I’ve been meaning to post this.. if for no other reason than to have it for my own records down the road. As I’m sure things will change soon since I’m still having issues.
Current Daily (long-term) Medication:
Asacol® (mesalamine)
- affects a substance in the body that causes inflammation
- 2 ?mg pills – 3 times a day
Azathioprine (Imuran)
- used to inhibit the immune system
- 75mg alternating the next day with 100mg
Aciphex (rabeprazole)
- treat gastroesophageal reflux disease
- 20mg – 2 times a day
Prednisone
- synthetic corticosteroid
- 40mg (though this should change quickly, I hope!)
Antibiotics
Flagyl – 500mg @ 3 times a day (14 day cycle this time)
Cipro – 500mg @ 2 times a day (14 day cycle this time)
Other medications I take, either daily or as needed:
Claritin – generic, for allergies – this also helps my sinus headaches which I call “sinus migraines”.
Yaz – I have 4 wonderful children, love them dearly.. do *not* want any more.
Vicodin (acetaminophen and hydrocodone) – no longer strong enough
Norco – equivalent to 2 vicodin without the extra acetaminophen – 1 pill every 4 hours as needed
Percocet – 1 pill every 4 hours as needed
Antidiarrheal – as needed, according to package instructions.
{ 10 comments… read them below or add one }
WOW. I’m flashing back to when Hubby was at his worst and pre-surgery his list was similar but not quite as long! Cipro and Flagyl still make him cringe…he also once had a bag of TPN for about 6 weeks in place of food.
My heart goes out to you. Hopefully you’ll get to a good place called remission soon. Many prayers.
PS…hubby is now on 6-MP.
Oh.. your poor husband! Was the TPN in place of food completely? Ugh.. and 6 weeks. I didn’t know what 6-MP was so I, of course, googled it.. (sometimes that’s dangerous, isn’t it, lol!) and that sounds almost as scary as crohn’s in and of itself.. How’s your husband coping with it? Finding any relief?
WOW, both norco and percocet….how long did it take you to have you doc write you for that. I would be realy afraid of addiction but the amount of pain I am in that would be a blessing!!!
Judi,
I hope you are getting blood work done at least every two weeks or so to check your LFT’s ( liver function). The amount of meds you are on for any length of time can very well affect your liver function.
Hey Gregg – I struggled a lot with the concerns of addiction when I first started this whole rollercoaster ride. Thankfully, I have a really awesome family doctor, who knows me very well. In all the years I’ve seen him (19 years now), I have always been very hesitant to take any medications, let alone much for pain. He was even very supportive of me when we had our oldest son at home unassisted, even. So he knows very well that I am not taking advantage of the pain medications.
I also made a few appointments in the beginning of my diagnosis just to talk to my family doctor about the use of pain medication and my fear of using it. He was very supportive, explained the difference between dependence and abuse.
I had to make the decision of whether I was going to go through my days relatively pain free, and take the pain medication, or if I would struggle through trying to find other ways to cope and not take the pain medication. I opted for pain medication. I have no regrets and I don’t feel guilty for it. If a time comes when I need to get off of it, my doctor will help me through the process. I don’t abuse it, I don’t take more than I am told is okay.
My sister was diagnosed with colitis at the end of 2009. She doesn’t have insurance and hasn’t had a family doctor for years. None of the doctors will prescribe her pain medicine… It makes me so mad and there is no way I can help her. But she should not have to deal with pain on a daily basis. She’s what I’d consider a health nut (I mean that in a smiley kind of way).. she does yoga, eats well (was vegetarian for a while, then vegan, then went gluten free, etc, etc..). She walks everywhere (she lives in NYC). She’s way healthier than I am and taking pain medication is very low on her list of things to do, but she did reach a point where if they’d have given her some, she’d have happily taken them for relief, if only for a few days.
I get mad at doctors who don’t want to take a chance because of the addiction factor – crohn’s and colitis can both be very painful for some people. To hold out pain medication because of an addiction possibility just isn’t right imo.
Hello,
Anyone out there on Cimzia for their Crohns, I was in the study drug program so I have been on it for about 3 years, so far it is working really well for the Crohns, no flares!
Anyone have body/muscle aches all over? Trying to deal with the pain/aches, any info. would be helpful.
Thanks!
Hi Marla – I hadn’t even hear of cimzia until you posted. Glad to hear it’s helping you so much! That’s wonderful!
As for the body/muscle aches all over – the only time I had anything similar was when I had an allergic reaction to remicade.. my joints got so bad I felt like a little old lady who could barely walk up and down steps.. heck, sitting down on the toilet hurt.. muscles hurt then too, but mostly it was my joints – ever one of them.. shoulders, elbows, wrists, fingers, hips, knees and ankles… I started humira and that has helped, but crohn’s and the aches – but I still have some sore joints after all this time.
Hope you find something to help with the body/muscle aches.. would love to hear about it!
Very true. My GI doctor has blood work done every couple of months when I’m in there. Of course, now that I’m off the imuran, it’s less of a concern. I should post a new list of what I’m on.. as it is much reduced!
Thanks for your concern though.. I do have a very good GI doctor and an awesome family doctor (my “team”) who both keep me under a watchful eye, as well as good communication between the two of them. I fully trust my team and in comfortable in their care. Which is very, very important with this disease – to trust your caregivers.
Instead of Cipro or Flagyl ask your doc about Xyfaxan. Its from the same family of antibiotics but has a better coating and doesnt affect your stomach in any way. It goes right to your colon? i think and starts to work there.
As of now Xyfaxan is only approved by FDA as an anti diarrhea medicine but more and more GI’s are prescribing it to crohn’s patients. (It is being reviewed by FDA now if it should be approved for CD). So your insurance might have problems with it… mine doesnt.
This is good to know, Jeff – thanks! Cipro and Flagyl were harsh… not ones I’d like the thought of taking again any time soon.