not even realise that he is playing a game when he draws attention to what he has said in the past. He might simply be trying to be helpful in pointing out what appears to him to be be obvious. In his book GAMES PEOPLE PLAY', Byrne labels this 'game' as:  'I'm only trying to help you' and points out that it is often a favourite game for professionals to play with their clients. Game playing can get quite complex so I will not elaborate further here. I just hope you weigh up the for's and against's and come to the most sensible decision for yourself.

Best wishes

Bill 

vdahl
Jun 01, 2018 12:29 am

Hi Bill,

Thank you so much for your thought-provoking response. Your point certainly isn't falling on deaf ears, but perhaps my fear isn't as much his attempt to play games, as it is my propensity to react from a familiar place of codependence. You're absolutely correct, I have to make the best decision I can, for ME, by considering the facts at hand and my long-term goals. I've read a little more about the procedure and feel better knowing the adhesions won't be exposed as much... of course, I don't REALLY know that it makes a difference :)

As time goes on, I am working to heal and move forward in recovery. It's always perplexing to wonder what came first... mental illness because of physical issues or vice versa!

Thanks for your great words!

Vicki

vdahl
Jun 01, 2018 1:01 am

Hi Maddie!

I knew you'd understand! I know you have a lot more going on than I do, but I sincerely appreciate your point of view. My initial surgeon told me some people live with a loop ileostomy indefinitely. Others have told me that the inflammation and other issues can cause other issues. This second surgeon says there's too much stool being pushed through the inactive portion of the loop and causing a buildup. I do feel like it's the best thing to do and hope the adhesions stay in check. I truly don't think it would be worse. I'm looking forward to having the stoma above the skin. Of course, I have several boxes of deep convex flanges, wouldn't ya know.

Thanks for your thoughtful reply. I'm always happy to hear your advice.

Vicki

 

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vdahl
Jun 01, 2018 1:01 am

Hi Maddie!

I knew you'd understand! I know you have a lot more going on than I do, but I sincerely appreciate your point of view. My initial surgeon told me some people live with a loop ileostomy indefinitely. Others have told me that the inflammation and other issues can cause other issues. This second surgeon says there's too much stool being pushed through the inactive portion of the loop and causing a buildup. I do feel like it's the best thing to do and hope the adhesions stay in check. I truly don't think it would be worse. I'm looking forward to having the stoma above the skin. Of course, I have several boxes of deep convex flanges, wouldn't ya know.

Thanks for your thoughtful reply. I'm always happy to hear your advice.

Vicki