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Hey

Hey Guys,

I new here. My story is well I pretty much had UC since I was around 21, Im now 30. Initially it was pretty aggressive and I had to be alway on prednisone all the time, so they put me on Imuran which worked like a charm, I was on 150mgs ever since. I only had the occasional rough week or two couple times of year but just by watching my diet, resting and using Betnesol I was ok.

This year has been rough, Ive been in a flare pretty much 4-5 months straight and it seems that the Imuran is no longer as effective. So the GI gave me a few choices to ponder over in perhaps the folliwng order of importance.

1) Use a new trial drug called vedolizumab
2)Remicade
3)Surgery

My UC only effects part of my colon but it would have to be removed if we opt for the surgery. Right now Im exploring with VSL #3, its been almost two weeks and I dont feel much difference. So I have to make a decision soon because my quality of life has gone down the drain. The most frustrating thing is Im a fitness freak, so I see my shape and hard earned muscles all go to waste. So I spend hours a each day at the gym exercising and doing cardio as well as spending almost $1000 a month on eating healthy, natural, organic food.....and its all going to waste....as for nothing. Also I will be staring Grad school in January so I hope to find something half decent in time that works.

I guess my question is, is it normal for Imuran to stop working? Also would increasing the dosage be effective? Its stll working I feel but not as effectively as it was for 10 years.. If that is not feasible then Im leaning towards Vedolizumab. What are your thoughts?
 

Crohn's 35

Inactive Account
Hi there welcome :) I too am on Vsl but it takes 3 weeks on the proper amounts, I take 2 a day. Imuran can peter out like any other drug for Crohns or UC. With VSL, they say Xanifax works together with it very well, I use Flagyl, but little doses here and there, Xanifax isnt here, so cant get it.

Have you tried Humira/Cimzia? They seem to help alot of people. Methotrexate works for some. Everyone is different so you have to find your drug that fits you.

Hope you join our community and share each others medical journies or just fun.

Wecome aboard!
 

DustyKat

Super Moderator
Hi Bizkid and :welcome:

I'm glad you found us. There are loads of experienced and knowledgeable people hanging around here and I see you've already found one! Um, not me, Jett^^^. I hope you stick around and we get to know you better.

Take care,
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Biz and welcome!! You'd be hard pressed to find someone who knows more about crohns/colitis meds than Jett. Read around in the Treatments section on here to find out other's experiences on any number of meds. Good luck!! Hope you stick around!!
 
Welcome to the forums. Yes, drugs can lose their effectiveness. Personally I would try all drug avenues before surgery, but for many surgery has given them their lives back. I wish I had better advice for you but there are many great resources here. Good luck!
 
Hi welcome aboard

I had a similar choice with my current flare
1- permanent illostomy bag
2- ustikimab (sp) drug trial
or 3- vedolizumab drug trial

I went option 3 as I figured the option of surgury will always be there if the drugs don't work

my experience so far has been a good one with the trial
it's been slow going but steady improvements
(until last few days, Ive gone backwards a bit but hoping it's jus a small hicup)

hope ya find the info u need to make the right choice
 

Astra

Moderator
Hi Biz
and welcome

Azathioprine was toxic for me, so didn't work! I hope you exhaust all other meds before surgery, there is Humira too, and LDN, and do you take Asacol? this was specially formulated for UC.
speak to Aussie Rob about the vedolizimub!
hope you stick around
lotsa luv
Joan xxx
 
Hey Guys,

Thanks for the warm welcome.
Jetta: I've been on VSL #3 for almost 2 week, I''ll give it minimum a month before drawing any conclusion. If to no avail then Im leaning towards vedolizumab. The only con is going to the hospital frequently and having to call in each day. However I think it still may be worth it. Ohhh and I read the guide and it seems that there is a a pretty high probability of getting a placebo....so that kinda irks me.
Astra: I used to take a couple type of pills, 9 years ago, I remember asacol was one of them but it went right through me and didnt help. A topical enema like Betnesol does help me a little. So I was on imuran 150mgs for almost 10 years, with the ocassional use of Betnesol when needed. I never took prednisone while on Imuran in the last 10 years. It worked pretty well, I mean I had the ocassional minor flare where Id take it easy for a week or two but no weight loss, anemia, etc. I could live with that. Now Ive been pretty much been in a flare for 4 months straight, so its tough to go from being quite fine almost all the time to never fine.

Did any of you have a similar situation? Did increasing the Imuran to 200mgs or more help or could help? Also for someone with UC why would surgery be a last resort? Of course Id rather not have a ileostomy but my understanding it that they can connect the small colon to the rectum and its not too bad no? To be honest Im not scared of going through surgery per se but its kinda like a point of no return. If something messes up or the disease spreads further into the digestive system then Im kinda stuck. Also any medical breakthrough would be useless for me since I removed my colon.
 
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