Only me....

[Funlovinpikey]

I'm sure like most, but the bloatedness, Pain and at times agony is doing my nut. I've been off work for 4wks and have further blood tests tomorrow before an appointment on Tuesday. Currently in pred and buden but I've got a 70cm stretch of my large intestine that's quite badly inflamed. Tuesday could be a 'try this' or 'remove this'.....I just have no idea which. He has suggested injections (2 types) or operation although he prefers to refrain from operating at the moment.

Anyone's thoughts on how they deal with it, what procedures or med has helped and specifically those that have had LI removed, did it help?

Thanks Peeps,

Pikey

 

[Funlovinpikey]

(and yes....I'm new to this forum!)

 

[Astra]

Hiya Pikey
and welcome

Maybe the injections he's talking about are the biologics - Infliximab (Remicade) or Humira?
We have a Remicade Club and a Humira Club on the forum, lots of info in there for you.
If it were me, I'd try one of those before surgery, unless it was an emergency or life threatening.
I've not had any Crohn's surgery so can't help there, but loads on here have, they'll come and advise.
And are you a pikey? :wink:
lotsa luv
Joan xxx

 

[Funlovinpikey]

Hey Joan,

Thanks for the response, it's really the first time I'm opening up and talking about it. My friends and family all see me suffers and like most have my best interests at heart, but they understandably can't appreciate what I'm going through, even if I look well.

I'll take a look at the forums and no doubt pose more questions and meet new peeps/crohnies.

On the last question, my answer is 'do I look like one?'.....that should clear things up. If it doesn't.....no I'm not. Just a nickname given at uni that stuck and probably will until I'm six foot under. Not the best, but pretty unique I have to admit. You should be out with us for drinks/food/fun, the looks I get are quite funny when people overhear.

Paul x

 

[Grant]

Hi Paul, Bowel surgery is not straightforward sadly. All the tests in the world wont allow the surgeon 100% to know exactly what he's going to do. Its always been "I have to see when I get in there". That aside surgery can give you an almost instant change in health. Obviously you are sore for about a month & restricted in what you can do. But for some its results in a massive up turn. Did for me 1st time round.
If surgery can be avoided though then great, because obviously the other side is adhesions & more surgery. If I was in your shoes I would try everything to avoid it unless it becomes absolutely essential-which it often does.
Hope you feel better soon
Rgds
Grant

 

[littlefreebird]

hi and welcome to the forum!
i have had crohn's in the LI for 10 years now, surgery was always mentioned to me, i tried a lot of medications and the best one for me was infliximab...it gave me 5 years of complete remission...i agree with the post above, surgery is best avoided until absolutley essential.
i had the entire LI removed & ileostomy surgery 6 weeks ago after a pretty bad flare up, i have to say i feel amazing, had forgotten what it felt like to be this well...so if it ever did come to it, surgery isn't the end of the world.

hope you're feeling better soon! hannah.x

 

[jesseiam2]

Welcome!

I had surgery 13-14 years ago, removed 14 inches right at the junction of the small and large intestine. There werent any options for me at that time due to the damage. I do remember the doc telling me prior that he didnt know what he was gonna do until he got in there and looked around, and when he did, he found a lot more wrong than he knew.

That being said, I had no issues and stayed in remission up until about 4-5 months ago. If you can avoid surgery, do so. Most people will require a 2nd if they have a first surgery. But if you do have to have it, then as stated above, you should see immediate improvement. How long that lasts, is anyones guess. I got 13+ years. Others have had more, and others have had less.

Good luck with whatever turns out!

 

[Funlovinpikey]

Thanks for the feedback all. Sticking on pred at 25mg for next Month or so then reduce. If that doesn't work, remicade by the looks of things. Any thoughts in remicade? I'm checking the dedicated forum too.

Hope all are well!