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New to page, not new to UC -- in a major flare and in so much pain!

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Ulcerative Colitis
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Posted 10/17/2012 2:34 PM (GMT 0)
Hi. I am new to the pages here. i have had UC for a while now and have tried a few drugs (though I cant take the sulfa ones due to allergies). I am now in a flare. I started 60mg steroids in decreasing dose. My pain is horrible, enough that when I go to the bathroom each time which is around 15 or more times a day I cry while sitting there its so painful. I cant get comfortable -- laying hurts, standing hurts, it all hurts. Now I am having issues where I just cant make it to the bathroom. I have had multiple accidents and have taken to using adult diapers becuase I just cant take it. I am only 25 so this is extremely embarrasing for me. I feel like my body is betraying me. I just dont knwo what to do with myself. I also have another autoimmune disease: neuromyelitis Optica spectrum disroder -- so it feels like I am just overwhelmed. I now have blood in my stool and it is kind of foamy -- nasty stuff. I was on Asacol for about two months and it seemed to do the trick, and then I stopped digesting them and they just started coming out in my stool. My doctor saw me on Monday and we started steroids right away and wanted to switch to asacol capsules but they apparently dont carry them in my area. So -- he tried to switch to pentasia and my insurance doesnt cover it. We are going to be starting Imuran for it. And I am hoping that will do the trick. Any advice would help. What can I do to feel better. I have tried the diet thing, and the meds ..... I just dont know what to do anymore?
Posted 10/17/2012 2:50 PM (GMT 0)
I don't think IMuran is a bad idea considering you have another AI illness that it may help but I don't think you should give up on mesalamine because Asaol is not available and Pentasa is not covered. If you don't mind me asking, where are you located? There are programs in the US where you can get Lialda discounted to $10 with insurance. I have the card, I pay $10 instead of $50. I think it takes $40 off your copay. there is also Colazal which is available in a generic. You can also order from Canada and get the meds for cheaper than some get it with insurance. They have a generic form of Asacol. I used to send all of my GI scripts up to CanadaDrugs when I was uninsured. There are a lot of drug stores up there but you have to be careful which you use. If you need recommendations, you can probably search in the search box here and find some info. I am sorry you're feeling so terrible.
Posted 10/17/2012 3:41 PM (GMT 0)
And don't forget about rectal meds. If you tolerated the oral mesalamine, ask your DR for rectal mesalamine. Be careful about which generic brands have sulfa in them.
Posted 10/17/2012 3:45 PM (GMT 0)
I agree with the rectal meds, I put it off for awhile, as the thought of it made me shy a way, but finally after a few weeks, I went for it, and I've been feeling so much better. I wasn't as bad as you are, but was still dealing with pain, I'm happy to say that I have very little issues, and it hasn't even been two weeks since I started them. So go for this, its worth it.

- Adam
Posted 10/17/2012 4:28 PM (GMT 0)
Sorry you are having such a rough time :( I know how you feel and although it feels like its never going to get better...IT WILL! I take asacol and the mesalamine enema (generic for rowasa). When I have a flare up the doctor usually prescribes prednisone which is a strong antiinflammatory and does the trick! you may want to put a heating pad on your belly and back, it has helped me before. I am actually having uc issues lately thats why i logged onto here. Hope you get some relief soon
Posted 10/17/2012 5:04 PM (GMT 0)
Lialda and Apriso also have mesalamine as an active ingredient (like Asacol), so check with your insurance about them.

I also ditto the suggesiton of mesalamine enemas. Only the brand-name SF (sulfate free) Rowasa does not have sulfate preservative, though -- regular Rowasa does.
Posted 10/17/2012 5:12 PM (GMT 0)
Sorry you are feeling so bad. I take the colazal because they work at a different pH than asacol. It has worked better for me than the asacol did. I also agree, rectal meds are good options. Hope you feel better.
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