going backwards

willabec · Post by **willabec** » Sun Jan 23, 2011 2:15 pm

ok....recently posted that i was having a bad day- well that bad day has turned into a bad week - not as bad as it was prior to starting the meds, but worse than it has been. dr. getting a tomorrow. my question is- now that i have been on entocort for 2 months and i feel i am going backwards, i have a "burning" pain that i had prior, my stools are not as good as they were a few weeks ago, the urgency has somewhat returned and the frequency has gotten a little worse. i am sad and frustrated. so, would any of you suggest staying on the entocort or starting from scratch and trying the pepto treatment (i believe it is 8 pills a day for 8 weeks right?) not sure where to go from here. thanks for any suggestions you may have.

Polly · Post by **Polly** » Sun Jan 23, 2011 4:54 pm

Hi Willabec,

Have you tried eliminating dairy and soy? Might be worth a try, since these two sensitivities often go along with gluten intolerance and can be a cause of continuing D. I'd opt for continuing the Entocort and making additional diet changes. I doubt that the Pepto would be of much help at this point.

Love,

Polly

willabec · Post by **willabec** » Sun Jan 23, 2011 4:56 pm

yes, i have pretty much eliminated dairy, but that is about it....i was thinking of doing the enterolab testing, might be easier than trying to do an elimination diet.....???? i just don't understand and i know i keep saying this, why one day is completely different than another and why one day is different at different points in that same day, if that makes any sense?!

Post by **tex** » Sun Jan 23, 2011 5:01 pm

Here's my 2 cents worth: I agree with Polly. Since you were already on the GF diet, supposedly, for several years prior to your diagnosis of MC, then obviously it should no longer be a factor in your symptoms. Response rates to removing other food sensitivities from the diet, (food sensitivities other than gluten), should be relatively prompt, (IOW, with Entocort, you should certainly see significant improvement within a month or so). If you feel that your condition is now deteriorating, (rather than improving), then obviously, some other item in your diet is causing problems, and must be tracked down, and eliminated from your diet. It doesn't matter whether you use Entocort or Pepto-Bismol - based on your response, something in your diet is causing your problems, and whatever it is, it must be eliminated, if you are going to see lasting remission. If you are still eating soy, than it is obviously the one to try eliminating first. Maybe that will be enough to bring remission. For those who are sensitive to it, soy is a major problem - at least as bad as gluten.

If you call your doctor, I am guessing that he or she is going to say that it's time to try a different treatment, (especially since most GI docs don't believe in using Entocort for more than about 8 weeks, anyway). Whatever you choose to do, is up to you. If I were in your situation, I would continue to use the Entocort, I would try to locate the problem food, and eliminate it from my diet, and that should resolve the problem, (unless there are more than one problem foods, which is certainly possible), so in that case, I would keep eliminating additional foods, until my symptoms improved. I would certainly eliminate soy as a first step, to see if that helps.

willabec wrote:i just don't understand and i know i keep saying this, why one day is completely different than another and why one day is different at different points in that same day, if that makes any sense?!

That is happening because you are still eating something that is causing you to react, and the fact that you do not react constantly is sort of irrelevant, since most reactions are dosage dependent.

Tex

Polly · Post by **Polly** » Sun Jan 23, 2011 5:06 pm

It's just the nature of the disease, especially in the early stages. I think you'll drive yourself crazy worrying too much about the "whys" of this disease. With MC, "it is what it is". But, continuing to search for answers is key too, so I would highly recommend the enterolab tests in order to take some of the guesswork out of your search. Progress with MC is measured more in months than in days or weeks. It took me almost 9 mo. to see my first formed B.M. Hang in there!

Hugs,

Polly

Joefnh · Post by **Joefnh** » Sun Jan 23, 2011 6:03 pm

Hi willabec early on it will seem like 2steps forward & 1 back. I agree about the soy after i eliminated gluten I actually found that I was reacting quite badly to soy

Hang in there it the road to remission is a long and winding one

Joe

willabec · Post by **willabec** » Sun Jan 23, 2011 6:05 pm

thanks everyone for your support...it is just that i don't have too much patience! was really hoping to pop a pill and be done with it....question, if i am going to try to see if soy is the culprit...where do i begin? i have not eaten too much process foods in the past week, so i doubt it is soy.....i believe soy is in most process foods right? i can write down what i have eaten in the past week (yeah, crazy i know) to see if any of you can figure out what my deal is??? i do think the dr. will want to change the meds. but i don't know...he did want an update before i renewed my prescription which is due in the next 2 days....so i have to call anyway....we shall see what he says!

Celie · Post by **Celie** » Sun Jan 23, 2011 7:11 pm

Willabec,
I am sorry you are having such a hard time. None of us have any patience when we feel terrible. Hang in there and try eating just homemade chicken soup with carrots and rice. See if that makes you feel better. If so, add foods back one at a time.

Good luck!!

Celie

willabec · Post by **willabec** » Sun Jan 23, 2011 7:24 pm

i did the chix soup thing last week and that is when things started to go south.... :) but thanks for the advice....

Celie · Post by **Celie** » Sun Jan 23, 2011 8:39 pm

Sorry - didn't mean to bring back bad memories.... Well then, one time I just decided that since it did not seem to matter what I ate, I would eat anything I wanted. That didn't go to well, either but it tasted good;)

Celie

Celie

Foxnhound8 · Post by **Foxnhound8** » Sun Jan 23, 2011 9:42 pm

Willabec,

Like you, I have had the one step forward and 2 steps back. My doc added Apriso to the Entocort and I have at least slowed down to once or twice a day heading to the bathroom. I was going all night long, so this is an improvement for me although I am far from normal. Life is more tolerable. I sent my samples to Enterolab first thing. I am still waiting for results (they take about 3 weeks). In the mean time I am starting to test out the gluten free foods out there and learning about how soy effects me. A bunch of trial and error and very frustrating. Hang in there.

foxnhound

ant · Post by **ant** » Sun Jan 23, 2011 10:28 pm

Dear Willabec

yes, i have pretty much eliminated dairy

IMHO if you are casein intolerant (and it is likely that you are intolerant to one or more ingredients in addition to gluten to still be reacting) you would need to be 100% dairy free.

Hope you get better soon and good like with the doctor's appointment.

Best ant

ant · Post by **ant** » Sun Jan 23, 2011 10:30 pm

wooops!!! (no edit)

that should read "good luck with the doctor's appointment".

best, Ant

Gabes-Apg · Post by **Gabes-Apg** » Sun Jan 23, 2011 11:15 pm

If there was a quick and easy solution to MC - I doubt whether this site and all these people would be here

MC will definately test your patience and determination....

Soy is hidden in alot of products, some gluten free flours and cereal products have soy in them, alot of dairy alternatives have soy in them, there is a list of all the names that soy is known as on this site.

I even found that most lipsticks have gluten and soy in them. your reaction could be as a result of ingesting a small amount of ??? (gluten/soy/dairy)

it is a bit overwhelming at first, but wellness and minimal D is worth the crusade.....

MaggieRedwings · Post by **MaggieRedwings** » Mon Jan 24, 2011 7:43 am

Morning Willabec,

I agree that mostly dairy free does not cut it - 100% on any intolerance is the only way to go. Take it from one who spent years going 2 steps forward and 1 step backward that you can beat this disease. There is not easy fix for it and patience is the key. Pepto will do nothing in my opinion. Good luck with your doctor's appointment and hang in there - one day at a time and breathe deep.

Maggie