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Crohn's Disease
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Posted 9/17/2011 9:42 PM (GMT 0)
Background - Diagnosed with Chron's July 1996 at 24.  Thought I had appendicitis and it was Chron's had resection done.  Did the pills (Pentasa, Flagle, Cipr, Steroids) got tired of 20+ pills a day after a couple of years stopped taking them.  Felt fine, didn't even see a doc.  Got a Recoto Faginal fistual in 2003, found doc a Univ. of Chicago.   Tried Pentasa and all the same meds as before (see above) for over a year nothing worked.  Did Remicade, loved it, and it closed fistula and put me in remission.  Thought I would go off of it due to remission and $$$.  Was fine until last August when I got pregnant.  Went into full flare during pregnancy and it has gotten worse since the birth in April.  My son was 3 weeks early and small but overall very healthy and happy (I am now 39).  Pentasa is not digesting...so getting the small white balls in my stool.  Waiting for Remicade approval from insurance.

My questions are:

My new Gastro Doc (I moved to Arizona so had to find a new one) says I may not do well on Remicade due to an antibody build up.  I was only on it for a year and half before, I can't imagine I built up an anitbody in that length of time.  She said I should be on Remicade for the rest of my life.  I question that you're telling me that when I am 90 I will still be getting Remicade infusions?  REALLY??  Come on not possible for anyone.  Second, I would not have been able to get pregnant because you can't be on Remicade and be pregnant!!!  So I think her answer was assinine.

Has anyone been on Remicade, stopped, and went back on?  What was your results?

Anyone with Chron's had children and did they display signs of Chron's from birth?  My son has some issues my family says I had the same ones and it took until I was 24 to get diagnosed right.  I think my son is going to have Chron's.

 

Posted 9/17/2011 10:54 PM (GMT 0)
Hey Crohn's chick. Sorry you're in the midst of all this.

I don't take remicade, but many here do, including those who've been pregnant while on it.

I'm sorry that folks think your 4 month old has issues already. IMO, let your family's comments slide right off your back. While I'm sure there are some who are diagnosed in early childhood, unless your baby is passing blood I doubt you can say he has a gastrointestinal disease. Lots of babies have GI gas, green stool - it's all normal. On the other hand, as someone with Crohn's, your children are more likely than others to have it. But that means maybe a 10% chance. And most people are diagnosed in early adulthood like you were.

My oldest daughter has stomach aches a lot and she's currently being treated for GERD. She's almost 12. We listened to her complain of tummy aches for a looooong time before taking her into a specialist. The testing is really difficult for kids, and I didn't want to put her through that until it was really important. When she was 10 she essentially stopped eating, so we took action. She's doing really great now. She occasionally passes blood in her stool, and I'm not convinced that GERD is the root cause of her problem, but the proton pump inhibitor she's taking (Dexilant) has made a world of difference for her so we'll continue down this path unless and until it's not working anymore.

I think it's pretty common to get a comment from a GI about the possibility of antibodies to remicade. When you get your infusion, make sure they dose you with benadryl to prevent a reaction. I hope it works for you. And yes, you should be on maintenance medications for the rest of your life. But for the moment, it's not useful to think that you'll be taking Remicade when you're 90. Who knows what new approaches will come along???
Posted 9/18/2011 12:32 AM (GMT 0)
Hi Crohnschick and welcome to Healingwell. Just fyi, "Crohns" is a chronic and incurable bowel disease that must be treated at all times, including those times when you are feeling better. When you are not taking your meds, you are allowing the inflammation to go on untreated. I learned this the hard way myself, and because of the emergency surgery I had to have and then another surgery only 3 years later, I will NEVER be with out meds again.

I have been blessed with the ability of being able to stay on just Asacol, but would not hesitate to go onto to stronger meds if I had too. I am healing from a flare right now, and I will do anything not to feel like this again, it is quite miserable.

As for meds while pregnant, we have had Moms on this forum taking anything from Prednisone to Pentasa/Asacol, Imuran/6mp, Remicade and even Humira. All had healthy happy babies. The general belief is that a healthy mom produces a healthy baby.

We have a couple of folks who were able to go back on Remicade, but as kazbern stated there is a strong possibility that you may have built up antibodies and might now have a reaction to it. If Remicade doesn't work for you, you might look into Humira. That med you give yourself via injection or injection pen. Sometimes tho folks can go back onto Remicade, if they get premeds first (i.e. Benedryl and/or steroid).

Whatever med you get put back on, PLEASE stay on your meds, this is a nasty disease and I think you would prefer being healthy and being able to enjoy your family. Good luck!
Posted 9/18/2011 1:26 AM (GMT 0)
My brother was lucky to get off Remicade for about six months and now has been back on it for a little over a year. He is doing great or at least that is what he tells me.

I on the other built up antibodies after a year and a half on Remicade and had to switch to Humira after shortening the time in between infusions and doubling the dosage.

Unfortunately this is a very individual disease and everyone reacts different to medications as you can see that my brother and I have the same disease but have very different experiences.

Best of luck!!
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