Cautiously optimistic/cholestyramine, *edit*, big flop

As much as I wanted this medication to be my magic cure, it's not. Developed right eye problems, which are indicated on a list of side effects. So no thanks, going to try the chewable Caltrate pills again. I did experience a full week of almost normalcy (still multiple times per day, just not messy at all). Still waiting for the other shoe to drop though and staying close to home.

To be honest this medication - cholestyramine - freaked me out after I read all the side effects. Also how you need to stop all other meds 1 hour prior to taking it, then drinking it quickly, not sipping and then just as quickly brush your teeth thoroughly before it damages your tooth enamel.

So my little 1 week experiment wasn't for me. I'd rather not have my right eye messed up!

Wow, you're struggling so much more than I am! So sorry to hear this. I usually do not experience pain with my chronic daily bm's, even if I get into the dumping episodes. I will say I had slight cramping twinges when I started this medication. But I knew I was taking an extremely small dose, instead of 1 tablespoon, I was taking 1/2 teaspoon.

I have to say this experiment somewhat freaked me out.

So calcium here I come. I figure that isn't as damaging. And worth a try again.

I am so sorry to hear you lost health insurance. That is just awful. I'm close in age to you as well, 56. Times sure have changed in the health insurance industry since I had cancer 12 years ago. Back then we had incredible copays and most post-cancer preventative procedures were covered, if I went to an in network facility. Now nothing is covered, applied towards my individual $2500.00 deductible. My husband just came home with more insurance forms to fill out again, insurance where he works (small company, 6 employees) is going up 36% December 1st. Great. We already have lousy insurance, I shudder to think what we'll end up next. Meanwhile I know it would help out our family's budget if I could work full time with benefits. But I can't see how I can work full time, not when I usually spend 3 to 4 hours per day in my "office", ha. People say - well work at home? Doing what? Those scam jobs? No way. So I work part time, w/o benefits. Sometimes I don't know what to do. Lately this powder has been keeping me out of the bathroom so much but my eye problem has me really freaked out. Hoping to schedule an exam ASAP to rule out any major concerns. What an odd coincidence that the image problem I see out of my right eye started 4 days after starting this new medication. Wish I knew for certain if it's a side effect or not (from what I can gather, it's extremely rare if it is, most people suffer from constipation).

Up until now I've been very leary to try strong meds to control my situation. For years diet, food portions and timing when I ate usually worked and I could have a very small social calendar. Now I tend to stay home a lot. If someone had told me I'd have this problem after colon cancer I would have said no you are crazy. There are people who had CC and had higher up portions removed who go back to eating fire house chili for one example w/o trouble, I am envious in a way but happy their lives continued on without upset. I am a mess hip to hip, truly I am. And yet, I've never had cancer return nor any colon polyps in 12 years. People like to remind me of this too - and I smile for a minute or two but have to walk away because they have no idea the daily troubles I go thru!

Well, by reading your bio I can see you struggle each and every day and I want to say I feel for you. Truly I do. Take care.

I wish I had better control of my body as well. After all this time, I had hoped to have figured it all out.

If there's one thing I've learned with my touchy gut is this - nothing lasts forever! Just when I find something that seems to really help me, it stops working. Or helping near as much as it did in the beginning. Sigh.

I've stopped taking cholestyramine and will eventually try Matamucil next. I just want to give my tract a chance to calm down. Still on the Colace and Probiotic though. They are not near as strong as that cholestyramine was, I read on one link that if a patient never experiences yellow bile output, they shouldn't take it. That really scared me straight. I have never witnessed anything resembling yellow bile, just the dumping episodes that go on for hours, several times a week.

So to those that this powder works very well for, I'm happy for you. But it just wasn't for me.

I did have 1 pretty normal week though! That was something. Should have traveled or taken a cruise (in hindsight, he he).

Update on my exact Cholestyramine experience:

Rx #1 worked great, manufacturer was Sandoz

Rx #2 didn't work at all, manufacturer PAR Pharmaceuticals

Rx #3 (at this point I went into my pharmacy and spoke directly with an experienced tech and pharmacist.). It was determined that my gut responded extremely well to the Sandoz one, not the other manufacturer of this product. Yes the ingredients are listed in the same order and are the same thing but both the tech and pharmacist were rapidly quick to point out that this isn't the first time they've heard a story like mine.

I was ready to write off this med off and resign myself to daily dumping episodes.

Thank goodness the tech and pharmacist knew instantly why I had great success with the first can, it was a different product than my second refill!

So in a wordy way, I do recommend this product but if you try it, and it works well for you, write down which manufacturer you found these results with and always have your pharmacy fill your Rx with that particular one.

I thought there was something wrong with my gut - well, there is something wrong, ha ha but I wanted the same exact excellent result I got first time around and can #2 was a huge disappointment. It was like taking coolaid.