my MC developments

harma · Post by **harma** » Tue Aug 03, 2010 8:35 am

I have been up and down lately with my MC. I have been experimenting with food (kiwi, peach, Brussels sprouts). This was still to early, soft BM's, cramping, gas. Also I have tried again to lower the entocort to one capsule every other day. I almost ended up in a real flare up. This really scared me. So afraid that it was back and the medication would work again. But in a couple of days everything went back to normal. What a relief.

I saw my PCP last week. I had a couple of things I wanted to discuss with him. First the vitamin D level. He immediately agreed with me that it was a good idea to have it checked, since I have osteopenia I was surprised, I had prepared myself for a whole discussion, about research showing low vitamin D levels in IBD patients.

During the last visit to the GI specialist in May a blood sample what taken for several blood test on other auto immune diseases. I still didn't know the result yet (they work according the principle "we will call you if something is wrong"). I don't know what they exactly checked, but it all looked perfect. Not even a small deviation, the thyroid scores perfectly in the middle, kidney function, liver function, inflammations indicators everything was okay. So knowing besides the MC, nothing is wrong with me is good news. That really felt good. Like I am almost 100% healthy again.

I don't know my vitamin D level yet, I got a blood sample taken this afternoon and will get the results in a couple of days.

Other good news is, I am going to try a lower doses of Entocort, 2 mg a day. Every other day doesn't work for me. I need a dosage every day. But I am quite sure, I don't need a full dose of one pill (3 mg) anymore. I discussed this also last week with my PCP and he said that it may be possible the pharmacist prepared a 2 mg capsules for me. Today I went to the pharmacy and asked them. And yes they are going to prepare 30 capsules for me of 2 mg, that I can pick up in the end of the week. I am so glad they are willing to do this for me.

More and more I get the feeling in dealing with the MC I am better of with the PCP than the GI. My GI thought vitamin D checking was not necessary. I asked the GI also about the possibility of a lower dosage of entocort. Was not possible he said (or maybe he just couldn't be bothered with it), what I was taking was already almost nothing, was his response. Maybe he was already annoyed I had asked for a blood test on other immune diseases, since that is not uncommon with MC. He didn't know this and had to check it. At least my PCP will admit he doesn't know nothing about MC and will see me as the expert. Or maybe for GI's MC is just a minor thing. As soon as the D is going for them the problem is solved.

But all in all so far so good!!!

harma

Post by **tex** » Tue Aug 03, 2010 9:27 am

Harma,

I think you are right - on the average, PCPs tend to care more about their patient's health and welfare, than GI docs. GI docs tend to have tunnel vision, and they don't seem to care what happens outside of the gut.

Thanks for the progress report.

Tex

Post by **Rosie** » Tue Aug 03, 2010 10:15 am

Harma, it's great to hear that you have been improving and are successfully tapering off the Entocort!

Adding back foods sure is tricky, isn't it. That has been the hardest part for me. I get eager to add more foods, and of course try it too early, or overdo on some fruit that I can tolerate in a small amount. But I have been making good progress, now 11 months after going GF/DF/SF. The Enterolab testing also showed yeast intolerance, but now I can tolerate wine and pickled foods, in moderation. The slow pace has discouraged me at times, but looking back I can see how far I've come.

Rosie

Gabes-Apg · Post by **Gabes-Apg** » Tue Aug 03, 2010 2:22 pm

Harma
i agree with Tex, my GI was really good but only with gut related. He was not interested in the intermix of other health issues,

sorry that introducing new foods didnt go so well. Every day i see a food or smell a food that others are eating and i am very tempted, and then my practicle side kicks in and tells me it is not worth it!

keep up with the proactive approach, ask for the tests that you think you need.

take care

Gloria · Post by **Gloria** » Tue Aug 03, 2010 3:02 pm

Harma,

It's interesting that your pharmacist is willing to make a 2 mg. capsule of Entocort. I'm curious if your capsules are encapsulated, meaning they are coated so that they don't activate until they reach the intestine. Can your pharmacist encapsulate them for you?

Gloria

harma · Post by **harma** » Tue Aug 03, 2010 3:29 pm

Gloria, my capsules (budenofalk) are easy to open They will open 20 capsules (3 mg), weigh the granules in total, and calculate how much is needed per capsule for 30 capsules of 2 mg budesonide. Put than the granules back in the capsule and voila budenofalk capsules of 2 mg. The pharmacist called the supplier to check if the capsules may be opened, that was no problem. I even thought of doing it myself, but you need a special - mg - scale, so I can't.

Gloria · Post by **Gloria** » Tue Aug 03, 2010 3:51 pm

I guess I've thought that encapsulated meant they were sealed, but it sounds like they're not. I've never tinkered with my capsules, so maybe they do open up.

It's great that the pharmacist is willing to repackage them for you.

Gloria

harma · Post by **harma** » Tue Aug 03, 2010 4:10 pm

it are not the capsules itself that are responsible for the time releasing of the medication, but it a coating on/in the granules that makes sure the medication gets active far away in the small intestine and colon. Yes I was happy too, the pharmacist is willing to do this.

Gloria · Post by **Gloria** » Tue Aug 03, 2010 4:15 pm

Ah, I understand. Thank you for explaining the process.

Gloria