It's been awhile and Thank You!

Updates from members who have been successful in controlling their symptoms.

Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh

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JoAnn
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It's been awhile and Thank You!

Post by JoAnn »

Hello everyone, my Thanksgiving would not be complete if I didn't stop and check in and say thank you to my PP family again for all you've done and continue to do for me. Tex, I love the new tagline, You can get your life back! I'm a living example of that and hope I can reach out and give that hope to some of the new members who are struggling now. Just know, it wasn't easy to work through all this, but it is worth it as Gabes says. You initially go through all the resistance and grief of giving up familiar, easy food, but eventually your new diet becomes an important part of the new, healthier you. For those of you who don't know me, I suffered with terrible symptoms for a year (I know now that compared to others that is nothing) before I was diagnosed with CC. I spent another few months taking Asacol, which my doctor acted like was going to cure me but actually made me even sicker. I finally found this board and began my REAL treatment and journey to remission. I immediately went off gluten and was tested through Enterolabs where to my complete shock I found I was sensitive not only to gluten, but to dairy, soy, eggs, and yeast. I further adjusted my diet and went on Entocort. I too reacted to everything in the beginning and found it hard to know what I was really sensitive to, but over time with the diet and entocort and lots of healing, I began to see my way with wonderful support and handholding from this board. I don't think I was an "easy" case (if there is such a thing). I had many ups and downs and set backs which was very discouraging and depressing and wondered if I'd ever have a life again. But PATIENCE is the great key and sticking to the diet and trudging on will bring most people remission. We have some wonderful people who have done all this and still struggle and I continually pray for them to find what they need. I have had a supportive PCP who is always interested in the information I glean from this board and has supported me in my choices.
I mainly rely on my crockpot and vitamix to help have meals on hand. I use a lot of coconut oil for cooking and as a spread instead of butter. I've been able to add eggs back into my diet, but I eat them sparingly. I found early on that even though I tested sensitive to them, they never bothered me in baked goods. I use a bread machine when I have bread, but usually use corn tortillas for a bread replacement. I have found several restaurants I can eat in without problems.

When I was first diagnosed I was so sick I had to take medical leave from my teaching job to try to sort myself out. I truly believe I would be on disability now if I had not found the PP. I am a full time teacher with a very demanding job, I have adult children (adult??? they seem to need Mom and Dad more than ever)
grandchildren, and am involved in my church and community. I did get my life back, but I also have learned to put some boundaries around myself and say no.
I know I need to eat right for me and get proper rest. If I don't, things start to unravel.

I just wanted to check in and give you my love. This board is an amazing, rare gift in a difficult world. The generosity, love, respect, and kindness shown here is
incredible. Thank you Tex and the other "pioneers" who were here when I desperately needed help and thanks to you who have come since then and have contributed your experiences and advice. This board has made me a better person in so many ways, Love JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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sarkin
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Post by sarkin »

JoAnn,

Thank you for a truly inspiring update.

All my best for a joyful (and delicious) Thanksgiving to all the generations of your family,

Sara
Kari
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Post by Kari »

Hi JoAnn,

It's wonderful to read an update from you - thank you so much for making the effort to share your MC journey with us. I'm sure Tex will move your post to the "Success Stories" section, which is where it truly belongs!!!

It's great to hear that you're still doing well.

:happyturkeyday: to you and your family.

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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nancyl
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Post by nancyl »

JoAnn,
I also thank you for sharing your story. This is so inspiring for those beginning this journey. I am curious JoAnn, are you still on Entocort?

Happy Thanksgiving!

Nancy
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Post by garina »

JoAnn,

Oh, that is the "magical" word ... PATIENCE. The key.

Your post is inspirational. Thank you for that.

I hope we all will get our life back.

All the best,

garina
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JoAnn
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Post by JoAnn »

Thank you so much Sara, Kari, Nancy, and Garina. You all give so much to this board even in the midst of your struggles. To answer your question Nancy, no I no longer take entocort. While I was working through things, I took my first round for about 7 months and my doctor added D-mannose to my treatment which had an amazing effect on me and I got off the entocort. I later flared again due to some bad turkey (it was during Christmas) combined with a virus I picked up. My system was overwhelmed and I went into a bad flare. I went back to my dr. in January, and she put me on a week's worth of prednisone and then I shifted back to the entocort. I went off entocort 5 months later in June (tapering off beginning in April I think). I remember thinking then that I would not rush things or try to put myself on someone elses timetable during that second round of entocort. I stuck to the diet, listened to my body, and I've been able to manage with diet ever since. (That was about a year and a half ago.) I do keep entocort on hand as a safety net. I took it with me on vacation this past summer and took a couple when I was in some iffy situations, but I was OK. I think it helped me mentally as much as physically. I rarely have a problem now and if I do it's pretty minor and I can usually pinpoint what it was. I hope this helps. We all have similarities in this journey, but also many differences. I hope something in my journey might help someone else along the way. Love to you all,
JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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tex
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Post by tex »

JoAnn,

Your posts are always so helpful and uplifting, and so full of valuable insight, that I find myself prone to getting a little misty-eyed, when I read them. Thinking back, your struggle to regain your health was never easy, and I remember that difficult and heartbreaking setback that happened over the Christmas holidays, as being especially frustrating, but you always seemed to remain upbeat, and optimistic, and very helpful to others.

I've always been inspired by the quote from John Wayne in your tagline, and it's obvious that your approach to getting your life back, clearly had to be driven by that attitude, so I have to assume that you probably typically follow that philosophy in your everyday living. Your story is indeed inspiring, and chock full of helpful information.

Thank you so much for sharing your experiences and your insight with us, and for lifting our spirits with your kind and understanding words. And yes, your presence here has enriched my life, also, and the lives of many others, here, as well, and probably countless others, all over the world, who read this board, but have never joined. It's truly an honor to share this place in cyberspace with you.

Love,
Tex

P. S. And, of course, that porch light is always on.
: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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JoAnn
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Post by JoAnn »

Oh Tex, I love you! :bigbighug:

Those are some of the nicest words anyone has ever said to me. In regards to my tagline, let me just say that YOU are the John Wayne of this board! You are the greatest example of courage I know of and we all rely on your strength and wisdom to help us through. You also make it a lot of fun along the way.
Thank you so much for everything, Love JoAnn

P.S. Thanks for keeping the porch light on for me :grin:
Courage is being scared to death, but saddling up anyway. John Wayne
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draperygoddess
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Post by draperygoddess »

JoAnn,

thanks so much for sharing your story! Sounds like you're doing really well. That's proof that there's a way out of this maze! :wink: Is the coconut oil easier on your system than other types of oil? Love my coconut milk, but hadn't thought about the oil.

And yes, Tex IS the John Wayne of the forum! Yeehaw! :cowboy2:
Cynthia

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Lesley
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Post by Lesley »

JoAnn,
I thought I had posted to you, but I probably wrote and didn't submit. Brain frozen! I agree with Cynthia. It's really encouraging to read your story. Thank you!

Cynthia. My son loves coconut oil. I used it in baking the other day. It's pretty good.
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Gloria
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Post by Gloria »

Hi JoAnn,

Thank you for the inspiring post! I'm so happy that you're still doing well and can even eat eggs now. Yea!!

I hope you have a great Thanksgiving.

Gloria
You never know what you can do until you have to do it.
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coryhub
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Happy Thanksgiving

Post by coryhub »

Thanks for your uplifting story JoAnn & Happy Thanksgiving to all my LC family. I find myself being thankful for my health again. Since I came on board this site and cut out gluten, I can now be grateful not to have something worse than colitis. My mainstay lunch for work has been Sheppard's pie. Potatoes, mashed up, sometimes a combination of sweet potatoes and white potatoes, sometimes a combination of white potatoes mashed with carrots, and organic, bison meat from the farmer's market. It's hard to eat the same thing everyday but I'm sure I'll figure out more tried and true recipes as I keep on trudging this road to happy destiny. :pilgrim:
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Ginny
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Post by Ginny »

My dear friend, I am so happy for you and your success to beat this disease. Think of you often and keep you in my prayers. Wishing your family a very blessed Thanksgiving! Much love, G
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
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JoAnn
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Post by JoAnn »

Thank you everyone for your kind words. If I can ever help any of you, please PM me and let me know.

Dear Ginny, I am so hoping that your experiment will be successful and you can live your life again the way you want to. You have always been a voice of support and love to me even when you've suffered so much. You lifted me at times when you probably didn't even know. I know somehow you're going to find your way through even though its been so difficult. You and Gloria have fought so hard-you both deserve to be in remission and have some peace about this in your lives. I am continually praying for you both and everyone on this board who is battling their way through this. I will look forward to your updates. My positive thoughts and prayers are with you always, Love JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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Post by Gabes-Apg »

Firstly congratulations.
your post comes across that you and MC are co-habitating ok, you have got your routine sorted, you have Jo-Ann safe places you can eat.
and from a later post this summarises why you and MC are co-habitating ok
I stuck to the diet, listened to my body, and I've been able to manage with diet ever since.
Sounds simple and we both know it isnt, but it is worth every ounce of patience, tenancity, emotional energy.

:bigbighug:
Thank you for your support and your encouragement over the last two years,
living alone and distanced from birth family, i could not have done this without the beautiful, caring, intelligent, generous people of the PP family.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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