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Surgery options - your advice please!

Posted: Wed Mar 21, 2018 5:34 pm
by mybigredbum
Hi all,

So I am pencilled in for surgery in July to treat my drug-refractory UC. Two options I have narrowed it down to (I don't want a j-pouch):

1) One stage panproctocolectomy, or
2) Two stage: ileostomy creted first with rectal stump left in place, then at a later date have the stump removed and bum stitched up.

- My wife is due to give birth to our baby at the start of May - yay! - (so it will be about eight weeks old in July)
- She will be going back to work in mid-Sept and I will be baby's full-time carer
- Family are around to help now, but I can't say for sure who I will have around in the future
- I have a real feeling that the inflammation in my rectum will not calm down after surgery (like Dr says) because it hasn't responded to any of the conventional therapies so far

If you were in my situation, what would you do and why?

Thanks for your advice!

P.S. If you have time, please check out my blog - I'm slowly serialising my diary that I've been keeping since 2015.
Instagram: @mybigredbumdiary

Re: Surgery options - your advice please!

Posted: Wed Mar 21, 2018 9:51 pm
by rogalin47
First off, congrats on impending fatherhood. :great:

I've got an ileostomy, I've had it for 5 years and have never regretted it. I've not had the easiest of rides and still have on going issues but I would still do it all over again. Life with a stoma is far far preferable to life with uc. Initially I had a subtotal colectomy with my rectum left in place. I had severe problems with my rectal stump as I still had active uc in it plus I then developed diversion colitis in it too. Both failed to respond to any form of treatment. I wasn't a suitable candidate for an internal pouch and as I didn't want one anyway I happily waved goodbye to my rectum 14 months after my colectomy. So I'm now completely colon-less and uc free and blissfully happy with the result :D

If you've decided absolutely that you don't want a pouch and feel that you could well have on going issues with a remaining rectal stump I would say go for the complete panproctocolectomy. You have to be 100% sure this is what you feel you're happy to live the rest of your life with as once it's done there's no going back. A permanent stoma isn't perfect but it does give you back control over your life. You decide when you go to the loo, you can eat and drink pretty much what you like once you've got over the initial post op period and once you've found the stoma bag that suits you best you almost forget you're wearing one.....until it gets so full you can't put off emptying it any longer! Or maybe that's just me being a lazy mare some evenings when I can't be arsed to move myself from my comfy sofa and good book just to empty my bag!!!I

Youre going to have your hands full with a new baby, the last thing you want to be worrying about is your bowels. I have been told I sometimes glorify having a stoma, I'll be the first to hold my hands up and say it's a big op to get over but I honestly felt so much better immediately after mine as the majority of my diseased bowel was gone and once I'd recovered from the surgery the quality of my life was so much better than before. If that's glorifying it them I'll continue to be guilty of that. Yes you probably will have to contend with the occasional bag leak and possibly some sore skin underneath the bag but all of that is easily dealt with and once you've found your perfect bag these issues become few and far between.

Feel free to ask any questions.....nothing is too rude or too personal. I've been there so I know what you're facing.

All the best
Rogalin x

Re: Surgery options - your advice please!

Posted: Wed Mar 21, 2018 10:17 pm
by mybigredbum
Hi Rogalin,

Thank you SO MUCH for your advice (sorry my initial post has disappeared - it's being moderated because I added a link to my blog at the bottom: am in the process of serialising my diary to share my experiences).

I read your reply out to my wife and both of us were really touched by your positivity and honesty.

We are in a bit of a unique situation (to say the least) because we are both mummies! This means that an additional consideration is fertility/fecundity with the panprocto approach (as I would love to have a turn at being the 'biological' mum, but my surgeon seems to think if we need to go for IVF anyway then even if scar tissue affects things I down there I should still be as likely to conceive as a 'normal' person).

So, a big decision to come. But your advice makes it just that little bit easier, so thank you.

x 8)

Re: Surgery options - your advice please!

Posted: Sat Mar 24, 2018 8:33 am
by rogalin47
Huge apologies for assuming you're a guy :devil: You know what is said about assume, u made an ass out of me!! I should have said congrats on impending parenthood.

Grovelling over, I hope I helped just a little. Whichever route you go down its a big op but once it's over you can get your life back on track. I'm off to the theatre with my daughter tonight.....couldn't have done that in the old uc days. I'll empty my bag before I go and won't think about it again until I go to bed. I can sit and enjoy the show with no thought about badly behaving bowels!

I can't offer any advice re future pregnancy as I had my children before my surgery but I do know of several ladies who have had kids after their ops. You could join the Ileostomy association forum and seek advice on there, it's a forum for people with Ileostomy stomas and internal pouches and is jam packed full of advice and support and has some pretty amazing people on there who are always happy to help.

Rogalin x