Vitamin D3 - I'm grasping at straws

[HockeyMom]

Sorry, I said "packets" and you are taking pills/capsules? I don't really know what the conversion is on that stuff so me saying "8 packets a day" means ?what as far as your capsules go!!!

I will tell you that I work in a hospital, with pt's (I say that because you could work in a hospital without having patient contact) and I see the doctors trial patients on cholestyramine with like 1-2 packets and they are surprised when that person doesn't instantly have perfectly formed BM's. So they abandon it. "Guess that one time trial didn't work!"...what the hail? Seriously? I honestly think GI docs have no clue sometimes!!

Anyhoo, that's my 2 cents for the day. What's that saying? Insanity is doing the same thing and expecting different results? I had to go a different direction because I honestly thought this was going to kill me! Good luck!

Laine

[tex]

Laine,

Many thanks for sharing all that, and offering help to users of this treatment so often. I could be wrong, but I have a pretty strong hunch that you're the world's foremost authority on using cholestyramine to treat MC. If there's anyone out there who's had more real world experience with it, I'd sure like to know who they are, so I learn a few things from them, too.

Tex

[HockeyMom]

Well, thanks Tex. It's not something I want to be an expert on, but if it helps people then BRING IT ON!!

I wish I was one of those people who I've seen post who were like, "I take a half a packet every third day...more than that and I get constipated!" . If only that was my problem!!! I remember reading about people taking 4 packets a day, and I think you get worried when you start needing more than that. Like your turning into a heroin addict or something. 6 packets SORT OF managed me...sort of. Stepping up to 8 packets a day was a huge thing for me mentally I guess. But I did it after having a not so great road trip driving home thru the middle of nowhere southern Utah and pulling over 2x for diarrhea in the bushes in one day. The next day (back in Arizona), I went to 8 packets and that was the ticket. A couple weeks into 8 packets I went to New Orleans to stay with friends and just jumped into the deep end with food I hadn't eaten in years (shrimp, rich stuff-Commanders Palace!). You are crazy Laine.. Well, maybe. And after eating such a CRAZY CRAZY CRAZY restricted diet for a few years, adding anything back into your diet is scary. Like, terrifying. Anxiety producing! I had immodium ready in NOLA in case it all backfired....it didn't.

I keep coming back and posting Tex because if not for this site, I wouldn't have known about alot of this stuff (digestive enzymes, Betaine HCl, etc). Having people that understand you is huge. HUGE. Honestly, I was really concerned I wasn't going to be around much longer in 2017, at the age of 53!! I wanted the diet thing to be the key for me. I just wasn't so I had to look elsewhere. And that elsewhere surely wasn't helped by any of the GI doctors I had gone to. No sireee, not one bit. Don't give up on yourselves people. I didn't. I have a sign on the wall in my house, "I Am The Cavalry". A coworker had a calendar on her desk that had a quote one day that said something like , "Most people waste their lives waiting around for the cavalry to show up to help them, never knowing that they are the cavalry".

Laine

[tex]

You're mighty right. And that's a great quote, I'll have to remember that. Thanks.

Wayne

[suzieq]

Hi Laine & Tex,

Thanks so much for all the information!! There was so much information, I have to reread it.

Here's my update. Per my GI PA, she started me on Pepto Bismol chewable 9 per day which I started yesterday. That being said, I expected to have a more formed BM and lesser time spent on the toilet today. Not! I still had 4 urgent BM's, muddy BM's. I didn't want to take Pepto because the last time I took it, it didn't work and my tinnutis got louder and never toned down. I also upped the colestipol to 6 pills a day on my own. I have enough pills for 30 days. I don't know why Colestipol was prescribe and not cholestyramine. I did take Colestipol, 4 pills a day, 5 years ago, along with budesonide, that worked to firm up the BM. The PA & my GI dr are also contemplating changing the biologic to either Humira or Remicade, that's to be decided. I'm not sure I want either. I also have to submit another stool sample for testing. They did that test back in the end of May, everything was negative. I've also become a connoisseur of Pedialyte. I had to take it several times this week. I was dizzy & lightheaded and my blood pressure was real low, ugh. Even with all the diarrhea, my weight is stable. I've lost a few pounds but not a lot. So the jury is still out. I'm going over everything I eat and cutting out some things that are questionable.

Laine-What part of Arizona do you live in? 2 years ago, I was in a flare, on budesonide, and went on a trip to the Grand Canyon. We flew into Phoenix and drove up to Flagstaff. I was in Arizona for all of 6 hours when I passed out cold in the Outback restaurant in Flagstaff and wound up in the ER. I spent a day in Flagstaff Medical Center. It was a perfect storm to pass out cold: I was dehydrated from the MC, the high altitude and low blood pressure. Not a good combo. I wasn't able to enjoy myself. I could barely walk around in the Grand Canyon, so I wasn't able to do the planned hike. All in all, it was a nice trip. The Grand Canyon, Bryce Canyon and Zion National Park were spectacular. I'm glad I went. I found that I just don't travel well ever. Things always seem to south real quick no matter how well I might be doing.

Thanks so much,
Susanne

[HockeyMom]

I live in Phoenix. I actually spent the weekend in Flagstaff a few weeks ago attending a Blues and Brews Festival. Good time, nice weather and of course some crazy not healthy for you food truck food! Getting up to Flagstaff's altitude and temperature is nice this time of year.

I was so bad in 2017 that I was making my own electrolyte solution-I believe Polly had the recipe posted here somewhere (otherwise I'm sure you can Google it). Honestly, I was concerned that I would end up in my own hospital if I didn't keep the electrolytes replaced. My favorite internal med doctor called to check on me about it!! And I'm pretty sure that my funky heart rhythm issues (got to wear a heart monitor 24/7 for a month with that one) at that time were all because of that. I ended up just slathering myself 3x/day in magnesium oil and lotion...eventually moved up to Remag and then pills. I am known as the Magnesium Queen with all my coworkers-I've got many of them supplementing which has lowered anxiety and gotten them sleeping better. A couple have come off anxiety meds!

I did alot of Pepto a few times. Didn't help my baseline tinnitus either. When I was real bad it just gave me black diarrhea! I've always wondered if Pepto might sort of just help some because it absorbs bile acid to a degree?? Just thinking out loud.

I would question your docs about the colestipol versus cholestyramine. I know they are both bile acid binders, but again, maybe one works better than another one for you. Don't know enough about the different types. Remember, YOU ARE THE CAVALRY!!

Laine

[suzieq]

Are you staying cool in AZ? I can't believe how hot it is. I've been staying in the house, it's hot & humid here and I can't take the humidity. I was waiting to post, I've been waiting for the results of my last stool test, I'm going to have to call to bug them. I've been on Pepto & 6 colestipol pills for a full week, my intestines have calmed down considerably, I'm still having at least 2 MC "mud" BM's, usually in the morning. When will it be safe to add back the supplements that I stopped? I was taking calcium, citrucel, B12 & magnesium, that's all that I can remember right now. I started applying magnesium cream to my calves at night and it has helped with charlie horses I've been getting. I've been taking Zyrtec and 10,000 IU D3 daily. I purchased digestive enzymes & Betadine hcl and I didn't know if I should give it a try yet. I'm dealing with low blood pressure, been drinking pedialyte and staying close to home as I feel off. After reading how cbd oil can help ibd's, I decided to try and help myself. Big mistake!! I took my first one yesterday morning, within 2 hours I didn't feel good, by lunch it was coming out of both ends, then spent another 2 hours in bed wrapped in a fleece blanket, freezing, and then I started to feel better. Never taking one again. I think that's why I have blood pressure issues today.

Thanks for all the help and information,
Susanne

[HockeyMom]

I'm off all week and staying inside unless I go out in the pool. And at this point the pool isn't cool, it's just wet! And I'm not sure if the hospital has decided to save money by running warm this summer...but we've all been hot at work, where usually we're freezing in that building during the summer. In Phoenix...crazy.

I tried CBD oil drops when I was in Colorado years ago and it did nothing for me one way or the other. I was hoping it would help me sleep better. Not. I really think Tex would tell you to stop all the extras/supplements until you have some control over things. Is the citrucel to try and firm things up? How do you know what is working if you have so many variables? I think the mag lotion or anything topical would be ok. I had so many stool testings done, never positive for anything at all.

Laine

[suzieq]

Hi, I'm glad your staying cool. I have been staying inside, I can't take the humidity. The feel like here earlier was over 100+, not my favorite. I'm in SC.
You don't have the humidity, right? Glad your staying cool.

I'm going to hold off on adding anything until this is under control. I was thinking ahead and just wondered at what point I should try. Your right, you add too much you don't know what is working. I had a good day today, no bms at all. I hope that is a good sign.

I got the results of my stool testing, everything was negative except for inflammation. Lactoferrin was at 9.99, it says it's in the high range. I have some other results I like to share from recent bloodwork. D3 was 65 ng/ml, Free T4 was 1.17 ng/dl, TSH was 1.443 uIU/ml, egfr was 62/ml. I take .75mcg levothyroxine. Some posts I've been reading mentioned these, just thought I'd share.

Thank you for listening,
Susanne

[suzieq]

Hi all,

I finished the Pepto Bismol in mid-August and I was good for about a month, still taking 6 colestipol's a day. Mid-September I felt like things were slowly starting to change. That brings me to now, the stool just isn't right and I have to travel for 10 days to NJ for Thanksgiving, which is always stressful for me. I'm still taking the 6 Colestipols a day and the PA added budesonide. Actually, the prescription is written for 3 mg a day but I started with the 9 mg. My question is and I'm sorry to be so graphic: my stool is soft & semi formed most of the time but it is also very smelly, foamy, color's a little off,
have a lot of bad foul smelling gas, and I have seen quite a bit of mucous, which is different then the previous bm's during a flare, why? I don't understand what's going on. I've been having 1-2 bm's a day. I told the PA but she didn't seemed concerned, adding the budesonide. I plan on seeing her after my trip, although I don't know what good that will do, she has never examined me, only talking/listening across the exam room. I have to mention that I added digestive enzymes as well as Betaine HCI with each meal, hoping it will help, the jury is still out. The PA had me add 2 Citrucels. I have to mention that I refused to do the Pepto again because my tinnutis got much worse after taking it this last time. I didn't want to take budesonide again because my eye dr has told me that it has weaken the blood vessels in my eyes and I know it has affected my vision. I guess I'm most concerned about the appearance of the stool. Thanks for listening.

Thanks so much for,
Susanne

[tex]

I'm not sure what clinical symptoms might be associated with a diet cross contaminated by soy, but the symptoms you describe match what I've experienced whenever my diet has been cross contaminated by gluten.

Tex

[suzieq]

Hi all,

Somehow I've managed to have mostly normal stools, for a few weeks, but my belly always feels unsettled and a lot of gas. I stopped the budesonide last week, I was only supposed to take it for the month of November while I was traveling. I'm taking 6 colestipols a day, digestive enzymes with each meal, Betaine HCL with each meal, 2 citrucels a day and if I'm eating out I add gluten ease. I've done a little reading here and found that my siggi's coconut milk yogurt, that I have in the morning with gf granola and blueberries, is a problem, it has pea protein in it. I didn't realize that pea protein could cause a problem. I just discontinued it. Could this be causing the unsettle feeling in my belly? I also read something Tex said concerning stress, which I seem to have a lot of. I might have the wording incorrect but I believe it was something like "stress trumps medication"? If so, I don't have a chance. I mediate with Headspace & do Tai Chi breathing exercises, take Tai Chi classes and now that I'm feeling better, I'm taking long walks. My CC reared it's ugly head after an extremely stressful situation on April 12th, 2011 and hasn't gone away. I might have had a few flares here & there before that but they were short lived. Anyway, thanks for listening. Any suggestions would be appreciated.
Thanks,
Susanne

[cloud9er]

Hi Susanne,

Have you considered acupuncture? It works by trying to find harmony in the body so that it can function as it should.

Amy

[suzieq]

Hi Amy,

Thanks so much for your suggestion. I'm going to look into that. I visited an acupuncturist when I lived in New Jersey who was wonderful. I don't remember exactly why I went to him though. I live in South Carolina now and I'll ask around for a recommendation.

Thanks again,
Susanne

[suzieq]

Hi,

I continue to be a mess. I continue to be on Entyvio infusions, Colestipol and I just had to start budesonide again, I'm in a flare. I saw the GI PA this week and stool test was done. My pancreatic elastase was 177 ug/g, low, and Calprotectin was 1350 ug/g, high. I was prescribed Creon and will undergo a colonoscopy to see if there is anything else going on. I was also prescribed Alosetron to help the calm the brain/gut nerves. I continue with a gf, ef, sf and cf diet and I pretty much watch everything I eat. The hope is by taking Creon I will be able to get off Colestipol and budesonide. It will be 3 weeks since I started budesonide and I still get MC mud which is a better than the watery d.

Thanks,
Susanne