Questions

[flowergirl]

questions

(someone suggested i post in this discussion as well)

so i'm wondering if anyone has ever done things backwards?

i just got diagnosed a few weeks ago. my small intestine and my colon are fine. i have inflammation in the last inch of my rectum and a fistula that leads out from this area of inflammation.
my symptoms are honestly ones i can live with, aside from the fistula.

i just had my first remicade infusion today, and while it went well, i'm still very scared of adverse reactions and side effects. i have a 3 year old and i'm alone with him a lot.

i've never been on any of the drugs that most people start on, save for a couple of 2 week tapers of prednisone. i went straight to biologics.

has anyone ever started biologics, gotten into a maintenance place, and then gotten on one of the lesser potent drugs for maintenance? i'd really rather not be on remicade if i could help it. the only reason i'm on it is for the fistula.

can imuran/6mp/pentasa whatever, can any of these maintain fistula closure? assuming that the remi does manage to close it?

 

[Lydia]

I havent done it backward per se, but I took remicade for a year. It did close my fistulas, but I reacted to it after being on it for a year. I switched to imuran instead of going on another biologic. I would rather save the humira for a rainy day, since my crohns is doing pretty good. I went on prednisone while waiting for the imuran to kick in and I am now in the middle of tapering. So far so good.

One thing to consider is that if you stop taking remicade, you probably will develop antibodies to it and you will not be able to use it ever again. If you have coverage, and its working you may want to stay on it.

 

[TLA2011]

I'm just like you flowergirl. Any updates with your progress?

 

[flowergirl]

well, it's been a week and a half since my first infusion. doing well. butt feels much better. no pressure, less mucus. fistula hole is still there, but it looks like the edges are starting to heal up. not quite as raw. more pink and healthy, and less "stuff" is coming through, so i assume it's trying to heal. i feel loads better.

 

[TLA2011]

well, it's been a week and a half since my first infusion. doing well. butt feels much better. no pressure, less mucus. fistula hole is still there, but it looks like the edges are starting to heal up. not quite as raw. more pink and healthy, and less "stuff" is coming through, so i assume it's trying to heal. i feel loads better.

How was the infusion inself? Painful? And a maybe real silly question; but it's a needle drip into the arm, right? Is it ok to use numbing cream to numb the arm? I hate needles etc; apparently I've got veins that close up real easy; so with my last op; 5 times it took to get that drip in;& my arm was completely bruised. Have you got a seton in place? How soon would you be able to have that removed then? And did your drs say about regular MRIs to check the fistula? Any side effects from the infusion? I'm glad it seems to be working for you!  Gives me hope also. Thanks for your reply.

 

[flowergirl]

um. let's see. infusion did not hurt. it's by IV, so once you get the needle in there's no more poking. i have no idea about numbing cream. i do fine with needles, so don't know what to tell you on that.
i don't have a seton. mine doesn't have any problem draining, and i haven't had any issues with abscesses. no regular mri's scheduled. i had a CT done before and it showed the tract.
no side effects so far other than a few very mild headaches the couple days after.
i think i answered all your questions. :smile:

 

[SarahAnne]

TLA2011, I have very tiny veins and they blow very easily. I have had nurses inject a tiny bit of lidocaine (the needle is extremely tiny, you can't even feel it) over the area where they are going to stick for an IV. The lidocaine numbs the area, and even if they start digging around for a vein, I can't even feel it. You could possibly ask for this to make the IV experience a little easier. The remicade itself doesn't sting or burn, you can't even feel it go in.

flowergirl, I'm so glad the remicade is starting to work so quickly for you! I hope it continues to help so much, after a few more infusions you should really notice a difference! That's really awesome!

 

[flowergirl]

i had my 2nd infusion yesterday. went well. still feeling better. fistula hole still there. i did notice a couple of little tiny prongs of skin around the edge that weren't red or irritated, so i'm assuming it's new skin trying to form. i figure it will take a while to heal up, since the hole to start with is as wide diameter- wise of probably a nickel.
still gradually getting less stuff coming thru, so hopefully that means the hole on the rectal side is getting smaller. 6 weeks til the next one!

 

[TLA2011]

TLA2011, I have very tiny veins and they blow very easily. I have had nurses inject a tiny bit of lidocaine (the needle is extremely tiny, you can't even feel it) over the area where they are going to stick for an IV. The lidocaine numbs the area, and even if they start digging around for a vein, I can't even feel it. You could possibly ask for this to make the IV experience a little easier. The remicade itself doesn't sting or burn, you can't even feel it go in.

flowergirl, I'm so glad the remicade is starting to work so quickly for you! I hope it continues to help so much, after a few more infusions you should really notice a difference! That's really awesome!

Hi SarahAnne. Thankyou for your info!! I'm dreading the IV drip for 3-4hours. It's actually making me real anxious. Last time the IV drip hurt more than my actual operation. So hopefully I'll get nice nurses that can calm me down; and maybe use that stuff you've told me about. Thnku! 

 

[TLA2011]

i had my 2nd infusion yesterday. went well. still feeling better. fistula hole still there. i did notice a couple of little tiny prongs of skin around the edge that weren't red or irritated, so i'm assuming it's new skin trying to form. i figure it will take a while to heal up, since the hole to start with is as wide diameter- wise of probably a nickel.
still gradually getting less stuff coming thru, so hopefully that means the hole on the rectal side is getting smaller. 6 weeks til the next one!

Hi Flowergirl. I wish I knew here in Aus how big a nickel is!! So I could compare your fistula to mine. I'm so glad it's going well for you. How have you felt in between treatments? From what I read it seems to vary from being fully energized and healthy, to feeling quite exhausted. Guess everyone is so different. Did you say your on the purinethol too? That's knocking me about a fair bit. I succumbed today and told my sister how unwell I feel. Then I felt really guilty putting my problems on her! I've got a surprisingly unsupportive partner. I think my seton; even though it's pastel yellow and not hugely intrusive I didn't think; but it's maybe that that's turned him completely off me. It's like he's actually angry at me for being unwell. Doesn't help that I look completely normal, but the wave of nausea just comes from nowhere; and simply cleaning the house is now a major ordeal for me! I'm so hoping that I don't end up with a relationship breakdown ontop of everything else. For my last op; my partner didn't even call me beforehand! (he works away). So I'm not sure what's up with all that. So I spilled my beans to my sister today; then felt guilty as because of it. I'm hoping my fistula will miraculously heal the 1st remicade treatment; then I can cut out this seton! Your giving me hope Flowergirl and I'm so happy for you that you are getting results! I have my date; 4th Nov. So fingers crossed for me that it all goes as well for me as it has you! Any further info on your treatments would be appreciated. Can you take pain meds beforehand (ie to help with the drip insertion?). Thankyou.

 

[flowergirl]

tla- glad i could help. lol. let's see. a nickel. it might be closer in size to a sterling pence. maybe ever so slightly bigger. mine's in my labia though. the inside part. i don't know how that affects healing time.
i take tylenol before i go. my dr doesn't have me on iv benadryl, but he said if i was worried i could take an antihistamine before i go.
the only thing i've noticed during the infusions is that it gives me indigestion. although, everything seems to these days, so why not an iv drip? no headaches this time, i think the first time i was just premenstrual.
i feel fine after the infusion. maybe with a little extra pep in my step. definitely not exhausted. i think some people are because they take benadryl with it. benadryl knocks me out. i'm not currently taking any other medications. just the remicade.
good luck with your treatments. it's normal to be nervous. just try to relax. bring a book or your ipod or something. i bring my husband. he's entertaining enough. haha.

 

[TLA2011]

tla- glad i could help. lol. let's see. a nickel. it might be closer in size to a sterling pence. maybe ever so slightly bigger. mine's in my labia though. the inside part. i don't know how that affects healing time.
i take tylenol before i go. my dr doesn't have me on iv benadryl, but he said if i was worried i could take an antihistamine before i go.
the only thing i've noticed during the infusions is that it gives me indigestion. although, everything seems to these days, so why not an iv drip? no headaches this time, i think the first time i was just premenstrual.
i feel fine after the infusion. maybe with a little extra pep in my step. definitely not exhausted. i think some people are because they take benadryl with it. benadryl knocks me out. i'm not currently taking any other medications. just the remicade.
good luck with your treatments. it's normal to be nervous. just try to relax. bring a book or your ipod or something. i bring my husband. he's entertaining
enough. haha.

Hi Flowergirl. I've no idea what a stirling penny is either!! Or benadryl for that matter! Funny how different we are. Here in Aus I think we might be just a tad behind USA. I have a Sis that relocated to Houston. I'l get her to tell me what it equates too! Lol. We have a 5 cent coin!?? I'm lucky that mine hasn't hit my vagina yet. Got it in time. I think that definitely would have ended our rel. Thank goodness you have such a supportive hubby to keep you smiling! Lucky thing. Best of luck with it all. Enjoy ur break from remicade for the next 6 wks or so! Thnks so much for your help!

 

[flowergirl]

you're very welcome. benadryl is an antihistamine. the drowsy kind.

i googled your money. size wise, maybe like your 10cents? maybe a water bottle cap?

yes, hubby is very supportive. especially with the lack of you know what. it took him a while though, to understand. at first he wasn't the kindest, but he's come around.

 

[TLA2011]

you're very welcome. benadryl is an antihistamine. the drowsy kind.

i googled your money. size wise, maybe like your 10cents? maybe a water bottle cap?

yes, hubby is very supportive. especially with the lack of you know what. it took him a while though, to understand. at first he wasn't the kindest, but he's come around.

Hi Flowergirl. Thanks for all that. Yes I get what you mean about 'you know what'. Something that I feel the doctors just don't get! I can't believe we are still using the same methods of Hipocrates ie the seton. It's all very invasive and yuck hey. Its probably half my partner's problem. Your maybe lucky that you dont have a seton?? I find even my new one quite uncomfortable and the pressure off it is quite uncomfortable. So you had no real symptoms?... Then a hole/tear formed?& that's how the process began for you? I must say I haven't had huge symptoms of crohns in comparison to what I've read others have. It's kind of why it scared me so much that I was put straight on the heavy drugs too! My only real symptoms were going to the toilet 20 times per day (I was foolish enough to think I was ultra healthy by pooing that much!); and pain during 'you know what'. I'm still amazed at how much my life has changed in 3mths. When did all of this start for you? Anyhow; how are you feeling now its been a number of days since your 2nd infusion? Still healing slowly? Do you feel the remicade doing anything? Or wearing off when your close to your next infusion? I'm definitely now on the countdown! Do you have any kids? Ok thanks again .


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[flowergirl]

i have a 3 year old. he's a little sweetheart.
mine really,i guess probably started about a year ago, but my only "symptoms" were tinnitus and really bad acne. then this past april i got a strep-like illness and was put on antibiotics. about 5 days into the antibiotics my whole mouth flared. my tongue swelled, my gums were inflamed, i had about 30 mouth ulcers, my lips swelled up to double their size and i got thrush. i had to go to the ER to get steroids and anti-fungals. well, even after 2 rounds of antifungals and anti-virals, my mouth would just keep flaring.
then i got hemorrhoids, which i had never had before. then came a bunch of mucus in my stool, with a little bit of blood. then i started getting pressure in my rectum
then i got what i (and my ob-gyn) thought was a bartholin gland cyst. basically a lump next to my vagina that would grow and then get a little smaller. hurt and then not hurt. this went on for about a month. then it got huge, like walnut sized and so sore i couldn't walk. one day it just got smaller and started "draining". i thought this was good because all the "stuff" was coming out. then i figured out it wasn't drainage, it was stool.

so most of my drs, even early on, were telling me probably crohn's. finally went to a GI out of town who did a CT, and basically instead of just saying i think you have crohn's, was pretty positive and suggested remicade, because at this point i had 2 holes in my labia from the same fistula. the original hole has since closed up and the 2nd one is the bigger one.

i looked at it last night, and i really do think it's starting to heal. the hole actually looks slightly bigger, but i realized it's from the skin healing from underneath and pushing the old skin away, if that makes sense.

i'm glad i did the remicade, because the only other option would be to get on something lesser for a few months, hope it brought down the inflammation enough to have surgery.

 

[flowergirl]

my dx route was a little odd though, because before the fistula broke thru, i was seeing a different kinds of drs, because they all thought either crohn's or an immune response to the anitbiotics. i went to an ENT, an allergist, an oral medicine dr and a GI. when i went to my GI here the first time, had and endoscopy and colonoscopy, biopsies came back neg for celiac and crohns. and at the time my only real symptom down south was hemis and a little mucus and a very small amount of blood like one time.

then when the fistula showed up i went to 2 ob/gyns who said they couldn't do anything, then went to GI out of town, and by that time i had a lot more symptoms (oh, i forgot arthritis) and now i'm back to my GI in town, who did a 2nd colonoscopy (which still came back negative) but i had significant inflammation in my rectum and enough other symptoms to get diagnosed and put on remicade.

wow. that's a lot of typing.

 

[TLA2011]

my dx route was a little odd though, because before the fistula broke thru, i was seeing a different kinds of drs, because they all thought either crohn's or an immune response to the anitbiotics. i went to an ENT, an allergist, an oral medicine dr and a GI. when i went to my GI here the first time, had and endoscopy and colonoscopy, biopsies came back neg for celiac and crohns. and at the time my only real symptom down south was hemis and a little mucus and a very small amount of blood like one time.

then when the fistula showed up i went to 2 ob/gyns who said they couldn't do anything, then went to GI out of town, and by that time i had a lot more symptoms (oh, i forgot arthritis) and now i'm back to my GI in town, who did a 2nd colonoscopy (which still came back negative) but i had significant inflammation in my rectum and enough other symptoms to get diagnosed and put on remicade.

wow. that's a lot of typing.

Hi Flowergirl. How are you going? Have you had your 3rd remicade yet? How is your fistula healing? I had my 1st remicade a few days ago!! I've even been told my seton might be able to be removed soon!! Off for an MRI this week. Have you had 1 of those? The infusion for me was a little uncomfortable the whole time, hurts to get it removed too hey! But I survived! So glad to be on the process of getting well. I've had a chest infection for 5wks; that's taking it out of me; can't quite get rid of it; then it just takes over again! Having 2 kids; it's near on impossible to avoid infection...I'm sure sitting in a hospital for 6hours didn't help my immune system either!! Anyhow; how have you been?


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