week 17 off budesonide

[mrs h]

hi everyone, just thourght i would do an update now i am 17 weeks off the budz.
im doing good,
just had bloods done and a stool sample and my calprotectin level which was 400 in dec 2019 is now at 34, anything less than 50 is excellent, now my vit d....its been low in the 20's for several years, i tried supplements, it never changed until now...
i used liquid vit d3 & k2, 1 drop is 1000 IU, and it says take 5 drops a day, since jan i have been doing 1 or 2 drops only and using magnesium lotion, my levels are now 127 ,which is excellent, i have stopped both vit d and magnesium as bloods have shown my kidneys are in stage 3 kidney disease, and need to try and heal. this microscopic colitis has an awful lot to answer for...or did i have coronavirus?

see on march 2nd my diary tells me i was exhausted, my legs wouldnt work, i had a hacking dry cough, but not all the time, an extremly dry mouth, runny nose, and headache, this lasted until around 25 march, i then lowered my dose of budesonide, my symptoms reduced....medication? or virus?
back to my life now, i still have extra fluid in my tissues, but not as much ( i put on 11kg fluid quickly with MC)
im still sticking to the same breakfast and lunch, i have added a snack in every few days of a small peeled apple, any more than this and my belly starts to gurgle,
I CAN EAT SMALL AMOUNT OF VEGETABLES... AND SALAD....oh my goodness, happy days i tell you, well cooked carrots, small garden peas, green beans, and broccoli heads are what i have, but never 2 days in a row,

salad, i can eat peeled cuucmeber, a little lettuce, boiled egg, 2 baby tomatoes, a little red pepper, peeled celery, taking off the outer skin, but again, never 2 days on the run,
i tried a slice of bread, belly was fine, but got a headache, but ooooo i did enjoy it, but wont be trying it again anytime soon,
i am growing veg and herbs at home, and im sticking to turkey and chicken meat and potatoes alot still,
i have BMs mainly in the morning just once like my normal life before hand, they can still be quite sticky, but there always formed, and there has been no sigh of big D since i came of the budz,


i have a belly that still looks pregnant by the end of the day, once iv eaten i ahve to rest/sit, otherwise i get pains, and i make everything from scratch, i finally have a telephone appointment with a specialist bowel nurse , its only taken 1 year here in the uk,of waiting to see a specialist at the hospital , its on the 21 aug, i hope it doesnt get cancelled

im not adding in any new foods at the minute, im enjoying just eating what i can , mixing and matching what i can, and still not really mixing with others due to covid 19, as i am now adding kidney disease, to my already heart problems, and bowel disease,
stay safe everyone, any advice id love to hear, and keep smiling :)

[tex]

Hi,

Thanks for the update. Looks as though you have made a tremendous amount of progress.

Regarding the kidney disease issue — I had that problem a few years ago. My kidney function was deteriorating and my heart sometimes began to skip beats. My EGFR was in the 30s. I looked at published medical research and figured out that my hypothyroidism was being undertreated. At the time, I was taking half-a-grain (30 mg) of Armour, which is a minimum dose. I showed my GP my reasoning and asked him to double the dose. He did, and ever since then I have had no heart symptoms and my EGFR is the best it's ever been (always over 60). The thyroid controls many vital functions, and doctors don't pay near enough attention to it.

Tex

[brandy]

Hi Mrs. H.,

I also had blood work that showed me in stage 3 kidney disease.

The problem was I was getting my bloodwork immediately after going to the gym and lifting weights on a hot day (dehydration).

Lifting weights, deyhydration, and eating meat balls for breakfast on day of lab was causing my kidney markers to go up.

My last 4 bloodworks have been in stage 2 (normal).

Now when I know I am doing kidney bloodwork I do the following:

I don't lift weights for 3 days before the test. I drink a lot of water the two days before the test. I go vegan (eat no animal protein for 2 days before the test)

Doing this I get good scores.

Right after my stage 3 test results I also started drinking nettle tea. This tastes really awful. I found it was not as bad if I had it chilled with stevia. Use a straw. Nettle tea is supposed to help the kidney.

Morning of test I fast (no meatballs etc), I drink a lot of water and I rest until around 10:00 am when I get the test.

If you eat animal protein right before your test or day before your scores won't be as good.

[brandy]

Mrs.H, thanks for the update too!

[mrs h]

oh wow , thankyou both for your replies,

thats something to think about tex, i shall ask my dr to check my thyroid again when i next have bloods done,

and yup brandy, spot on, i walked the few miles to get my bloods done, id eaten fresh chicken the day before, and didnt drink much as i didnt want to need a pee with walking, so i guess that didnt help,
although i have had fluctuating kidney function for a while, its just gotton worse since all this started, but iv definately got something to work at now, and look into, thankyou both.

i feel im doing ok, but my migraines are back, im guessing due to stopping the magnesium for the moment, or the vit d, but my blood pressure has dropped a bit, although still way to high,

but food wise, im doing ok, and for that i am grateful, im still keeping my diary, and ina way im happy our holiday abroad was cancelled, due to covid, it gave me chance to focus on myself instead of worrying about going away,
since being off the budz, if felt much better, but the hot feelings are still creeping up on me, which means im still reacting to something, wether it be food, or myself, and they dont stop if i take my antihistamine tablet, so im still playing detective, i got these at the start when i was given the heart pills that caused all my issues,

yesterday i made gluten free home made lasagne, the sauce i made with tomatoes, red pepper, and red onion, and garlic, liquidised, and i had veg in mine, not ground beef, and im ok, i have been having small amounts of all these ingrediants for several weeks now, with the aim of combining them all, i only had a small amount, but it tasted soooooo good. so now those ingrediants are off limits now for 4 days,
does it get easier? will i always have to plan and make notes and remember?

have a good day, & stay safe xx

[tex]

It definitely gets easier with the passage of time. Eventually, dealing with everything we do to control our MC becomes second nature — the new norm.

You're doing well if you can already tolerate tomatoes occasionally. The tomato is actually a citrus fruit and virtually all of us can't tolerate citric acid until after we're in remission and we've healed for a while. And peppers, onion, and garlic are usually off limits until after we've healed for a while.

I agree with your guess on the cause of the migraines. Magnesium does indeed treat migraines and hypertension. That's been proven by published medical research. A few years ago, when I still had a chronic magnesium deficiency, I had hypertension, and my systolic pressure regularly ranged between 140 and 180 mmHg. I've been taking at least 300 mg per day of magnesium glycinate since then, and my systolic pressure almost always ranges between 95 and 115 mmHg when I check it every morning. I never, ever have a headache anymore, let alone a migraine.

Tex

[Ali Edg]

Hi, I often see Tex refer to tomatoes as a citrus fruit. It's my understanding that whilst they are high in citric acid, they are not citrus fruits as those are fruits such as oranges, lemons, limes etc which are all in the same family. I thought I should clarify this as to refer to tomatoes as citrus fruits just because they contain high amounts of citric acid is misleading. Happy to be corrected if I'm wrong, just confused as to what we were talking about.

[tex]

Hello Ali,

From a biological standpoint, yes, tomatoes are part of the Solanaceae (nightshades) family. But this is not garden club. Microscopic colitis is a medical disease. Medical dictionaries list tomatoes as (along with) citrus fruits. The effect on microscopic colitis is the same as all other citrus fruits. If it looks like a duck, and quacks like a duck . . .

Tex