Looking for words of support

jessica329 · Post by **jessica329** » Sun Jul 17, 2016 8:23 am

Hi everyone,

I tapered down from 3 pills to 2 pills (budesonide) a week ago and a really bad flare started Friday night. It's a doozy and I could use some words of support from my fellow MC sufferers that understand. Will be calling the GI tomorrow.

Post by **tex** » Sun Jul 17, 2016 9:41 am

Hi Jessica,

I'm sorry to see that you had a relapse of symptoms. I hope it doesn't last long.

If you are seeking a renewal of a prescription for budesonide from your GI doc, and she or he is opposed to a renewal, please show her or him the articles at the following links:

For patients with recurrent symptoms when induction therapy for microscopic colitis is discontinued, the association recommends budesonide to maintain clinical remission.

http://www.medscape.com/viewarticle/856156

And this is presumably the research study upon which that recommendation is based:

Conclusions Budesonide at a mean dose of 4.5 mg/day maintained clinical remission for at least 1 year in the majority of patients with collagenous colitis and preserved health-related quality of life without safety concerns. Treatment extension with low-dose budesonide beyond 1 year may be beneficial given the high relapse rate after budesonide discontinuation.

http://gut.bmj.com/content/early/2014/1 ... 08363.full

Medscape is a site for physicians, so any MD should accept medscape articles. The medscape article covers the new treatment guidelines for MC, issued by the American Gastroenterological Association Institute last December. And the second article (published in Gut) should be gospel for any GI doc.

Best of luck with a fast recovery,
Tex

Gabes-Apg · Post by **Gabes-Apg** » Sun Jul 17, 2016 2:28 pm

Jessica
how long have you been doing the 3 pills of budenside?
in this time what eating plan and lifestyle changes are you doing?
do you take Vit D3 and magnesium?

the return of symptoms with the reduced dose does indicate that something in your eating plan or lifestyle is triggering inflammation.

The truth is, that things don't really get solved. They come together and they fall apart.
They come together again and fall apart again. Its just like that.
The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.
Pema Chodron, things fall apart

jessica329 · Post by **jessica329** » Mon Jul 18, 2016 6:58 am

Thanks for the responses. I'm just feeling really down. I started back on budesonide on May 27. Went to 2 pills for a day on June 16, bad flare and back to 3 pills on June 18. Per GI, started to taper and went down to 2 pills on July 10. Flare started evening of July 15. It was very very bad July 16 +17. Today I am still in a flare but not as bad as the last 2 days.

However, this bad flare seems to have induced my period. I ended my period about 1-1/2 weeks ago. Right before bed last night, it started again full force. I've never had this happen.

I don't take any supplements. I haven't been eating much because I get extreme nausea and dry heaving with flares that makes it hard to eat. I follow GF/DF.

TaiaK · Post by **TaiaK** » Mon Jul 18, 2016 7:58 am

Jessica-I'm so sorry to hear about this flare. It sounds like a rough one-very mentally challenging.

I wanted to mention, when I was on Budesonide last year it messed my cycle up. I would get my period at wacky times and it was definitely more frequent. I have always been very regular. My guess is it's the meds. Within 2 months so stopping-cycle went back to normal. I do believe I've seen that this is a documented side effect.

Hopefullly others will chime in on supplements while having a flare but I don't think a topical magnesium would hurt-Epsom baths or mag oil/lotion.

Keep us posted on your progress please.

Taia

Gabes-Apg · Post by **Gabes-Apg** » Mon Jul 18, 2016 1:33 pm

Jessica
you are very likely deficient in Vit D3 and magnesium (both key for managing inflammation and healing)

Also diet wise, you may not have been eating much, but even the small amounts you are eating, what you are eating will impact the severity of the flare
are you gluten free, dairy free? eating bland low fibre type meals?

jessica329 · Post by **jessica329** » Mon Jul 18, 2016 2:26 pm

GI upped me back to 3 pills budesonide and wants to test for C.Diff just to be on the safe side.

Gabes- I follow GF and DF. You are right though. I buy the same products so I don't have to spend a long time checking labels. Last week my husband was looking at a product we have used for years and said, "Did you know that this has whey protein?" I gasped and of course, I was shocked. Although, I really shouldn't be shocked. Anyways, as soon as I can get to the store this week I am going to make a pot of my old faithful, chicken soup.

The GI said my blood work looked good, so I took that to mean that I am not deficient. Here are the test results (first number is my number followed by the range for normal):

UREA NITROGEN (BUN) 12 MG/DL 7 - 17 MG/DL
Creatinine 0.7 MG/DL 0.5 - 1.0 MG/DL
eGFR NON-AFR. AMERICAN >60.0 >60.0
MDRD in mL min 1.73 sq meters. For African Americans, multiply by 1.21.
SODIUM 139 MMOL/L 135 - 145 MMOL/L
POTASSIUM 3.5 MMOL/L 3.5 - 5.1 MMOL/L
CHLORIDE 103 MMOL/L 98 - 107 MMOL/L
Carbon dioxide 30 MMOL/L 24 - 32 MMOL/L
Glucose, Random 86 MG/DL 70 - 199 MG/DL
Calcium 9.0 MG/DL 8.4 - 10.2 MG/DL
Total Protein 7.4 G/DL 6.4 - 8.5 G/DL
ALBUMIN 4.4 G/DL 3.5 - 5.0 G/DL
ALKALINE PHOSPHATASE 63 U/L 34 - 104 U/L
AST 24 U/L 5 - 40 U/L
ALT 17 U/L 7 - 52 U/L
BILIRUBIN, TOTAL 0.5 MG/DL 0.3 - 1.0 MG/DL
WBC 8.7 K/UL 4.0 - 10.5 K/UL
RBC 4.98 M/UL 4.2 - 5.4 M/UL
Hemoglobin 13.6 GM/DL 12.5 - 16.0 GM/DL
Hematocrit 42.7 % 37 - 47 %
MCV 85.7 FL 78 - 100 FL
MCH 27.4 PG 27 - 31 PG
MCHC 32.0 GM/DL 32 - 36 GM/DL
RDW 13.0 % 11.5 - 14.5 %
Platelet Count 394 K/UL 150 - 450 K/UL
MPV 7.5 FL 6.0 - 9.5 FL
Neutrophils 58.8 % 25 - 62 %
Lymphocytes 30.6 % 20 - 48 %
Monocytes 8.4 % 2 - 12 %
Eosinophils 1.8 % 0 - 6 %
Basophils 0.4 % 0 - 2 %
Neutrophils, Absolute 5.1 K/UL 1.8 - 7.8 K/UL
Lymphocytes, Absolute 2.7 K/UL 1.0 - 4.8 K/UL
Monocytes, Absolute 0.7 K/UL 0.0 - 0.8 K/UL
Eosinophils, Absolute 0.2 K/UL 0.0 - 0.5 K/UL
Basophils, Absolute 0.0 K/UL 0.0 - 0.2 K/UL
TSH, Ultrasensitive 1.48 uIU/mL 0.35 - 5.50 uIU/mL
Thyroxine(T4), Free 0.9 NG/DL 0.5 - 1.3 NG/DL

Gabes-Apg · Post by **Gabes-Apg** » Mon Jul 18, 2016 2:34 pm

Jessica
i dont see any Vit D levels in those results

eating plan wise, in the early days of healing MC'ers do much better on home made stews / soups. safe proteins, 2-3 safe vegetables, well cooked.
minimise the intake of processed type foods (pasta, bread, cereal etc)

based on what you have shared, the full dose of budenside reduces the inflammation enough that you dont have symptoms. albeit this means that you are still inflammed and you are not healing. (hence the return of symptoms when you reduced the dose)

Erica P-G · Post by **Erica P-G** » Mon Jul 18, 2016 4:20 pm

Off topic....
But WHY don't they automatically test for 25 Hydroxy D and stick them in with all these other nonsensical results...

That one alone is the one most everyone should be paying attention to in my opinion....

Ok of soap box....I do hope you start feeling better though Jessica, I read about so many tapering too soon and falling into a flare and the Dr by like....oh I'm sorry, and then have to put people back on the higher dose, just to start the process again....I hope you've had a visit with your Dr....about tapering Super Slowly and it might take 6-8 months maybe more...

Hang in there...
Erica

Gabes-Apg · Post by **Gabes-Apg** » Mon Jul 18, 2016 4:26 pm

But WHY don't they automatically test for 25 Hydroxy D and stick them in with all these other nonsensical results...

because big pharma dont make profit from Vit D supplementation

Post by **tex** » Mon Jul 18, 2016 5:08 pm

But WHY don't they automatically test for 25 Hydroxy D and stick them in with all these other nonsensical results...

And in addition to what Gabes posted, because if every patient kept their vitamin D level well up in the sufficient range, and made sure that they were getting enough magnesium, they wouldn't need to go see their doctor nearly as often, so doctors are probably in no particular hurry to see that happen.

Tex

Post by **tex** » Mon Jul 18, 2016 5:19 pm

Jessica,

Since the MC reaction is obviously significantly affecting your hormone production, that suggests that stress and/or histamine issues may be playing a huge role in your high level of sensitivity. But as I recall, you mentioned somewhere that you're taking an antihistamine, so something is wrong. You might check your diet to make sure that there's not an excessive amount of high-histamine foods in it because I've found that it sometimes only takes a smidgeon of high-histamine foods to overwhelm the antihistamine I take.

Also remember that a magnesium deficiency interferes with the proper functioning of diamine oxidase enzyme (DAO), so it's easy for histamines to build up in circulation when magnesium runs a bit low.

Tex

hollyweb · Post by **hollyweb** » Tue Jul 19, 2016 1:02 pm

Hi Jessica,

Just wanting to add in my support, empathy and encouragement!! Others here have so much more experience than I do and you've been given great advice. My other thought is that if you've been gluten and dairy free for some time, and those are the only things you've eliminated from your diet, maybe your body is now producing antibodies to something else such as soy, eggs, nuts, etc. Tex's book mentions this phenomena. Have you done the EnteroLabs and if so, did they show another food / food group that you had a significant response to?

Sending hugs and hoping you can find a new plan that helps you through this time quickly so you feel better very soon!

~ Holly

hollyweb · Post by **hollyweb** » Tue Jul 19, 2016 1:04 pm

And yes, it's ridiculous in the USA that you have to separately request blood tests for magnesium, and also for Vit. D and B12 levels. And of course ... your blood type! You even have to request a special separate test to find out your blood type. Crazy.

~ Holly

crervin · Post by **crervin** » Mon Jul 25, 2016 2:53 pm

Jessica, just want you to know how sorry I am you are having trouble! I hope you are doing better now!

I was just wondering what meat you eat? If it were histamine related, I would suggest buying your meat frozen if you don't already. I buy Cornish hens and small turkey breasts from frozen. I cook them in the crockpot on high without defrosting. Less histamines this way. If I buy it fresh, it's a toss up whether it bothers me or not. I freeze it immediately when I get it home.

I take antihistamines too, but it doesn't completely rid the histamine symptoms from food.

Hope this helps!