I got an A+ from my GI!!!!!!!!!!!!!!!!!

jodibelle352 · Post by **jodibelle352** » Fri May 22, 2009 8:03 am

My GI gave me an A+ after my exam on Wed. LOL

OMG! She was actually smiling at me!

When she came into the exam room she was grinning from ear to ear, she sat down opened up my file and she said NOTHING except kept smiling.

Whatever she was on I thought "I want some of that too!"

Dr.Larkin then said;"I want to be honest with you. (That's a good place to start IMO, honesty is a good thing!)

When I picked up your chart and realized that you were my next patient I
was hesitant about seeing you. Then I opened up your file and noticed that you had gained 9lbs in 3 months and new I could breathe a sigh of relief."

She asked how I felt I was doing and actually asked if I was still in touch with the support group online. I told her about being on the GF Diet and she was very supportive. She told me to tell Tex that she has found his post very knowledgeable and felt your research on CC, MC, LC etc. very interesting and she was made aware of certain issues that she was not aware of that she was doing and by reading your post felt that it was the best "support site" she's been made aware of. :goteam:

She also loved Dee's recipe's and has even tried a few herself.

All my lab work came back great! Everything was right where they needed to be with no signs of any problems with my liver.

Now comes the next step she's suggested and I want to know if anyone else has tried using this approach on lowering their dosage of Entocort. She would like me to still try to get down to 3mgs. daily by trying this method. Take 1 capsule daily along with Imodium or Anti-D over the counter medication. Her concerns for long term use of Entocort is that sometimes the body builds up an immunity towards the medication making it ineffective if taken too long. If lowering the dosage combined with the Imodium or Anti-D med doesn't work then by all means go back up to the dosage of 6mgs. daily. She was not against staying on a maintenance dosage of the Entocort but truly wanted me to try the best I could to get down to 3mgs. daily.

As most of you know I have tried going down to 3mgs. daily but within 24-36 hours the pain, nausea and the D comes back full force. It scares me to death when I do have a flare with the D. The thought of having it come back daily and several times a day truly scares me. I did not however, even think about lowering the dosage and taking the Imodium or Anti-D med to help counteract a negative reaction to the lower dosage.

If anyone has been on the Enotocort and has any suggestions on lowering the dosage by using over the counter D med's to help would you please share them with me. I told Dr. Larkin I would consider what she's suggested but thought I would wait until the 1st of June before I tried again to lower my dosage.

Thank You for all your love and support and have a Safe Memorial Weekend keeping those who have served our country in our hearts and let them know you care! :bouqueofpinkroses:

Love and God Bless!
Jodi

Post by **tex** » Fri May 22, 2009 1:02 pm

Hi Jodi,

Wow! Great post! Congratulations on your progress!

It isn't often that someone with MC gets such a glowing report from their GI doctor. That was also very kind of her to make such complementary remarks about this site. That means a lot, coming from a doctor, and it's especially gratifying, (and humbling), to hear it from a GI specialist. Please thank her for us/me, the next time you see her. Those kind words made my day, to say the least.

If course, I totally agree with her, that it's best to keep the use of meds to a minimum, whenever possible, especially the corticosteroids. Since you've been gaining weight for several months, now, that's a very good indication that your malabsorption issues have improved significantly, which suggests that the damage to your intestines has been healing, so each day should be bringing you closer to the day when you will need less help from the Entocort, to maintain remission, and eventually, you may be able to get by with none at all. Reducing the dose can also help you to be able to fine tune your diet, because it is much easier to "read" your body's signals, when there is less budesonide available to "hide" the mistakes. As she says, you can always increase the dose, if needed. Sooner or later, you will be able to reduce the dose, but the only way to find out if you can, is to try.

I can't help you with any advice on how beneficial the OTC anti-diarrhea meds might be in a situation such as that, since I've never tried the combination, but hopefully there may be some members who have experience with that.

Thanks for such an upbeat post.

Love,
Tex

barbaranoela · Post by **barbaranoela** » Fri May 22, 2009 2:37 pm

BRAVO JODI~~~~~~~

and U are a shinning

Keep up the good work!!!!

luve Barabara

starfire · Post by **starfire** » Fri May 22, 2009 3:56 pm

Looks like you sure have a winner in your Doctor, Jodi!!!
I'm happy for you.

Love, Shirley

jodibelle352 · Post by **jodibelle352** » Fri May 22, 2009 8:47 pm

I do feel very lucky. At least I now know that when I gave her the site information she didn't chose to toss it in the basket on the way out. She actually decided to check our site out and kept an open mind. We didn't go into any huge discussions about Enterolabs and what her thoughts were but she did say that what ever post she did read that she found the site to be very helpful for those of us with CC, LC, MC etc...........and that some of the post gave her something to seriously think about and to take into consideration when treating her own patients. So I'm truly hoping that this will enlightening her to at least be open and honest with other patients who suffer from our diseases. It's at least a start and at least she didn't just blow me off like so many other horror stories I've read about and how some GI's just don't want to consider or compromise by hearing our fears, needs and what has been found to help us.

Dr. Larkin gave us a thumbs up and I believe in my heart that she wasn't feeding me a line of b.s. When she came in to see me on Wed. and was hesitant about seeing me because she wasn't certain what I was going to look like or feel like................. Well anyway, her reaction was not one of dispare she truly cared about my wellbeing and for that I'm very grateful.

Still don't know yet if I want to lower my dosage of Entocort but I'm not going to dwell on it right now. Hopefully some of my fears that sometimes causes me to panic when it pertains to the pain, cramping and D which truly does each and everyone of us no good to add stress which we don't want when things are going pretty well.

Love and God Bless:
Jodi

kate_ce1995 · Post by **kate_ce1995** » Sat May 23, 2009 6:49 am

Yeah!

What Tex said about the fact your gut is healing. We haven't heard from Joanna in a while, but she did a course of entocort while starting the gf diet in order to get her gut to heal from the diet first. So eventually, you will probably heal enough to wean off. How long it will take? Unfortunately we are all different, so you will have to figure that out for yourself.

Maybe you could discuss with your doc about alternating days of 3mg and 6mg if it takes 24-36 hours for your pain to come back as a first step. I don't know if this even makes sense with entocort, but with some medications I've taken, this is a process of weaning off. Your body starts getting use to the lower dose slowly, so its an even smaller step to get all the way down to the dose your doc recommends or off it completely.

Keep up the good work, and maybe next time you see your GI you can ask her to spread the word to all her GI friends so maybe some of the others of us can meet GIs that are as openminded!

Katy

Gloria · Post by **Gloria** » Sat May 23, 2009 7:27 pm

Good Job, Jodi!

I've been wondering if you gained any more weight. Nine pounds is terrific! I'm also impressed with your doctor and how you've educated her. She sounds like a keeper.

I would take my time weaning off Entocort, especially if you're still having flares occasionally. I'm sure you've read my journal, Weaning off Entocort, and know that it hasn't been a slam dunk for me. I agree with Katy that you should take baby steps and cut down every other day first to see how it goes.

Good luck and keep us posted.

Gloria

jodibelle352 · Post by **jodibelle352** » Sun May 24, 2009 9:18 am

Thank You Gloria:

I have to admit that I remember reading it awhile back but actually forgot about going back and re-reading your journal. Thank You so much for reminding me as I've been focusing a little too much on trying to wean off it that I had completely forgotten. Right now I'm not comfortable even trying to lower my dosage because I've tried 3 times unsuccessfully. Yes, I still have flares now and again. It's not everyday and sometimes I can go for a couple weeks but when I do flare it knocks me on my butt for at least 2 or 3 days when I'm so exhausted as well as completely fatigued.

Love and God Bless:
Jodi

grannyh · Post by **grannyh** » Sun May 24, 2009 8:44 pm

It took me three years to get down to one pill a day. My doctor says I only absorb about 10% of what I take.. and 10% of 3 mg isn't much. He said that it is the most effective treatment for CC. Since I am old I am not worried about long term effects:)
grannyh

MaggieRedwings · Post by **MaggieRedwings** » Wed May 27, 2009 5:44 am

Congratulations Jodi!

So nice to hear you have a great GI doc and that she recognizes the worth of our home here and was so complimentary. Also, congrats on the weight gain.

Love, Maggie

angy · Post by **angy** » Wed May 27, 2009 4:37 pm

Jodi

Thats great news on the weight gain , i hope you reach your target..Im pleased for ya that you have found a good doc...Hope its all good from now on..