Update and a question

ant · Post by **ant** » Sat Mar 06, 2010 6:59 am

Dear Friends,

I hesitated to post this because I do not want to tempt fate. But here goes anyway.

Since 31st Jan I reduced to two entocort pills a day (I had been on three since 28th June 2009).
Since 2nd Feb I have been taking Boswellia (I have not been strict with taking mannose D - sorry because I had said I would be testing that and have failed to do so)
Also in the last six week my new GP Doctor has been giving me high doses (iv) of vitamins and minerals (esp C and B)
Also in the last 10 days I have upped my oral dose of vit D to 6000 a day.
I have, to my best ability, stayed on a GF, DF, SF, EF, legume and nightshade free diet. I have kept off raw fruit and veg and focused on nuts, olive oil, wine vinegar, white rice, meats, fish, shellfish and veg like asparagus, carrots, cauliflower and celery. I have cut back in the last week on broccoli that had been my mainstay but I still eat it occasionally. I also eat potato occasionally (but have cut back since I suspect nightshades). I have used garlic occasionally and various green herbs to add flavour. I still use quite a bit of ground pepper but have cut back on salt (although still use a bit). I drink mainly green tea and wine of all colours. I try to keep away from sugar, although occasionally have fallen for a sweet desert wine.

My last full-on urgent, watery D was 12 Jan.
Since then, with one exception (when I had 4 firm to firmish Bms), I have had 1 or 2 BMs a day.
Since 31st Jan (when I reduced to two entocort a day) I have had 17 days of either firmish or firm/norman BMs; and 17 days of soft/loose but not urgent BMs.
From the 13-28th Feb I had 12 days of soft/loose Bms and was wondering if the entocort reduction was going to lead to a flare.
For the last six days all BMs (with one exception) have been firmish or firm.

I know it has to be my decision, but I would value all opinions on if I should now try and reduce to one entocort a day? I know that things are not perfect, but they may never be. Things are at the moment manageable but I really want to get off entocort.

Sorry for so long a post

Love ant

wonderwoman · Post by **wonderwoman** » Sat Mar 06, 2010 7:11 am

I was very much interested in your post. I have been on another RX since Feb 12 and haven't seen any improvement. I have the Entocort and will start it when the current RX is used. Expect lab back around the 19th. Still experimenting with what I can tolerate or not. Have learned so much by reading the back posts. I am sure you will find help here to make your decision. Hang in there.
Charlotte

Post by **tex** » Sat Mar 06, 2010 10:32 am

Hi Ant,

Man, that's a tough question. 6 days of mostly Normans is kind of a short history. I can certainly understand your desire to get off Entocort, though. I suppose my position would be to give it a shot, if you just can't rest until you do, but please don't be grossly disappointed if it doesn't work, because given your history, IMO, you're probably rushing it a bit. Something like this is sort of like coming off a ventilator, after major surgery. You really can't be sure that you can do it, until you try it.

Best of luck, if you decide to try it.

Love,
Tex

harvest_table · Post by **harvest_table** » Sat Mar 06, 2010 2:33 pm

Ant,

Entocort user here-for 6 months shortly after a CC DX and also started dieting at that time. My hope was to use medication to find some much needed relief (it did that well) and eventually use diet alone to manage symptoms.

We are all different but based on my experience, once the med was out of my system (some weeks after weaning off ) I did begin experiencing D again as well as muscle, joint pain...thankfully those symptoms have never regressed back to my darkest hours but it's literally taken seven years of tweaking diet in order to feel my best. Long term management is part of my reality, but honesty, it's been a good thing.

I'm still surprised by this disease daily and the stories that are reported here.

Good to see you dieting, your on the right track and as Tex mentioned, just be prepared whenever you decide to wean off entirely. All the best Ant!

Love,

Joanna

ant · Post by **ant** » Sun Mar 07, 2010 4:24 am

Dear Tex and Joanna

Thanks for your answers. I think, if I have three more days of firm BMs, I will try going down to one a day.

Thanks for giving it to me straight..... it helps me be prepared for the worst case.

Love, ant

ant · Post by **ant** » Sat Mar 13, 2010 3:03 am

Far too soon I know, but..... 4 days now on Boswellia and one Entocort.

1. Norman
2. Firm to loose
3. Norman
4. Norman

Love ant

Polly · Post by **Polly** » Sat Mar 13, 2010 7:29 am

Dear Ant,

What great news! Am keeping my fingers crossed.

Let's hope this continues......

Love,

Polly

Post by **tex** » Sat Mar 13, 2010 8:53 am

So far, so good.

Tex

barbaranoela · Post by **barbaranoela** » Sat Mar 13, 2010 10:06 am

and more

Barbara

Post by **Rosie** » Sat Mar 13, 2010 2:15 pm

That's great news, Ant! You have embraced the diet from the beginning, and it looks like it's paying off. With your history of osteoporosis, I know that even with 90% of Entocort staying in the gut, the extra 10% has got to be a worry.

I don't have any insights about going off Entocort since I was never on it, but my DF, GF, SF diet has been working pretty well (but not perfect) for me for the past 6 months. Based on what I've read here, I'm going to try adding boswellia and see if I get any added improvement.

Rosie