An update

Pat · Post by **Pat** » Thu Aug 25, 2011 6:35 pm

It's been quite awhile so I would like to say welcome to all the newbies. Sorry you are here but it is the best place for info on the internet. If you can, try diet first but if all fails medicine is there - don't give up no matter what. Diet and medicine is helping me.

A little background - I have had MC for 12 years, the first 7 I was told it was IBS even after biopsies (he kept the MC a secret?) then I spent the next 41/2 years trying diet and a variety of meds. None seemed work. I even had one GI suggest tincture of opium but I declined as well as Mayo Clinic's suggestion of removing my colon. Last spring I did the MRT testing and really thought I was finally on the road to healing but instead I got worse, back to water D. Even Mary Beth suggested that I see a new doctor; I was even considering the opium.

In May I began seeing a new GI, my 5th. He didn't think I fit the mold for anything and basically said he needed to start over soooooo reluctantly we started over with all the blood tests, stool tests, etc. He tried Rifaximin, but that did nothing. Then he tried Pentasa. He said it could take a long time. I had tried Asacol and Lialda (they are similar) with no luck so I wasn't expecting anything to happen but lo and behold I got better and better. He insisted on another colonoscopy ( previous ones were 2000 and 2006) so I had that the end of July ( I think the prep gets worse each time!). He found that I have LC mainly in the upper part of my colon and extends into my small intestine. He said that is why the Asacol and Lialda did not work (they concentrate on the lower end of the colon) and the Pentasa does because Pentasa works from duodenum to rectum. It is an oral capsule that topically covers and protects the entire intestines. It is not systemic. Then he put me on Entocort for 6 weeks in addition to the Pentasa ( 500mg 3Xday). Here is the really big news....... He thinks that after one year on Pentasa I should be cured! Meaning that I will be normal and not have to take medicine any more. I am very leary of that news and will be happy if I can just stay on Pentasa the rest of my life, but it is a nice dream. I have gained weight, I needed to. I feel much better. I still watch my diet and pretty much stick to the MRT testing. I can tell if I vary too much. I eat more things and am able to eat out and be sociable. I feel like I have a life again! It has helped me physically and mentally. Hope my experience helps someone else.

Pat

Polly · Post by **Polly** » Thu Aug 25, 2011 7:12 pm

Hi Pat,

I have been wondering how you are doing, so it's great to hear from you, especially such a positive post. You deserve a break, that's for sure, because you have really paid your dues with this disease.

Best wishes for continued success!

Love,

Polly

sarkin · Post by **sarkin** » Thu Aug 25, 2011 7:47 pm

WOW, Pat, this is great news! You've been on my mind, and I'm so glad to hear you're making such encouraging progress. How wonderful that you're gaining weight (you must be getting some nutrition!)

You're so right, the physical and mental together are so important, and not entirely separable.

I'm interested to know the specifics about how Pentasa works, too - that's news to me. I think even those of us who are fortunate to be making some progress with diet alone still need to keep other options in mind. Sorry it took you until doctor #5 to get there, but what an encouraging update. Thanks for sharing it - I'm so happy for you!

And I hope you'll keep us posted,

Sara

mbeezie · Post by **mbeezie** » Thu Aug 25, 2011 8:51 pm

Awesome Pat! I'm glad the new meds are working, along with MRT. Being able to gain weight and go out and be sociable is HUGE!! Time to do the Happy Dance!!

Mary Beth

Post by **tex** » Thu Aug 25, 2011 9:51 pm

Hi Pat,

It's good to see an update from you, especially such a positive one.

I hope your success continues.

Tex

Gloria · Post by **Gloria** » Thu Aug 25, 2011 10:16 pm

Terrific news, Pat! It's hard to believe that you've finally found some relief from your symptoms. I'm so happy for you.

Gloria

starfire · Post by **starfire** » Fri Aug 26, 2011 5:24 am

So glad you are so much better.

Love, Shirley

Kari · Post by **Kari** » Sat Aug 27, 2011 5:38 pm

Hi Pat,

How absolutely wonderful that you have found something that works for you and are feeling better. I have been thinking about you and hoping for positive news - thank you for the great update!!!

Love,
Kari

Pat · Post by **Pat** » Sun Aug 28, 2011 8:55 am

http://www.gihealth.com/html/education/ ... ntasa.html

This a good article about Pentasa.

Thanks to all of you for your kind words and support!

Pat

Martha · Post by **Martha** » Sun Aug 28, 2011 1:04 pm

Dear Pat,

I'm so happy for you that these medications are working!

Love,
Martha

natythingycolbery · Post by **natythingycolbery** » Sun Sep 04, 2011 5:01 pm

Hi Pat,

Pentasa was the first drug that I was put on when i was diagnosed last year and it worked pretty quickly for me too... I was only on it for about 8 weeks before I went into remission with my MC too!

However it is believed my MC was caught exceptionally early (8 weeks after the initial symptoms presented) so my GI thought this would happen. yet he told me in severe cases it works too, so here is to hoping this works for you too and that you are able to withdraw the treatment.