A positive Update

[ant]

Dear old friends and newbies,

I am naughty not to have posted for so long. The PP community guided me in the long journey to "get my life back", which is the case.

I maintain my strict diet (thanks to the knowledge I was given on this site) and I am now super-aware of the slightest reactions to food: bloating, slight cramp in the gut......often leading to watery D.

Occasionally these reactions still happen (I assume due to lapses in my diet/unintentional cross contamination). I think the average flare would be 2 times a month. Each flare would be about 2 days. So, I am far away from the fear and desperation of the first couple years I had this disease.

Tex suggested that one day I would get off my reliance on entocort (or more precisely the generic version I get for Sun Labs). Well, I am not off it yet. But I have reduced my dose. I average about one 3mg capsule every 4 days. I try and stay off for longer, but I usually sense my gut becoming "unstable" after 4 days and that's when I take one.

Truth is I still have an active social life and go to friends parties and/or restaurants (they all get my "to the chief" card in advance, but mistakes will happen )

As I mentioned a few months back I am moving away from consultancy work and working on a book. Perhaps that has also helped my gut settle.

My apartment in Hua Hin Thailand is still to be legally sorted to my satisfaction. But there is (painfully slow) progress.

Meanwhile, I stay in Hong Kong where history is being made........ I hope with all my heart it is positive and peaceful.

Best wishes to all, Ant

[nerdhume]

Glad to hear such a great success story. Hope all continues to go well with you.

[CathyMe.]

So great to hear things are going well for you! I so enjoy reading the success stories and I think it's especially useful for the newbies just joining the forum to read that there is a bright side!

[twirlitgirl]

I am a newbie and I was curious about what "to the chief" card is? I guess it must be something that lists your
food sensitivities, I think that is really clever. I am often tongue tied when ordering in a restaurant, have gone so far to have called the restaurant up in advance and talked personally to the chef and somehow still had trouble explaining everything, a list would be great. I realize my list will be different than your food sensitivities but just how to word it would be a great help... would you be willing to share a snippet of how you have presented it. Good luck with your book.
socializing and having fun is really part of our lives that I do not want to give up and won't ever give up there are always options, just want to live as normal as possible with this disease and so encouraging hearing stories of how others like yourself cope in situations, really appreciate all the help here, it is amazing. .Ha! thanks for you time.

cheers
Lora

[tex]

Hi Lora,

Here's an example of Ant's "To the Chef" card:

An Example Of A "To The Chef" Card

Tex

[tex]

Ant!

Great to see an update from you. And it's good to hear that you've been able to keep the MC under control.

Regarding the risk of being "glutened" while socializing, a low maintenance dose of budesonide is probably a good insurance policy. If you want to experiment with discontinuing budesonide, there is an alternative that might work for you. Have you ever tried any of the assortment of "gluten-digesting" enzymes that are available these days? They're certainly not a substitute for a GF diet, but they can be a big help when exposed to trace amounts such as at social events. This thread discusses some of them, and a search will turn up additional discussions:

Successfully prevented glutening symptoms with enzymes

Of course, these only address unintentional gluten ingestion, so if you happen to be one who is more sensitive to soy, for example (as some of us are), then it might not provide a solution. Budesonide presumably addresses all food sensitivity risks, not just gluten.

I hope the demonstrations don't get out of hand, and the legal details of that new apartment will be resolved so that you will eventually be able to move in.

Thanks for the update.

Tex

[twirlitgirl]

thank you Tex, much appreciated. It is really well done. Wow.. Ant thank you for putting it together. I will now have some suggestions to offer to the chef of what I can have prepared for me, the next time I dine out... so much less stressful with waiters as well. I am smiling how much it will help. I feel like listening to some music and dancing Ha! have a great day everyone.

cheers
Lora

[dfpowell]

Ant,

Thanks for the update, it's good to hear a success story. Question about Entocort, do you order it with a prescription or is it a source not requiring a prescription? I would like to get some to keep on hand and do not want to go back the the MD and get a prescription.

Thanks,

[ant]

Dear Tex,

Thanks for the suggestion on "gluten-digesting" enzymes. I will try them, but as you say diary and soy intolerance my still get in the way.

I also have been thinking about antihistamines, but out here in Hong Kong (and indeed in the UK) I could not find any that did not have one of my food intolerances in their inactive ingredients. Anyway I have read here that long term use of antihistamines may not be a good idea....... Although I assume probably better than taking low doses of controlled release Budesonide (aka 'Entocort' or 'Budez CR')?

Hong Kong pro democracy demonstrators were attacked last night by "pro Beijing" elements. I can only hope that things do not end badly.

Dear Lora,

Glad the card helps. Music is also a great help

Dear Donna,

I order Budez CR direct from alldaychemist.com in India. I signed up to the sight and buy on-line for delivery in Hong Kong. Not sure how it works if you are in the USA. I had to declare it was only for my personal use and that I had a doctor's prescription (which I could say yes to since I initially did for Entocort). Also that I am not undergoing any other medical treatments that might make taking the drug dangerous. There are boxes to fill in to give your doctor's name etc., but they are not compulsory, can be left blank and the order still gets processed.

As I said I am not sure if this works in the USA. Perhaps others can tell you more about that.

Best Ant