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ooops - waited too long to refill my script

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Crohn's Disease
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Posted 6/28/2016 11:47 AM (GMT 0)
As many of you know...I live by my cholestyramine. It's what let's me go to work and be in public. I thought I had a box of packets in the bathroom when I was running low in the kitchen. Ooops...I did not. I am down to my last three packets.

Now what irks me more. I refilled on last Thursday and said I'll pay the $18.95 to have the order rushed. The current expected arrival date is Wednesday (tomorrow). Hmm when I don't pay the rush fee, it is 8-12 days, the rush is 5-7 days. Either way, they have seemed to get to my house in 7 days.....so I paid for what exactly. They come USPS either way. My own fault. I used to be sooo organized!
Posted 6/29/2016 1:47 AM (GMT 0)
Can you use Imodium in the meantime, or doesn't that work for you? I just had another negative stool test, which I did because my D seems to be increasing lately. When I found out the stool test was negative, I asked my GI to try the cholestyramine. (3rd time I've requested this btw) He said sure, he'd call it in, but of course the pharmacy doesn't have any record of his call. He is pretty absent minded or overworked or something. Anyway, now I have to deal with his evil receptionist who i despise. I bet it takes me a week to even get it ordered, what fun!
If you have advice for me about the med, advise away. I am on this pattern where I feel almost bloated/constipated for a day, and then I start with formed poop which is followed by endless D. Then, even if I don't take Imodium, the D stops and the whole pattern repeats itself. It's like once I start pooping, I can't stop till I'm completely cleaned out....like a colonoscopy prep without meds. Weird stuff. So I don't want to get more bloated/constipated from the cholestyramine.....any thoughts on dosage,or timing? I'm sure you know more than my GI on this. I did ask for the powder, so I can alter the dosing.
Posted 6/29/2016 12:05 PM (GMT 0)
Hey gumby...imodium has 2 issues for me. 1) I am terrified of it for no sane reason. Way back when I first ruptured & I didn't know it yet, I took some Imodium. Kept feeling like I had to go but couldn't. Thought the Imodium would stop the feeling---boy was I uninformed. Just the word makes me flash back to the feeling after I ruptured. 2) I have sued Imodium twice since. It either does nothing or it stops me from going for 3 days....either one was not pleasant.

-I don't generally get the C feeling you have but I do get the bloated feeling. I guess I would say I get formed/bloated not C/bloated. On those days, I take only 1 flat measured teaspoon of the powder. On other days I take a rounded teaspoon from the silverware drawer. Not very scientific, but I am used to measuring as I bake for a side job.
-I mix mine in OJ, but I use only about 4oz. of juice....you can use more and it will be more thinned out. I just don't mind the taste or consistency at that amount. Someone I hear used to mix theirs in applesauce. I love applesauce, but orange & dry powder mixed in sounds blech to me. Others mix in water, but I like the OJ consistency. Any liquid you can tolerate should be good....thicker better.
-I take mine in the morning. It tends to lose effectiveness as the day ends so this way I am covered up until 9-10pm sometimes later. If I take it before bed like my GI recommends, it seems to be worn off by the end of the work day or in the work day. Taking at night would just make coordinating it with other meds easier. I drink OJ in the morning so it fits with my morning set up.
-You do need to wait 4 hours after to take other meds, or take them at least one hour before. I just moved my 3x day meds to twice a day split and wait the 4 hours. I really don't want to have to wake up even earlier in the morning.
-I have winged it and taken it late in the day when I actually sleep in or if we ran out of OJ and I forgot. It does help almost immediately for me. I can feel the acid burn in my guts until I do take it. I will go straight bile in the morning until I take it. Ow

That's everything I can think of right now....let me know if you think of a question. Definitely try less on your C days or maybe you can do every other day...like so much else with this DD, it is trial and error
Posted 6/29/2016 2:00 PM (GMT 0)
thanks Erin! Now if I can only get the doctor's office to actually call in the prescription! What I call C isn't really constipation. The stool is always fall apart soft, but I just feel bloated and can't go, sometimes for a whole day and then I flip and the floodgates open and I go on my "poop-a-thons." I really don't even know if this is a bile acid problem, but I guess it's worth a try. I don't know what else to do and my life is getting seriously disrupted unless I starve myself, which I do when it's needed. And this is remission:-) I hope things are going a little better for you. Thanks for the advice!!
Posted 6/29/2016 2:25 PM (GMT 0)
I sort of have something similar to gumby's cycle, only I never go a whole day without pooping - the lack of a colon ensures that I suppose. But I get that almost constipated/bloated/blocked feeling followed by going to the toilet a lot.

Gumby - Do you ever get the butt burn from hell? That's bile acid diarrhoea. It feels like you are passing literal battery acid and has nearly made me cry before now. For some reason that has been better for me lately - it's another thing which seems to come and go.

I think I'm gonna ask for a prescription for cholestyramine as well. If it makes me sleep through the night, without needing to get up once to go the toilet, it will be worth its weight in gold. (Imodium doesn't - doesn't seem to work for more than an hour or two at most.)
Posted 6/29/2016 2:59 PM (GMT 0)
NCOT....it really doesn't burn, which is why I'm wondering if it's not bile acid at all. I do have hemmies and they always act up when I go a lot. I also had horrible cramping this morning. The biggest problem is what I call dumping or poop-a-thons. I go till it seems like my colon is completely empty, a day goes by with nothing and then it happens again all over again. I do sometimes wake up at night with D. I guess it can all be "IBS" but I suspect it has something to do with my surgery/anatomy now.It is seriously interfering with work and play. We have a boat and I worry about going out on the water, which really sucks!! I have no idea if the cholestyramine will even help....I just don't know what else to do.
Posted 6/29/2016 6:38 PM (GMT 0)
NCOT - my sister and I call that barn burners. The acid for me has always been bad since -18" at the TI, taking the gallbladder just made it worse. It makes me cry it hurts so much and is the worst part of CD for me. I even poured vinegar on one of my husbands cut fingers to explain that my pain was even worse than that---he gets it now hahaha.

gumby...I would say even if you don't have the bile issues, you may have absorption issues post TI resection. This can cause D to be anywhere from intermittent to all the time occurrence. For me, just the resection and the limited diet have meant D all of the time...then some "pudding consistency"/bloated/not really C days like you describe. If you eat more fiber than I do, you may lean away from the D more. I have those all day potty breaks sometimes too---especially on those off weekends where I attempt no cholestyramine. I really think the cholestyramine could add some balance for you.
Posted 6/29/2016 9:17 PM (GMT 0)
Thanks Erin,
I'm definitely going to try it. Now if I can only get my doctor's office to move off their dysfunctional selves and actually call in the script. No call back yet......(Big Sigh here!!!) I guess I'll call again tomorrow!
Posted 6/30/2016 12:19 AM (GMT 0)
Cholestyramine is wonderful for the acid burning stuff! Had that issue ever since they took out my gallbladder. I know when I've skipped a day when the burning is back! Awful!

I live on it too though, and sadly only my GP seems to understand why I need it.
Posted 6/30/2016 1:30 AM (GMT 0)
Jeez, I don't like to think what my BMs would be like without a gallbladder.

@gumby - I had a poop-a-thon this evening. Between dinner and going home (I was at my parents' house) I must have gone to the toilet at least 8 times. Didn't have a lot to eat today or a big dinner either. Still I'd rather go 8x in the evening than 8x during the night.

@Habs - Yep, you've got it! It really is excruciating and it's instant too - it burns your butt the moment it comes out. Wiping is even worse. Using toilet paper that has been wetted with cold water is the least worst option that I've found.

I've got a hospital appointment tomorrow. Will try to get a script for cholestyramine then. Really, really hope my GI is in 'cos I need to talk to him about the 6MP (it isn't working, although I suspect he'll tell me to give it more time...) and getting some sort of pain relief prescribed as well.
Posted 6/30/2016 2:13 AM (GMT 0)
NCOT I highly recommend simple saline on the paper too. I by the cheapest I can find. It seems very soothing.
Posted 6/30/2016 4:55 PM (GMT 0)
Yay! I finally got the choestyramine. I am starting with just 1/2 packet (about one household teaspoonful) just to see how I do. I put it in OJ and it was pretty tolerable. I've been avoiding OJ because of the D, so it seemed a bit counter-intuitive, but it did make it easier to drink. I'll let you know how it goes

My doc's receptionist was a total ***** as usual. When my doc didn't call in the prescription, I called and left a message asking if they would call me to let me know when the script was called in. I heard nothing back for two days. When I called this morning and asked about it, the receptionist in an extremely *****y tone of voice said "That script was called in yesterday, why are you calling again?" When I explained that I was waiting for a call back from her confirming that it was called in, she was totally silent as a response. So I just said thanks and hung up. That lady totally hates my guts. (I totally hate my guts too, but for different reasons, ha ha) I swear I've never been even vaguely rude to her, just persistent when they don't follow through. Oh well, I guess there's mean people everywhere!

Erin, did your script arrive yet??
Posted 6/30/2016 4:58 PM (GMT 0)
NCOT....let us know how your doc appointment goes today
Posted 6/30/2016 7:33 PM (GMT 0)
gumby - my refill came in last nights mailbox! Yaaaaaa. Glad you are trying it out. Hope it helps you find some gut balance. The receptionist sounds like a power control person...and you are too strong for her....too bad for her.
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