Ileostomy surgery

[Beclun]

My boyfriend is now in hospital awaiting surgery to repair fistulas and 2 abscesses, one of which has latched itself to his small bowel.

We know he has to have his colostomy removed, colon removed, some stomach removed and an ileostomy fitted...there are complications with the surgery because of the state his colostomy is in! He is so worried about his quality of life after the op...

Has anyone had similar or the same? And can give us there opinion on surgery and life afterwards

Thanks

 

[DJW]

Hi,
My apologies. I just came across your post.
I've had my ileostomy for almost 30 years. It actually gave me my life back.

 

[user 413287]

I've had a ileostomy for 12 years now and while I've had issues and problems with it I wouldn't be alive today without it.How is he doing now?

 

[Tommy21bn]

Hi, I had an emergency collectomy caused by a toxic megacolon when I was 19. It was simultaneously the worst and best thing to ever happen to me. The worst because it was a deeply traumatising event which caused cascading health problems and the best because it allowed to me to stay alive.I have had an ileostomy for 16 years.

Given the quantity of your bfs complicated symptoms it sounds as if he has no choice as to whether he has the op. My advice is to simply take it one day at a time. Gain your strength, set goals and build towards the quality of life that you want. Perhaps you can't have everything that you want but you can often find others that will assist you. I found my quality of life improved once I stopped trying to do everything and started to prioritise the things that were most important to me.

I hope the operations go well and good luck to you both.

 

[Beclun]

Thanks for your replies, its nice being able to see how others have been after but all.
He had the operation on Tuesday, they have removed his whole colon, removed his colostomy and inserted a permanent ileostomy. He is very sore, which is to be expected. The surgeon says he should be home by the weekend so fingers crossed. Can I ask how long did it take for you all to recover and return to normal activities? He is also worried about how often the new illeostomy needs attention...

Just hope this is what he needed to have a happy life. Thanks for replying

 

[user 413287]

For me it was 4 to 6 weeks till I started feeling better and it was 6 months to a year of going to the bathroom like crazy no matter what I ate.Once I got that stuff under control I was relatively okay.

 

[Beclun]

That's what he is worried about, good to know it can be sort of controlled. Have you had any issues since the op?

 

[Susan2]

Did the surgery remove his rectum and anus also or did they leave a stump? His time of recovery will be partially dependent on how much much was affected by the Crohn's and how much they had to remove. I took a long time to heal because they removed so much affected flesh as well as the whole of the colon, the rectum and the anus. The stoma will take a while to settle down, too, but your bf will know about that from his colostomy.

Everyone's stoma a bit different. I use a one-piece bag and usually change it every three days or so - some people change theirs more often; some less often. You need to empty it more frequently that with a colostomy because the output is more or less liquid. (I tend to take Lomotil before I go out if I think that I might have difficulty getting to a toilet) Most people need to empty their ileostomy bag once during the night but that becomes routine.

I do all sorts of things now that I couldn't have done before getting my ileostomy I have just been on a holiday to Tasmania and did a number of day walks - one quite difficult 5-hour walk. I have been snorkelling in the Galapagos, visiting the Amazon and Machu Pichu in Peru, naked bathing in a Japanese (bath house), a five day "gourmet cycling for softies" trip...

I hope this helps but do ask any questions that you think of and we will try to answer them for you and your boyfriend.

 

[Beclun]

Wow that's amazing, I'm so glad its helped you so much. He has had a difficult couple days and is refusing visitors today, which I understand, I think he feels he has to make an effort for them and he is in too much pain, he has had an epidural but its not working properly.

It's been abit of a bumpy ride leading up to this with the docs first diagnosing him with muscle tears...when in fact he had abscesses. 4 months later he finally got the surgery. I think its all taking its toll mentally, I wish he could be on this himself so he could see what in the long term it has done for you all.

When he arrived for the op on Tuesday, he was first told that his whole colon is diseased, and his stomach and rectum had collitus. So he was having the whole lot taken and some stomach, then he was told just before the op that only a small part of his colon was deseased but he didn't need it so they were taking it anyway. I know they have, and I know they have taken some stomach. I'm not 100% on whether they went for the anus and rectum. I think they did leave the anus. But they took a biopsy of the rectum so they may have left that too... I haven't been able to see him yet, which is killing me but I have to respect his decision, not even his mum is allowed. So when I go I'll know more. Thanks again for all your help I really really appreciate it. I'm so so so sorry you've all been through the same or similar, watching this happen to him, it isn't fair. But I'm glad this op has helped you

 

[user 413287]

That's what he is worried about, good to know it can be sort of controlled. Have you had any issues since the op?

Much like Susan2 They removed everything with me.Since the surgery I've had issues with Blockages and scar tissue but I'm so much better than I was with my colon.

 

[Beclun]

That's good to know, I'm glad your a lot better. Hope it works the same for mat

 

[Beclun]

Just wondering if anyone can help? Did any of you have severe collar bone pain after your surgery? Thanks

 

[gmm]

quite a few times, it disappears after a day or so, hell knows what they do in the operating room to cause it, read somewhere its to do with gas somehow