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Jeanemcl
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Checking in.....

Post by Jeanemcl »

Hi Everyone,
I have been "on the road" since June and am finally back home! I spent time in the mts in Georgia with my daughter and her family. Then I flew to Boulder, Co. And spent time with my son. He drove me to Taos, NM and I rented a house with a friend there for 10 days and then we traveled to Santa Fe. A few days later I left there and travelled to Austin, Tx. To visit my son and his family. Most of the time my digestive system behaved and there were just a few minor bleeps. I "ate" in most of the time and we packed lunches when we were taking day trips around Taos. I tried to keep Lara bars and chips with me in case I needed them. The only real problem I had was flying out of lAlbuquerque into Dallas - we ended up in Oklahoma City (weather) then back to Dallas - all flights cancelled and I got stuck there for the night. My son came to the rescue and got me a hotel room, but I had eaten everything and it was 1 am.....my stomach was gurgling from exhaustion and probably stress, and I felt crummy for a couple of days but I bounced back. I do realize that getting tired is a big enemy for me now and I need to watch that. I also had a few pity parties for myself when I ate out and usually ordered a hamburger - no bun when others were having more exciting entrées. Nevertheless, the feelings disappear and I go on about my life thankful for how much better I am.
I have retired and everyone goes back to school next week....I have mixed feelings....one minute I think I will miss the excitement of a new year and the next minute I feel FREE....lots of changes in my life now and I am anxious to "reinvent" my day.
Had tons of messages I haven't read and skimmed through feeling empathy for the newbies and glad to hear positive things from the regulars.
Glad to be back... :pigtail:
Everything will be ok in the end, if it's not ok, it's not the end.
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nerdhume
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Post by nerdhume »

Welcome back, glad to hear you had such a pleasant trip with minimal digestive problems.
Good luck with your transition to retired life, maybe you will have time for new hobbies or volunteer work?
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
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UkuleleLady
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Post by UkuleleLady »

What a great trip! I love Taos and Santa Fe! Austin is terribly hot right now, hope you survived that ok.

Congratulations on retiring! You are living the dream!
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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Jeanemcl
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Post by Jeanemcl »

Yes, Austin was hot, but I still got to walk my grandchild in a stroller each morning! Tex - I submitted this twice by mistake - can you delete the second one - tried to but it didn't work! :oops:
Everything will be ok in the end, if it's not ok, it's not the end.
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Post by Leah »

Sounds like a great trip. Enjoy your retirement!
Leah
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tex
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Post by tex »

Jean wrote:Tex - I submitted this twice by mistake - can you delete the second one - tried to but it didn't work!
Sure, be happy to do that.

Welcome back! And thanks for the update, and the vacation tour.

While you're pondering the various directions that you might take with the rest of your life, now might be a good time to plan a basic outline for a book that you would enjoy writing, so that whenever you feel motivated, you can work on it.

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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Jeanemcl
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It is me again.....suggestion for treatment

Post by Jeanemcl »

Hi friends,
I have gone about my life as a retired person for the last few years seeing grandchildren, traveling some and working PRN at some nursing facilities in my area. Last cancer I was diagnosed with breast cancer. I had a lumpectomy and my lymph nodes were clear except I had a Her2 marker so I needed chemo for 12 weeks, 30 days of radiation and herceptin treatments until this coming Dec. I had a few ups and downs with my digestive system but was able to control it with diet, immodium, elevil and pesto tablets. I recently had a bad bout and they have given me IV's and some nausea meds to help with nutrition. The dr. Put me on Flagyl and I visited the GI. She ordered more testing to get info. In the meantime she suggested Metamucil and 8 pesto tablets. I know the nausea drugs also help with stool formation and interestingly enough I am better with this new regime.
She wants me to do another colonoscopy and go on Budesonide for 3 months which will cost 1500. I am hesitating because the last time it didn't as well as the first time.
Question: how long should I hold out trying other things... since I have had a four year break will it be anymore effective and is there anyway to get this drug any cheaper in The future. Wondering if anyone on Medicare who has dealt with this has a better prescription plan coverage. My cancer treatments have been covered so I really can't complain and if I thought it was a magic pill I would jump at it. Just trying to cover all my bases and be a smart consumer.
Also, has anyone gone on a plant based diet? I am gluten free and went off dairy again when I got this flare. Thanks for your help in advance.
Everything will be ok in the end, if it's not ok, it's not the end.
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tex
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Post by tex »

Hi Jean

Sorry you're having all those issues, but it's good to see you again.
you wrote:since I have had a four year break will it be anymore effective and is there anyway to get this drug any cheaper in The future. Wondering if anyone on Medicare who has dealt with this has a better prescription plan coverage.
Actually it becomes less effective each time it is stopped and then restarted. This is verified by published research. Eventually, after numerous cycles, it becomes ineffective for most people. This is true for a lot of meds.

Most people who are looking for a way around the outrageous prices charged in the U. S. for these drugs order from this overseas pharmacy. Budez CR3 is the generic equivalent of Entocort and it's equally effective, according to those who have used it. Prescriptions are invalid across international boundaries so you don't need a prescription to order from here. Don't order more than a 3-month supply at any one time though, because Customs may/will assume you are a drug dealer buying them for resale and they will confiscate the package.

AllDayChemist

Yes, 90 capsules, a month's supply, cost's only $49.66 plus shipping. We are being ripped off royally by the pharmaceutical industry in this country with the blessings of our government.

The trouble with a vegetarian or vegan diet is that if you are sensitive to soy, you can't get enough protein in your diet and protein is essential for healing. Also, you will slowly run out of B-12 if you don't take a supplement, because B-12 only comes from animal sources.

You're very welcome,

Tex
:cowboy:

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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Jeanemcl
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Thanks

Post by Jeanemcl »

Tex....you are always such a help. Will look into this and will keep eating meat. ☺️
Everything will be ok in the end, if it's not ok, it's not the end.
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Post by skp »

When I was taking budesonide, Medicare was still fairly expensive. I live in NC but my GI's office told me of a compounding pharmacy in TN, an hour + away. They made if up for me at a cost of $59 for a month. Moody's Pharmacy in Johnson City, TN. http://www.mooneyspharmacy.com/


With my gall bladder removed in my twenties (my mother had the same) I know that I have to limit the amount of protein with fat. I do best with protein once a day and then not very fatty. I fix a smoothie mid morning. My MC is at a stage where I can do a smoothie with spinach, kale, blue berries, cantaloupe or watermelon, banana, cooked beets, cucumber, cilantro, etc. I add coconut oil or olive oil. This plan has also helped with my GERD.

Enjoy retirement! I am planning to do the same at the end of the year.

Susan
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Post by Polly »

Hi Jean!

I am trying a mostlywhole foods/plant based diet. If you'd like to discuss further feel free to PM me.

Sorry to hear about your bout with cancer........a bummer for sure.

Polly
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