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12-01-2015, 08:21 AM   #1
Grumpy
 
Join Date: Dec 2015
Location: United Kingdom
Surgery Options

Hi All,

I'm a newbie so should do a little intro.

Crohnie since 84 (the year not my age), 3 bouts of Crohns - 3 surgeries...

...which makes you wonder why I even try meds. But for the past year I've had huge doses of azathioprine, budesonide and infliximab but still can't shift what seems to be a (well two) lovely fibrotic strictures which reduce me to eating a small bowl of cornflakes in the morning with any 'lunch' or 'dinner' dependent on how much pain I'm in.

Anyway, staring down the barrel of another surgery/resection, I'm trying to find out about options such as balloon dilation and strictureplasty. Does anyone know what determines when these might be good options ? Also, has anyone had a resection done as keyhole/laparoscopic...I'm kind of bored with open bowel surgery.

Any help, appreciated mucho...otherwise I'd be relying on medical professionals.

It's another Ensure Christmas for me.
12-01-2015, 08:43 AM   #2
scottsma
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Location: Tynemouth, United Kingdom

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Hi and welcome to the forum.I can't help you regarding your questions but there are lots of people on here who will be able to help.Of course those in the USA are just getting up,and those in Australia/New Zealand are just going to bed,so hopefully you'll get someone local looking in soon.I just wanted to welcome you,this is THE best crohnie forum ever !!!
12-01-2015, 10:40 AM   #3
ronroush7
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Welcome. There are a lot of supportive, knowledge, caring people here. I myself have only had the one resection so far. If you get the chance you might want to share your story on the section called Your Story. I hope you get dome answers soon. Let us know what happens.
12-01-2015, 04:41 PM   #4
worriedboy
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If your Crohns is located in the small bowel, as I understand it is, I doubt a dialation would be an eligible option for you, unless you got the stricture is located in the terminal ileum, not very long, and you got a doctor who is willing to try; you should ask your GI if this is an option worth talking anout at all.
A strictureplasti sounds a good idea to discuss with your surgeon since you already had a couple of sugeries (were they all resections ?) ...

I wish you good luck and better days with better health; you deserve a better meal then a bowl of cornflakes.

Where are you currently standing with this ? Are you having doctor appointments etc. to determine the strategy ?
12-02-2015, 04:10 AM   #5
Grumpy
 
Join Date: Dec 2015
Location: United Kingdom
Thanks for the responses and the kind words of welcome.

Ron, I might post a 'Your Story' but a long email to my GI nurse is on my list for today and I might need a lie down after that.

worriedboy (if you've survived a bit of Crohn's I'm not sure that there's much else life can throw at you to be worried about ) , thanks for the response.

Previous surgeries : I had a hemicolectomy (at the terminal ileum) 30 years ago and have had two revisions at the amnioste amenio amneo site of the surgery since. I'm now working my way through getting rid of my transverse colon so it shouldn't be too hard to access - a long drinking straw would probably be enough. Thing is, I read alot about these techniques but mainly from people in the U.S. of A. but my medical 'team' don't seem to be able to enlighten me.

I have an appointment in 2 weeks with a surgeon (which will be 5 weeks since 'we' gave up medical efforts but not being able to eat, chronic pain and a high probability of obstruction or perforation doesn't, reassuringly, seem to be serious these days) so I'm trying to get the gossip on fancy surgeries.

The occasional small, bowl of cornflakes might not seem much, but since it's a year since I had what any normal person would call 'a decent meal' and the alternative is Ensure, it's often worth the pain it causes.

I must admit a few beers, a curry and an emergency bowel resection in the morning is starting to look pretty attractive to me.
12-02-2015, 07:23 AM   #6
ronroush7
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Thanks for the responses and the kind words of welcome.

Ron, I might post a 'Your Story' but a long email to my GI nurse is on my list for today and I might need a lie down after that.

worriedboy (if you've survived a bit of Crohn's I'm not sure that there's much else life can throw at you to be worried about ) , thanks for the response.

Previous surgeries : I had a hemicolectomy (at the terminal ileum) 30 years ago and have had two revisions at the amnioste amenio amneo site of the surgery since. I'm now working my way through getting rid of my transverse colon so it shouldn't be too hard to access - a long drinking straw would probably be enough. Thing is, I read alot about these techniques but mainly from people in the U.S. of A. but my medical 'team' don't seem to be able to enlighten me.

I have an appointment in 2 weeks with a surgeon (which will be 5 weeks since 'we' gave up medical efforts but not being able to eat, chronic pain and a high probability of obstruction or perforation doesn't, reassuringly, seem to be serious these days) so I'm trying to get the gossip on fancy surgeries.

The occasional small, bowl of cornflakes might not seem much, but since it's a year since I had what any normal person would call 'a decent meal' and the alternative is Ensure, it's often worth the pain it causes.

I must admit a few beers, a curry and an emergency bowel resection in the morning is starting to look pretty attractive to me.
No rush on posting it in Your Story.

05-18-2017, 03:17 AM   #7
rorho19
 
Join Date: Mar 2017
Location: london, United Kingdom

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I think the key determinant on balloons is if the strictures are fibrotic..they should be able to tell this from the wall thickness on an mri scan. Then again maybe an endoscopy would be worth a try first even if they cannot use a balloon to help them know whats going on prior to surgery.
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