Diarrhea for 6 months since surgery

Hello and thank you for reponding. No stomach pains at all. The cholesystermone is a bulking agent to help slow down the diarrea. I do taken it 3 times a day. With meals. Also a prescription anti diarreal medication. doctors have ruled out Ibs, ulcerative colitis and any other digestive diseases.??

I will start the food diary. To be honest I really have been eating whatever I want just to put some weight on. A lot of fast food etc.... But it just goes right through me.

And also start eating properly maybe a lot of chicken, fish etc...

Have you been tested for infections such as c diff, h pylori? 

Yes all test negative.

Has your doctor mentioned Bile Acid Malabsorption?  A SEHCAT scan would confirm it. 

Good suggestion Philippa, worth testing for (i was diagnosed with it early 2015). only thing is Sonji is already on cholestyramine which is one of the treatments for bile acid malabsorption, but there are 1 or 2 other treatments as like all meds, some work for some people, but not others. but definately worth testing for as if Sonji had severe bile acid malabsorption, dosage of cholestyramine may just need adjsuting to perhaps more in one go less times a day-just suggestions.  x

BAM is often overlooked by doctors so people often get their symptoms missed.  Did you have to wait a long time to get your BAM diagnosed?

No I have not been tested for that, but I can suggest it. He does have me in the cholystermine for that though. As I said it is helping a bit. Maybe if I ask instead if taking 3 times a day With my meals. Maybe I need to take 4 times a day. I know some people that can take it up to 6 times a day. I will speak to my doctor to see. My concern is my weight loss too.

I can't seem to gain it back??? I thank all of you for your help and suggestions.?

You're spot on with it often being overlooked. many people get told its ibs without being tested with a sehcat scan.  i have a history of colitis & ibs-d, & was experiencing symptoms of colitis without blood. my colonoscopy was clear, & ibs-d controlled with diet yet still getting symptoms(all back in beginning of 2015) my consultant decided to test for fructose malabsorption & bile acid malabsorption - both came back positive.  the sehcat test came through within a couple of weeks - i just had to swallow a tracer pill, then have a quick specialised scan. then go back 7days later for a 2nd scan. they can then tell if you have bile acid malabsorption & treat the condition with meds. very non-invasive simple test, & so easily treated. i think they should do it in all cases of chronic diarrea after normal colonoscopies BEFORE diagnosing ibs-d, as it is common & would relieve many peoples misery if no other conditions going on simultaneously. x

Hi Sonji, are you on the cholestyramine sachets that you mix with water? x

You could suggest a dosage change to your doctor to see if that helps more.  Maybe the diarrhoea is causing the weight loss and stress on top.

Fortunately, I have IBS C in the main.  Although, I did have short bout of loose stools which suddenly cleared up.  I noticed BAM had featured in newspapers in Britain so hopefully it will raise more awareness of the condition.

Also Sonji, I noticed soon after starting cholestyramine that i naturally lost about a stone without dieting of any kind over about 6mths, then it stabalised.  aas i knew how cholestyramine works (& i put this suggestion to my consultant who agreed the logic) its probably because this med helps to digest the fat in your diet better whereas before having the med fats aren't so well digested. they also use this med to reduce peoples cholesterol so again see the logic?  so in your case the weight loss may partly be down to being on the cholestyramine, & partly the chronic diarrea.  as you've had good tests of a colonoscopy & small bowel study (so cancer or crohns or colitis would've been seen) the weight loss is more likely to be down to what i just suggested. if you think back to when you started cholestyramine did the weight loss start around the same time....?  i am on the cholestyramine sachets: 2 sachets together morning, & 2 sachets together evening. so maybe a dose adjustment may be the key for you like less often times per day & more in one go.  its also VERY important with this med (if you're on the same sachets as me) that you take any other vits or meds either 1HR BEFORE or 4HOURS AFTER your cholestyramine or the other meds will get stuck in your system.  xx

Thank you so much for telling me about the medication factors. I did not know to wait 1 hour before or 4 hours after. I started the weight loss a little before surgery due to eating caused excruciating pain. After surgery I was able to eat normally. I eat everything now and my weight fluctuates between. 105 to 100 Pounds. I will start. Taking other meds an hour before or 4 hours later from now on. You would think the doctors or pharmacy would have told me that?? Go figure. Thank goodness for these patient. Forms to exchange experiences and give advice. Thank you.

Sonji you could try what i said too about taking 2 sachets at once then 2 later in day(in line with the other medication/vits time constraints) and see if that makes a difference to you hun.  maybe try it for a week & see if it improves...... so if you're on 4 a day for example split it into just 2doses. it was a bit of trial & error in the beginning for me to see what dose & how many a day did the trick.  x

Oh thank you. I will try that. When you say sackets are you speaking of the little packets that come in a box of 60? Right now I get a big box with sixty individual packets. So I have one packet in the morning with breakfast, one in the afternoon with lunch and one in the evening with dinner.

So would I take 2 packets in the morning and one at dinner?

I just want to make sure I understand your advice properly.

Thanks for the clarification. Also did you put weight back on while doing this treatment?

If so how long did it take before you got back to a healthy weight?

Yes

Hi Sonji, yes its the sachets of powder that you mix with water & it looks like wallpaper paste! they're called questran.  i agree with what you said (how i take mine) 2 in the morning (doesn't have to be with breakfast) & 2 in the evening, you don't have to take them at mealtimes, the most important thing is the HOUR BEFORE or 4HOURS AFTER any other meds or vits.  are you going to try it for a week & see if it improves your diarrea? (i can never spell that word!)  

i didnt put the weight back on since starting the treatment no. i was glad though as i am slighlty overweight anyway, so welcomed the weight loss myself.  i think because the meds make you process the fats in your diet more properly(ie breaking them down & eliminating them normally) this prompted the gradual weight loss. also if unproperly processed fats are going through your intestines that would exacerbate diarrea. but my weight is now stable give or take 2lbs either side often depending on "time of the month". weight stabalized about 12mths after starting treatment.

I don't eat alot of high fat foods anyway, nothing fried at home. i have found for example if on holiday & stayed in a hotel & had a cooked(probably fried) breakfast it made me feel quite sick & needed the toilet more. also occasional chip shop fish n chips makes me feel the same. so i think fried or high fat food probably makes digestive issues worse. anything i used to fry years ago eg sausages or burgers, i now cook in the oven instead, & only buy high meat content/lower saturated fat sausages or burgers which are much more agreeable with my bowels! we only have sausages or burgers about once a fortnight too.  eggs i only boil or poach now too (not fry).

xx

Oh thank you looloo43. I appreciate your advice. I will try adjusting the medication to 2 packets in am and 2 in the pm.

I will also cut out the fried foods. Now that you mention that. I do notice when I eat fried foods it makes me go to bathroom more and I don't feel good either.

I will also watch what I eat and start eating healthier.

I. Was eating high fat foods trying to put my weight back on. Like I said I dropped down to 103 pounds. When I was originally 128.

I do Hope to get back into that weight soon.

Again I thank you for your advice. Thank you so much. I will keep you posted how my adjustment of meds helps me.

Take care.? xxx

You're welcome hun. hope tweeking your doses with the cholestyramine help, do let me know & good luck.  xxx

Hello looloo43.

I thought I would keep you posted on my health journey. I have started another medication to control my diarrhea. It is called Vibersi it has helped me a lot. The cholestyrmine really was not working.so my gastro doctor swithed treatment. My weight is still low I am 100 pounds now. I just started this medication and so far so good. I hope to put some weight back on.

Again I thank you so much for your help and advice. It is much appreciated.

I hope your health journey is getting better. Keep me posted.God bless.

Hi Sonji! How funny, the last couple of days I was wondering how you were getting on with the colestyramine!! not everything suits everyone but I'm glad the doc has found you an alternative that seems to be helping you. i haven't heard of that med, i will look it up.

my gastro doc is now trying me on amitryptilline & buscopan (last 4wks so far) as my cam pill endoscopy didnt show anything except very fast transit. he has also asked a colleague consultant at another hospital for a 2nd opinion in case he's missed anything(his idea!). 2wks into the "band aid" meds he's trying me on now things are finally starting to slow down in terms of bowel movements, less diarrea & because I'm having less bowel movements the pain is reducing too. so i  am hopeful if this turns out to be a continuing pattern of improvement, i can start going back to work in the coming weeks.....

I have an appt with the 2nd opinion consultant at beginning of december to see if they can shed any more light on an actual diagnosis.

Take care hun, & maybe let us know on here in december if you are still improving on your new meds. x