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Worried about side effects of meds

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Ulcerative Colitis
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Posted 7/27/2009 3:12 AM (GMT 0)
I have been diagnosed for 4 years and have spent about 8 weeks in the hospital with flares.  It seems like every new med they put me on causes a side effect that then I have to treat with another med.   At one time I was on 15 different meds.  After a 4 week stint in the hospital 2 years ago and a trip out to Virginia Mason in Seattle I was diagnosed with a secondary case of gastric paresis.  I was given the option of living my life on intense meds or having a stomach tube installed.  I cried for days and went off all my medications.  I was flare free for a year and a half but I started flaring again in May.  My doctor put me on Asacol and Mesalamine enemas.  I was doing ok until my stomach started acting up about a week ago.  I started with pain and nausea and ended up with uncontrollable vomiting that landed me in the ER for 2 days.  Has anyone had a side effect like this from Asacol?  Now I have been put on prednisone, reglan and anucort.  I'm just worried that all of this is effecting the rest of my body.  Has anyone else had problems with Asacol or an intolerance?

 

Posted 7/27/2009 6:44 AM (GMT 0)
Sounds like you have had a a rough few years. I have had colitis for 15 years now and I have not got on with any meds, so basically I have uncontrolled colitis. I have tried steroids which made me incredibly anxious and out of control, I have tried pentasa which makes me vomit and asacol gives me headaches and nausea. I am currently trying asacol foam enemas which I am currently having trouble retaining.

So I am now considering going on the IBD remission diet or the SCD.

I hate taking meds for anything, I like to be as natural as possible so having colitis is hard for me to get my head around. It's either the diet works for me or I am seriously considering surgery to get some quality of life back, a life where I don't have to think about taking any meds.
Posted 7/27/2009 10:22 AM (GMT 0)
I agree with you. 5ASA just don't work for me...I'm being in flare since I was diagnosed, it's 2 years now. So, next step is 6mp and so on...I'm pragnant right now, so I'm taking my Colazal and sometimes cortifoam when It's getting worth (which I hate myself for!). My GI wants to put me on these BIG drugs when I have my baby. My concern is, in order to getting rid of these symptoms, I', actually poisoning my body and killing my other organs... sad On the other hand, there is still slight chance that they will find cure for the UC...
So, I don't know what is worth, surgery or taking these drugs year after year waiting for our medicine to find something.
Posted 7/27/2009 12:55 PM (GMT 0)
There is always a risk/reward review when drugs are involved. Many have intolerance for 5ASA's. Some drugs will give you a chance for normalcy, and a chance to really live your life. My daughter has no current side affects to the big drugs she is taking, but it seems worth it to us to see her go to school, work out, and EAT whatever she wants. There are many drugs to try and many stories of successes. Good luck on your journey.
Posted 7/27/2009 3:05 PM (GMT 0)
I am so sorry to hear about your rough time with UC. I hope they can find a drug that helps you without side effects. Prednisone is the only drug I have taken for UC that has given me side effects. I didn't realize you could have an allergic reaction so long after being on a drug. Thanks for sharing your story and I hope you stick around the forum.
Posted 7/27/2009 10:08 PM (GMT 0)
I had horrible side affects on just about every drug I've tried.  I had severe stomach pain, vomitting, joint pain, neck pain, and headaches on asacol and lialda.  I can't take any 5 asa's.  Started getting the samething with imuran.  Just tried remi.  Very bad chest pain, joint pain,  I feel like I'm having a heart attack and I only had half a bag of remi(my first time) on Thursday.  I feel like crap.  I hope you have better luck.  Sometimes I think the drugs are worse then UC.  Oh, I'm on 20mg of pred(about a month now).  I swear I'm going crazy.  I have no patience.  I'm SO IRRITABLE. devil My poor husband and Kids.  Good Luck!
Posted 7/27/2009 10:11 PM (GMT 0)
Sorry you are suffering.
Did you know that Asacol is pretty much like aspirin? it just has a special coating that keeps it from dissolving until it gets to your colon, and into the ph level found there. Then it does its work to reduce inflammation, just like aspirin, but topically down in your gut. Maybe that will help you not worry about it so much, it's really a relatively mild drug but with a special coating.
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