Boy, do I have a lot to learn.....

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Skunk Ape
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Joined: Tue Jun 07, 2011 8:30 pm

Boy, do I have a lot to learn.....

Post by Skunk Ape »

Hi, this is my first post and well I am kind of lost.

While I was diagnosed with MC a year ago, I feel I’ve had it closer to 15 years. Around 1993 I started having issues with diarrhea that never completely went away. After about two months treating it with Kaopectate, I went to the doctor but he found nothing. Was told by him to stop using the Kaopectate and use Imodium AD instead. Since then I basically lived off of (what started off as) 1 or 2 imodium tablets a day (in 1993) to finally 20 tablets a day in 2010. When I finally decided to go back to the doctor in 2010, the biopsies from the colonoscopy confirmed I have Lymphocytic Colitis.

My GI doctor never explained to me anything about special diets and only told me to cut back on my dairy. He originally prescribed Apriso 3/day. When that wasn’t helping, added 3/day Entocort EC along with the Apriso. That worked very well until my employer changed our medical insurance. With the new prescription plan, my co-pay for Entocort jumped to over $800 for a 90 day supply.

Yesterday I started a different med. My GI doc wants me to try Asacol HD (4/day). Hopefully this helps.

I look forward to getting to know you all however I wish it was on different terms.
Age: 51
What doesn't kill you, just makes you stronger.
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MBombardier
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Post by MBombardier »

:wave: Welcome!! You have come to the right place. The wealth of knowledge and wisdom here will help you figure out what is the best thing to do to give yourself the best health possible. And the care and compassion are unrivaled. Looking forward to getting to know you! :smile:
Marliss Bombardier

Dum spiro, spero -- While I breathe, I hope

Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
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Gloria
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Post by Gloria »

WELCOME SKUNKAPE!! :wave:

It certainly does sound like you've been dealing with MC for a long time. Pretty discouraging that low doses of Imodium worked initially, but you ultimately needed 20 tablets a day. Also that Entocort costs have increased to $800 for a 3-month prescription. Others here have ordered Entocort overseas from http://www.alldaychemist.com/ at a much-reduced cost.

Keep reading on this site - there is a wealth of information and experience here. We share your disease and are interested in helping you. Please don't hesitate to ask us questions.

Glorai
You never know what you can do until you have to do it.
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Skunk Ape
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Post by Skunk Ape »

I could definitely afford the entocort from that website. But will only use the entocort if nothing else works. I gained close to 30 lbs on entocort.
Age: 51
What doesn't kill you, just makes you stronger.
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dgshelton
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Post by dgshelton »

Welcome! You have come to the right place for information. Everyone here is so helpful. I was just recently diagnosed and still have lots of questions. Someone always has an answer or can tell you where to look to find it.
Denise

"Be the change you want to see in this world."

Mahatma Gandhi
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MaggieRedwings
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Post by MaggieRedwings »

Welcome and love your moniker! Defitinely different and wonder how it came about.

There is a wealth of knowledge her so please search through the site. Entocort is a great drug but one I cannot use due to side effects. I never gained an ounce on it but with this disease we all act differently.

Looking forward to your posts.

Maggie
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sarkin
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Post by sarkin »

Welcome, Skunk Ape!

I started feeling better just from joining this forum, and encountering the shared experience of MCers... and I really started feeling better when I restricted my diet (very severely at first). I also used Pepto Bismol (starting with 8/day and pretty fast dropped down to 5, then 3). Not everyone tolerates the Pepto, but for me it was a big help in turning the corner.

I used Asacol many years ago, and it didn't seem to do much for me (except that I 'suddenly' became lactose intolerant - the pills use lactose as a binding ingredient, but truthfully, my relationship with dairy was probably already on the rocks back then). Some here have had trouble tolerating that, too.

You will find your combination of medication and diet. Many here are able to bring their MC under control with diet alone, and many use a combination of diet and medication.

I agree with you - this is as fine a group of people as exists anywhere, on the 'Net or in real life. Would that we'd met under a happier banner... but thankfully, we are here together.

I hope you're feeling better already,

Sara
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Skunk Ape
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Post by Skunk Ape »

MaggieRedwings wrote:Welcome and love your moniker! Defitinely different and wonder how it came about.

There is a wealth of knowledge her so please search through the site. Entocort is a great drug but one I cannot use due to side effects. I never gained an ounce on it but with this disease we all act differently.

Looking forward to your posts.

Maggie
How did I come up with Skunk Ape? Pretty simple really. I was watching animal planet with my daughter this past weekend and they had a special about catching Bigfoot. Depending on what area of the country you're from, it's, Big Foot, Sasquatch, Yeti, Alma, Yeren, Yowie, Abominable Snowman or in the southeast Skunk Ape. I chose the moniker as so many times when creating user names they are all taken but I can almost guarantee Skunk Ape isn't.
Age: 51
What doesn't kill you, just makes you stronger.
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Gabes-Apg
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Post by Gabes-Apg »

gday and welcome to the group

i can assure you that getting MC and finding this site, we all did a HUGE course in
Digestion 101,
MC and the rest of your body 101,
what meds work and what meds dont 101, and
why could a small amount of gluten cause that much D 101

we all have a PHD in MC Management......

my motto i tell all newbies is that life with MC, there is no right way or wrong way, there is your way. it is a bit of an adventure to figure out 'your way' what works, what doesnt, but the time, energy, reading, tests and learnings to figure it all out is worth the PHD in MC Management

the forum is a result of patient, wonderful people that truely care for others that have this crappy condition (pun intended) and want people to be well.

feel free to ask questions, and know that you are not alone......
take care
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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sarkin
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Post by sarkin »

Gabes,

That is so funny, and you are so right.

I believe now that you have laid out our curriculum, you should be promoted to full professor (since the PP ambassador slot is already taken).

:smile:
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