Update on my remission

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grannyh
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Update on my remission

Post by grannyh »

I have no idea what is going on but I am still off entocort... Norman is here every day.. still get monkey but once in awhile.. not sure of the cause.. have dr visit at the end of the month.
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Post by Kari »

YEAH!!!!! What wonderful news, and just in time for the holidays!!!! So glad you gave an update - been thinking about you.

Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Post by grannyh »

Will let you know what the GI doc says..we see him right before New Years.
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Post by JoAnn »

So glad to hear that Grannyh :grin: What a wonderful Christmas present for you. Please let us know how things are. You give us a lot of hope. JoAnn
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Post by Gloria »

You have no idea how encouraging your report is to me. It gives me a great deal of hope. Thank you for the good news.

Good luck with your Dr appointment. It will be interesting to read about his reaction.

Gloria
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Post by grannyh »

Too bad I really have no idea what has caused the remission..LOL Hmmm...or how long it will last...
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Post by Polly »

Great news, Granny!!!

How long have you been on Entocort? And how long off now? You don't think the remission was due to the Entocort? That would be my guess, although we know that spontaneous remissions can also occur. You may be the first here to prove that longterm Entocort (without diet, right?) can induce a remission.

Either way, let's hope it continues! :thumbsup:

Love,

Polly
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Post by grannyh »

I started entocort after hurricane Rita in 2005. Had been on one pill a day for a couple of years. Remission started the last week of October this year (i think.. I really should have kept better records..lol).

I was careful about what I ate for a couple of years.. after that, I just went back to cooking as I did before CC.

What is really strange is that stress seems to make CC worse. I went into remission when my husband was rushed to the hospital with the onset of high blood pressure.. he is 71 and had never had a problem with high blood pressure before. To say I was stressed is putting it mildly.. our only family is our two sons who live in another state and we decided not to tell them anything til we knew more. Hubby is fine now.. taking meds.. something he hates to do!

Wonder if it is possible to have a stress induced remission?:)

At first I thought it was the increase in my blood pressure meds that caused it but have been back to my old reduced dose for over a month.
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tex
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Post by tex »

GrannyH wrote:Wonder if it is possible to have a stress induced remission?:)
I wonder if the stress could have been significant enough to change your genes, or more likely, your epigenes?

Eight weeks seems to be the magic number for verifying remission after discontinuing Entocort. If you can remain in remission past the 8-week point, you are "officially" in an indefinite period of remission, (IMO).

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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remission

Post by klhale »

I believe I was the first to go into remission in 2006. I was on Entocort, one pill a day for about 4 years (since 2002). I still had to watch what I ate during that time. Then one day, like Granny I ate something I should not have, and I did not have D. I stopped the Entocort for 4 years.

I recently had my first flare in May, and it took me about 5 months to re-configure my diet. I have different food intolerances this time...and it took me a while to figure it out. The good news is the D has stopped, for 2 weeks now, so I am on track to go into remission again. Yeah! I am taking one Entocort pill in the morning before breakfast.

It is such a baffling disease and it can wreak havoc in one's life. I am convinced that if a person makes a food diary and seriously works on it every day, they can figure out what makes them sick, and go into remission just like me.

The key is, one has to quit eating the offending foods. People fight this, because it is so hard to change your habits, and because they love certain foods so much.

I cannot eat so many things I love, but I have found whole new things I can eat, and are good too. I know this is the way to go into remission. I have done it and I am doing it again.

PS. Granny- I don't know why you are going to the Doc, but I would not mess with your remission in any way. Just give it some time.....you have done this all by yourself.

Take care,

Karen
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Post by grannyh »

The only reason I am going to the doc... my husband needs to see him and it is a long drive. Will get a refill for the entocort in case I need it. Haven't seen the doc in two years and he requires a visit every two years to renew prescriptions. It will give me a chance to ask about how his other patients are doing and see if others are in spontaneous remissions.
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dr trip

Post by klhale »

Granny, good idea, make sure you have Entocort on hand, just in case. After 4 years I had to pull my Entocort out, and I was so glad I had some leftover from 2006. It still worked great.

Stay well,
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Post by hoosier1 »

Granny,

This is great news. Enjoy your health.

Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
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Post by grannyh »

Might have put a hex on my remission by talking about it.. then again maybe going to McDonalds for a McRib sandwich wasn't a great idea. It has been like the old days for 24 hours... the terrific stomach pains, mad dashes to the john.. just awful. Hubby had one too but no sauce on his..maybe it was the sauce.. Have had one before a couple of weeks ago with no problems..won't be doing that again!
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tex
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Post by tex »

McRib Sauce
Water, high fructose corn syrup, tomato paste, distilled vinegar, molasses, natural smoke flavor (plant source), food starch-modified, salt, sugar, spices, soybean oil, xanthan gum, onion powder, garlic powder, chili pepper, sodium benzoate (preservative), caramel color, beet powder.
http://nutrition.mcdonalds.com/nutritio ... emID=10031

Notice that next to water, the main ingredient is high fructose corn syrup. According to the nutrient analysis, the only nutrient that is in the sauce, but not in the meat or bun, is vitamin A. :headscratch:

I hope the setback doesn't last long.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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