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scared to stay on meds, scared to quit...what to do?

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Ulcerative Colitis
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Posted 10/14/2010 1:25 PM (GMT 0)
Hi everyone! At my last GI visit we talked briefly about going off Imuran- I'm doing ok with just the Humira & Asacol, & have been on immune suppressants & a biologic for about 3 1/2 years now. Long-term use of the 2 together is not good, as we all know. But... I'm scared to go off Imuran. I've tolerated it well, have not had ny major life-threatening infections (well, one back in '07), & truly feel the Imuran has done more for me than any of the biologics I've been on. But, with winter coming, & cold & flu season here, my usual paranoia kicks in. Scared of every germ, bug, virus, etc. I've been feeling rather crappy the past few days, & am pretty sure I'm fighting off a cold. A lot of my co-workers have been ill the past week or so, I jusy got my flu shot yesterday, & did a Humira pen this AM. So I'm at a loss- I pretty much decided this AM to go off Imuran, & let the chips fall where they may. If my UC worsens, then I'll know it's nothing left for me but surgery. Or, should I opt to quit the Humira & just stick with Imuran & Asacol. I just don't know... what would you all do in my shoes? Stick with current meds, quit the immune suppressant, or quit the Humira? I have another GI appt. in a few weeks, & am sure the topic will come up again. Help!
Posted 10/14/2010 1:30 PM (GMT 0)
Are you in a full remission? I know quality of life may be more important to you than that, but if you're not then I would quit the Imuran and see what happened. This is because the long term risks of inflammation probably mean surgery anyway so it's not worth risking (another) cancer by continuing joint therapy in my opinion. It's a hard one. Good luck.
Posted 10/14/2010 2:24 PM (GMT 0)
My understanding is that both Imuran and 6MP are safe to take at the low dose UCers take. The risk of infection is much lower for us than it is for those taking those drugs for cancer at a much higher dosage. Also I know that 6MP has been proven fairly safe for long term use. When I was taking it in the 1990s my GI said that I could be on it top, for 5 years. In the early 2000s research came out showing that it is safer than originally thought. So you might talk to your GI about how long you can stay on it. If I were in your shoes I'd be far more frightened with Humira.

Sue
Posted 10/14/2010 4:41 PM (GMT 0)
I'd discuss surgery with the GI....
q
Posted 10/14/2010 6:35 PM (GMT 0)
I have discussed surgery with the GI & a colorectal surgeon many times over.... but always chickened out. I am not in remission, by any means- I do pretty well, day to day. Most days, that is- there are the bad ones every week or so, for example- Monday- 3 accidents, one while at the mall! I've adapted to this, so it's "no big deal" for me. But I also realize that mindset is a little warped! That's what gets me, the worry without true remission, not really worth it. For some reason, the immune suppressants worry me more than the biologics. I think taking them in tandem is what worries me most. I have 2 options, really- keep muddling on the way I'm going & hope my UC fizzles out as I age. Or surgery. I can live with both, truly! I have a CPE with my PCP coming up in a week or so, & plan to grill him about the immune suppressants, long term use, possible dangers, etc. I figure I can get a more objective opinion from him. Then I have a GI appt. a couple weeks after, so hopefully I'll have made up my mind by then.
Posted 10/14/2010 7:04 PM (GMT 0)
Oh Eva Lou. Three accidents in one day? How can you get used to this? And this is on immunosuppressants and Humira? Fortunately, I only had a couple of accidents the whole time I had UC but I hate that you have to live like that. Sounds like you just accept it. It's almost like you don't realize how much better life can be. I never got to the Depends/port-a-potty stage but I truly don't understand why people would live like that when surgery is available. I can honestly say it's not that bad. I've had a few rough days but even having the temporary bag is much better than I thought it would be. If you do opt for surgery someday you'll probably want to slap yourself and say why didn't I do that a long time ago. If you do ever want to have surgery, schedule for as soon as possible so you don't have time to chicken out. 
Posted 10/14/2010 7:29 PM (GMT 0)
My answer might sound a little confusing but here goes anyways.  I would be more inclined to take asacol and Imuran long term than use the biologics long term because they have a longer safety record.  6MP and Imuran have been used to treat UC for decades whereas biologics have really only been used to treat UC for the last few years.  However if you having accidents I believe that your UC may be worse than thought.  I am taking Imuran and my UC is in remission right now.  Full remission.  I go once or twice a day with no problems doing things all day long.  I don't really think about bathrooms anymore.  If I was in your position I would seriously think about surgery.  If the Imuran would fail me I think I would go on Remicade/Humira and if that failed me I would seriously think about surgery.  What did your last scope show in terms of your colitis?

MyUC

Posted 10/14/2010 8:09 PM (GMT 0)
EvaLou,
I'm sorry you've been dealing with this! Have you done a pubmed search on imuran and looked over the research? It might be a good idea to review the recent research so you can judge what you're willing to risk (if you haven't before). There's quite a lot that is known about azathioprine and a lot written. We were told that if a patient reaches remission on it, they will take them off in 3-5 years and maintain them on the ASAs. The lymphoma risk with azathioprine is increased four fold and increases with the length of time it's used for and there's an even bigger risk from immunosuppression itself (as well as infections to boot!). You probably know all of this stuff. But since it didn't put you into remission AND you're using combination therapy with the biologics with all of those additional risks and still not near remission, I'd get off personally. Having said that, of course surgery is a very scary prospect. What's your GI's advice?

Post Edited (killcolitis) : 10/15/2010 2:50:35 AM (GMT-6)

Posted 10/15/2010 1:59 AM (GMT 0)
my surgeon was surprised that i had been on immuran/6mp for so long, he said tops five years,but he really thought three was the most it should be. I was on it for about 8 years.
I was ok with them, until i was in the hosptial one time and the nurse handed me the meds and said, do not touch these. And i said, why? and she said, you are not to touch these pills, put them in yoru mouth and swallow them, don't let anyone else touch them. and so i asked the pharmacist and she said, really its dangerous to actually handle them, although that usually applies to the higher doses for cancer.
Posted 10/15/2010 11:40 AM (GMT 0)
If you are taking all those drugs and still aren't in remission, I would say you really need to talk to your GI or a surgeon about surgery. Obviously all those things aren't working and you need to try something else. If you drop the Imuran, you are probably going to get even worse.
Posted 10/15/2010 1:27 PM (GMT 0)
I would be more scared of the humira and I wouldn't like to be on both 6mp and humira. They want to do this with me(remicade and mexotrexate) I don't want to. I have strep throat(my oldest got it) and I've been laying around for days. It is scary. I can't believe you are still having accidents. Knock on wood I haven't had any since starting remicade. This is a tough choice because if you stop the 6mp you might get worse but it sounds like you aren't that good really you've just ajusted.

I understand were you are coming from, you've read my posts, and I'm scared of surgery also. Know you aren't alone. I wish you the best.

How long would you stay on 6mp and huira together, I would be scared. I'm on remicade and I freak out all the time.

Posted 10/15/2010 1:32 PM (GMT 0)
I know, right- 3 accidents! Isn't it crazy!?!? I've gotten used to living like this. And since that bad day, things have been fine. My big thing with surgery is that I'm not a candidate for a j-pouch, due to an RV fistula. Soo... it'd be an ostomy bag. Which in & of itself, I can live with. I worry though, about skin irritation, stoma issues, etc. I am leaning towards dropping the Imuran & seeing how I do- since there realyl isn't anything more for me to try, med wise, if things get bad then surgery is my only option. I suppose I can say at least I've given it my best shot, avoiding the knife! I actually haven't had a scope in about 2 years. Would ask for another though, prior to making any surgery decision. I can only feel that since I'm obviously not in remission, why chance the meds any longer?

Posted 10/15/2010 1:33 PM (GMT 0)
Eva Lou,

Have you thought about a k-pouch?

Sue
Posted 10/15/2010 1:56 PM (GMT 0)
Sue- No, because I live in MA & there aren't many surgeons who do them around here. I suppose I ought to mention it to the surgeon I've met with, & who I would use if I were to have surgery. Plus, I'm more of the mindset of having one surgery, few complications, & having the whole thing over & done with. Even prior to the fistula forming, I was leaning towards a perm ileo- I have pooped enough thru my rectum to last a lifetime, thanks. shocked   It's tough, as I've said I've become used to the ides of accidents, always wear protection, carry extras, baby wipes, etc. So honestly, having one isn't a big deal anymore. It used to mentally wreck me, now I could care less. I suppose I have to weigh the pros & cons- dealing with accidents or dealing with a stoma & possible bag related accidents! Which is worse, you know?
Posted 10/15/2010 2:29 PM (GMT 0)
Eva Lou,

I think you will find life with an ostomy far superior to life with your wrecked colon/rectum. Accidents are rare after the initial learning curve. I never had one with my temp ostomy. I suggest you pop on over to HW's ostomy site and meet Fish, Churchlady, NASCARon, Summerstorm, etc. All of them have had ostomies either due to UC or Crohn's and all are great examples of living with an ostomy post IBD.

Sue
Posted 10/15/2010 4:33 PM (GMT 0)
Oh I agree! I've conversed many times with the folks on the ostomy forum here- they are great, & really take the fear away. I now know living with an ostomy doesn't prevent you from doing anything! It actually frees you, since you're not tied down to a bathroom. And once you find the right appliances, leaks & such are not common at all. Soo... yeah, I always give a shout-out to the ostomy forum here, the regular posters are very cool.

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