Drugs for Crohn's/Surgery

[coachvee]

Hi all,

Once again I'm a newbie - have just made a post in the other forum. I wanted to put another one here as this is a bit of a different question.

I have been diagnosed with Crohn's for a couple of years now. The treatment that I've been given is Pentasa (Mesalazine). I honestly don't feel like Pentasa has ever helped me, I actually think it's made me worse - I experimented with coming off them for a bit and I felt like it helped.

In the New Year I got really bad again so I had all those fun tests again, it was active again so was put on a course of Prednisolone steroids.

They helped for a bit, but I'm now coming off them and I feel like I am back to square one. I had to be off work last week and all.

Basically my nurse said we would try the steroids but that in the long term I may well need surgery - they actualy couldn't get around far enough with the colonoscopy to see what was going on in my ileum (apparently I was 'protesting' a bit much - it hurt a lot! THey used far too much air inside me compared to my first one.) but what they said was if the steroids don't help enough, I'd probably need surgery.

I'm at the point where I'd rather do it, despite the fact those steroids helped me, I just can't be on them long term. They made me really hungry and frankly a bit hyperactive too. THis was pretty good for my productivity at work but just felt... wrong. lol (Or maybe it was just because for once, I felt almost at 100%!)

WAs wondering if anyone had any thoughts, have you had surgery & wished you had it earlier? (I feel like I'd be thinking that!) Any other thoughts?

 

[pennywanna]

Coachvee, you are going thru what all of us had too. I too was on Pentasa and all I got was a burning gut,, I have been on a ton of meds but now I am on Humira, if you are not on any insurance company it is costly and Remicade is the same only costs more. I was supposed to go on Prednisone last Friday but the Humira is working...so far. Prednisone is only for a short period like 4-6 months, the side effects are far worse then the help, sometimes. Yeah, you wish you had the fridge strapped to your side, so you could eat all day. The surgery route (my 3rd coming) is something I may have to endure. I too took a long time for my doc to see my intestines, but finally two months ago, I saw a pic of it and he puts me half out and a "forget" drug. Not all Gi's are the same. Usually most people dont fare well after they taper down. Cheap drug and very risky if you dont take Calcium, but I had 4 kidney stones, and cant take high doses if it. Talk to your doc for options, Remicade and Humira doesnt usually get approved til you have had a wack of meds that dont work. Best of luck, this site is helpful, everyone is here for you!

Penny

 

[coachvee]

Coachvee, you are going thru what all of us had too. I too was on Pentasa and all I got was a burning gut,, I have been on a ton of meds but now I am on Humira, if you are not on any insurance company it is costly and Remicade is the same only costs more. I was supposed to go on Prednisone last Friday but the Humira is working...so far. Prednisone is only for a short period like 4-6 months, the side effects are far worse then the help, sometimes. Yeah, you wish you had the fridge strapped to your side, so you could eat all day. The surgery route (my 3rd coming) is something I may have to endure. I too took a long time for my doc to see my intestines, but finally two months ago, I saw a pic of it and he puts me half out and a "forget" drug. Not all Gi's are the same. Usually most people dont fare well after they taper down. Cheap drug and very risky if you dont take Calcium, but I had 4 kidney stones, and cant take high doses if it. Talk to your doc for options, Remicade and Humira doesnt usually get approved til you have had a wack of meds that dont work. Best of luck, this site is helpful, everyone is here for you!

Penny

It sounds like Remicade is a similar drug to Azathioprine - I just tried to take the latter yesterday and ended up with horrible abdominal pain. (It categorically says to STOP taking if you get that bad pain cause it can be pancreatitis) Soo... yeah back to square 1 with the pred.. >.<

The nurse told me that effectively once you go in there to have an operation, your risk of needing another operation is a lot higher - which is fine, I didn't really realise that - but it's looking more and more like I'll need it

 

[Kev]

I don't know if what the nurse said is totally accurate. I had my last surgery over 2 years ago (Time flies when your'e having fun) and I'm hoping to avoid another. Which means I take my meds, stick to my diet, don't break the rules. Azathioprine/Imuran is more closely related to 6 MP. Remicade, Humira and now Cimzia are closely affiliated.. biologics.. but that is about the extent of my knowledge on them. Surgery simply may be required... if your GI tract gets to the point where there are no options left.. (my case). It isn't the boogeyman most folks assume. My surgery was simple, uncomplicated, and gave me great, altho unfortunately only short term results. some folks have horror stories to tell about operations, my personal belief is those are the exception rather than the rule. all of the ones I've had were much easier to cope with than my day to day IBD life. Not saying you should sign up for the 'Operation of the Month Club', but if your doctors say you need it, then you need it. they aren't working on a quota system.