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What IS a maintenance med for CD? GOOD Dr visit today! new plan of attack

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Crohn's Disease
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Posted 9/2/2008 2:43 AM (GMT 0)
I have been reading here and have learned that even if a CD patient is in remission, has minimal flares or mild symptoms, that they should remain on a maintenance medication.  I have been re-searching CD meds and their indications, but I haven't come across any that specifically say they are for maintenance.

I want to discuss this with my Dr, as I am currently on a taper of Prednisone (from 30mg) and am currently at 5mg for this last week, so we need to discuss meds.

In the past I've been on asacol, colazol, 6MP, balsalazide and remicade.  I don't feel I had any positive results because of the damaged/diseased portion of my colon that was very bad.  However, it has recently been removed (resected?) and I am feeling much better.

On my own about a month ago I began taking acidopholus and I feel that helped considerably.

I do not think I am in remission, though I am feeling better than I have in a long time.  I am still having numerous trips to the bathroom, numbering 8-20x/day.  Most BMs are almost fully firm, some slightly looser, but still sort of formed though soft.  Gas is my biggest problem.  Urgency is still rather 'up there' but I can hold it off for a few minutes to give me time to get to the bathroom (walking instead of running).

What I would like to discuss with my GI specialist is a maintenance med, and something that will help with motility OR possibly get my BMs to exit in larger amounts with fewer trips to the bathroom.  I seem to 'go' most often after I eat.

Any suggestions for me to talk to her about tomorrow?

Heidi

Posted 9/2/2008 3:11 AM (GMT 0)
My doctor says Pentasa is my maintenance drug. I take 2 500mg pills 4x a day. Right now I also take prednisone and just started Imuran.
Posted 9/2/2008 3:32 AM (GMT 0)
Your maintenance drugs would depend on where your CD is active...since you mention being on asacol, that clearly indicates to me that you have activity in your colon...many do not find relief from oral RX for their CD, many are able to control symptoms better by using natural products (that are natural anti-inflammatories) and diet along with portion control, using digestive enzymes to help break food down so it's less work for the colon and probiotics more beneficial and often without side effects compared to taking oral RX as those often cause other negative issues besides sometimes increasing/exacerbating symptoms as it is...this is a very individualistic disease and NO WHERE is it written that one with IBD HAS to be on oral RX in order to get well, prolong remission or keep from having surgery, that is just not accurate information...you find what does work for you and stick with it...afterall many who are faithfull in taking their oral RX and finding remission do not always stay there either...it's the nature of the beast.

If there were easy answers then there would hardly be any of us posting at support forums...what works for some doesn't work for all and there are varying degrees and types of CD, from mild to severe activity to fistulizing CD to stricturing CD to only inflammed CD which is why there is not one answer for all...

Probiotics are pretty much essential for all IBDers because we tend to have bacterial over-growth and the researched evidence that bacteria is largely connected to CD with how our immune system recognizes it... and fibre is also essential for most, those with stricuring CD must be more careful with fibre but bottom line is fibre is still important as an aid in having a healthier functioning intestinal tract.

:)
Posted 9/2/2008 2:32 PM (GMT 0)
My maintenance drug is Colazal. When I was first diagnosed with Chron's, the Colazal is what put me into remission. 4 years later (this year) I had a very bad flare for 7 months straight. I was sure my body had become immune to the Colazal and my GI would put me on Humira/Embrel/6MP etc... instead he put me on a small Pred taper and kept me on the Colazal and I started feeling much better. He said at the conferences on Chron's he goes to, the question about what drug to keep a patient on is always, "WHAT PUT THEM INTO REMISSION THE FIRST TIME?" So that's why they've kept me on the Colazal.

The last time I saw my GI, I asked him to put me on a drug that I was on prior to being Dx with CD - when I'd been Dx with IBS - called LIBRAX. I've been on it for over a month and for the most part I've felt GREAT. Librax is used for spastic colon and is also a calming drug for anxiety, which I would think most of us Chronies deal with a lot. I believe the Librax has helped me a good deal in both respects. It's an old and proven drug.
Posted 9/2/2008 2:49 PM (GMT 0)

I only take Asacol as my maintenance med.  I am having a test soon called a CT Enterography and if it shows any inflammation then we are discussing adding 6mp.  I am hoping I can stay on just the Asacol, because it works well for me.

Maintenance meds are important, but also modifying our diet is important too.  Since my resections I now stay on a low residue diet all the time.  It took time to figure out what works best for me and this diet seems to work for me.  If I were you I would also keep a food diary to record how different foods affect you and avoid the ones that cause problems.  I think with the amount of BM's you are having each day, you might be able to modify your diet some to reduce the gas and multiple bm's you are having.  Good luck!

Posted 9/2/2008 3:10 PM (GMT 0)
Sorry, this is a bit OT, but Nanners what kinds of foods do you eat on a low res diet? What's a day like eating for you?

I keep a Chron's diary every day...food, bowel movements, aches, exercise, when I took my meds, whatever...but I cannot pinpoint any food that seems to set my Crohn's off. One minute I feel so bad I only do Ensure, crackers or soup and the next minute I'm ordering a pizza! So irritating.

The diary is a good thing, though, because once it becomes habit, I remember to take my meds! Before I was taking my Colazal when I remembered it (9 pills a day - 3 pills, 3 times a day). With the diary, if I haven't written down that I've taken my meds, then I haven't and need to do so.
Posted 9/2/2008 3:19 PM (GMT 0)
mine was 6MP, but now i'm on remicade.
Posted 9/3/2008 12:18 AM (GMT 0)
I had a great, productive appointment with my GI today.  Overall I'm doing very well and we discussed my symptoms and how I've been feeling.  Then we discussed meds to use, as currently I am on the 5mg week of a 30mg Pred taper.  I had printed out a sheet of various meds and we are going to use a combination of:

Methotrexate ~ begins with a shot 1x/week for 6wks and then pill(s) 1x/week maintenance.

Hyoscyamine ~ anti-spasmodic to help slow down my guts, possibly give me less number of trips to the bathroom.

We discussed meds I'd been on before and agreed that mesalamine just hasn't worked for me.  We don't think my symptoms call for the Heavy-Duty-Big-Guns like Remicade or 6MP so we have decided to try this different route of treatment.

Next appt is early December.

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