i started pentasa about 4months ago and its been helping some so dr. added entocort 1month ago. Last 2 weeks, i feel like its going back to before i started the pentasa. I did do 1 week antibiotics that i know upset my stomach but i was like this 6 days before i started them. My gastro dr. says i have mild Crohn's in ileum and ic valve. Why are these meds not completely helping if i have it mild.
If Crohn's is mild, why ain't meds working
- Thread starter matty
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Well, I just answered your other post about c.diff, and if you have that then this would definitely be one reason. In all honesty, Crohn's flares don't have a set time when the meds work, unfortunately, and I've had meds take 6 months or better to start working.
Are you white cell counts/inflammation markers going down? I know it isn't much comfort to here this, but sometimes the response is found in the blood tests long before we feel relief.
At times you can have other bowel infections beside c. diff that will also make it difficult to get relief, and a course of Flagyl and Cipro have been prescribed for me to break a flare.
The stool tests will help figure it out. Hope you get some answers soon.
Are you white cell counts/inflammation markers going down? I know it isn't much comfort to here this, but sometimes the response is found in the blood tests long before we feel relief.
At times you can have other bowel infections beside c. diff that will also make it difficult to get relief, and a course of Flagyl and Cipro have been prescribed for me to break a flare.
The stool tests will help figure it out. Hope you get some answers soon.
i did have an appt today but it was cancelled, so now have one in 2 days. if i get worse i will go into er. I had c-diff in 2007 and it was just awful, i lost 20 pounds and also i had it twice at that time. When i see him on wed i will ask about testing me for infection, is that what you meant about the white cell counts. Its very hard where i live, the dr's i have seen don't seem to know much about ibd and i think its because there are not many in this region that have it. Last month this pharmacy said he has never ordered pentasa and had to order it for me and another one 5 years ago was only ordering the enemas for me. I could not believe that and it makes me feel like i am only one with this disease. I learn here and i quess i will have to teach my dr. Thanks for replying.
PsychoJane
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Matty, I understand that you have a GI, the question is, is he/she a "traveling" GI. I don't know how I could word it differently. By that I am asking if that physician is working all the time at the hospital you see him or is it someone that comes from the outside only a few days every months? I know that is how it is in foreign area of the province here. I'm just asking since you said your pharmacy doesnt order pentasa, I dare to say it must not be a huge city cause it is quite common...
As far as the medicine not working and you having mild crohn, you have to keep in mind that this is a "classification" that is not all black or white. By definition, mild crohn is pretty much referring to the fact you are still able to eat, does not have too much pain, no obstruction, that you have not lose to much weight, etc. You can have mild crohn but it does not mean it remains mild forever. A crohn that does not respond to to "mild crohn" therapy, can be considered moderate because it is unresponsive to aminosalycilates and antibiotic therapy. You don't need to have the worst condition to be in need of another type of therapy. Sometimes the first just don't cut it. I assume your GI will discuss these possibilities with you when you will see him in a few days and exclude the C.Diff prior to anything.
As far as the medicine not working and you having mild crohn, you have to keep in mind that this is a "classification" that is not all black or white. By definition, mild crohn is pretty much referring to the fact you are still able to eat, does not have too much pain, no obstruction, that you have not lose to much weight, etc. You can have mild crohn but it does not mean it remains mild forever. A crohn that does not respond to to "mild crohn" therapy, can be considered moderate because it is unresponsive to aminosalycilates and antibiotic therapy. You don't need to have the worst condition to be in need of another type of therapy. Sometimes the first just don't cut it. I assume your GI will discuss these possibilities with you when you will see him in a few days and exclude the C.Diff prior to anything.
no she is not travelling, i go out to see her, its about 3 hr drive but she is very very busy as she is only gastro dr. in that small city. I could see another one but its 5 hrs drive and much larger city. I do have follow up in aug. There are about 10 pharmacies in this region. I did get it from another one that did have it on stock, but this one is right where my family dr. is situated. They did order it for me. I have 2 towns on either side i can go to which are 1 hr away. Regarding the meds, i did see some people on here who seemed abit worse than me and it helped them. But like you said it doesn't have to be worse to get a different therapy but it just sucks for me because i thought it would work. But i'm still hoping it will kick in. Thanks for replying
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Oh, c. diff is the worst, isn't it? And once you've had it, it seems like it becomes this thing you always dread from then on. When I mentioned your white cell count, yes I was referring to c. diff, but they also can do a CRP and ESR tests to see if your inflammation is improving, though admittedly this test doesn't show inflammation on everyone.
When I couldn't kick c. diff, my GI doctor recommended Florastor, which is a probiotic supplement Saccharomyces boulardii that actually binds itself to the c. diff bacteria and carries it out of your system. It won't replace the antibiotics, but if you're on antibiotics for c. diff it will even help them work better. You just have to be sure to take the supplement an hour before or two hours after the antibiotics.
Admittedly it's a bit pricey but Jarrow makes a supplement with the same active ingredient and is priced more reasonably, so that is what I started taking it twice a day after a few months and my results have been just as good.
It can be hard to find in a health food store so I order it online.
Best wishes to you, and don't hesitate if you need to go to the ER-unfortunately I had to do that very thing to get answers. *hugs*
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Hey matty, Pentasa isn't a very effective medication. It works for some Crohn's patients, but not for many.
Entocort should work on the ileum (it doesn't work for the upper smaller intestine and lower colon), but isn't a long term medication in any event.
As people have said above, "mild" is just a classification that some docs use and doesn't really mean that much. When I was diagnosed in 1999, one of the two GIs I originally talked to classified my Crohn's as "mild" too, I took Pentasa for 4 years and it really didn't help at all (but at the time I really didn't want to deal with Crohn's, which wasn't a smart idea).
Anyway, if you got symptoms and you really want to get rid of them and if Pentasa isn't helping, you might consider the standard long term Crohn's meds (aza, 6mp, biologics). Alternatively, if you rather stay away from any drugs at all, you can try to get into remission through diet, sport, stress relief etc. only, but you should remember to monitor your inflammation level - constant inflammation leads to scaring and all kind of problems down the road.
Entocort should work on the ileum (it doesn't work for the upper smaller intestine and lower colon), but isn't a long term medication in any event.
As people have said above, "mild" is just a classification that some docs use and doesn't really mean that much. When I was diagnosed in 1999, one of the two GIs I originally talked to classified my Crohn's as "mild" too, I took Pentasa for 4 years and it really didn't help at all (but at the time I really didn't want to deal with Crohn's, which wasn't a smart idea).
Anyway, if you got symptoms and you really want to get rid of them and if Pentasa isn't helping, you might consider the standard long term Crohn's meds (aza, 6mp, biologics). Alternatively, if you rather stay away from any drugs at all, you can try to get into remission through diet, sport, stress relief etc. only, but you should remember to monitor your inflammation level - constant inflammation leads to scaring and all kind of problems down the road.
i seen that florastor in pharmacy and it was about 30.00 for 30 pills. I will look out for jarrow next time. I've read many post about the pentasa not working. I have follow up in aug with gastro dr. so i will discuss it then, but hoping it will kick in before then. I think she had mentioned if this does not work,next is imuran. Thanks everyone for replying.
