It's been a year, 3 weeks+ off Entocort

[pieroaj]

I've been on and off this site for a year. It has helped in so many ways. A quick summary, diagnosed in March 2017. Prescribed Uceris - too strong, ended up in hospital for a variety of reasons, all GI. Switched GIs and changed to Entocort in August. Symptoms were such that 3 mg every other day was sufficient. Symptoms not perfect but manageable. Gained 12 pounds in one year. Struggled with diet changes. Jan 3, OBGYN told me I needed to work really hard on weight and managing MC (she said that I needed to come off of the Entocort. She understood why I was taking it, but that it was not a long-term solution). Referred me to integrative medicine doctor. Funny thing is I already saw this doctor, but was overwhelmed by all of the changes she wanted me to make. Actually, I spent most of the first year overwhelmed by MC. OBGYN said "it will be hard, but you have to do this." For some reason, her words encouraged made to make needed changes. So, I have been gluten, soy and dairy free since then. I don't eat raw foods (although GI says that raw foods should not cause issues - I beg to differ on that one). From integrative medicine doctor, I take Restore, grapefruit seed oil (a fecal sample came back with a specific bad bacteria) and Saccharomyces Boulardii for MC. I do topical Mg and Vit D daily. I take another handful of supplements to deal with MTHFR gene issues, histamine issues, Cu/Zn imbalance. In March, tapered Entocort to every 3 days. I am officially off Entocort since April 1. So far so good. I know it is early on with no Entocort, but hoping that if I keep with the diet and what I am doing, symptoms will be manageable. I also have been exercising regularly. Down 5 pounds since January - not a lot, but better than nothing. I still eat rice and potatoes, probably more than I should if weight loss was my number 1 goal, but it is my second goal. Functioning without Entocort is my first. I am still not sure about some of my supplements, but I am going with them for now. If my symptoms change, I will probably stop them (not the Vit D and Mg though).

My take-away after one year:
-be kind to yourself
-you have to find your path (most doctors don't fully understand MC)
-diet changes are hard, but essential
-change is possible

And a huge thank you to everyone on this site. Just having someone to listed, personal stories to read, and not feeling so alone, has meant and helped so much.

Thank you!
Angela

[tex]

Hi Angela,

Thanks for the update. it sounds as though you are on the right track and doing well.

I hope that nothing will interfere with your continued remission.

Tex

[Erica P-G]

That's awesome Angela!


Hang in there, as it certainly is a journey for us all.

So encouraged for your progress!
Hugs
Erica

[Gabes-Apg]

wow wow wow - what a beautiful post and fantastic update

I hope the improvements and wellness keep coming for you!!

and I LOVE this

My take-away after one year:
-be kind to yourself
-you have to find your path (most doctors don't fully understand MC)
-diet changes are hard, but essential
-change is possible

[Marcia K]

Your progress is awesome! I hope it continues. I love "be kind to yourself." So true!

[Kerry61]

Hi im a newbie ..i have ulcerative colitis im currently on budesonide just wanted to let you know that grapefruit interferes with entocort..its an enzyme interaction and it is is quite a serious one so im not sure if it is the same with grapefruit seed oil but maybe check with the pharmacist ..love this site so much information on it xxx

[tasmtairy]

That's good news Angela!
It's nice to hear a success story coming off of Budesonide.