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Crohn's Disease
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Posted 11/14/2011 8:27 PM (GMT 0)
Hello Everyone,

I'm new to this forum and just wanted to introduce myself. I am 32 years old and I started having symptoms of Crohn's disease in July 2009. After several tests, poking and prodding I had to admit myself into the Emergency Room, since the doctors failed to diagnose me properly, in February 2010. I was started on Asacol and Remicade Infusions. Remicade infusions started at 5MG every 8 weeks. I was still struggling so I was taken off of Asacol and put on Imuran and Entocort. Again I was not doing well so I was given Prednisone and I had a very bad reaction to that within 3 days. After six months my infusions were increased to 10MG but I was only lasting until week 6. I finally got the infusions approved once every 6 weeks and I started having complications. It felt like my body was starting to reject the Remicade. I am now on Humira and I just started October 14th. I feel like I've had flu like symptoms since I started the Humira. Everyday I wake up feeling like a fever is going to break between the headaches, chills, sweats, joint aches and congestion.

I also currently smoke and I understand it's important that I stop. That has been a constant battle of will also.

Posted 11/14/2011 9:33 PM (GMT 0)
Hi Frustrated and welcome to Healingwell. So sorry for all the troubles you have had finding a right medication for you. But keep fighting, because it is important to be on medications at all times with this darn disease.

I know I have heard of folks not feeling well the next day after their injections. But you have been on it already a month, so I wonder if its not agreeing with you. Maybe just using Imuran or its sister med 6mp might be an option for you. We have members who have done well on either Imuran or 6mp for over 10+ years. I would call your doc and discuss how you are feeling and see what he says.

I understand how hard it is to quit smoking. I smoked for 29 years and finally was able to quit. I quit cold turkey and while it wasn't fun, I made it. I hope you are able to quit soon too. Hugs!
Posted 11/14/2011 11:43 PM (GMT 0)
Welcome, it sounds you're doing the rounds with your meds, believe me lots of us have done this until
we get the right mixture, or not like me. Wishing you lots of luck!!
Posted 11/15/2011 12:40 AM (GMT 0)
Hello and welcome. I have been on 6mp for over 13 years in combination with a couple of other things (Pentasa, prednisone, Xifaxan...), but the 6mp was what finally worked to get me out of the operating room and on the path to a better life. I did just have another resection, but that was for adhesions not for active disease, so the combination I am on now seems to be working at least to keep the active disease away. I have other issues, but don't we all!

It is important to find the right combination of medication to treat YOU and YOUR disease. If what you are using isn't working, it is time to try something else. I have been around Crohn's my entire life as my mom had it too and the options out there for treatment now are just amazing compared to what we used to have. Keep trying until you find what works for you.
Posted 11/18/2011 5:23 PM (GMT 0)
Thanks, from reading everyone's posts it's a relief to know I'm not the only one that is going through this, but it also scares the hell out of me with the complications from the disease that everyone has had. My husband and job have been great while going through this, but I feel like I've been so sick for so many weeks I'm never going to feel normal again. I've talked to a couple of GI doctors and both say the medicine won't work because I smoke. I've cut down from a pack a day to 5 or less and I don't see any difference.

I guess I just having a hard time dealing with this recently.
Posted 11/18/2011 10:17 PM (GMT 0)
Hi frustrated welcome

Hang in there . As long as there is life there is hope even if one doesn´t see or belive that everyday. We all have the disease but not everyone get´s the complications of it. I was sick for many years before i got the treatment I needed so don´t give up!
Posted 11/18/2011 10:25 PM (GMT 0)
Sorry to ear you have a bad time.. I know it might be stupid but, you should really try to work on your anxiety. Even if stress isn't fully proven to be that bad for crohn, it is really bad for the health in general. I know cigarettes is really a huge stress cutter for many it's why I don't say STOP. (But if you can one day I encourage you to ;) ) Seriously I have put myself in bad condition more that once because of anxiety. I know it's not easy I still have to work on this myself, but it's worth it ! :)
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