when do you know Imuran has failed?

for those of you for whom Imuran "failed," how long did you stay on it before reaching that conclusion?
how did you know it had failed?
is it a failure if you have to regularly use steroid enemas?
what constitutes a failure, exactly?
thanks

I was on the sister medication, 6MP. It was at the 1.5 year mark that I considered it a failure. It's a failure if it doesn't get you successfully tapered off of prednisone. That should happen within 3-6mos of starting the immunosuppressant. A failure is controlling UC with prednisone. Prednisone should not be used long term (over 4 months).

Sue

Good question and I don't think I can answer it. You are absorbing the steroid enema but to what degree I am not sure. Best to ask your GI for the specifics.

Sue

I guess to me it would be if you have been taking it several months and seen little or no improvement, raised the doseage and gave that a fair try as well and no improvement.

sue - this may be an absurd question since it is completely hypothetic and irrelevant, but..... if remi had been available when Imuran failed you, do yuo think you would have tried it?

also, 6 years after your surgery, how is your quality of life? how many times a day do you go to the bathroom? I have heard that after surgery the system gets a new rhythmn, and that even though it is a lot better than flaring UC, someone who has had surgery may still never go as few times as non-IBD people.....

I have been thinking more and more about surgery lately (as if you can't tell, lol.....) and I have always thought you sounded very level-headed from your posts, so any thoughts on pro/cons of surgery would be appreciated. thanks

If Remicade had been available I probably would have tried it because I was desperate for remission and willing to try anything. I really did not want surgery. In hindsight I am grateful that Remicade wasn't available. It would have been too new of a drug to fully understand the long term effects. As it was I was worried about the long term effects of both prednisone and 6mp (6mp has since been proven safe).

It's now 7 years later and I have never looked back nor ever regretted my decision. I honestly have no idea what my frequency is, it does not seem to get in the way of my life. I am a long distance hiker (100-200) miles and don't seem to take bathroom breaks more than my peers. Most of the time I use the restroom it's because I have to urinate. However, often times the pouch empties at the same time. With a pouch there is no pain, no urgency, and no prolonged restroom visits. To empty a pouch is as quick as to urinate and most often there is no odor. I may go more often then I did with UC but I spend less time overall in the bathroom. I am also healthy!

As with any major surgery there are risks. As for this surgery the recovery is long, about one year. That's not one year of doing nothing, I returned to work 3 weeks post surgery and continued to get back to hiking. But I was fatigued in that year, had severe joint pain from pred use, and had the pouch adaption to go through. Life is not perfect with a j-pouch, or ostomy, or k-pouch, but life is so much better than living with chronic disease. If you are thinking of surgery I would recommend you get a consult from a top knotch CR surgeon who has lots of experience. Ask to speak to several of his/her pouch patients. Honestly it wasn't until I met my surgeon that I could comfortably make a decision.

Looking back, if I had known what I know today, I would have opted for surgery after the first year of my refractive flare. I sometimes get angry that I lost 2.5 years of my life being sick and taking 22 pills per day. Since surgery I have not seen my GI, or been ill. It's really amazing to be healthy.

Sue

Hi Sue - Thanks for your detailed and thoughtful post. I really appreciate it.
I actually do have a surgical consult next month, with a top CR surgeon at the GI clinic at UNC-Chapel Hill. I believe he has done about 700 colon removal surgeries, and he is doing 1-step j-pouches laproscopically (though I don't yet know how many of those he has performed and will ask him that). I am not sure where I am headed with regards to surgery... I just know my quality of life needs to improve, and because I have not yet had my kids (I am engaged right now so we are thinking about it a lot), and because I am generally concerned about the long-term implications of remi, I am thinking of surgery instead of remi. Remi may not be a good option for me since you can't get pregnant on it and since I, personally, feels that it leads to a cycle of always being a first-generation user on a new/powerful drug, which is something I am uncomfortable with.

if you don't mind, would you give me some ideas of questions that you, personally, think are important to ask a surgeon. Obviously I will do more research, but any thoughts you have would be great.

by the way, where are you located? where did you have your surgery? how did you pick your surgeon?

thanks again for taking the time to answer my posts. It is so helpful and meaningful to have the opportunity to solicit your opinion since you have been through this already.

if it is easier, I could email you.... I checked for your email but it is listed as unavailable in your profile. if you would prefer that, please let me know and I will provide you my email address.

Oh, and most importantly, according to my surgeon one of the best reasons to have surgery is to regain quality of life. I know sometimes, having been chronically ill, we can rationalize our health and we can get used to having more and more life taken away from us. It wasn't until I accepted the fact that I had a very low quality of life and that it was reason enough to have surgery. It helped me to understand that I would get a better quality of life than I was living. It was a lightbulb moment for me!

Sue

I had the traditional 2-step surgery, so yes in 1.5 hours I had my colon removed, my j-pouch constructed, and my ileostomy placed. It was fast but experience leads to shorter surgery times, barring complications, of course. I asked for a 2-step surgery and the reason was I was so tired of being sick all I really wanted was to feel well. I had my ileostomy for 8 weeks between surgeries.

For many less experienced surgeons, surgery is in the 4-8 hour range.

Sue

Your surgeon sounds as if he/she has lots of experience, I wouldn't necessarily shop around but I would recommend that you go to www.j-pouch.org and ask for surgeon references in your area so that you have choices and personal recommendations. I don't think it's necessary to go to Stanford (they get low marks for this surgery) and feel that your current surgeon might fit the bill. Laprascopic surgery takes longer than the traditional but the recovery is supposed to be faster. It's hard to compare my surgeon with others, he's been performing this surgery since 1988, he should be good at this point!

Sue