Questions about new treatment plan

[Kimberly M]

Hi All!

I will try to be brief in explaining where I am concerning my MC and treatment. I was diagnosed the end of April with MC. Was put on Entocort 3 per day. Doc thought I would be able to start cutting back after just a few weeks.....needless to say that didn't work. After being on the Entocort full dose for 4 1/2 months I still am not able to cut back to even 2 per day. When I saw my doc a couple of months ago he said just stay on the 3 per day until I feel "normal" and then try and cut back. At this point I am still not ready to cut back at all. I had an appt. with my GI doc today and he really wants to get me off the Entocort so he prescribed Dicyclomin 10 mg, 2 per day and wants me to start taking fiber. He also ordered bloodwork to see if I have Celiac's. He was willing to talk a little about diet and said "sure....stop eating carbs and dairy and see how you feel". I have been trying to go GF for about two weeks now.....not sure how well I'm doing with all the hidden gluten in foods but I have really been trying.

Anyway, wanted to see if anyone had tried fiber as a form of treatment and also if anyone has used the dicyclomin, it's used to treat IBS and he felt it may help with the spasms in my bowel or colon?? Sure would appreciate any input anyone has!

Thanks so much!

Kim

[tex]

Hi Kim,

Welcome to our internet family. I hate to start out with bad news, in my first response to you, but your GI doc obviously has very little experience with treating MC, (at least he has precious little experience with treating it successfully). Fiber is contraindicated for any inflammatory bowel disease. Virtually all of us have to minimize our fiber intake, until after our gut heals, otherwise fiber will keep the gut irritated, and it will guarantee that the flare will continue. MC is definitely not IBS, and IBS treatments are worthless, for the most part, for treating MC. Dicyclomine is an anti-spasmotic - it will do nothing to suppress the inflammation that causes the primary MC symptoms.

Unless you carefully follow a gluten-free, dairy-free, and possibly soy-free, diet, then roughly a few weeks after you discontinue the Entocort, you will suffer a relapse, probably every time. (About half of us are sensitive to soy, while most of us are sensitive to gluten and casein). Entocort will suppress the inflammation, but it will not stop new inflammation from reforming. To stop it from reforming, diet changes are necessary.

Most of us who have used Entocort, have found that we have to take it close to a year, before we are able to successfully taper the dose, (and this is in combination with the diet). Without the diet, most of us would have to take a maintenance dose of some medication, (such as Entocort, or one of the 5-ASA drugs), forever, in order to keep the symptoms from returning. There is no cure for MC, but the diet can control it, and Entocort will help to achieve remission sooner, while the gut is healing.

Good luck with your treatment. Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[JLH]

Kim. I'm glad you found us because this is the best place in the world for information and support.

Don't think that your doctor is alone in not knowing how to treat MC properly........

The diet is hard at first but worth it to get rid of your symptoms.

This is a GREAT post from Polly who is a pediatrician.
http://www.perskyfarms.com/phpBB2/viewt ... light=daaa

[Ginny]

Welcome Kim You will find that this group has a wealth of knowledge and particularly Tex. I have been on Entocort since last Nov with the exception of 2 months when another flare took hold, and I have just come to the realization that fiber has been one of my worst enemies. Please take that to heart and hold down the veggies and fruit and when you do eat them; eat them well cooked. Diet is the most important part of getting control of this disease. You will adjust and you will feel better. Feel free to ask any questions. Ginny

[Kimberly M]

Thanks so much everyone for your helpful info and support! I have been reading this site for quite sometime and have found it extremely helpful.

I did want to ask a couple of more questions regarding treatment. Do you all suggest I stay on the 3 Entocort for close to a year or should I try to cut back to 2 after I've worked on eliminating gluten and dairy from my diet?? Also I am considering the Enterolab testing.....can I be tested while on Entocort? You all seem to have trust in this lab. Forgive my ignorance, I am new to all of this but do you feel they are reputible?

One last thing, I stopped in my local health food store and was chatting with them about my situation and the gentleman there suggested "GlutenEase" with DPP-IV Activity. It's basically an enzyme which helps to digest gluten. Would this be helpful if I happen to eat a whole pizza at some point ? or would this just set me backwards?

You guys are all great and I thank you sooo much for your commitment to helping each and every person that needs you!!

Kim

[tex]

Hi Kim,

I have to get back to work, so my answers will have to be brief and to the point.

The diet will eventually bring relief, but it often takes from 6 months to a year, because the gut has to heal, before the symptoms will go away, and healing can take up to a year or two, depending on how much intestinal damage you have. The Entocort helps to suppress the diarrhea, while the diet has time to take effect. 6 months to a year is a typical minimum time for using Entocort, (by members here).

Entocort will not significantly affect your Enterolab test results until you have been taking it long enough to acquire a significant amount of immune system suppression. That normally takes a year or more.

GlutenEase might help, if you were intolerant of whole pizzas. Unfortunately, you're sensitive to as little as a few molecules of gluten in those pizzas, so a crumb or two of pizza can cause a reaction, and additional damage to your intestines. A digestive enzyme is not going to be effective enough to provide any significant benefit for someone who is truly gluten-sensitive. IOW, if you slip up and eat a crumb or two of pizza, GlutenEase might help, (I'm not saying that it will - I'm just saying that it might), but if you eat a whole slice, you're going to have a reaction, your gut is going to sustain additional damage, and your healing progress will be set back. The diet is not easy, but it's the most effective treatment option available, for the present.

Tex

[Kimberly M]

Thanks so much Tex!! I appreciate all you do for so many.

Kim

[tex]

Kim,

You're most welcome.

A few of us are able to eat virtually anything we want, without reacting, while we're taking Entocort, but most of us still have to watch our diet, even while taking Entocort. If you don't mind taking a maintenance dose of Entocort for the rest of your life, then obviously, you won't need to watch your diet so carefully.

Tex

[grannyh]

I have been on entocort since after Hurricane Rita hit Texas (can't remember the year). Did the evacuation thing and found I couldn't find much to eat.. came back and agreed with my gastro doc to try entocort. I took three pills a day for several years before I could cut back to two a day. Now have been on one a day for at least a year.. unless I have a flare..then take two for a day or so.

I can eat just about anything I want.. as long as I don't pig out on anything like donuts:)

Adding fiber?? It is insane.. was one of the first things that was suggested to me in 2002... disaster!

When I was first diagnosed, entocort was not available in the US.. used lomotil for a couple of years.. made me sooo tired.

I did try the diet many are on here.. and have lessened my intake of dairy, soy, gluten for some time.. but with entocort I don't have to totally eliminate it. I found the diet to be tremendously expensive at a time we could least afford it. The entocort costs an arm and a leg.. but we have and had insurance that made it affordable.
grannyh