Two-year summary

Gabriel · Post by **Gabriel** » Thu Jan 05, 2012 12:00 pm

Two-year summary
I have been lurking around this forum for nearly two years, asking few questions because I manage to find most of what I need by searching the posts, and saying little because I didn’t think I could contribute much that hasn’t already been said in one form or another. But it has now been close to two years since my MC diagnosis came in, and I think a summary of sorts is in order.
The first thing I learned was that local gastroenterologists knew little more about MC than you can find in the first paragraph of Wikipedia. Luckily, Google immediately serves up this forum, which has proven to be the only truly reliable source of information for me. I eventually located a retired specialist in internal medicine who was familiar with inflammations of every type. But he is entirely old-school biomed, and he right away put me on steroids. Maybe it was necessary in the initial and very acute stages. After experimenting with several flavors we ended up with 20 mg/day of Prednisone. I was on this regime for more than six months. Then last fall I had a very bad flare-up, and he upped the Prednisone first to 30 mg, then to 40 mg. That stopped the D but shortly afterwards I started feeling a host of side effects (opportunistic infections, moon face, exaggerated stoop, brittle skin, loss of bone mass, etc.). The worst was an alarming loss of muscle mass. I was aware of the many undesirable side effects of the steroids, but somehow I didn’t associate my progressive loss of strength with the medicine. I got to the point where I could barely climb the stairs to our second floor apartment and I was down to about 120 lb (for 6 ft height), despite the fact that I continued to exercise with weights for nearly an hour every day. Then one day I typed “muscle loss” and “steroids” into Google and the whole story of steroid myopathy popped right into my face. That was my wake-up call.
All this time I had been experimenting with diet by cutting out various types of food that appeared to have deleterious effects. I did go off gluten right at the beginning, but for the rest I was more or less responding to local developments, all of which were inconclusive because I never knew for sure whether or not the D was the direct result of something I had eaten. At this point, about one year ago, I made the decision to kick steroids. To do so, I settled on a strict diet of 4 items that I knew were not harmful to me: rice, potatoes, boiled beef, and boiled white fish. When I cooked the meat and the fish I also added onions and carrots to the soup. On occasion I mixed some sunflower seeds into the rice. I drank water and tea. I cooked everything myself at home. On this diet (and really, nothing else passed my lips for eight months) I started reducing the steroids gradually, staying 5-7 days on each new dose and never cutting more than 5% at a time. When I reached 30 mg the deterioration in my condition stopped. When I went below 20 mg I actually started regaining some of my strength and the side effects began to abate. The gastroenterologist said not to go below 20 mg, but I did. He said not to go below 15, but I continued, as I noticed that in fact, as long as I was keeping to this diet, my D was the result of some built-in cycle (about 1-3 days a week), and that it was not worse at 12 mg than it had been at 28 mg. The gastroenterologist warned me not to go under 10 mg under any condition, but I continued with the program, and then he told me that the body normally needs and produces about 4.5 mg of cortisol a day, and that this mechanism has long been obliterated in my body so that I will have to stay on 5 mg for the rest of my life. At this point I saw an endocrinologist who helped me go off the last 5 mg by monitoring the levels of cortisol as I was reducing the Prednisone below 5 mg a day. It took eight months to kick the steroids, and I think that most of the side effects have slowly disappeared. I haven’t had a bone scan done yet (I’m sure the damage in that area is irreversible), but most everything else has pretty much returned to normal. In the meantime I have accumulated two years of seniority on the GF and SF diet (Enterolab returned positive intolerances for gluten and soy – the cross-continental shipping of the sample is a story in itself), which I think is beginning to have an effect. The frequency of D has diminished, and I started slowly expanding the diet. Of course, I don’t consider being anywhere near out of the woods, but I think I can reasonably put up with the current symptoms. My 14 year old son says “You mean you won’t be able to eat bread for the rest of your life!!?” I try to explain to him that at my age the term “the rest of my life” resonates differently than at his.
One noteworthy aside that may be useful to some people: because of aspirin intolerance, I was not able to use Pepto-Bismol, which I know many people have found useful. In the middle of the steroid reduction program it occurred to me that PB may be helpful if I could somehow get over the intolerance. Lo and behold, an allergologist referred me to the allergy department of a hospital that can build up tolerance to aspirin (and other salicylates). I took this 1-day program and it actually worked, but as luck would have it, PB worsened the D rather than cure it, so in the end it didn’t help. But others may be luckier in this respect.
Finally, I want to say again that it was the accumulated wisdom and knowledge of this forum that helped me out in the most difficult moments. I wish I could contribute more to it because I feel I owe a great debt to this community, but I really didn’t think I had something original to say that hasn’t already been said. Nor did I have the time to research the medical issues to the depth that some of the contributors continue to do. (I had planned on being retired by now, but I have a high-maintenance 14 year old musician to provide for [ you may check him out at www.youtube.com/arielpiano ] , so it looks like retirement will have to wait for some time...)

draperygoddess · Post by **draperygoddess** » Thu Jan 05, 2012 12:21 pm

Gabriel,

first, thanks for sharing your story! You certainly have had a long road to get well, but it sounds like you're well on your way! Good for you for not just accepting what the doctors told you! Hope your progress continues!

Second, thanks for sharing the link for Ariel's youtube page! I was a music major in college, and not many of the piano majors would have undertaken that Lizst fantasy and fugue. He truly has a wonderful gift.

Gabriel · Post by **Gabriel** » Thu Jan 05, 2012 1:07 pm

Thanks for your kind comment, Cynthia. Yes, Ariel is something else, but also a handful. And unfortunately I haven't been able to accompany him on his trips because I cannot travel with MC.
G.

Noodler · Post by **Noodler** » Thu Jan 05, 2012 1:09 pm

Gabriel

How did you build up tolerance or desensitise yourself to salicylates? You said you took a 1 day program? If I could eat salicylates that would be a god send to me.

Thanks

Al

Post by **tex** » Thu Jan 05, 2012 1:31 pm

Hi Gabriel,

Thank you for your inspiring and very informative update. It's great to see that you have overcome the odds to get to where you are now. I have a hunch that if you continue to treat your symptoms with a good diet, you will eventually be able to travel with your son. Corticosteroids actually slow down the healing process, so it may take longer for your intestines to return to normal, but they will eventually heal, now that you are using a much more "gut-friendly" treatment.

You must have some good genes, to father such a talented son. Congratulations to both of you, and please keep us updated from time to time, on your progress.

I hope your progress continues, and again, thank you for such an inspiring post,
Tex

Gabriel · Post by **Gabriel** » Thu Jan 05, 2012 1:45 pm

Hi Al,
The desensitization program was conducted by the Allergy Department of a hospital in Tel-Aviv. They began by administering a very small amount of salicylate (in my case they used PB because that was my target medication), and watched the sings of allergy, measured lung capacity, etc. As the signs were not life-threatening, 45 minutes later they increased the amount slightly, and continued the monitoring. In the space of 6-8 hours I ended up ingesting a significant amount of PB, and found that the symptoms did not worsen, on the contrary. They didn't quite go away (in my case the symptoms are sore throat and swelling in the throat), but they definitely became tolerable. If necessary, the process can be repeated a few days later. In any case, it became clear that I was able to handle the PB from the point of view of the allergy, but unfortunately it also caused D, which of course defeated the purpose of the whole exercise. Aspirin desensitization, however, is definitely being performed successfully.
G.

Gabriel · Post by **Gabriel** » Thu Jan 05, 2012 1:50 pm

Dear Wayne,
Thank you for your comment. Your posts and answers to my questions and to those of others are among the most useful tools in the daily management of this disease, and have been all along. I'm sure a lot of us here agree with this assessment. I am forever grateful to you.
G.

Lesley · Post by **Lesley** » Thu Jan 05, 2012 4:44 pm

I'm sure a lot of us here agree with this assessment. I am forever grateful to you.

100% from me!

Your child is amazing! I heard Arthur Rubenstein play that in Tel Aviv many, many years ago, when he was younger and able to put all of his considerable passion into it.
Ariel is so young and so talented. What a performance! Thanks for introducing me to him.

I SO want to come to Israel. I need to see my grandchildren! I must be able to travel by March/April because I am expecting another one.
If you are dealing with MC in Israel would you mind if I picked your brain? I need to figure out, given that I can't eat poultry, what I will be able to manage when I am there. Forgive me in I am assuming too much.

nancyl · Post by **nancyl** » Thu Jan 05, 2012 6:02 pm

Gabriel,
What a story. You certainly turned things around and looks like you're on the road to healing.

Your son has amazing talent and is also a very handsome young man. I think he will be supporting you before long.

Nancy

garina · Post by **garina** » Thu Jan 05, 2012 7:56 pm

Gabriel,

I am absolutely mesmerized by your extremely talented son. He plays beautifully. I listened to several of his pieces ... playing classical piano is truly a blessed gift for anyone to have, especially a young boy. My favorite type music.

My best to you and your son. I hope you will be able to travel with him, and I hope you continue to heal.

garina

Polly · Post by **Polly** » Thu Jan 05, 2012 8:14 pm

Gabriel,

How wonderful to read your inspiring update! Please be sure to put it in the "Success Stories" forum. One of the most difficult issues is steroid withdrawal, and others will benefit from your detailed description of how you accomplished it - in 8 mos. no less! You have proven, once again, that we must take charge of own treatment, often without full support from our doctors. You should feel proud - this was not an easy feat.

Interesting about the PB. I am not sensitive to salicylates but I cannot tolerate that stuff at all. It makes me violently ill with nausea, vomiting, and D.

And what a handsome and talented son you have! I enjoyed all of his performances and will continue to visit the website. At one time (many years ago) I considered becoming a concert pianist.........but I lacked the determination to practice the required number of hours per day. LOL! Ariel truly is incredible!

To your continued health...............

Polly

Joefnh · Post by **Joefnh** » Thu Jan 05, 2012 8:51 pm

Hello Gabriel that is an incredible success story. You certainly have been through quite a bit in dealing with MC. I'm glad you have been able to find this great site and have been able find relief through managing your diet.

Your son Ariel is incredible, I cannot believe how talented he is. I have watched that video a few times and am just amazed.

The last time I was in Israel was in late 1999 for business and was very impressed with the great people there. At the time the artist Dale Chihuly had put up his glass art exhibit in Jerusalem at the Tower of David museum. It was incredible.

http://www.towerofdavid.org.il/English/ ... _-_Chihuly

I do hope to be able to visit that area again soon, it was spetacular.

Congratulations again to you and your son.

Take care

Joe

Gloria · Post by **Gloria** » Thu Jan 05, 2012 9:36 pm

Gabriel,

What a powerful story - thank you for sharing it with us. I'm so impressed with your determination to get off of prednisone in spite of your GI's recommendation.

Like Polly, I also cannot tolerate Pepto Bismol, but haven't related it to an intolerance to salicylates. I'm intrigued by the desensitization program. There is a doctor (chiropractor) near me who has a Phd in nutrition. He reportedly has been able to get children with peanut allergies to be able to tolerate them again. I'm not sure how he does it.

Your son has incredible talent. I hope you'll eventually be able to accompany him on his trips. A parent should be able to beam with pride when their child performs.

Gloria

Gabriel · Post by **Gabriel** » Fri Jan 06, 2012 12:43 am

Thank you all for your powerful support. I hope I didn't gloat. I don't think I'm anywhere near a cure or anything of the sort. I have simply learned to live with yet one more limitation that age imposes on us. And I'm always amazed at how many musicians are out there. Music plays such an important part in our lives. I mentioned Ariel mainly because he provides one of the main incentives for my insistence to stay in reasonable shape.

Lesley, I'll be happy to assist in any way to help you make the trip to Israel. Please write to me directly by clicking on the e-mail button at the bottom of this post, or send me a PM to get my phone number, if you prefer to call me.

Joe, I saw the Chihuly exhibit at the Tower of David Museum. Since then he's done several other amazing projects here, including the stage setting for a Bartok opera in Tel-Aviv. He's an amazing guy, and he seems to see more through one eye than most of us see with two.
G.

Post by **tex** » Fri Jan 06, 2012 8:44 am

Gabriel,

I hope you don't mind, but I edited your post to remove your e-mail address and your phone number. As more and more people visit this board, our Google rank continues to climb, and more people in the business of "harvesting" contact information to sell to spammers, are likely to add your e-mail address and phone number to their lists.

Every day, all day long, they send out computer "bots" to sift through all the data looking for information that they can use, and there are usually at least 20 or 30 of them searching this board at all times. Sometimes they number in the hundreds. There's no way to stop them from searching, but we can stop them from collecting contact information, because only members, who are logged in, can access the contact information in the "buttons" on this board.

If you were aware of all that, and you really don't mind having your contact information visible to anyone, anywhere in the world, I apologize, and I'll be happy to undo my editing of your post, if you prefer. Just let me know.

Tex