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New to forum & having very bad time

Hello,
I am new to the forum & have many questions. I have been diagnosed with Crohn's disease 4 yrs now. I was doing very well, then December rolled in & I have not been well since. The holidays were pretty good eating wise, but now for the last 3-4 wks I have been having very painful cramps & nothing is seeming to help. Went to Urgent Care because as no PCP docs are available once Sat arrives. I was told to double up on my bentyl.............I take 20mg but was told I could take 40mg at 5pm & again before bed time. Scares me to take 40mg at 5 & then again around 11:30-12am. I am currently on Entocort EC but now bumped up to 6mg every morning. Do you all go thru this & if so does anyone have something that they use or take to either prevent the cramps or to help the pain from the cramps. Cramps are all day & night intermittently & sometimes are so bad they make me nauseated. Thank you for your input.
RB:)
 
Hi RB,
Sorry you are having such a hard time. I had been doing okay for a while and then a few months ago I began getting very sick whenever I ate. I began taking zofran, gasx, and tylenol with every meal just to be able to eat. Finally when that stopped working I went to my GI who upped my dose of Entocort and now I'm starting Remicade next week. It might be time to check with your GI just to be safe. Good luck.
-CLCH
 
Dear ClCH,
Thank you for giving me some tips I might try. I am seeing my GI doc on Feb. 5th, I just started on 6mg of Entocort upping from 3mg because I cannot take 9mg as it blows out my BP. The tips you gave I am going to try so that I might be able to eat dinner. Bkfast is the best meal for me, have no problems with that meal but dinner is the pits.......that is when I have the most trouble, but these past 3-4 wks have been very bad with the very bad cramps. Thanx again
RB:)
 
CLCH was Entocort the first drug you were put on when you were diagnosed with Crohn's ?
This is my first bout with any drug & I am hoping the 6mg does not blow my BP out the roof & I have to go back to 3mg. I cannot tell you how much I appreciate your message.
RB:)
 
It's no problem at all, I've only been diagnosed for five years but I've been through all the drugs. When I was first diagnosed I was on Pentasa, that did nothing for me. Then they began 9mg of Entocort which didn't help either, while waiting for Humira to be approved I ended up in the hospital for a week, there they put me on 60mg of Prednisone. Then I took Humira for about three months but had every terrible interaction possible from it. So here I am at Remicade which begins next Tuesday for me. The Entocort didn't do much for me, it helped to give me a small appetite but the pain and frequent or infrequent trips to the bathroom are still ongoing. Do you have a BP machine at home or somewhere convenient you can check it regularly? When I was on the Prednisone my BP was sky high and everyone was afraid I was going to have a stroke. It can be scary so keep a close eye on it. Hope this helps :)
 
CLCH87,
Thanx for your reply. Second day of Entocort 6mg. Cramps are starting to abate, hopefully they will totally go away. I hear you about having every side effect from Humira.......that is why I am kinda afraid to try it if the Entocort 6mg doesn't work as I have such a long drug allergy list. I will say some extra "beads" for you that the Remicade works with not alot of bad side effects for you. Having this disease really does suck !!! I can monitor my BP up at Wally World & am planning on getting another BP cuff as the last one just died. I really appreciate your input more than you know.
RB:)
 
Dear CLCH87,
I am so happy that you want to be friends & we can help each other thru our bad times. If you would like we can exchange phone numbers so we can chat that way also. You really have been a great help to me this wk. Not a good week but you helped me thru it & I thank you from the bottom of my heart.
I hope starting Remicade on Tuesday really is the one that will help put you into remission. My remission lasted 2 days.......just a horrible disease & I am saying "beads" ( you know what I mean by beads, right ?) that the Remicade will help you.
Now going to frost my gluten free cupcakes I just made. Having both diseases is a real kick in the butt........don't know which is worse. Do you ever have days when it is just not a good idea to even bother to eat ? I have quite a few of those..............breakfast is my best meal & dinner is the worst...haven't gone to 6 small meals yet.
Take care & have a wonderful weekend.
RB:)
 
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