The Entocort Dilemma

Kari · Post by **Kari** » Thu Mar 10, 2011 8:35 am

Linda,

Just read your post and it made me cry - so very sorry about your sister, and am happy to hear that you're able to help your niece in this very difficult transition. Strangely, I'm dealing with a similar situation, as I have a sister who has bone cancer, and her daughter lives with her. I'm very close to the two of them, and try to help to the best of my ability. Anyhow, good to hear that you're back on track with MC management, and I totally agree that it is wise to take a sabbatical from trying to figure out intolerances.

Gloria,

I'm glad you've made your decision on how to proceed for now - the uncertainty of what to do next creates its own stress level. I wish and pray that this time you will meet with success. FWIW, I've not seen Norman for quite some time, but I'm feeling well, and have BM's once or twice a day with no urgency. Imodium has become my friend, so if the BM turns too watery, I don't hesitate to take some.

Love,
Kari

Kari · Post by **Kari** » Thu Mar 10, 2011 8:51 am

Maggie - just noticed your post and wanted to tell you that I'm sorry about what you and your family are going through - you'll be in my thoughts.

Love,
Kari

TooManyHats · Post by **TooManyHats** » Thu Mar 10, 2011 9:03 am

Dear Maggie and Linda,

I'm so sorry to hear about what you're both going through. You are both in my prayers. May your families feel peace and love as you go through this.

Gloria,

You have immeasurable patience. I hope this goes well for you.

Linda in BC · Post by **Linda in BC** » Thu Mar 10, 2011 10:04 am

Dear Maggie and Kari;

I am so sad to hear that both of you are going through this too. I will keep you in my prayers as well.

Dear Gloria , Ant, Shirley, Kelly, Kari, and Arlene;

Thanks for all your kind thoughts and support.

Linda

Pat · Post by **Pat** » Thu Mar 10, 2011 10:02 pm

Maggie, Kari, and Linda,

So very sorry you and your families are going through these illnesses. It must be very hard. You all will be in my prayers and thoughts.

Gloria,

Sounds like a good plan. I'll be keeping my fingers and toes crossed for you. I feel we are really on to something good with the MRT!

Pat

Polly · Post by **Polly** » Sat Mar 12, 2011 2:28 pm

Gloria,

I agree with your decision. We are both pioneers. I have used diet alone to attain remission, and you have used longterm Entocort and diet. I am beginning to suspect that, as you said, full, sustained remission may not be possible with Entocort. At least for those of us with so many sensitivities. It does appear to mask the symptoms, which prolongs the amount of time it takes to react to a food. So it becomes extremely frustrating to see timely results from the elimination diet. And Entocort may even totally suppress some of the more minor reactions, so that you will not get accurate results at all.

I am thinking that if you can go off Entocort indefinitely and just eat your safest foods, as you are planning, it might be the best thing. Give your gut the chance to regain its normal reactions to foods. Of course, you will have to put up with the limited diet (nothing new there, right?) and the chance that you might react over time to even some of your current "safe" foods. But if you can get the gut back to square one, it should be much easier and more accurate after resuming the elimination diet. At least that's what makes sense to me.

Thanks so much for your pioneer spirit and for the experience and information that you are contributing to this board. It will undoubtedly help others down the road.

Hugs,

Polly

Gloria · Post by **Gloria** » Sat Mar 12, 2011 3:55 pm

Pat,

Yes, the MRT testing has helped me figure out several of my additional intolerances. I look forward to the day when I can add some more safe foods to my diet.

Polly,
Thank you again for your support. You are a dedicated cheerleader!

Polly wrote:But if you can get the gut back to square one, it should be much easier and more accurate after resuming the elimination diet.

I hope I can make the transmission smoothly from an Entocort user to a non-user. Time will tell, and I will give it my best effort. I am always aware that others are monitoring my progress or lack thereof. That's why I try to be as honest as I can about my situation.

If I ever get off Entocort for good, we should have a cyber-party. Just imagine the food we could serve that would consider all of our intolerances....um - water?

Gloria

Kari · Post by **Kari** » Sat Mar 12, 2011 7:10 pm

LOL Gloria - don't forget the delicious ice cubes

.

Love,
Kari

MaggieRedwings · Post by **MaggieRedwings** » Mon Mar 14, 2011 5:56 am

Morning All,

I should have worded my message better since I understand what Kari is going through with her sister. My sister passed away at the age of 40 over 20 years ago and since I still can vividly understand the situation I can understand people's situations in this type of tragedy.

Thank you though so much and wished I had known all of you then. I needed someone then since I was pretty alone with the situation.

Love, Maggie

Coach Polly · Post by **Coach Polly** » Mon Mar 14, 2011 9:36 am

I liked Kari's answer--it seems sensible. :bigbighug:

Bifcus16 · Post by **Bifcus16** » Mon Mar 14, 2011 8:57 pm

Hi Gloria,

I hope you finally get some success with getting off the Entocort.

With many drugs there are side effects as you come off them. Caffeine is a classic with the headaches and grumpiness etc usually lasting a few days. The only thing that stops the side effect is time or taking more of the drug.

Is it possible that you react to coming off Entocort by having D? If that is so, then persevering through that stage with the help of Immodium might be worth it. I guess you need to be in the right place mentally and physically to cope with that, and prepared for that eventuality. It might just be a 'detox' type stage the body needs to go through (almost like an addictive response).

One suggestion with Immodium. I always find regular Immodium does not stop the D for me. Immodium advanced works a treat as it has no lactose. I have heard others here have exactly the opposite results - so it may be an issue of differences in international formulations. At any rate, it would be worth checking into thoroughly so you know what to try first, and be prepared to change varieties/brands if you still have issues.

Good luck!!

Lyn