Operation suggestion

[gracifer]

So i've been suffering from Crohns for the last 18 months (a 'negative' diagnosis because the performed a CT scan on me and found inflammation in my TI-however because i'd had so many tests they didn't want to perform any more), for the last 9 months I had a believed fistula from my bladder to the bowel but it seems to have closed up before they could do anything about it (NHS waiting times are so long!) I'm basically seeing 2 guys at the moment, one to deal with my 'fistula' (who performed a colonoscopy etc on me about a month ago) who I was referred to from my basic doctor and one in London (University College Hospital) who I was referred to by my Crohns doc. I finally had my appointment in London yesterday, which we thought was to discuss my fistula, so I thought i'll just tell them that my fistula seems to have closed up and hey ho, off we go.
However, he was very keen on me having an operation, after ANOTHER MRI to remove the diseased part of bowl, saying because i'm healthy its better then being ill again. However, there is, or so he told me, a 50/50 chance of it coming back and most people need an operation within 7 years. I know my crohns isn't in remission, i have random vomiting bouts, pain occasionally (he pushed down on my guts hard, told me I had a hard part which could be due to the 'policemans flap' or the inflammation in my stomach and today its really painful, but then it could also be due to the fact I stressed myself out big time or I ate pear yesterday (something my crohns isn't too keen on) but I'd rather have bigger odds then that. Has anyone had this done? has it worked? or should i hold out for the 2nd opinion of my other surgon who did the colonscopy and see what he says? I remember my Crohns doc did say that they don't want to operate for operations sake. But if it means getting my life back then i'll happily snatch it, however whats the chance it might come back, say in my Large Intestine which is clear at the mo?!

Sorry its very long!!

 

[archie]

Hi Gracifier, I had 2 differing opinions regarding surgery and it can be very confusing. No-one can look into the future so as to wether it'll come back or not is impossible to say, but it is a chronic condition so chances are it will. That said many people have years of remission post surgery. I ended up having elective surgery due to not responding to meds after a perforation and abscess and everything went well and according to plan and so far so good and I have felt well since. I am so glad I had surgery now as I hate the thought of being on strong meds for a long time. Research it and speak to the other doc and hopefully you'll know what to do. Good luck

 

[Terriernut]

Hi Gracifer! What meds do they have you on these days?

I remember being in hospital half dead and Dr's and surgeons arguing over my bed about surgery or not. They all looked like a bunch of black crows. I ended up getting up, and walking away from them. (thankfully I was still mobile and knew how to unplug my IV, boy did they not like that!)

Differing opinions all the time in the medical profession. Not good for us. I agree that having surgery while you are still healthy is always the better option. But it shouldnt be the first option if there are other things to do. If you have scar tissue causing a stricture, that isnt going away, only surgery will correct it. Is that what this guy is saying? Is he certain it's scar tissue, or is it inflammation?

 

[gracifer]

Hi Terrienut!

Oh my that sounds awful!!

I'm on 4 pentasa a day. 2 morning and 2 evening.

He didn't even mention a stricture, just my stomach was a little hard down there, which could be down to scarring / inflammation or this policeman's flap, which i suppose is why he wants me to have another MRI. He just seemed very keen to remove my diseased bowl.

 

[Terriernut]

If you are only on pentasa, you will likely have inflammation. I was only on pentasa when I had my lovely perforation. I think Azathioprine or 6MP would be a next step up to try and keep you in remission. Maybe some Entocort to get the inflammation under control for right now. Since yours is mostly upper bowel, the entocort should work a treat, without alot of the side effects of pred. At the same time starting aza or 6mp for maintenance.

THEN, after you are under control taking a good look again to see if you need surgery. Thats just my opinion. I am not a Dr or I wouldnt live here in Dunstable would I??

 

[DustyKat]

Regardless of whether you will need surgery down the track it should still only be done now because you need it done now, whether it be due to failed treatment or quality of life issues. Planned surgery is always the way to go over emergency surgery but with a diagnosis and monitoring by yourself and the doctors you should hopefully be able to avoid being in that emergency situation.

You still have loads of movement when it comes to medication as you are on the bottom rung of the ladder with Penatsa. I would be a seeking at the least a second opinion. I would not go to a surgeon for a second opinion but rather I would be seeking the opinion of a GI. Surgeons are very good at what they do but they are not the people to see for ongoing management of your Cohn's. If surgery is needed your GI can tell you that and refer you on at the time.

Dusty. xxx

 

[gracifer]

@Terriernut Well I was on pred for 8 months from Feb - Sept last year.. Haha. I'm sure Dunstable is a lovely place to live...

@DustyKat - Thank you. I'm going to see if there is such a thing as GI's in England, as I've never heard of them. I see what your saying, and yes, what makes it ultimately more confusing is that my crohns consultant, the guy I was given after being diagnosed told me surgery was the last resort, however I don't want to have to go in for emergency surgery.

 

[DustyKat]

The Crohn's consultant you saw would be a GI or gastroenterologist.

Surgery is generally considered a last resort unless complications dictate otherwise. Both of my children have had surgery...my daughter had emergency surgery but she was undiagnosed at the time and my son had planned surgery due to complications. It would be on the rarer side to require emergency once diagnosed if you are well monitored by your GP and specialist.

When you say your stomach was a little hard down there, where is there?

Dusty. xxx