Doctor Rant

Camie · Post by **Camie** » Fri Oct 05, 2012 2:53 pm

As you may know I have failed weaning of Endocort the method the M.D prescribed. I got down 2 one day then one the next. Well the D came back this week I called the GI Doc on Wed Oct 3 and left my message. Should I go back to 9mg? Did he want to start on Prednisone? Can I take Pepto or immodium or Dicyclomine with the endocort?

Now it is Friday. No call as of noon. I call the GI again. Same message,but the receptionist says she is new and someone will call me back. Another receptionist called me @ 2pm....told her the same story.... Then she asks me why I want to add something to the Endocort. I said I would like to be able to leave the house.

Then I call my PCP of 30 years. For the fourth time I repeat my story. I was hoping for some direction. The nurse says he wants me to call the GI. I said they aren't call me back. She said call them again.

Leah · Post by **Leah** » Fri Oct 05, 2012 5:47 pm

How frustrating is that?!!! I thought you did already go back to 9 mg? NO? You may not need 9. Maybe 6 would do the trick. YOU didn't fail though. The doctor shouldn't have rushed you off of it. Three months usually is not long enough. It took me close to 7 months.

You don't need permission to try pepto or immodium. I know there are people on this board who take both because they want to keep the Entocort dose low.

I hope they get back to you soon but considering that it's Friday......

Camie · Post by **Camie** » Fri Oct 05, 2012 7:22 pm

Leah, that is the name of on of my daughters. :)

I did start back on 9mg of endocort on Wednesday on my own before I spoke with the DR. I was hesitant to add another med to the mix. My stomach is so screwed up these days................I was afraid to add another one.

Well the office nurse did call me back@ 4:45. I thought the exact same this its Friday......good luck on that one! I am starting on Imodium..........two a day and increasing to a max of 8 a day as needed.

I am annoyed that the MD couldn't take five minutes of his time to make the call himself. I have choice words for him that I will not put into writing..

So after after a dose of Imodium I took myself to Whole Foods and went in search of gluten free products. Pricey ....oh well.
One of the employees gave me a list of all of the gluten free products at Whole Foods. The have lots of gluten free products so I am less discouraged.

I bought a juicer..........to try and get more nutrients into my body.

Cooking large pots of bone broth.

I must say though in my dark moments this week I thought to myself, it just might be easier to have cancer.........they can cut out the diseased parts......radiate you .........give you chemo and you may be cured. I don't mean that but that statement is a product of being worn out.

thanks
Someone that understands
:)

gluten · Post by **gluten** » Fri Oct 05, 2012 7:48 pm

Hi. I have had the same experience with my PCP. I think he is afraid to talk to me. It is the Friday before a holiday weekend and he make have left early. There are many choices of gluten free foods in a supermarket. Purdue makes a variety of gluten free chicken called " short cuts " they are cooked and is great to make a sandwich or add to a salad. Always make sure it says gluten-free on the box. Some of the Hormel Deli meats in the box are g-f. A good way to make breading for chicken or fish is to buy Glutino crackers and crush them. I use them when baking fish and use olive oil and parsley. A good bread is made by Udi's, they also make hot dog, hambuger rolls, pizza crusts and bagels. They are more expensive, but if you keep your reciepts you can deduct the the added cost. If you have any questions just ask. John

CathyMe. · Post by **CathyMe.** » Sat Oct 06, 2012 4:31 am

Camie wrote:As you may know I have failed weaning of Endocort the method the M.D prescribed. I got down 2 one day then one the next. Well the D came back this week I called the GI Doc on Wed Oct 3 and left my message. Should I go back to 9mg? Did he want to start on Prednisone? Can I take Pepto or immodium or Dicyclomine with the endocort?

Now it is Friday. No call as of noon. I call the GI again. Same message,but the receptionist says she is new and someone will call me back. Another receptionist called me @ 2pm....told her the same story.... Then she asks me why I want to add something to the Endocort. I said I would like to be able to leave the house.

Then I call my PCP of 30 years. For the fourth time I repeat my story. I was hoping for some direction. The nurse says he wants me to call the GI. I said they aren't call me back. She said call them again.

Hi Camie,
I have read your posts but haven't had time to respond. Welcome, firstly. I too have found it so frustrating to deal with my GI so I know exactly what you're going through. I'm glad that you increased the dosage yourself...someitmes you just have to take control. I hope you have success with Immodium in addition to the increase in Entocort. Keep us posted on how you're doing.

cjbndtsn · Post by **cjbndtsn** » Sat Oct 06, 2012 7:39 am

are you talking about deducting the added cost from your taxes???? How can this be done........I'm curious of this since my food bill has risen drastically since going GF.

Deb · Post by **Deb** » Sat Oct 06, 2012 8:02 am

Cathy, there are (of course) some requirements in order to do this though, the primary one being your medical expenses (including your GF food) have to exceed 7.5% of your adjusted gross income. I'm not sure if you have to have a celiac diagnosis or if your doctor could verify you have a gluten intolerance and if that would satisfy. My guess is that we might still have issues with that.....after all, we just have MC and there probably isn't a gluten connection.

http://www.ehow.com/how_2089426_get-tax ... -food.html

patc73 · Post by **patc73** » Sat Oct 06, 2012 8:51 am

My understanding of the tax deduction is that only those with a verified celiac diagnosis can deduct food costs. Unfair, don't you think?

Pat

cjbndtsn · Post by **cjbndtsn** » Sat Oct 06, 2012 12:22 pm

Of course.....again the MC folks don't get the right treatment. Not sure I could meet the requirements to take advantage of the tax deduction anyway. 7.5% is a huge amount to have had to spend on medical I think.

thanks for the info though

Stanz · Post by **Stanz** » Sat Oct 06, 2012 2:19 pm

From my experience, working with a CPA, as long as you have a letter from a doctor, MD, ND, stating that they have recommended foods and supplements to treat a medical condition, they are tax deductible as a medical expense, provided, of course, that your expenses exceed the 7.5% of your AGI to even take a medical deduction. I deduct glutamine and all the vitamins needed to fight malabsorption. These expenses are also expenses that can be refunded to you with a medical reimbursement plan that many people have through their employers as a pre-tax deduction from their paychecks.

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