Good GI visit??????

hi everyone! I saw my GI today for the first time in a while- had my most recent Remicade infusion yesterday. Things are...alright. I have a bad week before & after the infusions, with a span of about 4-5 good weeks in the middle. When I say "good", I mean- approximately 4-6 daily, formed, urgent bm's, blood in some form every day, mucous, & I'm able to go about my business for the most part. With the occasional accident. My bad days are just that, bad.... 10-15 bm's, all formed though, blood, weakness, fatigue, etc. The meds I'm on are doing as much as they can- this is just what I get with them. Which is far better than what I got without them! His concern now is that I'm creeping up to the 8 year mark since diagnosis, & the colon cancer risk. Plus the fact that I'm basically in a constant, low-grade flare- it's never really gone into remission entirely- my current state is the best I've been since diagnosis. My colon has hundreds of pseudo=polyps, so the cancer detection will be extremely tough. I do give him kudos though- he not only talked about (and suggested) curcumin, but gave me some info on probiotics, & suggested I switch to a different brand than Culturelle. Here's the thing- we both feel the Remicade will eventually lose any effectiveness- I've been at the higher dose every 6 weeks for a long time now. I can give Humira a try if I choose too. His thing is, he'd hate to see me suffer for the next 3-4 years, only to have surgery eventually due to a malignancy. I'm just biding my time right now, in a holding pattern- he knows that, & is not pressuring me into surgery. But he has been recommending it for awhile too. what would you guys do? I feel like I'll eventually need surgery, either from a major flare that just won't quit, or a malignancy. It's kind of a downer... all these heavy-duty meds, & I still feel that way??? Why wait, then??? I don't know.. just venting, sort of, no one else really understands.

I'm not qualified to give you advise being newly diagnoses and all. For me though, I think I would elect surgery when I could take it no longer emotionally. I don't want to live my life to ill to participate.
I pray that your burden will be eased.

Sorry that Remicade hasn't helped you to get out of the flare. It's tough having to deal with that, no question. At least your doc was trying to be helpful by recommending another probiotic. I think he is wrong, though, to keep bringing up cancer because you've had UC for 8 yrs. (Also pseudopolyps.) This is HIS insecurity. Granted, you have to get scoped, & you do. The quality of your daily life will guide your decision-making re surgery, I think, because you have a lot of grit, a good sense of humor, etc., that will enable you to sort things out. Best wishes! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

I'd definitely go for the surgery long before exhausting the big gun meds.

I do believe in quality of life, not necessarily using up all my energy till I'm backed into a corner leaving no other choice.

you've already tolerated so much more, and then some, than I would before considering surgery.

The hundreds of polyps would basically scare the hell out of me...enough to say be done with it.

quincy

If I were you, I would have had surgery the moment that I had to increase my Remicade dosage. I'm just not comfortable with taking biologics long-term.

I also would opt for surgery if I were in your shoes. Since you are the healthiest you have been in a while your recovery will be much easier. It's best to have surgery when you're not too ill. I totally understand your hesisitancy though too. I think all of us who have or had UC are accustomed to living with compromises. You say you don't feel that bad but I would guess your life does revolve around UC. Your quality of life may be better than it's been in the past but are you living a life as full as you did prior to your diagnosis? I think you would be shocked to see the difference in your life post surgery!

BTW- I know you are leaning towards a permanent ostomy but have you entertained the idea of a k-pouch?

Sue

Why would you be more worried about taking Humira vs. Remicade? I don't know too much about either drug but I've always thought they were on the same level as far as longterm effects. I see the commercials for Humira/psorisys all the time and I guess that has made my brain see it as less detrimental to future health than it may actually be.

What about LDN? Would that be worth trying? I know you also have the polyps, that makes the decision to prolong treatment that much more difficult. If you will not be able to keep your colon indefinitely, maybe it's not worth risking your health with all these crazy drugs? I hope you figure out the best decision for you. I think surgery could be very liberating, you wouldn't have to worry about pills and you might feel 100% better, it will just take some time and healing.

A slow simmer of constant inflammation can do lots to the system. Remember, autoimmune disease can have another area take up the cause...in other words, join in.

I'd not want to be dependent on biologics, because they will only work for so long. Since you havn't had the results for the positive criteria, you'd pretty much be postponing the inevitable.

I'd be scared crapless to have the surgery, but there are awesome, awesome members here who I would trust to say it would be OK for me to go ahead with it.
I'd want my life to be not ruined from the potential side effects and my energy and hopefullness be used for getting on with learning how to live with no colon.

Maybe I'm not the best person for the suggestion since we don't agree on many things.....but I think it's better to make the decision than to be forced to.

You have to wait to give yourself permission....possibily. What does your husband say in this matter? your family? Would that have any weight in your decisions?

quincy