left-sided pain?

[Lesley]

Mary,
I have some entocort I am not using. I will happily send you some to tide you over until you get yours.

Brandy, you just scared me totally. I have a long trip ahead of me in November, and thinking about not being allowed to use the toilet is a nightmare!

[Christine.]

I too worried about lasting through a 3 hour class. I was able to schedule breaks when needed and I was able to achieve control within weeks of going g/f, d/ f and s/f. Best of luck!
Chris

[beni]

I too have spare endocort if you need them, would be happy to send them if you want. I am weaning off endocort and am taking zyzal, in the past I simply couldnt get past one a day but using zyzal helps me so much, you could try an antihistamine, Beni

[olivermb]

Hi Everyone,

Thank you thank you thank you for all of your comments and support. This is an amazing group. I've been so sad about this whole thing, but at the same time I feel so surrounded by positive vibes. Last night I also sent a note out to all of my friends/colleagues that would be impacted by my condition as I'm treating it. I just decided to be very open about it all just to feel good about not hiding anything. I am floored by all of their outpouring of good vibes. It's amazing, too, how many of them then disclosed to me about various chronic conditions they battle. Here's one line that kind of choked me up in it's love and sincerity: "Please know that I am thinking about you and there is a huge community of people who have had to change their lives because of chronic illness. For many of us, life is better and more authentic on the other side of the journey that you are just now embarking on." Wow.

Soooooo..... with that in mind, Beni and Lesley, I cannot thank you ENOUGH for offering to help me with the medication. I will email you via the forum separately. Unbelievably generous. I am floored.

And thanks, too, in advance, for putting up with my many questions as I continue to learn about this.

So here are a couple to throw out there for anyone who might have any thoughts.

1. If I feel like I'm up to being able to make this trip to China, I'm pretty sure that avoiding gluten in China is going to be pretty near impossible because of the prevalence of soy sauce, etc. Given that I want to try to make this trip, would do you think would be the best strategy in the short term? On the one hand, I really really want to cut out the gluten now to get better. But I'm worried that if I do that and feel better, I'll be hit over the head like a sledge hammer if I reintroduce it while overseas. So I'm wondering if I should allow for some gluten now along with the Pepto Bismol approach (and other meds if I can get them in time) to give me a more realistic vision of what my time in China will be like?

2. The other question deals with colonoscopies. I was warned by you guys that they sometimes make MC worse! And boy, do I think that this is the case with me. Any thoughts why that might be? Is it just the intestines being roughed up? Are GIs sometimes too rough? Is it the prep (I did suprep)? Today, finally, after more than a week, I'm beginning to feel better.

Again everyone, thank you!! And Tex, I cannot WAIT to see your book! When will it be out?

Warmly,

Mary

[tex]

1. If I feel like I'm up to being able to make this trip to China, I'm pretty sure that avoiding gluten in China is going to be pretty near impossible because of the prevalence of soy sauce, etc. Given that I want to try to make this trip, would do you think would be the best strategy in the short term? On the one hand, I really really want to cut out the gluten now to get better. But I'm worried that if I do that and feel better, I'll be hit over the head like a sledge hammer if I reintroduce it while overseas. So I'm wondering if I should allow for some gluten now along with the Pepto Bismol approach (and other meds if I can get them in time) to give me a more realistic vision of what my time in China will be like?

Here is my 2 cents worth:

It is a fact that if you remove gluten from your diet for at least a week or so, your antibody production will begin to slowly decay (even though you will probably still continue to react). If you then reintroduce gluten into your diet, believe it or not, your reaction will almost surely be more severe than if you had never stopped eating it in the first place. This is a quirk of the immune system that causes it to respond especially strongly to an antigen to which it has been sensitized, and then re-exposed after the anti-gliadin antibody level has declined, because the immune system remains on high alert and responds more robustly than it did during a chronic exposure.

2. The other question deals with colonoscopies. I was warned by you guys that they sometimes make MC worse! And boy, do I think that this is the case with me. Any thoughts why that might be? Is it just the intestines being roughed up? Are GIs sometimes too rough? Is it the prep (I did suprep)? Today, finally, after more than a week, I'm beginning to feel better.

Most prep solutions are very caustic, and some have even been known to trigger MC where it did not previously exist. It sometimes leaves visibly inflamed regions in the colon. In addition, the examining doctor uses air to inflate the colon to facilitate the examination, and that process can introduce hairline longitudinal cracks in the mucosal surface of the colon. And, of course, the passage of the scope itself can abrade the delicate mucosal surface of the colon, leaving minor physical damage. And last, but not least, the taking of biopsy samples requires the removal of mucosal tissue by surgical means, and those sites will have to heal.

I hope the book will be available before the end of the month.

Thanks,
Tex

[ant]

Dear Mary,

I may have this wrong, but I believe it is the soy in soy sauce (made from fermented soy) that is the problem with soy sauce..... unless, like some balsamic vinegars, a caramelized colorant derived from gluten is also used. I think gluten itself is easier to avoid in Chinese meals (that use rice as the staple) than western cooking.

Chinese foods that can have gluten included and that I avoid are:
Dim Sum (steam buns with various fillings which can be made with rice flour - OK - OR WHEAT FLOUR - NOT OK)
Egg tarts
Fortune cookies
Moon cakes
Wheat noodles (as distinct from rice noodles which are ok)

The other common food culprits, apart from gluten, that I avoid in China are:
Soy milk, soy sauce and tofu (all made from soy)
Egg
Red bean, or any other bean, including red bean paste
Peanuts
MSG

Best wishes, Ant

[beni]

Hi, you are most welcome to have the endocort, 90 caps so you will have 3 per day for a month, if you need more and cant get them I could probably get more for you, mine are issued by my GP willingly. When my doc insisted I have a colonoscopy she told me her story, she had her first colonoscopy done in her local hospital and she said it was the most horrible procidure she had ever had and much pain after, the next time she swore she would only have it done by the best GI she could find, this time it was a total breese, no trouble at all and no pain after, needless to say she sent me to the same person and I must admit I had no problems and no pain after but of course like everyone I hated the prep so in my opinion it really can matter how good the person is doing the colonoscopy, all your after problems and no endocort, hard to beleive they have been rough to you. Please note re posting the endocort I live in Ireland and would need to post on Monday to make sure you get them in time, when are you leaving????????, in the first month on endocort I was able to eat anything and beleive me I did, I had a lot of weight to get back but as soon as I reduced the D came back so diet played a role and I cut out gluten and salads coffee chocolate citrus and was able to reduce, for you I would take 3 per day to cover yourself, I had no side effects and I am the type who reacts very easily to meds, when I was given PPIs my face went bright resd and my eyes went bloodshot, I have been taking endocort for 14 months in varying amounts, now down to one every other day and although I am scared to say it I have Normans all the time now although more than once a day, good luck, with the trip and will post when I get your address, Beni

[olivermb]

Hi Beni,

Wow, you, like Lesley, are just the greatest to offer this. Finally, last night my GI called me and told me he would write me the script if I insisted. I really do wonder why it took him this long. In the meantime, though, I ordered some from India, too.

My GI has me on Pepto Bismol. I'm willing to give it a go for a little while, especially since I'm now on medical leave. But not forever if there's not substantial improvement soon. My main worry right now is this trip to China. Ant, I sure hope you're right about the soy/glutten. I'm a little nervous, though, because when I look at our bottle of soy sauce, one of the first ingredients is wheat.

If things clear up pretty well in about a week, I guess I'm willing to risk it and go. But there's some nagging feeling I'm getting that this would be a bad, bad idea. I guess I'm just kind of jumpy. Everything is so new.

Beni, you are SO KIND to offer me these meds. Wow, I am very, very touched by that. Thank you so much. The folks on this forum are amazing.

Yours,

Mary

[Martha]

Dear Mary,

Wow, that's a tough call. I hope you get the Entocort in time to see if it controls your symptoms enough, without a change of diet, to let you go on the trip. On the one hand, you hate to miss a once-in-a-lifetime opportunity, on the other hand, you hate to end up spending that opportunity unpleasantly sick.
I'm rooting for you! For things to clear up enough in the next week that you feel you dare try to trip. Have you already bought tickets?

Love,
Martha

[carolm]

Mary, I also had very good experiences with Entocort. It really got me back on my feet and back to work quickly, although at that point I was rather weakened by rapid weightloss, etc. Taking Entocort also bought me time so I could figure out my diet before titrating down. I believe it certainly would be better to travel to China while taking Entocort as opposed to not having it, if you chose to go. Ant's suggestions were terrific, I thought.

take care,
Carol