It's time to get rid of Entocort. The only good thing that it did was make my son learn how to swallow a horse-size pill. He throws those two pills back with breakfast every morning all by himself like a champion. Beyond that, I would say that the medication has truly done nothing.
Not all is bad though: for the first time in 10 months, we did have a good solid stretch of solid several weeks ago. However, I'm (tentatively) convinced it was more due to the introduction of EleCare 1-2 times daily than it was the Entocort. Soon after we ran out of the EleCare, the stools started looking like the same old runny bloody mess. In fact, we're headed to the GI doc today to see what we can do about getting either EleCare or Absorb Plus covered by insurance and going with the enteral nutrition route for a while. I'll update soon with what I find out.
As for the SCD, it's almost a masochistic way of life now with what we feed our son and it's difficult to imagine abandoning it. The rest of our family has become less rigid about adhering to the SCD and we've stopping hiding the fact that mommy and daddy will sometimes have a bagel or bowl of cereal. Our son is mostly okay with that but certain foods really do hit his hot button if he sees them (potato chips and bagels). He's had a weird fetish lately of wanting to smell our coffee too. He tells us that he won't taste it, but he just wants to smell it. His sense of smell has sharpened dramatically over the last 6 months...
I cannot begin to express how much of a roller coast ride SCD shopping is... going to certain stores for certain things every week: Whole Foods, Trader Joe's, QFC, Safeway, The Grocery Outlet (the one we go to is now self-dubbed the "ghetto" store), and the local fruit market. Shopping at Whole Foods makes me crazy. In many ways it's a great store because I've been able to find the hard-to-find stuff there: SCD-legal sausage, hot dogs, dry curd cottage cheese, and legal sliced turkey deli-meat. But seemingly at random, Whole Foods discontinues carrying certain products that were our son's *favorite* (like the legal deli turkey):
"Sorry son, you can't have turkey anymore because the grocery store no longer wants to sell daddy a half a pound for $7"!
Not all is bad though: for the first time in 10 months, we did have a good solid stretch of solid several weeks ago. However, I'm (tentatively) convinced it was more due to the introduction of EleCare 1-2 times daily than it was the Entocort. Soon after we ran out of the EleCare, the stools started looking like the same old runny bloody mess. In fact, we're headed to the GI doc today to see what we can do about getting either EleCare or Absorb Plus covered by insurance and going with the enteral nutrition route for a while. I'll update soon with what I find out.
As for the SCD, it's almost a masochistic way of life now with what we feed our son and it's difficult to imagine abandoning it. The rest of our family has become less rigid about adhering to the SCD and we've stopping hiding the fact that mommy and daddy will sometimes have a bagel or bowl of cereal. Our son is mostly okay with that but certain foods really do hit his hot button if he sees them (potato chips and bagels). He's had a weird fetish lately of wanting to smell our coffee too. He tells us that he won't taste it, but he just wants to smell it. His sense of smell has sharpened dramatically over the last 6 months...
I cannot begin to express how much of a roller coast ride SCD shopping is... going to certain stores for certain things every week: Whole Foods, Trader Joe's, QFC, Safeway, The Grocery Outlet (the one we go to is now self-dubbed the "ghetto" store), and the local fruit market. Shopping at Whole Foods makes me crazy. In many ways it's a great store because I've been able to find the hard-to-find stuff there: SCD-legal sausage, hot dogs, dry curd cottage cheese, and legal sliced turkey deli-meat. But seemingly at random, Whole Foods discontinues carrying certain products that were our son's *favorite* (like the legal deli turkey):
"Sorry son, you can't have turkey anymore because the grocery store no longer wants to sell daddy a half a pound for $7"!
I am still on entocort (for crohn's disease), and I can't wait for the day when I can be free of it. I'm praying that I can start weaning off it in a couple months, as I've been on the SCD for over three years with amazing results. Let's hope my doctor thinks so, too...
We were given the okay to quit Entocort yesterday. It really did not do anything for our son. We'll be starting on an enteral nutrition diet very soon... once we can figure out whether or not or insurance company will help us with the cost!
God bless you in your endeavors!
I totally understand! BTW what brand of turkey do you get at whole foods? I'm willing to do anything for some turkey that I don't have to make myself at this point I'm willing to pay whatever for an afternoon off the stove.
Good Luck and keep us posted! Your little hero is so strong!
Hey Candice,
It was from a company called Diestel. http://www.diestelturkey.com
As I noted, I haven't seen this particular package in about a month at the Roosevelt Whole Foods. It's ingredients list was something like: "organic turkey". Literally, nothing else was listed. With a little salt and mayo, our son would scarf the stuff down without any IBD problems.
Their honey-roasted turkey is SCD-close, but has carageenan listed as the last ingredient. We tried it, but our son couldn't get past the mental block that it was different than *his* turkey. It otherwise, tasted fine.
Thank you so MUCH! I see that there are quite a few San Diego stores that carrie it. I also have a dear friend that works in the meat department at Whole foods so I'm going to beg her to order it for me.
BTW -- I was at Whole Foods today and the SCD-close honey-roasted turkey is by Applegate Farms - not Diestel.
Good luck with getting the turkey-only Diestel. My son asked us today, "you know what we haven't had in a while? Turkey!" He's Jonesing for it!
Freetofeast -- thanks! Good luck with getting off of Entocort. Let us know what you move on to next.