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11/12/2009 04:16 PM

what if Remicade doesn't work?

colebear48
Posts: 6
New Member

Hi everyone,

I don't post much but was hoping to get some feedback on my situation here. I was diagnosed with Crohn's earlier this year and currently have 2 open fistulas along with another abscess that was just surgically drained. I've been on Remicade for 14 weeks, and I'm scheduled to go in for my 4th dose next Monday. I haven't had much improvement and am completely reliant upon Flagyl. Every time I stop taking Flagyl I have high fevers and horrible fistula drainage (sorry if too much info). My GI doc says if I can't stop taking Flagyl after this next Remicade dose, Remicade clearly isn't working. He said we would have to consider other meds or a colostomy. I'm only 23 so this terrifies me. Has anyone with fistulizing Crohn's not had a response to Remicade but had success with a different drug? I'm concerned since I thought Remicade was the best there was at closing fistulas...

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11/12/2009 05:17 PM
Sparty31
Sparty31  
Posts: 5
New Member

For me remicade worked right away and made a complete change in how i felt. Everyones differnet when it comes to this disease and I do know that Remicade doesn't work for everyone and today I was just told by my doctor that he doesn't think Remicade will work for me again because once you use it once than your body builds up anti-bodies against the drug. Another possiblity is the steriods however I have heard horrible things about them and personally I'll never take them. I'd talk to your doctor more about it though.

11/12/2009 05:37 PM
ShelbyBoat
ShelbyBoat  
Posts: 215
Member

Hi Colebear,

I can feel Remicade working fairly fast after an infusion. Do you notice any improvement after a treatment?? If so I would keep at it and add other drugs like your Dr suggested. You could always look at scaling back once things get under control. ...sorry I don't know anything that works better for Fistula/Crohns than Remicade.

ps..To Sparty. I myself stopped taking Remicade for a spout and it did work for me when I started again. So don't give up hope.


11/13/2009 02:28 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

Hi Colebear! Sorry you are dealing with the fistulas and abcesses. I went thru that last Nov. It was a nightmare. My first experience dealing with abcesses. I developed a terrible abcess that opened beneath my navel, (I have a colostomy and it came thru the stoma site to my abdomen). My PCP cultured it and immediatley put me on cephalexin (sp) and then my GI put me on flagyl. MY GI thinks the flagyl helped it but I firmly belive it was the cephalexin since I noticed an immediate improvement that same week. It took until Mar 09 to completely close up. I had to keep the area well cleaned and used gauze to prevent anything from infecting the wound further. Then I started monthly injections of a drug Cimzia in Jan 09. I did develop another abcess in May 09 and that required draining which was painful as hell to say the least! But finally after about 6-7 months of megadoses of antibiotics and the injections it has all cleared up. Don't give up and give the meds (remicade) a little longer. I know its frustrating to deal with the fistulas and abcesses and a real nightmare. This disease definitely can wreck total havoc on your life. I've never been so depressed and upset over trying to get those things under control. But thankfully I finally did. All I can say is just hang in there and hopefully soon they will go away!!!

11/13/2009 04:57 AM
chas036

Have you investigated the SCD diet? It cured my fistulas and put my crohns in complete remission, and I am not taking an drugs what so ever. I am a 34 year old male and I was diagnosed with severe crohns in sept 2007 after having 6 months months of explosive D, and also white mucus and blood in my stools, and finally getting two large and painful rectal fistulas. The surgeon installed ctons to let the fistulas drain and wanted me to go on routine of hard core drugs like 6mp and pentasa and steroids to control my crohns. After doing much research I found the SCD diet and I decided to go that route first before I became a slave to drugs. I followed the diet to the absolute letter without exception and in 6 weeks all my D had stopped. In another two months all my BMs were 100% normal and the white mucus and blood had completely disappeared. By the 8 month on the diet, one of my rectal fistulas healed up so much that the doc had to remove the cton so it could heal completely. At the one year mark, the other fistula had healed up completely also. It had been 30 months since I decided to try that diet and it has been 16 months since my last fistula healed up, and I have not had one symptom since then and I feel absolutely 100% perfect, and all without taking any drugs. The secret to getting this diet to work is 100% comittment. If you pick and choose what parts of the diet you will follow and not commit to it 100%, IT WILL NOT WORK. I suggest that you get the book "Breaking the Vicious Cycle" and read it. It saved me from a life of pain and misery and being a slave to drugs.

11/13/2009 05:35 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

The information on the SCD diet can also be found under our forums. I would suggest strongly reading what the CCFA has to say about this diet. It is not a good idea to go off your maintenance meds and any change in diet should be discussed thoroughly with your GI. It is an expensive diet to go by and there is no proof that it will put your crohns in remission. And it will not cure crohns since there is no known cure for crohns at this time. Untreated crohns can become much more severe requiring a longer recouperation time. Smile

11/13/2009 06:04 AM
colebear48
Posts: 6
New Member

thanks so much for all the replys. ShelbyBoat - can you explain what you mean by feeling the Remicade working after the infusion? What changes do you feel? I really can't say I've noticed any difference other than Remicade lowers my fevers. The very first dose of Remicade gave me lots of energy, but that lasted around 6 days and has never happened again.

As for the SCD diet, I bought the book recently but it seems impossible. I don't have the time(I work full time and have to travel) or energy to stick to that diet or make the food! How difficult has it been to follow the diet? If it works I'm sure it's worth the trouble, but I just don't see how it would be possible for me right now.


11/13/2009 06:41 AM
chas036

The diet is very very difficult to follow at first, and you need a lot of dedication because you have break many years of bad eating habits, but once you get use to the new foods, it becomes an obsession and you will look back and think how could I have been so stupid to put all that bad food into my body all those years. I look back to the way I use to eat, and I feel so thankful, and I thank god every day for giving me this opportunity to try this diet. Beside putting my crohns in complete remission and healing my fistulas, the diet has also reduced my chloresterol from 220 to 170 and dropped my triglycerides from 350 to 65. Overall, I feel better then I ever felt before in my life. Sure it is difficult, but this is my life and if just a simple change of diet is all I need to keep me from a life filled with pain and suffering and a life taking drugs, then changing my diet is a very small price to pay. I work full time also and I travel alot also, but I make a special effort to follow that diet even when I am away. My life and my future comes first over everythingh else, so if I have to put a little effort into finding the correct foods, then so be it. I look back two year ago before I was on this diet with all the pain I had, the D every 6 hours, ctons hanging from my anus, and I look at where I am now, normal BMs, no fistuals, no pain, changing my diet was the the best thing I ever did in my life.

11/14/2009 07:38 AM
CDVet
CDVet  
Posts: 215
Member

Hey Chas036 I remember you from another forum, I thought it was your "wife" who was "cured" of her Crohns with the SCD diet, NOT you. I thought you suffered with PC.

OP, I have heard that some have had success for their fistula's with Imuran also. What about one of the other biologics? I hope the doctors can help you to get feeling better soon. BIG HUGS to you!

Most Crohns responds really well to the low residue diet. Easy to chew, easy to digest I find I have had more success with this diet and it is far less restrictive. Also, no matter what diet you use, you should also take some type of maintainence meds always. You should consider the two as complimentary of eachother. JMHO


11/15/2009 06:27 PM
ShelbyBoat
ShelbyBoat  
Posts: 215
Member

Hey Colebear,

Sorry for the delay I am just reading your message. When I say that I can feel the Remicade working after the infusion I mean I see a dramatic differance in my symptoms. A lot less pain, a lot less gas, my fistulas improve - I have two that have not responded to operations. It feels for me that someone turned up the get well volume. It turns a Severe flare for me into something much more mild. ..and I don't notice any kind of side effects. Good Luck. I really hope it works for you like it does for me.

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