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Ulcerative Colitis
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Posted 5/19/2011 3:12 PM (GMT 0)
Soooo remicade has officially failed for me and i am waiting to see my doctor next week hoping he will put me on something new that will work, i have yet to try imuran or humira so maybe one of those. Until then though i feel worse then i ever have and dont know what to do about it. I went into the hospital on monday and they checked and told me that i wasnt anemic and could go home until i saw my doctor. It still seems like its getting worse every day though. I basically went through two days without eating anything just to try and let it all stop for a bit but yesterday i was basically forced to eat again. Now i have not been able to sleep because, even though i ate very little, i have been going to the washroom about twice an hour. The whole night i was lying in bed and had to keep getting up to run to the washroom. I dont know how i can make it through at least another week of this, if anyone has any suggestions as to how i can slow down the bm's at least eneugh so that i can sleep i would be grateful. The only other option i have considered is to start taking percs but i would rather not be on pain killers all the time.
Posted 5/19/2011 3:31 PM (GMT 0)
Why do you have to wait a week Chris? It seems like this is an emergency and you should call your GI and tell them you need to get in ASAP.

I am sorry you're feeling so terrible. I have tried not eating and nothing seems to stop the bloody mucus when you're in a severe flare up. Do you have any rectal meds that you could try untl you get in to see the doctor? Are you on Asacol or similar?
Posted 5/19/2011 3:54 PM (GMT 0)
Unfortunately my GI is very busy i guess, that was the soonest time that they could get me in for an appointment. I was on a similar drug to asacol called salofalk for a while but my GI stopped me taking that a few months ago as it was no longer having any effect. Also i do have rectal meds that i had tried for a while, similarly they do absolutely nothing and my GI had me stop taking them as well. Basically all i am on now is remicade because everythign else had failed....now remicade, which for the first three infusions was a miracle drug for me, has also failed to do anything.
Posted 5/19/2011 4:10 PM (GMT 0)
I feel for you. I started imuran a few months ago and although I'm doing a little better... my hair is falling out bad and I get intense headaches, I also have arthritis and stilll no solid bms. I'm starting the SCD diet, I've heard a lot of good things about it, better late then never? If you come down to the last resort, I've also heard a great things about the j-pouch.

I too also take pain killers all day, better than feeling sick. when I was in your situation I took psyllium powder at night to bulk up the bms, you can try it and see how you handle it, also try to eat some brown rice cereal, its like malt o meal but brown rice. ripe bananas helped as well, lot and lots of water. Something else that helped me immensely was SLIPPERY ELM POWDER and rice milk, you just add it to hot/warm water and add some rice milk. hot pad or a hot water bottle was my best friend at night especially. then add the pain killers on top of that and you might get some rest and feel a little better. too bad your doc is TOO BUSY. if you have to go back to the er. good luck.

chicken broth is really good, warm it up and just sip it.

Post Edited (ryverwise) : 5/19/2011 10:18:13 AM (GMT-6)

Posted 5/19/2011 4:33 PM (GMT 0)
What about prednisone? Does that help you at all? i've never been on it, but I would think that would be an option with how severe your symptoms are right now. I've been there and totaly remember the going to the bathroom every 20 minutes all night long...it is horrible. Maybe you could call your GI again and explain again how severe your symptoms are and ask if they have any advice to get you through the next week.
Posted 5/19/2011 4:44 PM (GMT 0)
Prednisone worked for me the first time i took it about 5 years ago, this time around we tried it before remicade in february but it didnt work. I was on about 60mg a day for a couple weeks with no success, after that i was hospitalized and tried on iv steroids which likewise had no effect. Basically im down to trying imuran and humira...after that i dont know what options i have left. When i told my doctor how sever it was he told me to go to the hospital, at the hospital they told me i wasnt anemic and to go home until i saw him...so basically ill probably to just turn to pain killers for a week. Also i plan on eating as little as possible but i doubt that will be good for me either.
Posted 5/19/2011 5:11 PM (GMT 0)
Have you ever tried Immodium? I haven't tried it but my GI wrote me a prescription for it and said it's okay to take once in a while if needed to lessen urgency. Not sure if it would work or would be safe to take while in a severe flare though. Make sure you stay hydrated at least...
Posted 5/19/2011 5:22 PM (GMT 0)
I think you should be on the phone to your GI every day until they see you. Our GI did not want my son taking immodium when he was in a bad flare.....it can make things much worse. You should check with your doc before taking it. Again, I would not let them push you aside....demand an appointment NOW
Posted 5/19/2011 6:49 PM (GMT 0)
chris: On a positive note, I am on 6mp and I seem to be doing better than before. I also wasn't respondng to 5ASAs. Unfortunately, it does take quite a while to get into the theraputic range and with your condition being so severe, it may not be the best option for you. Usually you would start prednisone to help curb immediate symptoms and start 6mp while you're tapering off and by the time you're off, you should be in the theraputic range for 6mp/Imuran. The problem is, if you can't stabilize with prednisone, you may not have 3 or 4 months to wait and see how you do on Imuran. I hope you can get stabilized and start it because maybe it will work for you. A lot of people have longterm success with imuran/6mp.

I agree with Collicat, keep calling untill your GI will see you. See someone else if you have to! It's not acceptable to wait a week+ to see a doctor when you're doing so poorly. My GI has come in on days she doesn't work to see me.

Perhaps cortisone enemas could get you stable? Do you have those on hand?
Posted 5/19/2011 7:20 PM (GMT 0)
Chris - did they increase the dose of the remi to see if it helps? I am much in the same boat as you with the remi, but I am still holding out hope that the increased dose will work. My GI put me up to 10mg/kg.

Also, when you are flaring as you are, immodium is really not a good choice. Your risk of toxic megacolon is greater when you are flaring.

The pain killers help me sleep when it is really bad. I took them for about a week or so in the past. It's only temporary.
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