Update - a forced experiment

[ant]

Dear Potty People,

I thought it high time that I give an update on how I am doing.

To give some context to those who were not around when I posted more often...... Since 2008 I've been through the long journey that most here go through.

With multiple intolerances I found I 'got my life back' after a couple of years on a GF, DF, SF, LegumeF, EggF and NightshadeF diet and Entocort (Budez the generic version). I gradually (with many ups and downs) tapered down on the Entocort until by the end of last year I was averaging about one 3mg capsule every other day.

This year tried to go for longer without Entocort and sometimes it was a week or 10 days before a flare came back. When it did I would manage it with one or two Entocort capsules and Imodium. Within a day or two I would be back to normal for say another few days. In an irregular pattern I sensed the occurrences of these short flares was very slowly reducing.

Then two months ago I got a sudden severe and prolonged attack of vertigo. I was hospitalized for a week and completely lost my balance (my balance is still a bit off). The diagnosis was Vestibular Neuritis, an inflammation of the nerve between my left inner ear and the brain. This had happened to me before (about 15 years ago) at that time it was DX as Labyrinthitis and was also hospitalized for a week. The doctor said this latest attack was either triggered by a virus or an autoimmune condition or both. (I obviously made him aware of my MC).

Anyway I digress... Here is the 'forced experiment'.......

I was on an IV drip for a week. They also injected me with Valium, but only to start with. The drip had plenty of nutrients including Vit B. I was also on Serc pills for about ten days. But the big gun was Prednisone, which I had in high doses, gradually tapering off after two weeks. Of course I did not take Entocort then. After 6 days in hospital I also got a infection in my vein due to the IV. To deal with that I was on cephalexin tablets for two weeks. I was worried this would cause D (but more worried about the infection, so took it). I took the cephalexin for about a week after getting off the Prednisone. There was no D (of course I assume the Prednisone was still in my system).

Anyway, after getting off all the drugs. I continued my diet routine ...... I waited for D, but 6 weeks since taking the last Prednisone (and no Entocort) I am still normal. I do not want to tempt fate but I am wondering if the drugs I took due to the vertigo and the vein infection somehow triggered a more sustainable MC remission?

Wishing everyone success in their journeys. I have learned that not all are the same. But, whatever the road this board is a wonderful guide.

Ant

[tex]

Hi Ant,

It's great to see an update again, especially one describing progress.

Your post brings to mind another member here who joined several years before you, and who tried everything he could think of, and was still unable to resolve his symptoms, until he tried a sizeable dose of Prednisone. It appears to me that the reason why this works is that it "shocks" the immune system enough to knock it out of it's "comfortable" pattern of behaviour, and forces it to reset or "reboot", so to speak. At least that's the way I see it. Anyway, here's Bob's story. See what you think.

Bobs Prednisone -> Entocort

Thank you for sharing your experiences and your insight. I hope that the treatment has indeed ushered in a long-term period of stable remission. It certainly appears to have done so.

Tex

[ant]

Thanks Tex,

Just read Bob's thread. Fascinating. Thanks for pointing it out.

It seems he ended up on a pretty similar regime to me by 2012. His 'shock' treatment of Prednisone was obviously in a different sequence than mine. For Bob, it was to hit a really bad and long flare before going onto Entocort. For me, it was to treat the nerve inflammation (but would also effect the rest of my body and thus MC) at I time I was not in a flare and had already very gradually tapered down to an intermittent use of Entocort.

But, I agree the shock treatment seems to be effective. I hope it lasts.

I am impressed by his doctor. Especially when he said

....not to stop Entocort until there was zero inflammation for 3 consecutive months.

My experience of a very, very slow taper supports that advice.

I am writing this in bed and am about to go to sleep (being in an Asian time zone). Tomorrow I will try and look up the exact dosages of the Prednisone I took.

Best wishes, Ant

[Gabes-Apg]

Ant!!!
So good to hear from you, but sorry to hear of your medical issues....

If you are having nerve issues, I would highly recommend magnesium, there are sprays/lotions that apply to skin so it does not cause any D....

It is just as important as Vit D3.....

I can send you some if you can't find any in Hong Kong.... Let me know.

Take care
Healing hugs Gabes OOxOO

[tex]

My experience of a very, very slow taper supports that advice.

I totally agree that a very, very slow taper is the key to success when using Entocort.

Tex

[Martha]

Ant, good to hear from you.

Our bodies continue to be a mystery--one thing comes up and changes another in unexpected ways!

Did you ever end up building a place in Thailand? My son is still in Bangkok. I was there in Dec. and Jan. for the birth of yet another grandchild. A sweet little boy. This time we traveled around a little bit, so my husband and I got to see a national park and go to the beach near Monkey Island.

Wishing you all the best,
Martha

[ant]

Hi Gabes,

Thanks for your note and healing hugs! Hope things are ok with you.

I will look out magnesium sprays in Hong Kong. I never knew they were important for nerves. If not, I will take you up on your kind offer. I hope to visit Australia soon (i.e. within the next 8 months), so maybe we could catch up.

I plan to go to Sydney, Perth and Melbourne to trace my the footsteps of my grandparents. I have put up a website about them: www.montyandstellamarks.com

Hi Martha,

Thanks for your best wishes. Funny you should mention Thailand. The vertigo attack happened when I was in my condo apartment in Hua Hin. I finally moved in 4 years late!

I was taken (by ambulance) to Bangkok Hospital's new branch in Hua Hin - 2 days in ICU to start with (they wanted to rule out a stroke or brain tumor). I was very impressed with the hospital. Good doctors and specialists and first world equipment (it is a private hospital so thank goodness I had some in-patient insurance).

I plan to spend about 30% of my time in Hua Hin. So, let me know if you come to Thailand again. It would be great to meet up. By-the-way how do you find Thai food? I find that as long as they dial down the hot spices a bit (but not completely) and not use MSG and not try to ape western rubbish food, it is pretty good for people with MC.

All the best, Ant

P.S. I had promised to post my Prednisone doses and tapering for reference, but the documents about that are (I think) in my Hong Kong flat. I will try and post them when I am back there next week.

[Martha]

Dear Ant,

I grew up in Asia, and spent much of my adult life in Asia, so I'm ashamed to admit that I wasn't brave enough to try the food when I was in Thailand. On my first trip, I took along the chef's card in Thai which you so kindly sent me, and when I suggested using it, my son just laughed and pointed out that most of the people cooking at the kind of places where we might be eating wouldn't be able to follow the needs, if indeed they even understood it! I was mostly afraid of soy, and cross-contamination. I actually did order stir-fried morning glory leaves, as that is one of my favorites, and in English tried to explain that they shouldn't use soy sauce in it. It tasted wonderful, but I did have a reaction.

On this latest trip, when we were at the beach resort and had to eat out, I stuck to one of the curry dishes. This particular resort was recommended by my son's friends who have gluten-free daughter, as one that is helpful in diet things. I think it may be owned by a French couple. Anyway, I didn't get sick at all on this latest trip, but I also didn't eat any real Thai food.

If you can recommend a couple of dishes that ought to be safe, I'd appreciate that. I love Indian, Chinese, Burmese, and Indonesian food, and I like spicy things, although I've heard that Thai food is one of the spiciest, so maybe you are right that dialing down the spice might be a good idea.

It would be nice to meet you. I'll let you know when we go again, and maybe it'll be at a time when you are in Thailand too.

Oh, I looked at your website on your grandparents. Very nice. They both sound like very talented people. And your grandmother painted royalty!

Martha

[Polly]

Ant, old buddy!

So good to hear from you, although, of course, I am sorry to hear about your vertigo. At least there was a silver lining.....a much-welcome remission! Yay!

Also, I love your website. Very interesting and well-done! Kudos! What accomplished grandparents you had!

I think you have been around here sporadically, but I wonder if you caught any discussions about bile acid diarrhea (BAD)? Here is an excellent review article about it:

http://www.medicine.virginia.edu/clinic ... Oct_12.pdf

This condition is missed/misdiagnosed in the U.S., mainly because we don't have a good test for it, but it is becoming well-known in the U.K., where they do have a test. I believe it may be an underlying problem for many MCers (studies at least says 40%), especially those of us who are never really able to experience a complete and lasting remission despite our best efforts. The treatment is sequestrants, like cholestyramine, which are quite safe (no systemic absorption). I am taking it now and have been the best I ever have, since diagnosis 15 years ago. So is at least one other member here, as well as another I know of from a different MC internet forum. In fact, my GI doc has changed the way she treats MC....she begins with Pepto Bismol and the low FODMAPS diet, and if unsuccessful moves to cholestyramine. Entocort is a last resort. I saw one study where, using a similar protocol, not one patient ever needed Entocort! BTW, I have also found the low FODMAPS diet to be helpful.

Keeping fingers crossed that you continue to enjoy remission.

Love,

Polly

[ant]

Dear PPers

Back in Hong Kong....

Here were my Prednisone doses......

I believe while in hospital for a week I was on 5mg 3 times a day (but I do not have record of that)

After release from hospital....

First 2 days 5mg 3 times a day
Next 2 days 5mg 2 times a day
Next 3 days 5mg 1 time a day

I was also on Serc (as mentioned), Neurobion and Sermion (Niceroline) for the week.


Dear Polly,

Thanks for introducing me to BAD. I have downloaded the article and will read it tonight.

Many thanks for your kind words about the website about my grandparents. It is close to my heart.

Dear Martha,

Also, thank you for your kind remarks about my website.

Did you have the Thai version of the "To the Chef" card? Without the card, the trick about ordering in Thailand is to say "no soy sauce" and instead insist on "nam blah" (fermented fish sauce). That is if you can tolerate fermented fish sauce. Soy sauce is actually Chinese and Japanese, not Thai. The authentic Thai equivalent is "nam blah". All restaurants from top to bottom in Thailand will have "nam blah".

The other trick is to insist on no MSG, "Mai sai churot" mai = not; sai = put; churot = MSG.

As long as these are not included, I find the following (ordinarily available) Thai dishes work:

Tom ka gai (boiled chicken spicy coconut soup) - but make sure the do not add tomatoes.
Larb moo or Larb gai (spicy minced pork or chicken) - ask for not too spicy.
Simple grilled chicken, duck or fish.
Wok fried vegetables (not legumes)

All with steamed rice.

The good thing is that most authentic Thai cooking uses oil and coconut rather then butter and cream. Of course I try to insist on olive oil, but when they do not have that I recon vegetable oil is much less problematic then butter.

Authentic Thai cooking also uses a lot of local herbs and lime juice which is ok for me.

I hope this gives you some 'hints' the next time you are in Thailand.

Best regards, Anthony

P.S. I pray for the victims of what just happened in Thailand. Nowhere in this world is safe.

[ant]

Dear Polly,

Just read the BAM report (I much prefer your acronym, BAD!)... very interesting, especially those with Lymphocytic Colitis having an even higher incidence (60%).

But I got a bit lost in the science......I am wondering, if I detect pale or green stools is that an indication of BAM/BAD?

It has been 7.5 weeks since I came off Prednisone and not taken Entocort with no return of D. Perhaps I should wait for a return of watery D before trying out cholestytamine.

Are you still doing well on cholestyramine?

Best wishes, Ant

[Polly]

Hi Ant,

Pale/green stools are often related to an increased transit time through the gut. It takes a while for the normal green bile to become the brown color, so if it moves through too quickly, you can see different colored BMs. Interestingly enough, one of the causes of an increased transit time is too much bile acid in the gut.

Absolutely, I would not do anything at this point, if you are not having D. But if it returns, I would think a trial of cholestyramine might be worthwhile. It is so easy to do (and safe). I am still doing well on it, thanks.

Let's hope the D does not return!

Love,

Polly