Can anyone help I had my gallbladder out last Feb just over a year ago since then the pain is worse I've had stones stuck in my liver I've had 2 ercps to widen the bile duct finally I could stand the pain no more and went to a&e the doctor said what would you like me to do at this point I broke down in tears as if I could deal with the pain I wouldn't be there , I told a nurse how I was feeling and the doctor came and apologised to me I felt as if I was wasting his time . They admitted me and tried to keep my pain under control I was in hospital for 15 days in agony and nothing was found I wasn't eating and I saw my doctor Tuesday and now I'm told I'm malnourished I've tried eating tiny bits of things but the pain is too much I'd be grateful for any advice the doctor says that there are no further tests they can do also I had my bloods done after I came out of hospital and my inflammatory markers were up again this was due to trying to eat ! I'm laying here was a hot water bottle on my tummy in agony ! 🤒
Oh Natalie so sorry your going through so much! Is there anyway you can get a 2nd opinion? different hospital? It's really disgusting to be treated like that! I had a 4th opinion to get a diagnosis for my Bile Salt Malabsorbtion! If your inflammatory markers where raised then surely this should be followed up? Dont ask your doctor for help TELL him you need further investigations urgently! let me know how you get on, in the meantime just eat little and often try dairy free very bland food see if that helps love xxx
Thanks so much for your reply you feel so alone don't you when I saw my consultant he said there were no more investigations they could do 🤒🤒 I've been diagnosed with sod type 2 and bile acid malabsorption I was in hospital for 15 days they found nothing that's because I wasn't eating they didn't seem bothered about that either and now I'm malnourished 😢
Well surely they can't just leave you to get on with it! You really do need to get a 2nd opinion love please dont just take his word for it! I was told I had to put up with the Chronic diarrhea without being told why I had it and only being given Imodium! I fought for a 2nd opinion then a 3rd and then finally a 4th! At least now I have bile binders to help I can't go anywhere because of it but I fought for the diagnosis! Insist Natalie on a 2nd opinion!! xxx
I will do Hun this is getting silly all I have eaten today is a lemon yogurt and I know you can't live on that, when I was diagnosed with bile acid malabsorption I can't tolerate the medication so I just have to live with it 🤒
Hi, Natalie, sorry to learn you're going through this. I was informed by someone on this site that there is a bile acid malobsorption group on Face Book. They have lots of hints on how to deal with this disease. Did they give you cholestyramine, which is a resin that you mix with fruit juice or applesauce? You could also try taking calcium pills that are comprised of calcium carbonate. They absorb some of the bile. You take 2 before each meal. Also, you could try using psyllium powder or capsules to do the same. Best of luck, and let us know how you do!
I've tried all the medical pills I can't tolerate them I'm seeing my specialist in August so will ask then thanks for telling me about the fb group I will check it out 🤒
Hi, Natalie, good to know you're seeing a specialist. FYI, cholestyramine is a packet of powder you mix with juice or applesauce. You have to have a prescription for that one in the US. Calcium carbonate is just a calcium supplement pill that you can get over the counter. Only certain types of calcium supplements are made with calcium carbonate. Best of luck, and let us know how you do!
Hi Lynda I've tried cholestyramine I can't tolerate it they tried another tablet too that didn't work either I wasn't offered calcium 🤒
Natalie have you tried Colesevelam Bile Binder? I swear by it and I was told by my Consultant that it is now being prescribed for bile acid malabsorption, when I started to take it not many people had heard of it, might be worth a try love xx
Thanks for that I will ask my consultant when I see him I need all the help I can get 🤒
Cholestyramine is pretty nasty stuff. It works for me. I got the hint for calcium carbonate on another site. It binds the bile acid, but iit is in some over the counter calcium supplements in the US. Good luck, and please let us know how you get on.
Natalie I know what you are going through pain from stones stuck is unbelievable there were points I just wanted to die. Eating anything at all was so hard so I can understand why you are malnourished. Luckily so far the drop has worked for me but they did talk about putting in a stent to permanently widen the duct. Hope you get relief soon if these doctors had to go through this pain on a daily basis they wouldn't be so dismissive x
Thanks Sam the pain is horrendous but you just learn to live with it , I was told by my specialist they don't know what to do next so if they don't know I haven't got a hope 🤒
Really struggling today when I had the ct a couple of weeks ago it showed I was majorly constipated so I decided to try to move the bulk so I took stool softener I've got cold sweats I feel awful can anyone help ?
Hi Natalie did the stool softener work? if not and your still feeling rotten I would call your Doctor or go to A&E love xxx
Hi sandy it sort of worked but got a long way to go yet , I would rather see my doctor as I had such a bad experience last time in a&e 😢
Natalie you dont think that the pain you are in could be that your bowel is impacted? It happened to me last year I had to go to the out of hours doctor who gave me suppositories and it took me a further two days to have relief! I would go and see your GP love xxx
Can anyone help me I've been diagnosed with gastro parisis due to malnutrition I'm in absolute agony with really bad pain in my left hand side towards my back does anyone know what this could be I'm in agony ?
Hi, Natalie, I'm so sorry to learn this! How horrible! I did some on line research, and it appears that your stomach is not emptying fully, and that your digestive system might have lost the ability to contract properly. I learned that this condition can be managed with medication and diet. I know of someone else who this happened to as a result of taking chemo-therapy for hepatitis. I know that she's learned how to manage it (I knew her husband) and that she's doing okay. There is a site on line for people who suffer with this condition. Did your doctor do anything other than just diagnose you? Were you offered any information about medication and diet? I'm praying for you! Please let us know how you're doing. xx