Left in a state of confusion after visiting surgeons!

[FrankieFredericks]

Long story short, I am 21 years old, and have a small stricture in the small bowel around the ileum after many years of repeated scarring from crohns disease.

I've recently (3 months ago) started a course of aza, I can't tell if its helping yet as apparently it can take many months to start to work properly so have not paid much attention to that as of now.

I recently spent a week in hospital at the start of May due to the stricture getting obstructed, this usually happens when I'm somewhat less strict with my diet (I stick to a low fiber diet for the most part).

I see the gastro team every few weeks and they always without fail tell me that I need this surgery ASAP and proceed to get the process of surgery underway, in my hospital (well in any NHS hospital) it goes Gastro team - Surgeons to confirm - Surgery..

Today I got to see the surgeon who is going to do the operation and remove the stricture, the first thing he said to me is that I DO NOT need to rush the surgery as all my vitamins/proteins/minerals are sound, while this may seem like good news to anyone else.. It has left me somewhat in no mans land.

He said that I should wait for as long as possible before having my first surgery and to simply wait it out seeing as I can live a normal life (ish) with a controlled diet..

The most confusing thing is that this exact same process has happened before!! The Gastro team have referred me to their surgeons only for the surgeon to tell me that I need to wait it out and that there is no need to plan or rush any surgery.. This is the 2nd time it's got as far as this.

I am so confused its unbelievable, like I said I can live a normal life providing I eat boring food, I try to keep fit by lifting weights and running ect..

How bad does it have to get before I need surgery? Do I need to be begging for it? (He did say he could get the stricture removed within 2 weeks if the need arises)

This is so confusing, I suppose in part its relatively good news, I sensed no concern with him whatsoever, he just kept on saying the same thing "There's no rush, you've got a small stricture, wait it out".. And I felt like saying, "yeah thats all well and good, but how long do I have to bloody wait!"

Ah well, this is more a rant than a question sorry guys, just hope someone can shed some light on this for me!

Cheers all

 

[shamrock15]

At this point if you are getting repeatedly hospitalized for partial obstructions due to scarring, I would be in favour of getting it yanked, especially if it is a small section. Why put up with the extra admissions? Aza won't get rid of the problem but may help prevent future occurrences. If it is a small stricture, you won't lose too much when it gets resected but will gain peace of mind. The hospitalization for surgery if it is done open is about a week and you will need a couple extra weeks to allow muscles to heal up. If it is done laparascopically the recovery is quicker. It may be a bit longer than your next admission for an obstruction. Given what you are saying, you will have another one so you may as well get that issue taken care of.

 

[Justanothercp]

To surgeons it isn't emergent, ie your bowel isn't bursting in the next hour. But with repeated obstructions it can be come emergent, and you don't want that. Also, I'm sure quality of life is an issue for you at this point.
I had a bowel resection, and I wish I hadn't waited so long. If you need it, why wait and risk perforation.

 

[Layla]

I understand your frustration. I was in the same position, hospitalised for a week due to an obstruction which lucky for me didn't end in an emergency op but I was pretty sure the next one would.
I then walked around for another 2 months really only being able to take liquids, on 60mg of prednisone and aza neither of which did anything for the strictures at all, until I pushed for the surgery to happen. To me it was a quality of life thing, not being able to eat was really getting to me and I felt I was a walking time bomb, just waiting for emergency surgery which everyone was telling me I really didn't want.

Despite all that I think I still wouldn't have had the surgery if I hadn't said I wasn't prepared to go on like I was. No idea what we were waiting for, and no one could answer that question. I felt like my life was on hold and I couldn't plan for anything and that's not how I wanted to live.

I'm very happy I had the surgery as I can eat again! Still not everything as there was more inflammation that expected and he didn't want to cut any more out, but at least I don't feel like the first badly chewed piece of food will land me in hospital.

So if you feel this is not how you want to live and you're worried about needing emergency surgery the next time you have an obstruction I would advise to tell the surgeon that and see what he says and go from there.

Good luck!

 

[FrankieFredericks]

I understand your frustration. I was in the same position, hospitalised for a week due to an obstruction which lucky for me didn't end in an emergency op but I was pretty sure the next one would.
I then walked around for another 2 months really only being able to take liquids, on 60mg of prednisone and aza neither of which did anything for the strictures at all, until I pushed for the surgery to happen. To me it was a quality of life thing, not being able to eat was really getting to me and I felt I was a walking time bomb, just waiting for emergency surgery which everyone was telling me I really didn't want.

Despite all that I think I still wouldn't have had the surgery if I hadn't said I wasn't prepared to go on like I was. No idea what we were waiting for, and no one could answer that question. I felt like my life was on hold and I couldn't plan for anything and that's not how I wanted to live.

I'm very happy I had the surgery as I can eat again! Still not everything as there was more inflammation that expected and he didn't want to cut any more out, but at least I don't feel like the first badly chewed piece of food will land me in hospital.

So if you feel this is not how you want to live and you're worried about needing emergency surgery the next time you have an obstruction I would advise to tell the surgeon that and see what he says and go from there.

Good luck!

Yeah that is exactly how I feel, I am so paranoid about every piece of food that I put in my mouth! It's no way to live, I cannot enjoy holidays or time away with my girlfriend.

The surgey will be keyhole as its my first ever time, I'm looking to have it within the next year certainly, I'm just in the middle of a bad flare right now, and I cannot for the life of me see this surgery process getting underway! Its like the gastro team and the surgeons are playing tennis with me, back and forth back and forth!

 

[Mehita]

I think the longer you wait, the higher the risk of having a complete obstruction and it becoming an emergent situation. When my son had his stricture, our thought was do we want this to be a well planned out surgery on our schedule with our surgeon or an emergency surgery with little to no control? If your GI thinks you need it ASAP, I'd be more inclined to follow their advice than the surgeons.

My son had a stricture in his small intestine that had built up from scar tissue. He ended up in the ER and had surgery a week later. Best. Decision. Ever. He got his life back, was back in school, back to playing sports, back to eating a normal diet. I regret not doing it sooner! All the days of his childhood he missed while being sick...

And like Shamrock said, Azathioprine isn't going to do anything for the stricture. If anything, if it doesn't work for you, it could make things worse as you wait for it to work.

You're not a tennis ball. You're a human being, who is unwell at present, but could be feeling so much better. I say push for the surgery.

 

[Layla]

Mine was key hole as well, wouldn't have been if it had been emergency surgery, another reason to push for surgery!

I told the surgeon how I felt and he said alright then, how about next week? Needless to say I took the slot if only because it gave me very little time to worry.

I'm now planning a holiday and my life feels more like my own again, so have another chat to the surgeon and go for it!