Remicade necessary for abscess/fistula? Scared...

[Elizajp]

I have had a flare for the past month. Was on prednisone but it wasn't cutting the rectal inflammation. Had terrible, excruciating butt pain. Finally went to the ER and they discovered an abscess the size of an egg (with accompanying fistula) right next to my rectum. They drained it and now I have two setons. Getting IV antibiotics and steroids right now.

Here's my question. The GI wants to start me on Remicade on Wednesday. Up until this month, my crohns had been mild and managed with diet, etc. for years. Remicade seems huge and scary and daunting. Doctor says the perianal crohns is bad now and that fistulas and abscesses are serious and need to be treated aggressively. I get this and appreciate it.

Does ANYONE though have luck with avoiding biologics with severe perianal, fistulizing, abscessing crohns? I am always trying to go the more natural route, but I also don't want to risk something like a future osotomy. I'm scared and unsure and don't know how long I can wait to make this decision before it's too late. Advice?

 

[nogutsnoglory]

I know it's scary but most people are fine taking it and it really can work incredibly well on fistulas and perianal disease. I tried to avoid taking it and things got so bad by the time I said please give me Remicade.

 

[theOcean]

Agreed with nogutsnoglory: I know biologics seem scary, but they're really not that bad! I've been on two of them now -- Remicade and Humira -- and they've worked really well for my fistula and haven't caused any bad side-effects. Also, consider this: you could go on Remicade or another biologic until your fistula heals, and once you get comfortably into remission you could always stop it and go back to alternative treatment and lighter medication.

 

[Elizajp]

Thanks for y'all's help! That encourages me. It's just a lot to take in after doing so well for so long- but it's good to hear the biologics aren't as scary as they seem. Ocean that's a good point about coming off of it if I decide to once the fistula heals. My doctor has been saying remicade is a one time thing though- that's another reason I'm scared to use it- I'm scared to waste it especially since I'm only 23! have you been on and off it before? I suppose there's also Humira if I used up my remicade chance.

 

[theOcean]

Unfortunately, the reason I stopped my Remicade use was because I was allergic to it. I've only heard of one person on here who stopped it and then tried it again later... it didn't work for her that time. But that's also the only case I've heard of.

When that failed for me, I started Humira, which has worked really well! Haven't developed any antibodies to it so far, and because of what it's made of there's less of a chance of reactions to it anyway. There's also Simponi, Vedolizumab, and others, so you're not really out of options. Not to mention they're always looking for more!

(Also, if it helps: I'm 22!)

 

[STLGirl]

I'm on Remicade, 3 years now, but my Dr. and the Remicade nurse in his office said when you stop taking Remicade and then start again, your body will most likely react by developing antibodies against Remicade. This makes it difficult to start therapy again without a decrease in effectiveness. If it helps, I was scared starting this drug also but it has been great, and I'm living a normal life now. If you have any detailed questions about it, please feel free to ask me or anyone.

 

[Elizajp]

Thank you all for the encouragement! I'm starting the remicade tomorrow and going home afterwards. Nervous but excited to feel better!

 

[theOcean]

I'm so glad! I hope it works well for you. Good luck!

 

[STLGirl]

I'm so excited for you to start tomorrow, I hope it goes great. I'm not sure if your infusion place told you anything but I will tell you a few things I learned along the way to make it better. Before I leave home I make sure to drink lots........juice, water etc because the more fluids you have in you, the easier it is for the nurse to get a good vein for IV. Also right before I leave home I take a Tylenol because for some reason I always used to get a headache after. Then one more thing that helps big time for me........I try to take a nap during the infusion. When I don't take a nap, I feel so drained afterwards and have to come home and sleep. But if I nap during it, I feel awesome when it's over and I'm ready to face the world Hope these little things help. But I know we are all different and you might find some better things that work for you. Have a great day tomorrow, I'll be thinking about you Let us know how it went.

 

[Elizajp]

Thank you for your advice! They are actually doing it here at the hospital where I have been staying since the surgery. The doctor wants me to still be on the iv steroids as extra precaution against a reaction. I will be sure to drink lots of fluids and great idea about the nap! I will let you know how it goes. Praying it works well! We have a nine month old waiting at home with his grandparents- I need to get well for him