Stomach pain bam

[Netbet22]

Got diagnosed with bile acid malabsorption over a year ago terrible pain before and after bowel movements that lasts a good few hours seeing a different doctor at my surgery he said he could be the bile salts aggravating my colon so i have to up the colesevelam to 2 a day instead of 1 if that dont help maybe considered for a ct or mri to if something else going on , anyone else with bam get this sort of pain above belly button to right rib had to do stoole sample waiting for results to test for immflamation , anyone else with bam had other things diagnosed like ibd colit stuff like that any help as sick of trying to get to the bottom of whats going on

[Shepherd777]

What is colesevelam?

[Netbet22 in reply to Shepherd777]

Its a bile acid sequence its binders the bile salts together in your intestines something like that it does

[Sarah090174]

Hiya, my consultant originally thought I had bile acid malabsorption but the only pain I had was where my appendix is which I have never got to the route of. I eventually got diagnosed with inflammatory bowel disease as my calprotectin is always raised and I have a type of colitis which doesn’t show up on the colonoscopy. Have you been checked for gall stones as these can be painful although just depends on what you eat and not after a bowel movement. As you have BAM you may have other issues with your gall bladder which may need checking with a scan. I think a CT Scan is better for gall stones. Hope you get sorted and start to feel better soon

[Netbet22 in reply to Sarah090174]

Hi got my gallbladder out bout 10 year ago and had ultrasound last sept no stones found just want to get to the botton of the wats causing the pain been telling docs for years something not right but they just putting it down to my bam and ibs , so just going to keep on at them to i get a proper answers

[Sarah090174 in reply to Netbet22]

Hiya, I would definately keep pushing your doctor to get some answers. It may be that a colonoscopy could be a way forward just to check the large bowel and obviously the scans would be a good idea. I was on colevrslam for a while which helped me but then I had to stop it as it adversely affected me. It did stop my diahorrea though for a short while. Anyway I hope you get some answers and your feeling better soon

[Netbet22 in reply to Sarah090174]

If u dont mind me asking how did the colesevelam affect you as it really consipates me thats just with 1 tablet a day

[Sarah090174 in reply to Netbet22]

Well I had the sachets, twice a day, it stopped the diahorrea and helped me to form normal stools for around 6-7 months. After this my stools started to go mushy, soft and loose for around 3 months so I was advised to come off it. I was then started on steroids for 2 months as I went into a flare and had awful diahorrea for a week to 10 days. I have just finished my steroids and my tummy is feeling a little topsy turvy again, so am waiting to see how I get on. I have only had about two bouts of constipation whilst on steroids but never on the colesevlam. I have unfortunately not really formed proper stools since April 2022 and even now they can be formed but extremely soft and messy. I unfortunately don’t have an issue with constipation but do with diahorrea. Hope you get sorted, I have a very long and complicated history before being diagnosed inflammatory bowel disease and slight IBS too. I also have other multiple health conditions too and take lots of medication which usually would constipate anyone but not me. Take care of yourself and good luck

[jbrking]

Gallbladder removal is a common cause of bam. I still have mine but still have bam. I take 4 colesevelam a day. The aim with binders is to stop going to the toilet with diarrhoea multiple times a day, to just a normal stool. How long have you been on them? I ask because it takes a few months for your body to get used to them. I had quite a lot of palm for a few months. I still get some pain now. You can still have pain in the gb area even after removal, it depends how much of the bile duct they removed, or you could have stones in the pancreatic duct. Obviously any pain should always be discussed with GP. I still get pain when I eat and before/after a bowel movement, sometimes takes me hours to get to sleep cos I’m in pain. I’m sort of used to it!

[Netbet22]

I have been on the colesevelam for over a year now was taking up to 3 a day then gastroenterologist said put them down to 1 a day as was getting really bad constipation even the taking the 1 a day still bunges me up i do feel better since i have been taking them but its the pain in upper stomach above belly buttom that am trying to get get docs to figure out wat is causing it

[DJK99]

Oh my xxx. Yes! Thanks so much for posting this Netbet22! I need help with this as the gastro's whether private, NHS or nutritionists, or dieticians.. they don't know what\'s going on. I do have an umbilical hernia too (from 40yrs ago - I'm tiny and always was, so not due to too much weight etc.. it's due to connective tissue disease sjogrens and lupus.. so my conn tissue just er, doesn't like any kind of er, stretching, force.. and it popped out due to too much exertion as a youngster..!).

So my issues generally start with a burning, radiating feeling in my stomach or bowels or both and then radiates to the whole GI tract.. however not too bad with burning stuff ie bile.. only rarely does that come up my wind pipe.. I have an excellent diet and am very hydrated..however my Sjogrens disease means I am permanently dehydrated.. so must drink 3-5litres a day - and we should all have at least 2.5 litres a day just for normal health... if anyone isn't - this is a game changer in so many ways, even how it can make us look more glowing..! I only eat whole foods and veg, fruit, clean meats, fish and nuts and seeds, bone broth.. all organic and as healthy as I can find.. as been going through hell since 7yrs old. But since 5yrs ago in the night... I started to get woken up with this bloating (but bloated all the time actually) and then the couple of hours awful burning/griping/wind and more bloating and sometimes vomiting, but only water coming up as no food in my stomach by then - either 6-8hrs after eating... or even 12hrs.. it doesn't seem to be linked to food...as I've tried to eliminate things and no change.. although the nutritionist thinks it must be. I have severe pancreatic insufficiency (finally diagnosed a year ago!) - prob since birth.. as was always vomiting oil after fish and chips as a very young child.. or anything too rich.. so that was all cut out.. and I follow the Fodmap diet after the feacal calprotectin and feral elastase tests showed pancreatitis and IBS.. I am on Macrogol (best thing ever after 60yrs of constipation) and been on enteric coated Bisacodyl laxative too, for a decade.. no more Fibogel as that was the worst in a bowel with no water (Sjogrens... all about severe dehydration and inflammation).. was like pushing a boulder around my guts... should never have been prescribed apparently..

So - if it starts at your belly button too... that's interesting... you don't have a hernia there do you? And what about your kidney?? Look at a diagram of the body and see what organs are in the area that you feel the pain... My right kidney is up the spout (another since birth thang) with hydronephrosis and Stage 3 CKD (declined the stent as I'm not doing well with a lot of other horrid diseases)- have they done any kidney tests?? Your EGFR for instance?? And all your liver and kidney tests?? Do you have access to your tests and all medical letters etc on either Patient Access, Systmonline or Patientsknowbest? You can sign up on the latter yourself... but the first two you'll need to get the form from GP reception and fill it all in then they give you the password... If you have the mother load of diagnoses like me, you need to keep an eye on it all.. and even if you don't.. It's so useful.... to see everything about yourself and then you can be a better advocate for yourself.. Should be suggested to everyone I think.. but the gp surgeries know that it can mean they'll get expert patients as a result.. as you can know your issues better and google the medical paper sites for further info.... Just saying.

No one has suggested bile acid malabsorption to me.. but I am going to another gastro review on 7th June so will suggest... I am so wanting to sort this out as it really does ruin my nights and days as a result, as I can see is the same for you.. so sorry you're going through this hell.

The meds you mention is for those with cholesterol problems - is that you? If you need to be on them - as I presume you do as prescribed - and you are getting constipated then ask about Macrogol which is just a sachet into a glass of water.. it draws water into the bowel so it can all move round nicely..and drink water all day btw, as without it you'll get bunged up no matter who you are.. the bowel needs water to function or it all gets stuck and then takes forever to move around.. invariable as a large dry bulk or pellets! Not nice... could it be that do you think?? It won't be helping.. and if you have dysmotility too (as do I) then some laxatives will help at night.. after the macrogol sachet.. Wonderful combination for anyone with constipation - but a diet free of white bread and white rice, fast food rubbish.. and full of wholemeal( or brown sourdough bread if anti wheat) and lots of veg and fruit.. batter free meats and fish, seeds and good grains, potatoes with the skins on all that stuff.. a life changer.

Could you please post what the tests are they do, and what they come back with? Would love to see how you get on... so helpful.

Sorry have rambled.. but after 61yrs of all this, I'm a fighter and want to feel better - and for everyone else to also!

All the best

D

[Netbet22 in reply to DJK99]

Hi dont think i have a hernia but a ultra sound did show up diastasis recti 3cm gap in muscles wonder if that has something to do with the pain i get , i do take laxido for constipation it works wonders , jeez you have been through a lot over the years i am hoping the docs do more test as havnt had any investigation since 2018 wich showed problematic and symptomatic ibs then jan 2023 got the diagnosises of bile acid malabsorption

[DJK99 in reply to Netbet22]

Thanks for replying to my rather long blurb... Yes, Laxido is another brand name for the drug Macrogol (a mix of sodium chloride (salt), potassium chloride and sodium bicarbonate (known as electrolytes) that draw water into the bowel... miracle!). I wished I been prescribed that sooner - although I think my GP suggested it about 5yrs ago (only!) but I thought it was for the elderly and just wanted pills instead of drinking stuff.. V glad I relented after a private gastro (I HAD to fork out for as was getting no face to face appts with NHS at that time) recommended it.. Has changed my life.. I have a rectal prolapse due to decades of v bad constipation and then after an op at 38 it all got blocked into the rectum and I had to use a suppository - NEVER again... oh dear.. poor bot took some time to recover from that I can tell you ;). Well that 3cm gap will definitely not be helping with the pain.. did you find out what the symptoms are for that specifically? You could Google the med papers and all sorts if not. with the diagnosis of the BAM, did they do the double scan thing? A SeHCAT scan?

Thanks so much for all this.

[Netbet22 in reply to DJK99]

Yes had the sehcat scan done of years of them saying it was my ibs came as severe bam , according to the docs the weak muscles diastasis recti wouldn't cause any problems but not to sure though

[DJK99 in reply to Netbet22]

Oh good grief... that's just awful. I know... same here with life long health problems. Hey ho. Not sure Iv'e helped with any of my previous first email.. but I would like to wish you the best help and please could you update this post with any news as the occur? Would be so helpful. Thanks

[Netbet22 in reply to DJK99]

Thanks for the advice will people updated

[DJK99]

Question to everyone on here please... I wonder - do any other you also have constipation? Or have you ever (without taking the meds you are now on?). Thanks so much. D

[Netbet22 in reply to DJK99]

Constipation to mushy not every day is the same

[Netbet22]

Just a quick update stoole sample for colprotin came back as 112 does that mean they is inflammation present any advice

[DJK99 in reply to Netbet22]

Hi Netbet22 - I was just looking to write back to you about my Gastro appt today.. and noticed your query here... well my Calprotectin is 65 (which is fine he said.. "just" IBS along with my symptoms) and we discussed this - the Gastro said anything below 100 is OK - so I am guessing you have inflammation or something going on. Have you Googled any medical papers on proper medical sites? I'll have a look : found this: ncbi.nlm.nih.gov/pmc/articl... It does say (specifically if you do the "find" button on your computer with "112" that one study said that was OK... but I don't think so). I'm sure you've had some response from your Gastro by now anyway?

Also - I wanted to thank you for your initial post as I discussed with my gastro today and he is putting me forward for the BAM SeCAT - he made it sound like his idea by the end.. as he said not relevant at first when I said I need this! But he is the wonderful gastro who recommended I have the check for Pancreatic Insufficiency (a year ago, at my age 60... so I've had it all my life I know as never been able to eat oily, greasy foods without throwing up the oil and being in agony.. since a toddler!) so I am a huge fan of him. Anyone with Sjogrens reading this - make sure you tell your Gastro you have it (Sjogrens) as it can really mess with all our GI tract and related organs. Anyway, he's putting me for urgent BAM scan so will be very interesting to see.. If you'd not said you get constipation too sometimes, then I might not have said anything to him.

Hoping you get the help you need. I am really changing my diet to even more specific stuff... I read a great book called "Toxic Healthfoods" which is all about the really very high (and can cause hugely awful symptoms in the GI tract) Oxylate levels in certain healthy foods... My diet is so healthy it's FULL of Oxylate! Silly things like potatoes, chia seeds, unripe avocados, kiwis (had two of an evening for years as help you sleep apparently!), spinach, chocolate (even high quality stuff), rhubarb, TEA(!), carrots, BLACK PEPPER... all sorts of stuff I have lots of, well, it's not great and my symptoms might be eased by changing to other options.. It might help, it's by Sally Norton MPH.

Please keep us updated, and thanks again for being here!

D