Questran questions

Last December, I finally got the ileostomy takedown. But, I am having just as much trouble now than with the bag. I don't have a colon any more. I am working with a rectum and small intestines(J-pouch). I have even had 6 inches of my small intestines removed from Crohn's. My problem is chronic diarrhea. 90% of the time, it burns like fire or like hot acid is coming out. The color is mostly yellowish-green. I take psyllium husks in pill form, immodium, lomotil and eat a lot of binding foods. But, it rarely works. I've only have 1 formed BM. They all float but I'm on a very low fat diet. I don't eat oil at all because I can't digest it. I am running to the bathroom constantly. I'm so tired, I sleep for over half a day. I have to wear diapers to bed and I go through so much Calmoseptine. And that stuff is expensive. I don't go out at all. I have to force myself to shop for food. I have lost over 20 lbs. in a month's time. That doesn't bother me because I have hypothyroidism and have been on tons of Prednisone. But, I feel like I'm starving but I can't eat much of anything.
Does anyone know if Questran will help with the diarrhea and the severe burning BM's? I hear that a low dose codeine helps as well.
I don't know how much longer I can live in this torment. I have talked to a doctor and they say I am a candidate for the BCIR procedure. I can't go back to an external bag. I'm severely allergic to tape and adhesives. It eats away at my skin.
Can someone help me out? Should I call my doctor and ask about Questran and codeine?
Thanks for your help.

Hi stacey,
I suffer chronic diarrhea as a result of gall bladder surgery. The bile acids just run straight into my gut and anything I eat goes straight thru. I took questran lite years ago as part of a cholesterol lowering treat ment. At that time i was suffering constipation as much as D so I didnt take it for long. Since I have had the chronic Diarrhea this time I have started taking questran again. I have gone from 5-15bms a day to 2-3, and no side effects. You can take questran with any liquid,it is a gritty powder. I take it with orange juice that still has the pulp. The questran binds the bile acids and takes them thru without triggering an instant loo session. I think you should ask your doc about it as it helped quite a few people here... Ron.

Hey Ron50,
I would love to have 2-3 BM's a day. Right now, I have about 15-20 BM's a day. I am waiting on a call from my doctor. It's not only annoying but it's painful and I dread going to the bathroom. I'm pretty much a recluse. I have my gallbladder but I think that I also have problems with bile salts since my colon has been removed and some of my small intestines. I hope that I can try the Questran and I hope it works because I don't want to have another surgery.
Thanks for the response
Stacy

I used questran with loperamide for years but the result depended on how severe the crohns was. unfortunately they then gave me horrific griping pains so i had to stop it. I also take codeine in low dose as i was addicted to dihyrocodeine for years. the codeine might help you though. but i'm on and off loo all day and night. utterly exhausting isn't it.

how's the diet? tried just salmon and boiled potatoes for a number of days? must say the bile just zooms through me too, i also have my gall bladder.

good luck though

Questran took me from 40 BM's a day to very few or sometimes none per day You should def check with your GI to see if you're a candidate for it.

Thanks, guys for your responses.
As far as diet goes, I am on an almost no fat diet. I stay away from added fats like oils, animal fats and grease. Fat occuring naturally in foods like oatmeal and peanut butter don't bother me. It's extremely annoying. Sometimes I wonder if the acid has eroded my skin. Calmoseptine works but it's pricey. $2.00 an ounce and it comes in a 4 ounce tube. It might last me 4 days.
40 BM's a day?! I thought 20 was bad. Do you have a J-pouch?
I think most doctors try to milk insurance. I wonder if my GI surgeon is doing this. I was supposed to be reattached in August. I had surgery but the doctor didn't take down the ileostomy. I was healthy and my Crohn's had been in remission for almost 4 years without medication. He said wait 6 more weeks and he'll take it down then. Now, he tells me to try Immodium and Kaopectate. I already informed them I was on Immodim. But, Kaopectate? I see that as being for people with normal bowels with temporary, acute diarrhea. Mine's not acute or temporary. But, for him to write a prescription for Questran, I had to make an appointment to talk about it. Now, I have to wait another week before I get the medicine, prolonging my diarrhea. He had better write it after all this hem-hawing around. I can't help but think that as long as it isn't them suffering, they don't care.
I still don't take any meds for my Crohn's disease. I am taking a store brand Immodium but I have to take 3 times the recommended dosage to make a dent in my BM's. I end up feeling sleepy all day. Then I eat a bowl of oatmeal with dry toast smeared with apple jelly. My diet is very limited.
I hope to be on Questran soon. I'll let you know how it goes. I'm tired of staying at home 24/7.

stacy, i'm home 24/7 too. not just loo and heavy liquid feed pump but the joints and extreme fatigue too. I would do anything for a cure!!! sounds like you too. gl with questran. It did work for years but not any more.

good luck

Spooky1. Yeah. It's tough. I'm now taking 18 Immodium a day. It has helped a lot but, it makes me groggy all day. I end up sleeping off and on all the time. I went to be around 10 last night and didn't get up until 3 the next afternoon. I did get up a couple of times to use the bathroom. I don't mind it since I've missed a lot of sleep for weeks because of the diarrhea. I really hope the Questran works to where I can lower my Immodium intake.
It would be nice to feel normal, huh?

you gotta life like mine. The heavy sleeping can be crohns anyway. I sleep loads during the day too. One thing a specialist said recently is if you have a narrowing and take questran or similar you have to be careful that you don't get bunged up behind the stricture as this can cause problems. Well, i'd like to do a normal poo!!! can't ever remember what that is like lol.

good luck with questran, eased things for me for years. and that many immodium can cause abdominal cramps and gripes, so be careful though.

Hey, Spooky.
I had blood work done and a CT scan with dye down below. They couldn't find any Crohn's and my rectum looked great. That's why I was able to have the take down. The Immodium doesn't cause cramps. It does give me relief for about 4-6 hours. I love not pooing for that long. But, if I wait too long between doses, my stomach starts that familiar gurgling.
I'm glad my passion is writing because I can't go to work. I work at home in my pj's.
Yeah, the last time I had a regular poo, it was over 15 years ago.
Thanks, I hope the questran works.
Hope you're feeling well.

Stacy. I seriously need to employ myself. I don't get out either. There are some ty[es of crohnies that employers wouldn't waste their money on. Maybe this year i could sell that norty novel online as an ebook, lol. I got ideas, just need to find confidence. What do you write?

Spooky1,
I write fiction. Paranormal romance and children's books. How I feel day to day is always different and unpredictable so working out of the home wouldn't work. No one would hire me if they don't know if I can keep the schedule.
Writing helps and relieves stress because I cant 'get away' for a while.
I am from the U.S. and I'm not sure what 'norty novel' is.
Keep writing. I find it helps my health.

we just spell it 'norty' for a laugh. its a naughty novel, ie a bit racey! must say its nice having a fantasy world of fiction going on in my house as not much else other than loo breaks and snooze breaks is possible. i recently bought more books on writing for the internet world. i shall hopefully give it a proper go this year, health permitting.

Naughty. LOL. I get it. I write and love using the Kindle option for my books. They get exposure from all over the world and it's very convenient since I stay at home.
I think people--like us--can write with a certain strong passion because we've suffered through more. I draw from my life sometimes and use it for my books.
I hope you're writing goes the way you want it.
I recently reviewed a 'norty' novel for GoodReads. '50 Shades'. I couldn't finish it. Absolutely the worst book ever with the wrong portrayal of the BDSM world. I don't know if you've read it. It's a love it or hate it book.
I hope your health keeps improving so you can do what you love.

Caveat with the powder - it erodes your tooth enamel. I had 2 cavities my first visit after starting it, and I have decent oral hygiene. Honest! Anyhoo, dentist recommended drinking with a straw and brushing teeth immediately afterward. No more cavities after taking those precautions. Good luck, and keep writing. I enjoy a good paranormal romance on my Kindle from time to time!

You could try questran, or my doctor gave me cholestipol, its pills instead of powder, it works great for me It will probably give you some of your life back!

I just got my Questran today. It's the powder because we thought it would work better. The pills might not work fully before it leaves on out. I finished my sequel to my vampire paranormal book. I'm working on another one containing sexy werewolves. I'm almost finished but I'm taking a break until I feel better.
I'm drinking through a straw. I have to chase it with juice because the sandy stuff gets caught in my throat. So far, I've only been to the bathroom once in 6 hours. My skin feels better already. It's worth the sandy grit.
Thanks, guys.

If your supermarket has the Bolthouse juice line... Or similar juice/smoothie option, great to add a little and you barely notice the grit. My faves are Amazing Mango and Green Goodness (looks gross, tastes mainly like pineapple juice and nice and THICK.)

I'll look for Bolthouse brand when I go back to the store. The mango sounds good. The only effect I feel from Questran is nausea. My appetite comes and goes. But the great thing is that none of my BM's burn any more. It feels awesome. Maybe it will pass.

No burn anymore is awesome! Congratulations!

I just hope the nausea is temporary. I can eat a few bites of food but not burning is more important.

Stacy36 said:

Last December, I finally got the ileostomy takedown. But, I am having just as much trouble now than with the bag. I don't have a colon any more. I am working with a rectum and small intestines(J-pouch). I have even had 6 inches of my small intestines removed from Crohn's. My problem is chronic diarrhea. 90% of the time, it burns like fire or like hot acid is coming out. The color is mostly yellowish-green. I take psyllium husks in pill form, immodium, lomotil and eat a lot of binding foods. But, it rarely works. I've only have 1 formed BM. They all float but I'm on a very low fat diet. I don't eat oil at all because I can't digest it. I am running to the bathroom constantly. I'm so tired, I sleep for over half a day. I have to wear diapers to bed and I go through so much Calmoseptine. And that stuff is expensive. I don't go out at all. I have to force myself to shop for food. I have lost over 20 lbs. in a month's time. That doesn't bother me because I have hypothyroidism and have been on tons of Prednisone. But, I feel like I'm starving but I can't eat much of anything.
Does anyone know if Questran will help with the diarrhea and the severe burning BM's? I hear that a low dose codeine helps as well.
I don't know how much longer I can live in this torment. I have talked to a doctor and they say I am a candidate for the BCIR procedure. I can't go back to an external bag. I'm severely allergic to tape and adhesives. It eats away at my skin.
Can someone help me out? Should I call my doctor and ask about Questran and codeine?
Thanks for your help.

Click to expand...

Questran didn't help me with diarrhea post-op. the only thing that helps so far is immodium

Experiment with when taking it, maybe will help with nausea? Are you taking it once or twice a day?

I take one scoop a day. I think I might need 1/2 a scoop before bed, as well.
The Immodium helps but without Questran, the BM's burn like fire. Now, they don't any more. I find that my diarrhea has not been as frequent and have some bulk. I don't find myself running to the bathroom either. The burning was the worst thing about it. I'm fine with multiple BM's as long as it doesn't feel like I'm pooing acid.

I had to do 3 packets a day but it didn't help. I'd be open to trying again.

I take one scoop a day but when I first got my take down, I was doing three times a day, I dont know why they just dont make that a standard script after the takedown as that burning hurt like hell and they KNOW its going to happen,. I was so pissed at my GI for making go through that.

Well, guys, the nausea has passed but the diarrhea is back. It burns just a little. It worked for about a week, I guess. I have to still take large amounts of Immodium. My GI said that if this didn't work, I would have to try something stronger like Opium. I've tried it before when I was connected over 6 years ago. It worked but I was in a flare so I couldn't keep taking it. Only 1 pharmacy has it. I'll have to call my doctor tomorrow and see. If that doesn't work, I'll have to have the bag back. If that is the case, I'm getting the BCIR, so I won't need an external bag and I won't be running to the bathroom 20 times a day. Ugh, does it ever end?

I understand how you feel stacy. can i ask about the BCIR? not sure what that is. good luck though.

Spooky1,
The bcir seems like the best solution for me. It's an internal bag the doctors fashion from your intestines. Eventually, as time goes on, it will grow and can hold up to a quart. You just have to wear a patch over the buttonhole opening in your stomach. Unlike with the external bag, you don't have to get to the bathroom before it explodes. You can actually 'hold it' until you can get to a restroom. You empty with a cathedar, which you will not feel.
Go to www.BCIRostomy.com for a more thorough explanation. You can talk to Susan Kay, the R.N. I am going to get my GI doctors to fill out the medical information requirements. They only do this procedure in Florida as far as I know. I live in Alabama so it isn't far for me to get there.
The doctor wants me to try at least one more thing to see if it helps. Paregoric. If not, I will see about the BCIR. I can't live like this and I can't live with a bag because of the allergic reaction to the tape.
Hope the info helps.

I have tried Questran, Welchol, and generic Questran powder. The best thing by far for that burning acid diarrhea has been Colestipol (Colestid). I was prescribed four big pills and I actually became constipated which was so surprising after years of bile acid diarrhea. I take two, now, and it really works. I would definitely ask your doctor if you could try it. Lomotil helps me, too. It's better than Imodium (for me). I hope you find some long-term relief soon!!

Sybil,
Thanks for the advice. My bowels are strange. Pills don't work well for me.
When I went to see my GI surgeon, he had prescribed the Questran, he also told me that if this doesn't work then we can try something stronger like paregoric. I gave the Questran a chance. My BM's don't really burn but the frequency is about the same. It only gets a little better when I take large amounts of Immodium. Lomotil actually didn't work.
My GI told me to call him if the Questran didn't work. I called him today and left a message and reminded him that he said I could try the paregoric next. His nurse called me back and she told me that he said there was nothing he could do and there was no stronger medicine to give me. She said that I need to go to a GI doctor and talk to him because it's my Crohn's coming back. What a crock!!!!
Ever since I've been seeing this GI surgeon, he always made it a point that my Crohn's will come back once I'm reattached. Every appointment I've had, he reminds me. I don't want to hear that. I have not taken any medication for CD for 4 years and I've been 4 years in remission. Every drug I've tried never put me into remission. Once I stopped, so did the CD.
Well, that just sounded fishy to me. He was the surgeon who did an unnecessary surgery before the ileostomy take down. Now, he refuses to help me get my diarrhea under control. It almost feels like he wants me to get fed up with the diarrhea so I will want the bag back.(He would make more money doing another surgery than writing a prescription). He even told me at one appointment that I might want the bag back. I said I didn't want it back. What? Is he trying to prove me wrong? HA! It's all about the money, isn't it? Greed and no compassion for patients. How come he could help me with the paregoric last week but today, he had no idea about anything stronger? As long as it's not them, right? I've had CD for over 15 years. I know what a flare or a relapse feels like. I wake up in the morning and my stomach growls with hunger. If my CD was back, that would be the first to go. My stomach no longer growls and I'd be in the bed most of the day. I can shop, run errands and clean. I don't eat much but it's not because of the so-called relapse. I'm just scared that some foods will keep me in the bathroom.
I'll go to the GI doctor but I will not agree to any Crohn's medication. Maybe he can give me the prescription for the paregoric. If not, I'll get my forms filled out and go to another doctor.
I think my GI surgeon is actually afraid the paregoric might work and I won't need his services again. Isn't that the point? I'm tired of doctors and their greedy ways. I managed to stay in remission without meds, I managed to get reattached without meds. I will be able to slow my BM's down, eventually.
UGH, I'm frustrated. But, I'm going to relax and watch some good t.v. I don't want to stress out. That won't help the IBD.
Ok. Rant over.

I had my ileum removed and started to have bile Acid Diarrhea and I know that feeling of burning!!!! OMG I couldn't stand it and I dreaded going to the bathroom but I ahd to go 15-20 times a day because of it. Then my GI doctor gave me a scipt for Questran and It has been my best friend for a long time now. (about 8months now) I mix it with lots of things. mostly with my crystal light drinks and it get's rid of any bad taste. the first batch I got was with citrus flavor and I hated it. Now I kind of have to balance out how often I use it because sometimes I can get constipated with it. I find that with fatty meals it helps me more but that's because I don't have a gallbladder. I however have been staying away from fatty foods and thus have to drink the questran more often. I haven't tried anything else as this really has helped me out a lot. to the point I have now an average of 5-6 BMs a day. and mostly no burn. if it starts to burn I will drink more questran, and so forth. kind of a balancing act, but with everything, everyone responds to medications differently, I sincerely hope you can get your condition under control. have a great day!

Stacy,

I don't want to sound negative, but my grandfather had UC and he had is entire colon removed and got the J-pouch. He had is his pouch for about 12 years but it got really infected and eventually he had to get it removed and get the bag. he really didn't want the bag which is why he went for the J-pouch to begin with because it was a pride thing but it almost killed him.

He also had a huge Diarrhea problem. The thing is, you will pretty much always have diarrhea because you don't have large intestines to absorb the water in your poop and this is why your having this diarrhea. sure some pills can help form some solid poop but never completely. My grandfather never had much good old only solid poop. eventually, he couldn't take it anymore and now he has the bag and he is getting used to it. I really hope that things will go your way but you have to remember, they are the experts(at least you hope) if you don't feel so try to find another GI doctor to review your file and see what his opinion is. I am lucky that I have a good GI doctor that really takes the time to make sure I understand what's going on and what he thinks and he listens to me and we work together to get a good plan of attack. Which I am dreading when I have to move away from here.

Thanks, guys. The Questran helps the burning but I still go to the bathroom. It's just that the doctor said we would try the paregoric. Later, when I called him, he said that there was nothing he could do because he didn't know about anything stronger. That was a lie. Why act like he had no idea about the paregoric when he suggested it? I'll go the the other GI. But, will NOT have an external bag. I'm extremely allergic. He eats the skin off my belly. I will find a doctor. I think I've found one in Florida. He does the BCIR procedures and thinks I'm a good candidate since the way I'm living now is too much and living with a bag is impossible. We'll see. I refuse to take any CD medication. I feel too good without them.