Remicade vs. Surgery

So I got not-so-great side effects from 6MP and had to be hospitalized. They gave me a Remicade infusion yesterday. I haven't had any blood in my stools today, which is awesome.

But I still can't help but to consider surgery. From what I understand, we do not know what the long-term side effects are and that freaks me out. The GI on-call yesterday said that they would probably continue Remicade for a few years straight. Remicade is the only option left and will it be something I'll be able to use for the rest of my life? And since it is an immunosuppressant, I have to be really careful about not being around sick people, which will be difficult when I go back to college in August. And who knows how long Remicade will even work on me--I haven't had much luck w/ all these meds.

I'm thinking about using Remicade to get me healthy enough to have surgery, although I still need to discuss all this w/ my GI.

Anyone in this position? Any thoughts?

Remicade can be long term. I met a woman who has been on it for over ten years with no side effects. Most of the time the docs say that remicade should start working after the second or third (sometimes longer) infusion so having results right away is fantastic!! I really didn't notice a difference until after the third infusion. I am sitting here eatinga bowl of cherries because of remicade which i haven't been able to do in two years!

Surgery is a good thing to look into. Even if you decide to continue remicade you will know what your options are down the road.

about being on remicade and at school.; It really shouldn't be a problem. i am a middle school teacher and was very worried about it too. My Gi says that what you really need to worry about are things like TB. Getting a cold or the flu really shouldn't be that different. Illness may last a few extra days. My whole family is sick right now and I seem to be the only one who hasn't caught their cold. I wash my hands a lot and carry antibacterial stuff everywhere.

I am planning on staying on remicade until it stops working. I have looked into surgery and at least have that knowledge for if i flare again so i won't feel backed into a corner.

i went to the dr asking for surgery, and he said try remicade. And it helped, for a few months, but then it quit, but even when it was working, like Bennie said, I was always waiting for it to quit, always worried about how much worse it was gonna be when it did quit working, and it did quit working and it was bad! and then, i felt like i had just wasted all that time trying remicade, when i could have already had the surgery and been healthy.
Personally, i didn't go through lots of drugs like most people, because i didn't want to waste time and money and get all the side effects from something that may or may not work.
THat being said, when the remicade was working, it was great, and i didnt' have any short term side effects from it.

hey there. I am in a similar boat as you. I'll be a senior in college and have been on remicade for a couple of years. I go back home (2.5 hours away from school) to get my infusions. Sometimes it works out well when I am home for Christmas or Spring Break and I have to get my infusion. It's really not too bad. Remicade has really helped me a lot. I am hoping to get off of it (either voluntarily, or involuntary once I am off my parents insurance). I have not considered surgery. I am hopeful that there will be a lot more advancements in the next 5-10 years, so I am hoping to deal with the symptoms until there is a long term solution. Please let me know if you have any questions!

Surgery should be a last resort but quality of life has to be a part of the decision.  If you find that UC rules your life; dictates your social or work schedule, prevents you from doing the activities you love, then surgery should be considered.  If you can live a full life while controlling your UC then by all means do not consider surgery.  If you find yourself giving up too much of your life and can't stand living that way anymore then surgery might be an option. 

Sue

Suebear writes this:
" If you find that UC rules your life; dictates your social or work schedule, prevents you from doing the activities you love, then surgery should be considered."

I wonder if that is a bit too broad a statement. At some time during flares, I'm sure that UC prevents all/most of us from feeling like we can do exactly what we want. I think when considering surgery, one might want to think about whether UC has ruled one's life for a long period of time without any break.

ComedyDork, Have you spoken with a psychologist or psychiatrist about this at all? The reason I ask is that you will always get some kind of bias or opinion from the people in your life when you discuss this. With someone who is trained to listen, you may be able to make a better decision on your own. You want to be sure that you aren't influenced by anything other than medical information and what you feel is best for you.

I think I would opt for surgery.

my personal feelings about my own situation, I can't put my colon back in, there is no reversing the surgery, so at this time I would try remicade and humira if neccesary/possible. Prior to electing surgery, however, I also want to be prepared mentally to accept surgery as my last resort.

For me personally, I just cannot live my life flaring like I have been. I need to take action and move on.

I made a short pro/con list for myself recently as well... Here's mine if you're interested in knowing my reasons for considering! I can't remember if I ever posted it here or not. REASONS TO HAVE SURGERY     1)        No more worrying about where every bathroom is when I go out and being able to enjoy outings without them being ruined by multiple bathroom trips 2)        Being able to enjoy social gatherings instead of staying at home because I don’t want to use their bathroom 3)        Not having to worry about whether everything I eat is going to make me sick 4)        Can’t have colon cancer without a colon! Even if it’s a small risk now, it’s still there 5)        Finally be able to feel healthy and young again 6)        No more taking handfuls of questionable medications with questionable long term effects 7)        Seems like pregnancy would be easier without colitis, assuming the surgery doesn’t effect my fertility. I’d rather have surgery, get healthy, and then try for kids, instead of trying to carry a fetus and then raise the newborn in a UC flare 8)        No point in wasting what life I do have left feeling sick and waiting for a cure that may never come. Life is too short and these are supposed to be my best years! 9)        Tired of wondering when the next flare will be, when this one will end, what this food will do, etc. 10)     Even if I don’t get colon cancer, I could end up with cancer or other illness from any of the various treatments, especially ones like prednisone! 11)     If the J-Pouch doesn’t work out for me, I could always revert to the BCIR, which is performed very close by and seems like it would be a great alternative. 12)     Most of the things on the after-surgery diet restriction list I don’t eat anyway! 13)     I want to have surgery on my own time when I’m young and in a slightly healthier state than I would be if I waited until it was an emergency. 14)     I could finally start exercising again and going to yoga classes instead of worrying about having to jump out of a pose and run to the bathroom, which is very embarrassing. 15)     Even though it’s a little scary, I believe it would be a large change for the better in my quality of life, even though it’s not as bad at the moment as it used to be but it could and probably would be again. 16)     The biggest reason- NO MORE ULCERATIVE COLITIS!   REASONS TO BE HESITANT about (OR NOT HAVE) SURGERY 1)        Surgery scars and stoma/ostomy… I already have some self-esteem issues- how will this effect me mentally? Although, laparoscopic scars are much smaller and less noticeable than open scars. 2)        After J-pouch surgery it says most people go to the bathroom 6-10 times a day for awhile, which is how I am with a bad UC flare! But with UC it’s painful and urgent, hopefully with the J-pouch at least that would be alleviated. 3)        Curious about the cost of ostomy supplies and how much is covered by insurance… I haven’t found much info on it online but I’m assuming it’s probably cheaper than half the UC meds. 4)        I have fears that my boyfriend will find me unattractive after surgery, even though he says he wouldn’t. But then again, he finds me attractive with a “pooping disease” so what’s a few scars compared to that? 5)        What if I have the surgery and feel worse than before and regret it? There’s no going back once it’s done. 6)        I understand there is a risk of infertility which does really scare me, but at the same time with UC I don’t feel I would be able to be pregnant and raise a child. I have spoken with many women also that have had successful pregnancies after surgery and I feel with a good surgeon who takes care not to thrash up my insides and create excessive scar tissue that I should be okay.  I don't plan on waiting 20 years for a cure/better medication either. By that point I'll be 43 and will have wasted most of my life waiting!!! I'm in a bit of a flare now and I can feel it getting worse in that I am soooo exhausted, I just sit around and yawn all day and I can't get up the energy to do anything. And people at work are always talking about how they can't stay up late or party and they're like "Wait till you're older, you'll really feel it then, I can't even stay up past 10pm" and I'm thinking 'Are you kidding me?? It's 2pm now and I'm falling asleep at my desk. I think I'm feeling it now.' I know there's the fertility risk but when I think about it... I'd rather have surgery first and risk it being harder to get pregnant, than get pregnant with UC and worry the whole time what the medications are doing, whether I'm going to flare, whether the flare will cause me to miscarry. At least with surgery I would be med-free and healthy which is the ideal state to be in before trying to carry a child. Sorry to hear you had to be hospitalized :( What do you think of Remicade so far? Did you notice any instant improvements?

i have a permanent ileo, but i still eat whatever. Most people with ileos or j-pouchs can eat whatever, there are a few things that are warned against, popcorn, nuts, seeds. Those things are hard for all people to digest. but i eat plenty of spicy foods!

Beth,EdieKristen-i can tell you that having a baby with an ileo is much easier than havign one with UC. My son was almost two when i had my surgery and before that it was so hard to take care of him, hte poor kid spent more time playing in the bathroom than anywhere else in the house, i was too tired to take him outside, and i couldn't take him places cause what would i do with him if my stomach started acting up while i was out with just him.
After surgery we go places all the time, we play in the yard, he never has to play in the bathroom, and i finally have enough energy to attempt to keep up with him. I can assure that no matter what you never have enough energy to keep up with a toddler!

No problem! :) Another thing I did one day when I was bored was write out a list of questions that I want to ask the surgeon if and when I do see one, so I don't forget anything. Things like "Do you perform this surgery laparoscopically" and "What steps, if any, do you take to protect female fertility?"

Well I hope the Remicade does start to work for you, if anything at least to give you some relief until you decide what to do next. It's frustrating when you have a good day and you're like "Hey, I feel normal, maybe I will be okay" and then it just goes right back downhill. Oddly enough, I've been constipated the past few days and have only been passing mucous for the most part, which is nice because I'm not running to the bathroom every half hour but I feel so bloated and feel like I've gained 10 pounds just because I'm not going to the bathroom! If it's not one extreme it's the other I guess!

ComedyDork,

I hope that you will still see a surgeon soon so you have time to become comfortable with the idea of surgery. I will keep my fingers crossed that remi kicks in for you soon!

I know just how you feel! 6mp put me in the hospital as well, and I've stopped responding to prednisone. I go for a colonoscopy on Tuesday, and then I'll know more. I'm probably going to have to take Remicade as well which really freaks me out. Working and going to school definitely add to the stress of all this. Being in college with this disease is hard too, youre away from your family, everyone talks about going to parties, going abroad for semesters, and its not fair! I think about surgery as well, to be a normal college student would be so nice. I hope everything works out for you. :)