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Ulcerative Colitis
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Posted 4/10/2011 4:20 AM (GMT 0)
First I would like to thank everyone here for helping me through probably the worst time of my life. This may be my first post but I have been reading threads and found many of your posts through google searches. So here is my story so far.... I'm 29 now and I was dx with UC in june of 2009 at the time I was just going to the bathroom a lot and had traces of blood in stool. After I started treatment my life began to spiral downward. I've been on all kinds of meds some of which I can't remember but those that I did I added at the bottom of this post. It seems my body don't take to meds very well cause everything I take I either have a reaction to or it don't work.. in some cases it made things worse. I have not been able to go into remission at all and now I have so many more symptoms. Prednisone seems to be one of the few meds that work but once I taper back off I go right back into a flare. I have an appt. With my GI on the 29th for me to receive remicade infusions. I am at my wits end with this disease. I am so desperate to get better I went on nicotine patches cause I heard they help and they did... but I cannot afford to keep buying them on top of the cost of all my co pays. Now I switched to an e cig. I'm not sure if it works yet cause I just started but if the patches helped I don't see why this wont. My depression is getting worse but Im afraid to try new meds cause I had a severe reaction to effexor. Ive been in and out of the hospital 3 or 4 times in the past year or so and just last week i woke up to most of my joints locked up and had swollen hands. Had some blood work done but didnt get back all the results yet. Sorry if my post kind of jumps all over the place but I get so fustrated I can't even think straight sometimes. Ill end my little rant here so I don't bore anyone too much. It took a while for me to make a post cause after reading some other posts I feel like my problems aren't as bad and I didn't want to look like a baby crying for attention. I just feel I need to talk to people who can relate and understand what I'm going through.... thanks to everyone who takes the time to read this long post and I will see you around the forum ;)
Posted 4/10/2011 11:32 AM (GMT 0)
Remicade should help you. May take a few doses so be patient. Welcome to the forums!
Posted 4/10/2011 1:45 PM (GMT 0)
Check out this person's post. She seems to be in a similar position as you. The advice given here may also be helpful to you: rectal meds and diet modification.

https://www.healingwell.com/community/default.aspx?f=38&m=2077885
Posted 4/10/2011 2:03 PM (GMT 0)
Thank you dr-a and babeinthewoods.. I will check that out now as I said I'm pretty desperate at this point and I am willing to do whatever it takes to live at least semi normal again :)
Posted 4/10/2011 5:04 PM (GMT 0)

superpoo615 said...
. It took a while for me to make a post cause after reading some other posts I feel like my problems aren't as bad and I didn't want to look like a baby crying for attention.)

Firstly, there are no babies on this forum. Please don't ever worry about that. We are all here to help and support each other.

I have followed a similar path to you, and haven't had much luck with meds other than prednisone. I have started Remicade, and it is working to some extent, but it tends to only last for a short amount of time in my case. Hoping to increase the dose and give it some more time. Many people have said that Remicade takes sometimes up to 6 mos to work.

It is a tough battle this disease, and not for the faint of heart. Hopefully the Remicade will help you, but don't give up if it doesn't work immediately.

Welcome to the forum and good luck.
Posted 4/12/2011 4:01 AM (GMT 0)
Hi there,

I absolutley know how you feel.  I was in a flare up for 3 months and was on prednisone and that didnt even work!!!!

I had a remicade infusion and i felt better that day.  Within 3 days my bleeding had stopped and i went from 15 bowel movments to about 3-4 after the 1st week of my remicade infusion.  After the 2nd infusion i feel even better and feel like im in remission.  I have another infusion in a few weeks.

Anyways I responded well to the remicade and i hope it works for you too!

 

Posted 4/12/2011 7:18 AM (GMT 0)
Thank you mom2panda and toughtimes I really hope the remicade works cause I just took my last prednisone yesterday and I can already feel everything coming back. As soon as I got to 10mg I knew it was gonna be back ... i just hope it stays mild till the 29th when i see my GI...I now have to go see a rheumatoligist on top of this cause this morning my wrist and shoulder locked up again so its only a matter of time before it hits the other joints again also.. its so painful and I'm now immune to 5mg percocet I don't know why they even prescribe that.. Im just a little afraid to ask for stronger cause I don't want to seem like an addict. Anyway I'm sorry to hear its been tough for you too mom2panda .. I hope things work out and you get better soon and I'm glad remicade works for you toughtimes.. I hope it does the same for me. It would be nice to be on something else besides prednisone for a change
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