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Crohn's Disease Forum » Treatment » Colestyramine Powder


02-16-2015, 04:41 AM   #1
lilpiggy
 
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Colestyramine Powder

My consultant has just prescribed these sachets for me to take in respect of diarrheah. I get caught out so much whilst Im out, she thinks they may help.

Any comments on these meds would be great to read

I also take mesalazine in the morning.
02-16-2015, 08:40 AM   #2
nogutsnoglory
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They never helped me but they have been helpful to many people. It was many years ago but I recall it tasting bad so maybe mix it with a juice.

Last edited by nogutsnoglory; 02-16-2015 at 04:37 PM.
02-16-2015, 02:10 PM   #3
DustyKat
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They work well for many people. My daughter was prescribed them 8+ years ago. She couldn’t stand the texture so refused to take them, she was 14 at the time so I do think this played a role in things. That said they did work for her.

After a few years of taking nothing she happened upon psyllium husks and now both of my children use them to bulk up their stool. They have the same action as the Cholestyramine.

Where is your Crohn’s located?

Do you have any strictures/narrowing?

Dusty. xxx
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02-16-2015, 07:29 PM   #4
poopaholic
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I take it twice a day. It has done wonders for me . Instead of 15+ stools a day, I'm down to about 2 or 3. Alot of the time only 1. I mix it with apple juice. But it is hard to take because you need to take it 1 to 2 hours after your medications or 4 to 6 hours before. So to manage taking it twice a day and other meds twice a day is a task in its self.
02-17-2015, 06:52 AM   #5
lilpiggy
 
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Thank you for your replies

Yes, the consultant did mention that a lot of people dont like taking it as it tastes pretty bad..
I havent started taking it yet as need to work out times & other meds in line with the sachets.
I will look up the husks also.

Dusty, apparently I have mild crohns.. they have not mentioned to me whereabouts, and no strictures.
Last year they tried to do a sigmoidoscopy, but couldnt do it or go in very far at all as the bowel was too swollen. Followed on by prednisolone & colonoscopy which showed the crohns was inactive. Having spoken to the consultant last week, I mentioned I was still on the steroids when the colonoscopy was done..

The faecal incontinence is every day and the main problem. I cannot work as I need to be near a toilet. I have had so many accidents whilst out.

The symptoms I have dont really tie in with crohns, every few months I get spells of going to the toilet throughout the day. Have occasionaly seen blood. However I have a permanent aching/burning sensation in my right side lower abdomen, which does get worse if I eat or drink something I shudnt. Other than that severe tiredness. I suppose Im really lucky that I only have a mild case, right.

The bowel nurses just say it cant be your bowel, go back to your doctor as it must be something else.

I also have had Iritis for around 15 years, which is associated with IBD.

Anyway, lets hope the powder works a bit for me, not looking forward to tasting it lol. I will have some juice to hand.

Thanks again x
02-17-2015, 03:03 PM   #6
DustyKat
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Have you had any sort of imaging done?

I just wonder if you active disease or scar tissue in your terminal ileum. This may account for your pain, particularly the way you are describing it and the faecal issues you are dealing with.

Also I am not sure how effective Cholestryamine/psyllium is if the issue is large bowel only. Certainly worth a try mind but it generally works by absorbing bile salts in the small bowel before they are dumped into the large bowel, but if you don’t have an issue in the small bowel then bile salts shouldn’t come into the equation. This would mean the cause of your diarrhoea is from from a different mechanism.

Dusty. xxx
02-22-2015, 08:18 AM   #7
lilpiggy
 
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Thanks Dusty,

I have had an MRI scan, CT scan etc.. which didnt show anything up, all good they said.

Funnily enough, where I have an aching now which gets worse if I eat the wrong foods, well years ago I had a procedure done and a year or so afterwards they did a laparoscopy as I complained about aching/pulling feeling & they found I had adhesions scar tissue. I wonder if this might be anything to do with the faecal issues.

Perhaps I should mention it to the consultant or to my GP maybe.

xxx
02-22-2015, 08:20 AM   #8
lilpiggy
 
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Oh and I still havent gone onto the powders, starting them tomorrow.

I do actually have B12 injections every few months to top up..

xxx
02-23-2015, 04:49 AM   #9
DustyKat
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I would definitely touch base with both the consultant and the GP about the pain lilpiggy.

Again, the way you are describing it, the association with aching after eating certain foods and the fact that you need your B12 topped up periodically to me says you need a thorough examination of your terminal ileum. You can start with something as simple as the GP palpating your abdomen and paying special attention to your lower right quadrant.

Good luck and keep us posted with how you get on.

Dusty. xxx
02-23-2015, 08:44 AM   #10
lilpiggy
 
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Thanks Dusty, this all sounds pretty spot on. Im pretty happy that you have given me this to think about and act on, will keep you informed for sure.

xxx
03-05-2015, 07:43 PM   #11
adr810
 
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I've taken the cholestyramine powder twice a day (sometimes more) for about 2 years now. I found that I always need to take them with food or eat soon after to avoid nausea. Orange juice really hides the flavor but I only use that on occasion as it upset my stomach. I pretty much take mine with water and some type of peppermint. I love to have mine with a small York peppermint patty. I just take bites between sips and it hides the flavor! Best of luck!
03-05-2015, 08:18 PM   #12
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I'm currently taking this med and have taken it off and on over the past 15 years. It works miracles for me!! Without it I am on the throne up to 20 times per day! When taking it though it cuts back to 2-3 times per day My life is so much better with it! Mind you I have a diarrhea due to short bowel (surgeries to remove 4 1/2 feet of small and 1/2 foot of large bowel). So not sure if it would help in your situation.

Here's my advice on drinking it. I don't find it as bad as everyone says. In fact, the flavour is not bad at all (and Im extremely fussy), it's the texture. Its like drinking sand. There are two flavours of this medicine. Orange and Lemon Lime. The lemon lime is way better!!!! I take about 1/4 cup of water and mix the powder. Then drink that. Everyone uses a full glass of something to mix it and I have no idea why?? The more fluid you use, the more you need to drink! I do drink a bottle of water after I drink the medicine though.
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Diagnosis: Crohn's Colitis since February 1997
Surgeries: 2 Bowel Resections - February 1997 and January 2013 (5 feet removed in total)
Current Medications: Humira 40mg (weekly injections), B12 1cc (monthly injections), Cholestyramine (x2 daily), Slow K 600mg (daily), Magnesium, Calcium and Phosphate suppliments daily.
03-07-2015, 07:16 AM   #13
lilpiggy
 
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Hey, thank you both for your replies Interesting..

I started on the powders, yes they taste yuk lol ! but I would suffer anything to make this faecal incontinence go away.

So I took them for 9 days and diarrheah kicked in massively, I ended up running to the toilet about 15 times a day. I had massive griping pains and my bowel hurt like never before.
I thought these powders might make me constipated, not this.. I thought perhaps I had a bug or something & wanted to carry on taking them for at least 2 weeks but I just couldnt.
Within 3 days my toilet habit was back to as normal as can be. So it looks like the powders made things worse. I dont know why....

I am going to give them another try next week and see if it goes back to that state, then if it does I obviously wont be able to take them.

Thanks again guys, appreciated xx
03-07-2015, 05:42 PM   #14
SupportiveMom
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It is supposed to thicken your stool. If you are getting an opposite effect tell your doc. My kid did it for 6 months. Saved a trip or two a day to the bathroom.
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03-09-2015, 08:52 AM   #15
lilpiggy
 
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Yes thats what I understood it does. Im going to have another try and see if it has the same effect, after that I will contact the consultant if same effect.
03-10-2015, 12:12 PM   #16
adr810
 
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Hi lilpiggy! I thought it might be worth mentioning that I don't tolerate the cholestyramine lite. Also, I actually have to have a very specific brand of the cholestyramine from a specific pharmaceutical company. Twice now my pharmacy has ordered the packs from a different company because they are cheaper and even though the ingredient list seems to be the same they make me very sick- I am actually running to the bathroom more. I worked this out with my pharmacist first but now I make sure the doctor includes the exact NDC number on my RX.
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