• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Will Humira work if Remi did not?

Has anyone had success with Humira that had no results with Remicade (or the other way around)? I tried Remi to heal my fistula, but I did not see any results. My GI wants to try Humira, but I'm not sure if it's a waste of time. From what I can tell, most people on here that have switched from one to the other at least initially had results with the first treatment, but then it stopped working. As I understand it, they are very similar, so should I expect to see results with Humira if Remi never helped?
I don't know about your case Shadycat, but they both worked for me.

I changed to Humira, every 2 weeks, and it worked well for about 2 years, then I changed to every week, and again that worked for about 6 months.

I won't say it worked perfectly, my fistulas/abcesses still came back now and again,but a dose of flagyl sorted them out.
It has the potential to work since they are different proteins with humira being one that your body will more readily accept. There is no guarantee, but failing only 1 of the 3 approved tnf inhibitors isn't grounds to rule the others out. If humira or cimzia failed after taking remicade then I would consider trying the last option to be a bit more of a waste of time/money. I would say give the humira a good 6 months to see if it works or not. Also, some absesses and fistulas just don't like to heal, regardless of the treatment used and you might end up with a non-healing wound like me. It doesn't hurt really, just an annoyance to have and to have to keep it clean all the damned time.

Good luck with the humira, it is simple to take and once you get good at it, doesn't hurt for more than 10 seconds after injection.
Thanks Danman. I know that you have dealt a lot with fistulas and I appreciate all of the advice you have given. When you say that flagyl "sorted them out", do you mean that they closed up, or just kept the inflammation at bay? My fistula has never closed on its own. Here's a quick recap of my situation...I know I have spelled it out on here before, probably more times than anyone cares to read. It's just that I am 37 years old and would really like to have a child, but I am confused and a little scared because of my failure to keep this fistula under control.

I have tried Imuran and remicade and was unable to heal the fistula. I have been on countless doses of flagyl, which seems to work (usually 4 weeks @ 3X 250mg/day along with Cipro), but as soon as I stop, inflammtion is back within a week or two. I also had it surgically repaired, but it still came back. I am currently taking 250mg of flagyl/day and have been since my last course of cipro and flagyl finished in January. That seemed to do ok at first, but within the last month, the inflammation has started to creep back. I thought about calling my GI doc, but I know that he will just up my dose of flagyl again...and well, ugggh! I can not stand taking large doses of this stuff and I dread the thought! If I have to do it for a month, so be it, but it looks like it's getting to the point that I will have to keep taking it all the time and I just don't feel like 750mg of flagyl per day for the rest of my life is an option!

Now I'm going to get a little personal. My fistula is vaginal and that whole area is swollen, which makes for some really uncomfortable sex. My husband and I try when we can, but honestly, it's really not enough. We have not been using birth control for quite some time and I have not gotten pregnant. Today I saw my OBGYN and she wants to refer me to a fertility specialist because of my age. I guess this is a good idea, but I think that I am a little hesitant about the whole pregnancy thing in general because of my fistula situation. I guess I am just generally scared and confused and am looking for someone to give me that magical answer.

Thanks for listening, and please, please, please, let me know if you have any words of wisdom or advice!
Thanks also, saidintouch. I din't see your post until after i responded to Danman's.

So you have a non-healing fistula, too, huh? How long have you had it? What meds have you tried? How do you keep it from getting inflamed? I take a bath every day. I'm not sure I see a connection between keeping it clean and not getting inflamed.

Anyway, that brings up another question. Just because I have a fistula, does that mean I have "active" Crohn's? I have read that there is an increased risk of complications with pregnancy if you have active Crohn's at the time of conception. My GI said I should wait until everything is under control, but my OBGYN has given the green light. I'm not sure that I have ever had "everything under control", but right now the only real problem I seem to have is with this fistula. My last colonoscopy showed one little spot of activity, which my doc said was probably my fistula. So does that mean I have active Crohn's or not?

Sorry for so many questions. I have just kept putting off trying to get pregnant until I feel like everything is right, but I have just come to the realization that I am running out of time and now may be as good a time as any...

My Butt Hurts

I would say that it is worth a shot. (Omg - pun SO not intended.) You will never know unless you try the Humira. Humira worked well for me but for a very short time. I am doing very well on the Remi now.

Is your fistula something that can be fixed surgically? As awful as the 2 weeks were after my perianal fistula surgery, it has been great since.
shady i know you said it is rectovaginal, but is it in an area that they would be able to place a seton somehow?
you said that the whole area is swollen which leads me to think that its not draining very effectively and YES that hurts like hell. but having the seton to keep it open might relieve that pressure.

just thinking.
MBH, I had it surgically repaired, but it came back within a year. Now my surgeon said that there is a lot of scar tissue in that area and the chances of the surgery working are less and less each time you have it done, so the odds are not in my favor.

Kello, I have noticed that others on the forum have had setons for fistulas as well. I think I will ask my doc next time I see him...it has never been mentioned to me as an option. Do they hurt?
well shady, i didnt have one put in for my rectovaginal fistula. i got very VERY lucky that the fistula got no bigger than a pinhole opening in my vaginal tract and it on and off healed and opened repeatedly. now its quiet thank god. it was miserable. i really feel for you with that :(

well ok back to the facts--the ones i had in my bottom were pretty pain free. they were placed under anesthesia, so no pain there. i was always a little sore the next day from all the poking but after that....10x better cause the pressure was relieved. (some exceptions where the setons werent enough and i had to have penrose drains).
sometimes they would pull a little at random times. you may just be sitting there and "ah!" it pokes you. idk why, i attributed this to the skin healing and changing around the foreign object.
and also be gentle while youre wiping! no big disasters will happen if youre rough, but if you catch it the wrong way sometimes you get a big tug and it hurts a tad and feels very WEIRD lol.

i suggested this elsewhere, maybe even to you i dont remember! but when my rectovaginal fistula was at its worst i wore a tampon when i would go out or be around other people etc. sometimes even at home.
i found that this absorbed a bit of the poo that came through, as well as block any farts that wanna take a detour, you know what i mean girl! that was the most awful thing, to feel the gas building up and knowing that it is gonna come out and you have NO control and as if that werent bad enough it has to hurt like a B while its doin it right? ugh :(
i found tampons to be really helpful with all of that
God, those farts have a mind of their own, don't they???? That used to really freak me out, but now I am so used to it, they slide on out and I hardly even notice.

I can not imagine wearing a tampon. I can't even wear one when I have my period because it rubs in there and makes it really sore. It might just be the location of mine.

So here's another question for you. Sorry, they just keep coming...things i've wondered for ever, but never knew who to ask. (Doesn't it make you happy to know that you are my vaginal fistula expert???) My GI doc has never really looked at my fistula...he just takes my word for it that it is there and that is what it is. And the surgeons (I have seen two different ones) always look at it through my butt and never my vagina, which would seem to be the obvious thing to me. I mean, that's where it really hurts and all. When you had your vaginal fistula, how did they examine you? Strange question, I know...
haha yes i am so happy to be the expert on the topic of lady parts and pus filled pockets! LOL:D
its ok, i love being able to help answer questions. its like "ooo ooo call on me!!" haha

hmm i find it strange that they havent done anything to try and confirm that its there. my surgeon never looked in my vagina either (only under anesthesia-will explain in a sec). so he suggested go to a gyno and have her do the check to see if anything feels out of place to her. cause after all, she knows whats normal/abnormal down there.
i did that and she said there was nothing there. i said "then why am i farting out the front?"
my surgeon always believed me too, so everytime i was in the OR for seton or drain replacement or to open and drain my rectal abcess, he would test for the rectovaginal one.
i think they do things like squirt saline into your rectum and see where it comes out (in your case it will come out the front). they can also do this with dyed liquid to make it easier to spot a tinier hole. they can also do an air test i believe, basically the same as the last two, except with air.

SO i would say go to the gyno and tell you doc that you are doing so and then you can get the gyno to report back to your GI/surgeon.
if that doesnt pan out, then maybe inquire about an exam under anesthesia (EUA) with your surgeon? then they could do one of the three tests in there and see where everyhting goes. idk it might not be really necessay cause if you have stool coming out well then, duh, you have a rectovaginal fistula. but maybe in the OR they could get a really good look at that sucker and be able to treat you better.

omg i remeber the first time one of those farts came. i was in school (junior year) of all places. im walkin down the crowded hallway and thar she blows. i was so scared, i was like ok i imagined that. then it kept happening over the next few days and i knew i had a problem. no fun.
crowded hallways are a beautiful place though :) you can fart freely and theres 49384 people around you and no one knows who did it.

bah sorry the tampon hurts. like i said, mine was teeny tiny so it was no where near as sore as what yours sounds like. worth a try though
Sorry, I guess I idn't make that really clear. They have confirmed that it's there. My surgeon did the air in the butt thing. But she never looked at it from the other side, so that's why I feel like they are only seeing part of the picture (not that it's a picture anyone really wants to see now, is it?). I went to my OBGYN today which is what made me bring this up in the first place. She looked at it andws like" wow. that looks really nasty." Just what you want to hear when someone's looking at you female parts. Then she started to squeeze the swollen part (abscess..I think?) and said it was draining pus. That's the part I'm not sure if my surgeon could have seen from my behind, which is why I asked. Of course, my OBGYN doesn't really know what to do about it, but she thinks I should call my GI guy.

Funny how your GI sent you to your OBGYN to look at it. It's like they are afraid to look in there or something...maybe they are not sure how it's supposed to look????

Anyway, thanks for all of your info. It has helped more than you will ever know.

Sorry about all of the typos...my cat is laying between me and my keyboard and I don't have the heart to move her.
oooohhhh i see now.
well then yeah i say get your gi to take a look! true maybe they dont really know what theyre looking at, but they will definitly recognize the fistula/abcess aspect.
is yours shallow? like close to the vaginal opening? mine was farther in and not really visible. the gyno just had to feel for it. idk how far up they can see LOL! so i guess thats why i thought that the GI and surgeon wouldnt really be able to SEE anything.

haha idk if they are afraid of it, but at the time i was 16-17 years old, still a pediatric, and i had all male doctors. hahah sooo maybe it was kind of a no no. i mean my parents were always with me, and i honestly would not have cared. after 949832904 people inspecting your rectum, you stop viewing your "private" body parts as being so private.

aww kitty! lol if i leave my laptop open on my bed one of the cats always has to walk all over it. without fail, they just HAVE to lol.
i miss them. the three of them are at my dads house and im staying at my moms for extra time, kinda until i heal up a bit more.

nothin makes you feel better than a snuggly kitty :)
Ohh, it all makes sense now. Mine is close to the outside...I can touch it. Maybe my doctors do not know this because I have never told them, and frankly, how would they know where it comes out on the other end?

I am sorry that you have to be away from your kitties. I know that mine always makes me feel so much better when I am sick...just laying there like a little purr ball. Here's hoping you get to see them soon! I'm glad to hear that your surgery went well.
Shadycat said:
I know that mine always makes me feel so much better when I am sick...just laying there like a little purr ball.
i know!! since ive been home so much during the day in the past few months, theyve all taken to hanging out in my room with me. usually theyre all spread out around the house in the daytime. but one especially, our girl named ewok (haha after the star wars critters) is in there with me ALL day :) she has a little snuggly covered basket in the corner and goes back and forth between there and next to me on my bed. my dad says that shes been lost the past week, he walks by my room and shes laying on my bed by herself and looks up with a question mark on her face. LOL how cute

oh god i could talk about kitties all day lol

umm ok back to the other subject. (joke in my mind, but i will refrain HAH :D)
so wait do your GI doctors know that it is a rectovaginal fistula?? you said "how would they know where it comes out the other end?"......
i think its important for them to know if they dont already

and thanks for your hopes that ill be feeling better. much appreciated :)