has anyone taken Colesevelam hydrochloride 625 mg for BAM and found that it has made their bowel symptoms 100x worse? I am in agony having violent toilet issues, waking me in the night and doubled over all day I feel dehydrated no matter how much I drink and I had stabbing upper right quadrant pain since taking these pills and I’m worried they are making me worse. I am going to stop them tomorrow and see if things calm down but I’m in agony and really worried I don’t want to be stuck like this as I was bad enough already I’m so upset. Can anyone help? I didn’t think this was a side effect so I don’t understand.
Any advice or previous experiences would be helpful thank you so much xx
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MyStar86
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Yes to all of the above you asked I had my gallbladder previously removed and suffered ever since. Diagnosed with Crohn’s disease 2015, endometriosis, osteoporosis, sphincter of oddi dysfunction, BAM. I’ve had multiple surgeries for endometriosis and to the bowel and I’ve had a total hysterectomy so yes my body is broken and I was hoping these pills would help as I had the powder
Colestyramine previously but that made my stomach swell up and I couldn’t continue that’s why I tried this new medication but it’s made my bowels even worse hence why I asked for help qnd others experiences on here!!!!
I don't have BAM but know a bit about it. I would stop them if they are making you dehydrated, it doesn't sound good. I would get in touch with your doctor when they open on Monday.
thanks I will do and I’m seeing my gastro on Friday so I’m hoping he can help as I couldn’t get a gp app till the 15th March with my gp and to no honest they wee useless on bowel issues and would refer me to the gastro as it was him that prescribed them. I feel awful on them my insides are burning and feels like I’ve been torn apart 😞 I hate taking meds as it is now this has really scared me so I feel like my body is unfixable. Will see what the gastro says next week and I can try the gp but I will stop the meds anyway as there is zero chance of me taking another one after today it’s broken me I was trying to push through it and hope it would get better but it’s just been getting worse. Thanks for helping
I am sorry you are feeling bad like this. I hope when you stop taking it your tummy will settle and you'll feel a bit better. For now, it might help the dehydration if you can have just water with a pinch of salt and some sugar or honey, then if you get hungry just eat something very plain and bland like dry white toast and a boiled egg. Watch it with the electrolyte drinks though as some of them contain artificial sweeteners which can aggravate the gut and diarrhea. I hope you will have a better day tomorrow.
So sorry to hear you are suffering so badly. Honestly until we have gastric issues we can only imagine how bad it can be. Once we are in the horrid ‘gastric issue club’ we understand completely what each other is going through. Its hoorendous. I feel for you and hope you can find some answers.
Clearly this med isnt right for you if you feel so bad with it and I hope it clears your system quickly. Good luck with your gastro app next Friday. Thinking of you and hope tomorrow is a better day. Best wishes.
I was given colestyramine because a radiographer doing an ultrasound scan said my gallbladder was full of bile acid and asked if I had fasted for the ultrasound which I hadn't. I said I didn't know I had to fast and she said no I didn't have to. So because she said my gallbladder was full of liver bile acid I went and checked Dr GOOGLE and of course read that the bile acid could be going into the bowels. So I went to see my GP and because I was convinced I had bile acid in my bowels as per GOOGLE I asked about colestyramine and my GP gave it to me. He did ask if I had diarrhoea and I said now and again but mostly had hard stools.I took the colestyramine but it didn't help with the pain and I believe it made things worse.
I now have non alcoholic fatty liver and its been progressing and now I'm told it has tipped over into cirrhosis so now I have to lose weight to preserve what healthy liver I have.
I cant seem to lose weight and now I'm not eligible for trials for liver disease as I had a heart attack three years ago and they also found I had pancreatic insufficiency so have to take pigs pancreatic enzymes with all my meals and with any drinks except water and fruit juice.
I wonder if lots of these problems we have especially with pain in the right quadrant could actually be problems in the pancreas or live or both causing gut problems that cause pain. The last camera I had showed i had duodenitis with patchy red erythema thats usually caused by helicobacter Pylori except to have it in the duodenum it would be in your stomach as gastritis which I didn't have.
So looking more into it I seen duodenitis can be caused by liver bile duct problems but because I have had so many tests over the years my consultants keep now fobbing me off even when they find small problems here and there.
In nine years I have been told I have gastritis most times I had a camera and once was told I has an esophageal ulcer which healed and then I was told I had helicobacter Pylori which I received eradication therapy of two antibiotics and ppi lansoprazole which I believe gave me ibs. I then went to see the most fantastic consultant on the planet called Professor Peter Whorewell in Manchester and was give 13 weeks of gut directed hypnotherapy which really calmed down my ibs and then another 3 weeks treatments along with self help hypnotherapy at home and my ibs completely went only to come back after another bout of gastritis and lanzoprazole or ranitidine or famotidine.
Then I had another useless consultant at southport General hospital say he believed I had a sluggish bowel and not ibs and gave me laxatives but all that did was play havoc with my bowels. Then I went to see his understudy who did some blood and stool tests who then said I had pancreatic insufficiency and needed to take pancreatic enzymes called creon 10000.
The next time I went to see him he was abrupt and basically suggested I had had too many tests which didn't really show anything major.
As far as I know things can change really quickly and these doctors obviously can't possibly know what kind of pain we go through unless they have it themselves which I find unlikely as if they experienced our pain they would be trying everything possible to help us.
Finally have a look at your stools in the toilet. If they float and or are greasy then you may have pancreatic insufficiency as well and pancreatitis can be incredibly painful and even fatal. Ask for your consultant to test for it.
Finally look up Professor Peter Whorewell. I believe he is retired now from the NHS but he has written a book and done several you tube videos. I cant say how brilliant this man is and what he doesn't know about the gut bowels etc doesnt even exist. His book explains things like dont get your gallbladder removed unless its diseased or is actually causing major problems as he found that most people having the gallbladder removed just because of ibs found that they had even worse pain after having the gallbladder removed.
If you are having lainfull stools with any kind of collestyramine drugs etc I would personally stop them for now and take a laxative and drink lots of water and go to Holland and barret and get some digestive enzymes. Hopefully your stools will loosen but be careful of taking too much laxative. If its not working for the first few days then don't worry just keep taking the same amount as if you increase the amount you could find suddenly the worst pains and diarrhoea ever.
Also avoid coffee and tea or fruit juices and dairy. Dairy especially because you have no gallbladder.
If you need to have a hot drink try decaffeinated Green tea that you can get from anywhere like tescos etc and if you really can't do without a cup of tea then get decaffeinated tea. Even decaffeinated coffee can cause you gastritis or play havoc with ibs so although its good for the liver please keep away coffee.
Dandelion tea is another good tea and while it may taste weird when you first drink it you should find it refreshing when drunk really hot. It sooths your digestive tract and relaxes you at the same time knowing its helping you
Good morning, just read your post and I feel for you. I have had IBS with loose stools for 20 yrs. I had my gallbladder removed 10 yrs ago and this made things much worse for me. I have been taking cholestyramine for the last 10yrs, yes it does make you very bloated but I only take one sachet earley evening eat my evening meal after and this seems to help.
How many colesevam tablets do you take a day. I have tried these in the past and although I took 6 tablets a day the most I think you can take they didnt do it for me either, so back to the powders for me.
Glad you have a consultants appointment in the near future see what they say and in the meantime try to stick to some safe foods. Do you take imodium this is my lifesaver when things get bad,not too much though.
Wishing you well and do let us know how you get on.
gallbladder removal is a common cause of bam. I’ve been taking colesevelam for about 5 years now. For years I didn’t think they were helping much so stopped, and then realised they actually are! Yes they dehydrate you, I have to drink at least 2-3 litres of water a day. The condition and side effects will cause that pain but it does lessen over time. How long have you been taking them? Due to other meds and advice from forums, I take 4 tablets at 6pm. Some people take at night which helps with any dashes to the toilet in the middle of the night. I still have loose motions/diarrhoea twice a day, but that’s an improvement of multiple times. I also take anything from 2-8 loperamide a day. But they don’t suit every and they’re not miracle cures. You really have to be careful with what you eat and drink. People assume they can eat what they want and take tablets. There are many foods that your body needs bile to digest - fats, leaves, skins and seeds. Keeping under 40g of fat will help. I kept a food diary for a month to figure out what I could and and couldn’t eat. Even good fats go through me. Can’t touch eggs. Oats are good. I eat toast and banana for breakfast, sandwich or soup for lunch, chicken or fish with potatoes, rice, pasta, veg for dinner. I steam veg as it’s easier to digest. Artificial sweeteners found in diet foods/fizzy drinks can cause diarrhoea and caffeine will stimulate the bowel. I can’t drink alcohol either. So, if you haven’t already, need to take a hard look at everything you’re putting in your body. I hope that helps.
thanks for the advice and it’s good to hear from someone who has bam and is taking this medication. It’s definitely not my diet I am very strict and struggle to eat at all as my body just seems to hate food, I eat porridge for breakfast, a light sandwich for lunch and dinner I eat fish with plain mash (just mashed up potatoes without skin) and carrots. This is all I hate and I only drink herbal tea and water so I don’t have anything artificial and I don’t consume any fat it’s just driving me mad I’m in agony the pills have only made me worse. I was put on 3 pills but the side effects are too much for me I’ve stopped them today and won’t be taking them again as they didn’t stop the toilet issues they just gave me more issues on top so I will wait to discuss with my gastro what to do as I have multiple conditions so it could be many things adding to my pain and problems.
I’ve just had enough feels like my body hates me anything that could possibly help me. It feels like I’m stuck in agony I can’t have a life I barely get any sleep and I’m in pain 24/7. I’ve cried a lot today already I had been doing ok but these last few days the pain has been out of this world I don’t know how to cope with it when even resting is breaking me. I have constant nausea and it’s just a horrible life 😞. Thank you for your help from someone with bam and on the medication as I thought I was going mqd but the only way to know if it will calm down is to stop the pills which is what I’m doing till I see the gastro and do whatever he suggests as I’m all out of ideas I do all the right things and still end up worse off I’ve had enough x
I used to be sick a lot and had omeprazole for a few months and it cured it! Not needed in 5 years. How long have you been taking colesevelam? As said you can take loperamide at the same time. I suppose I’ve gotten used to the pain. Although as soon as I wake in the night the first thing I feel is pain. It’s a horrible condition that people just aren’t aware of.
I’m so sorry you’re going through this. It sounds just awful. One of my best friends was put on colesevelam for chronic diarrhea after small bowel surgery. She started getting the following side effects: muscle aches, headache, sore throat, fatigue, loose stools, and stomach pain. She suspected the colesevelam, but her doctor was skeptical (of course 😠). She stopped taking the colesevelam and all symptoms abated. She was put on another round of rifaximin for SIBO and has been doing much better…so far. I hope you get the care you need and continue on a course to feeling much better.
thank you that message truly means a lot so thank you for taking the time to reply. I’m glad to hear about the side effects from some who has taken them and I hope things calm down for me as I didn’t take any today and I can’t be in this state to see my gastro as I have to travel to London which is 2 hours on the train and I’m so scared…..my mum can’t come with me this time so I don’t know how I’ll cope alone but o just pray he can help move forward as I can’t carry on in this much pain.
It's good that you feel a little bit better! I am sure you will be okay to take the train on Friday once the medicine is out of your system. I hope the Gastro doc. helps you with something that works this time.
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