Advice needed!

[Misty-Eyed]

So this morning I had a soluble water contrast enema to look at my fistula and at my strictures in my colon. The radiologist said that she couldn't see the fistula well on it and that investigative surgery may be needed to look at it in more detail.

So right after I had an appointment with my GI. She looked at the images and said that the strictures in my sigmoid colon didn't look good and that I may also have one over the other side. A previous colonoscopy was unable to get through the first stricture to see what else was going on in my colon. So she also said about having investigative surgery to see if they could get a guide wire through and to see what's going on. I asked if they'd look at my fistula at the same time and she said they would.

But then I asked what would happen if they were unable to get the guide wire though and she said they'd probably have to do a resection there and then with a possible 30% chance of me having a stoma.

This is all very well and good, but I'm feeling more well then I ever have, ever! I can go out running and lead a normal life and can even leave the house for an entire day without feeling like I need to go to the toilet. It's like a whole new me and I'm wondering if surgery is really needed. I'd be worried that I'd go to sleep and not have any idea as to what kind of state I'd be in when I woke up.

Obviously I'll wait to see what a surgeon thinks after looking at my notes and tests, but what would everyone else do in my position? And how would I even have a say in what happens to me if I'm under while they find out what's really going on? This has come as such a blow

 

[Astra]

Aw Misty! That's quite scary
If it was me I'd wait it out, speak to surgeon and talk thro all other options first! The very fact that you're not at death's door, in intensive care etc would make me want to hang on to my insides a bit longer!
There are so many other options such as the biologics to try before surgery, IMO
Take it easy hun
xxx

 

[Misty-Eyed]

Thanks Astra. I mean I do look really ill from the x ray images and the colonoscopy pics. On the x ray, the stricture was really long and looked like a strand of hair. But it doesn't make sense that i'm feeling so well. :/

I found out about the strictures in 2005 and had infliximab which didn't work and then methotrexate, which worked but then damaged my liver. I think I might ask about adalimumab again. Anything must be better than surgery.

 

[BLM]

Hey Misty, I underwent a exploratory surgery expecting resections...and I was lucky enough to wake up and go home!! It wasnt as bad as they thought and they were able to get in and out without cutting me up. I hope and pray for you that things look up....just try and stay positive....I know easier said than done!! Hugs!!

 

[CDDad]

Hi Misty-Eyed,
This is strange, a stricture so tight that they can't pass a scope through, yet it is not bothering you in everyday life. I agree with Joan, if you're feeling well enough to go out running, then I would avoid surgery and work on it with medication.

If the doc says there is a chance of a colon rupture in that area due to the stricture, that is a different story. Also, is the fistula bothering you?

 

[Misty-Eyed]

Thank you, BLM. I can only hope that I'll be as lucky as you were!

CDDad, it first happened in 2005 when they couldn't get the scope through. They tried with a children's camera at the time too. At that time I did used to get really blocked up and took a year off work. Although after they found it and I started on a low residue diet and the methotrexate, I was feeling much better again.

I've had crohn's since I was 9 and so I'm really not even used to feeling this well. I just got a new graduate job and am excited to FINALLY start my career. Plus exercise is a whole new and amazing thing that I've started. So yes, it doesn't make any sense that my tests show something completely different. They couldn't even get a guide wire through the stricture and it's longer than it was before. She didn't mention anything about chances of a rupture outside of exploratory procedures. Although they do know that the only medication I've not tired is Humira, so maybe that's why she mentioned surgery.

In regards to the fistula, it's an rectovaginal one that I've had for about 10 years. It's mainly just embarrassing with not being able to control gas, but recently it's been leaking a bit more and I'm worried about infections in the future.

 

[BLM]

Hey Misty, after re-reading your post, I think you should hang on....if your not really sick and "needing:" surgery, then why go there. Have you tried Prednisone, I know it helps for some of the issues you talk about. I dont think I could volunterly sign to be cut open in a time of such success in my life if I didnt absolutely have to have it. You can only assume things could...and will for that matter get worst and you will have to have things taken care of, but maybe not yet. I wish you the best, thats a hard choice to make.

 

[Misty-Eyed]

Haha yes I have. I was on it for 7 years from my diagnosis. They couldn't get me off it and I ended up with osteoporosis, so that's a no go!

But thanks for your wishes. Think I'll just have to wait and see what they say when I go back again and then argue my case against surgery!

 

[AbdoAlien]

maybe you could get a Ct colonography done? They're not as invasive as a scope, and should be able to help identify issues after the stricture...although sometimes they can be painful from the air they have to put in, some places don't use sedation...good luck!

 

[Misty-Eyed]

The radiologist that did my contrast enema did ask if I'd had a virtual colonoscopy before.. so it may be on the cards. I really can imagine it being painful though. Having a barium enema was bad enough.