IBS followed by gallbladder removal followed by a mystery condition. Help appreciated! I’m new here

[GwinBlue]

I wonder if anyone has similar experience or come across other threads on what I’m experiencing? I’d appreciate any advice as my GP practice is proving unhelpful! My story is:

- I was told I probably had IBS (d) by my GP in approx 2018/19. I just lived with it as an inconvenience and never found out what food upsets me

- In late 2021 I ended up being admitted to hospital with severe jaundice and dehydration as I’d suddenly got a gallstone stuck in my bile duct and needed an ERCP (I had no awareness of my gallstones up until this point. I’m very slim, active, very low cholesterol, 43 years old)

- I then had my gallbladder urgently removed (privately as the NHS wait was too long) in Jan 2022. The consultant said I could eat whatever I liked, no dietary advice was given

- Since then, my side effects have been getting worse. Foods I could eat two months after surgery I could no longer eat five months after surgery. Eg I suddenly reacted badly to chips and had burning across my stomach area and diarrhoea for a week. My GP said this could be bile dump

- Since Oct 22, I’ve developed a mystery illness which I’m guessing is all related to the above. The only way I can describe it is like my body thinks I’ve been starved and am going to faint - ringing ears, shakiness, no energy. This is on and off - some days are worse than others and I can’t work out why. If it’s really bad then my heart races when I walk and my tummy rumbles five mins after a big dinner. These past few days have been bad after I felt sick and had burning across my stomach after a tuna mayo jacket potato..

- obviously having diarrhoea makes this worse, as my body then thinks I’m even hungrier. I don’t know what is IBS-d and what is diarrhoea caused by not having a gallbladder

The GP has tested me for anaemia, diabetes, blood sugar and other standard tests but is not coming up with any other next steps.

I don’t know what to push with them next (as it’s me going along saying “could it be this?”). I feel like my body’s communication system is messed up somehow, but it’s driving me insane. I’m scared to go out in case I feel rubbish. The GP won’t even refer me to a dietitian as “I’m not a frail 90 year old and they’re the only ones eligible to be referred”. Any help would be much appreciated. Apologies this is such a long post! 😆

[Maureen1958]

Hi GwinBlue, you may like to take a look at the link below.

gutscharity.org.uk/advice-a...

You may have BAM (Bile Acid Malabsorption). It can sometimes happen after the gallbladder has been removed.

Good Luck.

Maureen

[GwinBlue in reply to Maureen1958]

thanks!

[Gold22]

I would go back and see the surgeon who did the gallbladder op because this is could be related to the surgery or get a private apt with a gastroenterologist, or both

[meadfoot]

My life has been a living hell since I had my gallbladder removed exactly five years ago. Ask to be tested for bile acid malabsorption, BAM, it could be your issue.

Sadly it wasnt mine so I continue in excruciating daily torso pain which has ruined my life. After three years diarrhoea I then changed to chronic constipation out of the blue no tests can tell me why. The level of pain I am constantly in is unsustainable and yet here it is day in day out. I am consumed with it.

Gastroenterology are lost for an answer. I am about to consult a neurogastroenterologist privately in London to see if he can help me. The brain/gut connectiom is well known so a gastroenterologist specialising in the nerves and muscles of the gut is my only hope. When I asked a gastroenterologist about bowel issues post gall bladder removal the answer was oh it often happens you will find a way to live with it, thanks a lot.

I wish you well fight for some help but I think a BAM test may yield some answers for you. Best wishes.

[Pollyboo]

Hi, yes I agree with Maureen. Since my gallbladder removal I have had to take a sachet of cholestyramine every day. This helps a lot but is not a cure all.I was given this med by my GP because I did not have a gallbladder but have not been tested for BAM.

I had my gallbladder removed privately also, in hindsite would I do this again, maybe not. There was not much followup after the op.

I have sometimes felt faint and shakey too, think this is all down to this IBS and nerves of the brain to the stomach.

Sending you best wishes.

Pollyboo

[Iesgobdafydd]

“I’m not a frail 90 year old and they’re the only ones eligible to be referred” - I would double check the factual accuracy of that if you're able to, that is if you would like to see a dietitian, just in case your GP is misinformed. I know access to some health things is a postal code lottery but I live in Surrey, I'm in my 50s and referral to a dietitian for advice was one of the first things my GP did for me after eliminating other possibilities and diagnosing IBS.

I thought it was a useful referral - the dietitian got me to try a low-FODMAP diet, which helps a lot of IBS sufferers, and to return regularly and report some of the meals I'd been eating, so she could check I was still getting a balanced diet. She monitored my weight (and told me to eat more even if it was desserts and the like, which I wasn't too impressed with as advice, I wasn't that thin). She gave me a booklet explaining the low FODMAP diet, and why it worked, and good (but not comprehensive) lists of which foods were high in each type of FODMAP, which I used a lot.

She also gave me advice on probiotics to try, and a code for a discount on one of them who were running a promotion. She said there were a couple of other special diets they could supervise if I wanted to try something different afterwards and gave me a leaflet explaining them, the only one that sticks in my head was called Few Foods because I decided to try something similar later (unsupervised - I thought I knew enough about nutrition to avoid killing myself) .

[OrangeBird in reply to Iesgobdafydd]

Could you let us know which probiotics they recommended? Did they recommend you take them whilst doing the low FODMAP diet or was it afterwards?

[Iesgobdafydd in reply to OrangeBird]

The one she had the discount for and I tried was Symprove, I'm afraid I can't remember the name of the other one she thought highly of which I didn't try. I also can't remember if she had a recommendation about when to take them, I know I had a strong personal preference for not altering too many things at once so that if something helped I would know what it was that helped, and what I actually did was stay on low FODMAP for a long time even though I'm not sure how much it was helping, but start on Symprove in addition after I'd been on the low FODMAP long enough to see it wasn't going to be a miracle cure for me.

[Sparrow58]

I have also had my gallbladder removed, I went privately too. They also told me I can eat as before. I had IBS before but it was really bad afterwards. I can not eat fatty foods, Anything that is high in fat upsets my stomach. My stomach makes a lot of rumbling noises if I have had a bit too much fat, and I also get bad IBS D. The other day it was salted nuts. I ate about 3 before and I was ok, then i had a handful a few days later, Not good the morning after and my stomach was making awful noises the night before. If your poo is more orange in colour then that is the fat, so I heard. (sorry if this is too much details) There seems to be quite a few IBS people who have had there gallbladder removed. I was glad to get rid of the pain of gallstones but hate what it has done to my IBS.

[OrangeBird in reply to Sparrow58]

I hadn't heard about the orange colour signifying fats, thank you for that. Hope your symptoms improve.

[Sparrow58 in reply to OrangeBird]

Thank you x

[GwinBlue]

thanks everyone for your really helpful advice! X

[Hidden]

Hi there just a thought, it could possibly be bile leaking from the clips they use in the op , sometimes they come loose, may be worth looking into . Take care x

[ULCERAPROCTIwillDie]

I've suffered since 2008 after having my gallbladder removed. They never educated me about anything. I've ordered Tudca. It'll help regulate the bile salts that you're deficient of. Highly recommend watch gallbladder removal videos from Dr.Berg's YouTube channel. He is amazing & has been more help to me in the last 15 yrs than my doctors have ever even cared to be. God speed.

[ULCERAPROCTIwillDie]

Without a gallbladder our body cannot breakdown the bad fats, cannot absorb the good fats, cannot break down sugars..I've developed chronic/reaccuring Hypocalemia due to my gallbladder removal. I'm now anemic & reaccuring low platelet count because I have both Ulcerative colitis & Ulcerative proctitis so I have been bleeding rectally with every single bowel movement( often times only passing blood & mucus) since 2005 & also have very easy friability of my colon & rectum when I have colonoscopy. My normal poop was the burnt orange/yellowish frothy acid watery bile poop everyday but that has drastically changed since 2018 to chronic constipation to the last year 1/2 to now constipated so bad I'm backed up, up to almost three weeks of ly to have the most excruciating pain in my lower top quadrant right in between where my ribs meet my hip bone with the literal most excruciating bowel movement. Being a mix of bolder type poop to acid bike wherever poop with everything in between that plus of course the blood & mucus. I'm actually on the toilet atm passing one of these excruciating poops. My iron drops drastically in hours. My potassium as well. I become so frail & cold & fatigued. I got my tudca in the mail today. I pray it gets me even a quarter back to normal. I'm so exhausted & always I'm constant pain & fatigue. So you can guess Ulcerative is a autoimmune disorder so i have everysingle autoimmune response & symptom thatbvomes with it. I have no choice to give up as I am a 34yr old mom of a 2 & 4yr old. I have no blood relatives in this state & my husband is amazing & has stepped up but I can tell it's taking a toll on him as well😔

[Finaldiagnosis2022 in reply to ULCERAPROCTIwillDie]

you say you pass mucous and blood almost every time. That’s me too if immflaring with my ibs. Even on my “good days” I pass this. Even bloody gas at times. Sometimes I strain if constipated but try not to. Think I’ve got piles also which may be prolapsed just inside. Have severe ibs mixed that settled back to controllable with low FODMAP diet but on occasion still get flares that are bad depending my diet. Now what’s interesting about what you say is the blood n mucous part. I am awaiting gallbladder removal and I def don’t want this to get worse. Did I understand yours got worse after removal? Thanks for any help advice offered.

[ULCERAPROCTIwillDie]

Mine absolutely go worse after gallbladder removed but it been the last few years absolute drastic & fast changes in my B.Ms & now with every single B.M i have it has both blood & mucus mixed & also blood clots & the color of blood comes in all colors. If you can get the gallstones blastedtry got that. The gallbladder is waaayyy more needed for so many things then the doctors let on. I'm now having complications so bad I've came close to dying 3x already this year. I went from 170 to 155lbs in 3 months & I have hypoglycemia & pretty bad anemia & as of late now low calcium. Diet & intermittent fasting is huge but also taking THE NATURAL vitamins...potassium is the most important Electrolytes so keeping that good is important it help lu Tecate the colon. Our food distribution places know damn well the food they're giving us is poison. These synthetics. Dextrose high fructose corn syrup...milk.. grains