Vitamin D3 - I'm grasping at straws

[suzieq]

Hi all,

I'm currently in my 7th week of a colitis flare, I receive Entyvio infusions every 8 weeks and I'm taking Colestipol, 2 pills a day. My flare is way out of control, nothing I try makes any difference.

I just remembered that back in January 2023 my endocrinologist had me reduce the amount of D3 to 5,000 IU, just 5 days a week, down from taking 10,000 IU a day for over a year. The reason being blood results showed that my D3 level was high at 75 ng/ml, retested recently and it's still high at 65 ng/ml. Now I'm grasping at straws here but could this be a factor in my current flare?

Thanks,
Susanne

[tex]

Possibly, but that's not likely, because you're still averaging over 3500 IU per day. For what it's worth though, 75 ng/ml is not too high for anyone trying to prevent or control a disease. Your gastroenterologist is making the mistake of recommending that your vitamin D level should be the same as the level found to be suitable for healthy people.

I try to keep my vitamin D level between 65 and 75. 150 is too high, and 100 is more than we need, but 75 is not too high. At 65 ng/ml, you should have plenty of vitamin D in circulation, so I doubt that this is your problem. I'm only guessing, obviously, because we're all different.

Tex

[suzieq]

Hi Tex,

Thanks for your reply. I decided to go back to the 10,000 IU of D3 for a little while, just to see what happens. 1 1/2 weeks into taking the Colestipol, my BM's have gone from 3-4 explosive watery BM's a day to 2 mud like BM's a day. They only happen in the morning, shortly after I get up, they don't wake me up at night. The excessive intestinal activity is diminishing, after dinner it starts rumbling but not to the extent that it had been. I can only hope that it's a little progress to getting back to "normal". Maybe I'll be comfortable leaving the house again soon, I've been staying close to home. I also realized that I can't take Imodium without getting some unwanted side effects from it, pain in left side, waist high, until it wears off allowing for a BM. I tried Pepto Bismol the other day, it didn't cause the same side effects.

Thank you,
Susanne

[tex]

You know, if we use it, we all have to find the proper dose for colestyramine by experiment, In order to make it work properly, most of us need more or less (usually more) than the recommended starting dose. You might just need a bigger dose.

Tex

[suzieq]

Hi Tex,

Funny you should mention about taking more of the medication!! The 7 year old Colestipol prescription was for 4 pills a day and that was to boost budesonide. I have plenty of pills, the leftover 7 year old Colestipol, the pills I got through GoodRX because the prior authorization for my insurance was taking so long and now the pharmacy advised me that my prescription through the insurance is ready (the prior authorization took about 2 weeks to get). I have plenty of pills, I'm going to 4 pills a day for a while!! The Dr I saw 7 years ago is hard to get an appointment with so I started seeing his PA. I have mixed feelings about the Dr & PA but I'm established with them. At one of the appointments I was saying that I was dying for a piece of NJ shore boardwalk pizza (the best pizza I ever had and I miss it terribly), and the PA suggested that to go ahead and give it a try my next trip up to NJ!!! I knew better than to do that!!

Thanks for all you do here on this site!

Thanks,
Susanne

[tex]

Oh-oh! Obviously you know more about this disease than that PA. If that pizza place offers a gluten-free version, it might be worth taking a chance, since the odds are about 50-50 that it might not be cross contaminated, but then, their gluten-free recipe may not be as tasty as the regular version, either.if you decide to try one (a gluten-free version), and it's not too badly cross contaminated,taking a dose of Glutenease before you eat might prevent any serious reactions. Tests show that it helps a little, although it can't prevent a reaction against more than a small amount of gluten.

You're very welcome.

Tex

[suzieq]

HI Tex,

No, LOL, there isn't any gluten free pizza available at any of the stands on NJ seaside Boardwalks. The only pizza I had recently is frozen, Milton's cauliflower pizza, it's certified gluten free, if that means anything. It's pretty good and my husband likes it too. I didn't know about Glutenease, I'm going to order some to try out the next time we go out to dinner. I'm sure anything I've ordered out lately had cross contamination going on.

I'm entering my 8th week of the worse flare I ever had. Yesterday was out of control, last night too. I had been doing a slightly better. I started taking double the Colestipol prescribed yesterday. Monday it will be 2 weeks that I'm on Colestipol, supposedly it's supposed to help by then. After yesterday, I have my doubts.

Thanks,
Susanne

[tex]

Further experimenting with the dose, may eventually pay off. I believe you're correct, that dose changes need to be on a weekly or biweekly basis, to give it time to work. If I recall correctly, Laine (HockeyMom) eventually wound up finding that eight packets per day is her best dose, and she's been using that dose for years. If you do a search using the keyword cholestyramine, and list her as the author, you should find plenty of old posts, if you want to review any. She's the resident expert on colestyramine. I'm not sure if she's available to answer questions, or not, because I seem to recall that she mentioned that she was going on a cruise sometime this year.

Tex

[suzieq]

Hi Tex,

Thanks, I read some of Laine's posts, they were helpful. One post struck me. In the post a person mentioned that nothing seemed to be working and they decided to add psyllium, they took it and it helped. So yesterday (& today) I took 2 psyllium after breakfast plus the 2 doses of colestipol and I didn't have to run to the toilet this morning. I've been running to the toilet 3-4 times first thing in the morning. As of now, I haven't had a bm today and my belly feels bloated and gassy. I'm guessing that's from the psyllium. The PA had previously recommended that I take Citrucel (less bloating & gas) every morning, I was only taking one a day and it didn't help and I stopped it altogether when the flare started. Is Citrucel as effective as psyllium? Anyway, I'm hoping it works. Maybe with the added psyllium I only need 1 dose of the colestipol? Today is also the 2 week mark of taking the colestipol. I'm really grasping at straws here. I feel like I've lost 2 months of my life. I've had enough.

Thanks,
Susanne

[tex]

Adding psyllium without waiting for the colestipol dose to stabilize makes it impossible to tell which one is causing the constipation/bloating. Only one diet change at a time can be accurately analyzed.

Tex

[suzieq]

Hi Tex,

Thanks. I realized that after I did it, I'm back on track today. Sunday's 4 bm's were #7 on the bristol chart, Monday no BM, today, 1st bm #5, 2nd bm #6. Will see what happens going forward. Keeping my fingers crossed.

Thanks,
Susanne

[suzieq]

Hi all,

I'm in the 9th week of the worst, most bizzare flare I ever had. I ended last week with a lot of wd and started this week with the same. Sunday night my intestines stopped rumbling and I got a good night's sleep. Yesterday my intestines were quiet all day and I had a small bm, #2 on the bristol chart, I thought I was making progress. I thought maybe the alkaline water I drank the day before helped a little, I drank some yesterday but not as much. I felt ok and decided to go to my weekly card game, which I've missed for these last 9 weeks because of the bizarre flare. I made it through the game but the loud rumbling intestines showed up during the game. This am I woke up to a #5 on the bristol chart to be followed up by #6, mush. Last Tuesday I stopped the Citrucel and I again cut back on some other supplements, now only taking D3 and an antihistamine. I had made some plain ground turkey/sweet potato dish yesterday that called for a teaspoon of tumeric, should I have not used it? I have to call into my Dr. this week, I don't think the double dose of colestipol I've been taking is helping at all, it's over 3 weeks on it. It did work 5 years ago when I took it with budesonide. I had to remind the PA the reason I stopped budesonide. After taking it on & off for 11 years it has weakened the blood vessels in my eyes and I have some vision problems. The PA told had told me the next step is Prednisone. Why would I want to take Prednisone? Wasn't my chart review before my visit? Anyway, thanks for listening. I hope everyone has a wonderful 4th of July!!

Thanks,
Susanne

[tex]

Some authorities consider turmeric to be a natural laxative. A higher dose of colestipol would be safer for your eyes, than a corticosteroid.

I hate to bring this up, but most of the biologics eventually stop working for many people. Their effectiveness tends to decline with time. In those cases, the dose has to be increased, or the treatments have to be given more frequently, or the patient has to switch to a different biologic (if they want to continue using a biologic). At any rate, you might want to discuss that with your doctor.

Tex

[suzieq]

Hi Tex,

I only added the tumeric because I was trying a recipe from a leaky gut cookbook. It said it was an anti-inflammatory. I won't use it again, I don't need any more trouble.

I'll be curious to see what the PA says, I'm planning to call into the office today. I'll take more of the colestipol, I just have to get more. Regarding the entyvio, as I think back there were subtle warning signs that something was up before it stopped working completely. I remember some intestinal upsets, no diarrhea, and thinking, did they give me a placebo? And of course, there was the 3-week flare in December & 2-week flare in February that I thought came on from stress.

Thanks for your input Tex. I'll post an update.

Thanks,
Susanne

[HockeyMom]

Hey People-
Sorry, I don't check in often! Life is good and I'm getting geared up for a trip to Sweden in a few weeks-my first trip to Europe!! And yes Tex, I went on a Caribbean cruise in February of 2022-all went well..

I seem to remember other people saying Colestipol didn't work as well for them as cholestyramine did. So that might be something you need to change. And for me, I need Epic brand cholestyramine (was Sandoz)-my insurance is fine with it as it's a generic. I really wish I was able to just take something in a pill form as it would make my life much easier-and because I take 8 packets a day..that's a lot to take in a carryon for a trip. Plus mixing it is sort of a hassle (in public...like a plane ).

But cholestyramine alone doesn't do it for me. I HAVE TO TAKE Betaine HCl and digestive enzymes with every meal. Just low level enzymes, nothing crazy high powered!! And again, weirdo me has to take quite a bit of Betaine HCl-depends on how much protein the meal contains. Whenever I've decided I was doing so well that maybe I don't need the stomach acid and enzymes...things start to slowly creep the wrong direction as far as poop quality goes. I'm not perfect, this whole digestive things seems to be a moving target and I'm constantly making little dosage changes with all of the above. That said, I'm functional/travel/work full time and eat and drink whatever I want.

I don't see any upside to creeping up crazy slow with the cholestyramine dosage. If you see or feel any improvement with 2 or 4 packets a day, then bump it up!!! I do remember being sort of bloaty initially, and I still think I am a little bit that way but that's something I'm willing to deal with to have my life back. I honestly think that many people abandon the cholestyramine thing because they either don't give it enough time or they don't take enough of it. I guess I'm saying that doctors under dose patients with this stuff. I just see a NP at my PCP's office and they are just fine with 8 or 9 packets a day (my prescription is actually written for 9 a day).

Hope this helps!

Laine