Oh my gosh! I had a bile leak resulting from an accidental cut made in my liver bed. I ended up needing a laparotomy (resulting in a 12 inch incision) to suture my liver and I swear I will never be myself again. I just posted my story in the digestive forum. I would love to get more details about your experience and any symptoms you may have now that you think are related.
“Is this a bile leak?
I had my gall bladder removed on Feb. 23rd of this year. I did great for the first 8 days. On the 9th day I started developing abdominal pain in the upper right quadrant, nausea and diahrrea. I went back to the surgeon and he told me that it was probably nothing, but ordered an abdominal ultrasound. It showed nothing. I have been to the ER twice, had an abdominal CT and told that I needed a psych consultation for stress. The pain is very real, and continues to get worse, and they are telling me I am crazy. This is the status of our healthcare system. No one wants to believe that a silled surgeon could make a mistake. I hope I don’t die from his mistake.”
I had a my gallbladder out Feb 15th 2010. Bile leak 19th stent the 20th. Horrible pain, worse than labor. Septic after that 103.5 temp for days. It has been two months now and I still get pain in my right shoulder mainly at night for 2-3 hours and a pull under my right rib. I also have low grade temp all the time. 99.2-100.5. I want to know if anyone feels normal yet after going through all this???? Easy surgery gone bad. Once week off of work to 9 weeks!!”
Wow this is amazing to see that so many people are experiencing this. I had my gall bladder removed in July of 08. In the hospital for 3 days. Went home and was scheduled to go on a road trip on the following Saturday. Went to my appointment on Thursday and told the dr. that it felt like i had a lump in the top of my stomach. When i ate felt like the food would get stuck. not go down and won’t come up but I was told that I was fine to go on the road trip just had to keep stopping so that I wouldn’t get blood clots. I did exactly that but when we got about 29 miles from where we were going this terrible pain came over me and i wouldn’t do anything but say oh my God what’s going on I told my husband that I was having a heart attack. the lump that was in the top of my stomach went away but I was in so much pain. He stopped so I could get out and stand but I couldnt needless to say he had to speed the rest of the way. He called my sister and she had to meet us on the main road and take us to the hospital. Got there only to find out that my bile duck had bursted. Man the pain I was in I wouldn’t wish it on any one. Went straight to the hospital and spent my whole vacation in the hospital. There they put a drainage bag in just to hold me until i got back home because when i got back I couldn’t hold anything on my stomach. Went to see the Dr. that did the surgery and he then sent me to John Hopkins. At Jopkins, the put in another drainage bag and removed the one from the Ga. hospital because it was put in too high. Needless to say I went from July until December with the drainage bag on my side. Did good for a while and last year I was hospitalized because I couldn’t hold anything on my stomach but they tell me it was nothing. Now I am having the problem again. I eat my stomach is nausiated if i don’t eat i’m nausaited. Went to the drs. and he gave me antibiotics two different kinds at two different times. Went to him last week and he tells me that he finally looked at my file and he thinks that I may have a bile leak and again give me meds but I’m not liking the feeling i have, feeling sick all the time. I too just want this to be over.”
I had a bile leak in Nov 2007 and still feel pain in the right upper quadrant. After various tests showing “nothing” I do sometimes wonder whether leakage can continue after the site has supposedly healed.
“OH MY GOD, i have cried reading your post, it sounds so similar to myself.
i had gallbladder removal on 24th august the next day i was in a+e in excriciating pain, was admitted and stayed in for 6 days. told me had fluid but that was to be expected after surgery, and all that was wrong was i was constipated, sent home.
back in to a+e the next day again same pain another ct scan, more fluid but that was ok nothing to worry about. sent home!!
i got a day at home luckily enough for my 6 month old baby boys christening, then back into a+e again with the worst pain so far. they ended up refusing to continue giving me pain relief as they said i was just constipated, i knew i wasnt but then im no dr!! the next morning still in a+e by now i could hardly breath the pain was so bad, see a new dr and he says its a bile leak, i had 2 emergency ops, one to fit a drain to get the bile pool that was all in my abdomen the other to fit a stent in my liver to where they had made a small cut whilst taking out the gallbladder. so for 14 days bile had been leaking into my abdomen and damaging my organs, but then thats what constipation feels like, right!!! fools. i spent another 2 weeks recovering, and then sent home. im still in pain, like you say when i take a deep breath, stretch, hold my baby for too long, walk too much. im due to get my stent out at end of october and im so scared. but im also scared that im always going to have this pain. have they damaged my organs forever? will they recover in time.
i missed my babies first word, him sitting up unsupported and him learning to roll over, time i will never get back. i was away from him for over a month and missed him more than you can imagine.
i am so depressed as i thought a day of surgery and a couple weeks to recover and all would be sorted i feel like im going to regret this for the rest of my life.
the thing i hate the most is the drs making me feel like i was a problem to them when it was there error. and making me feel like i was imaging the pain, just because they couldnt work out what it was it meant it couldnt of been as bad as i was telling them it was.
i will never get over this i feel it has ruined my faith in the NHS and our DRs.
i hope you see this message, and reply as i would really like to know how you are doing now. i really hope you are feeling somewhat better and then maybe i will have some hope that i too may get better.have they done anymore tests to see if there is any damage to organs or if the liver is healed?
i really hope you are well. i cant believe how many people there are on here who have suffered so terribly.”
“I had my gall bladder removed and went home the next morning. 3 days later woke up feeling yuck with indigestion then the most horrid pain that I’ve ever experienced. I was clammy, hot, sweating and got my husband to get an ambulance. I felt I had a stone stuck and thought the hospital would sort me out straight away.
I had xrays and got moved to a ward on morphine which didn’t touch the pain. I had an ultra scan and they decided I had constipation. I was given something to get rid of the constipation which stopped my guts working. At last the pain went away after a night running to the loo and on oramorph. told a dr in the middle of the night nothing was touching the pain. Anyway I got seen by some dr’s who realised my bowel wasn’t working and ordered a CT scan. Waiting from 9 am to 2 pm someone told my surgeon I was in. By this time I had given up and was waiting to die. I had pneumonia a large stomach and unable to wee. The surgeon came to see me and told me he would have me in surgery straight away. I had 5 days iv antiboitics and a drain in for 5 days. I was going to have a stent if the drain didn’t work. The surgeon said he couldn’t find the leak which I find hard to believe but I had a lot of bile poisoning me. I did make a quick recovery but I do wonder if treating me for constipation almost killed me. Now 3 weeks later I’m getting fed up that I still don’t feel great. No energy etc and wonder if this is because I was so ill.”
All these stories are like something I would have composed myself. Exactly the same thing! Had lap surgery in June 09, discharged same day later, on Friday, by Monday afternoon I was in the worst pain of my life. Couldn’t move, had to be taken to hospital by ambulance. Was told the bile duct had been nicked and would repair with stint, which was removed approx 8 wks later. To this day, I am suffering worse than EVER! Constant cramping, diarrhea, vomitting and the attacks are paralyzing, literally…I am unable to move for anywhere from thirty minutes to one hour. Had hemorraghic stroke in Sept 10 and I still haven’t found anyone to help me! My BP has become uncontrollable, on seven different bp meds and an emergency bp med and my GI said “it is not possible to have a leak after the repair”…….yet it is the exact same symptoms, just get relief after I become violently sick with the vomiting, diarrhea, profuse sweats, and paralysis of the legs and arms for several minutes up to one hour. If anyone has any suggestions to offer, please do so! I can never tell you how much it would be appreciated……………so tired of being sick and tired!
It’s no better in the UK, believe me. I had my gallblader removed then suffered agonizing stomach and chest pains 4 days later. The pain was so bad I could hardly breathe. Was admitted via A&E, scanned and discharged with a diagnosis of constipation and some laxatives. 12 hours later the pain returned and I was admitted to hospital again where a second scan identified about 1 litre of bile in the liver capsule. A drain was inserted via the Radiology Intervention team (very painful – no anaesthetic), and an ERCP was performed. Drain had to be replaced because it became blocked and when the radiologist replaced it he spotted another collection of bile and recorded it on my file. I also told the doctor that there was still some fluid present but they ignored me and discharged me. Two weeks later I was re-admitted due to a constant nagging pain low-right side of abdomen. Scans and blood tests confirmed that the fluid had turned septic so another drain was fitted and I was on antibiotic drips for 4 days and then 10 days of oral antibiotics. The drain bag remained in place for three weeks. All fluid has now gone and the only problem I have is a slight pain at the site of the drain if I breathe deepy or yawn.
I am having the same problem I had my gallbladder out feb 2010. 5 days later a bile leak. I have been to the er over 100 times in past few years with all the workups x-rays and nothing. I puke bile like 5 seconds after I wake up. I am now to the point the hospital thinks im faking and can make myself puke bile and that bile is burning through my stomach. I have a very very high pain tollerence and Im crawling on the groung in pain everyday! I had to go to NY to find a dr to admit I was in terrible pain now I take dialoted 4mg 3 times a day and Zofran or phentagren and that aint touching it! Everyone is looking at me like im crazy when I yell out in the worst pain ever it makes my blood pressure bpm 200 been at 240 and my dad had strokes at 170 so I think Im done soon unless they fix me or quit diagnosing me with anything with similar symptoms! Anyone who goes through this please contact me my name is Jimmy firstname.lastname@example.org I will be the one who finds out whats wrong or die trying! This has taking my life over and I cant do this much longer! Good luck to all of you fellow non gallbladder having people!
I had a lap chole on 7/15 and woke up from the anesthesia in excruciating pain. Unable to get my pain under control, instead of going home that afternoon, I was admitted to the hospital until 7/17. After being discharged still in pain, I went home. On 7/20 I was still in an extreme amount of pain, and was telling myself that it was only in my head, and that if I could just get out of bed and walk around, the pain would subside. After looking at my yellowing abdomen, my mother decided to call my surgeon who instructed us to go to the ER. In the ER we were informed, after an ultrasound, that there was fluid forming in my abdomen though they couldn’t figure out where it was coming from. They scheduled me for an ERCP the following day and admitted me as an inpatient. Unfortunately the doctor who normally does these tests was not in town, so I would have to wait another day in order to have the test done. By this point, I had not eaten in 6 days, other than Jell-O. Upon waking up from the ERCP I was informed that I have too many ulcers in my stomach for the doctor to get the tube through to the bile duct. Our next step was to try an abdominal CT scan, which the oral prep caused elevated blood pressure and heart rate. The CT scan showed that indeed I did have a bile leak (as the ultrasound 2 days before had also stated) though they still could not tell where it was from. I was scheduled for a HIDA scan in nuclear medicine the following day. After the HIDA scan I received a call to my hospital room from my original surgeon who had been out of state at a conference. She stated that due to the amount of bile leaking into my abdomen, I would need to be transferred to a hospital in a different state where a specialist could take a look at me and surgically fix my leak. I was flown to another hospital the next morning where I sat around for 2 days until another ERCP could be performed. After that ERCP I was informed that the doctors were able to find the origin of the leak and cut a hole in the muscle next to it, hopefully giving it a chance to heal on its own without surgery, as a stent was not possible due to anatomical abnormalities. Another CT showed how much bile was in my abdomen (as the 35 lbs of weight gain and my yellow-protruding abdomen weren’t evidence enough!). It was after the CT that I started having chest pains and had to be on a constant heart monitor and oxygen for the next 2 days. The day after the ERCP, a drain was placed in my lower abdomen, and 4L of fluid drained out of my abdomen in the first few hours. The drain stayed in for about 10 days, and was removed a few days after returning home. After 7 days in the hospital in another state, and 11 days total, I was released to go home. I spent the next two weeks at home attempting to get better. Two days after returning to work, I suddenly came down with uncontrollable vomiting and abdominal pain. I went to the ER where I was told I have diverticulitis and to take antibiotics. The antibiotics prescribed to me, I turned out to be allergic to so I was admitted to the hospital for another 5 days so I could get IV antibiotics while being monitored. I also have terrible veins and had had numerous problems with IVs while being in the hospital so a central line was placed in my upper arm. Thanks to the central line, I now have a DVT (blood clot) in my arm and have to give myself injections twice a day for the next 10 days. I am nearly 8 weeks post-op and still can’t see a light at the end of the tunnel.
After continuing abdominal pain I was diagnosed with gallstones and an operation was planned to remove my gallbladder. I was told following the procedure that my gallbladder was perforated and they’d placed a drain. The drain didn’t pick up much so was removed 2days later and I was sent home. I was happy as larry for one week until I developed a sudden onset of excruciating abdominal pain… I snapped at the doctor who suggested it was because I hadn’t been taking pain killers or because I was constipated… they did some tests and then further surgery to drain 1.5 litres of burning bile out of my pelvis and insert a second drain. Yes I’m still sore several years on and no I don’t blame the surgeon who removed my gallbladder. It was unfortunate that there was a complication (especially such a painful one) but these things just happen. When you start chopping at your body it won’t necessarily respond in the way that you think it should. I’m just grateful that we have enough medical knowledge and people who want to put themselves through an insane amount of training/financial costs/stress to provide a support system for when our bodies reach crisis mode. If we sue every single one for what we think (but can’t possibly know) was medical error, the world would be an awful lot worse off. We’ve all been dealt our hand and we should make the most of it instead of letting it consume our lives.”
“Pain after gallbladder removal and bile leak
I have a very similar story. Gallbladder removal on 5/8/12, felt better for several days then developed intolerable searing pain in my upper right quadrant and radiating into my back. I went to my doctor for a follow up and was told I was “”fine”” and that my pain was “”normal””. The next day after almost calling an ambulance, the pain was so bad, I went to the same ER where the surgery had been performed. I was told that my body was “”over-amplifying the pain”” and that I was “”imagining the severity”” of the pain. I was sent home after a CT (that showed some fluid in my abdominal cavity that was a “”normal amount”” according to the doctors) with my pain meds.
Later that day, still in pain I called the doctor and was told that the ER had instructed him to inform me that if I returned I would be offered a Pysch consult and nothing more.
The next day, knowing that something was wrong with my body as I was writhing in pain, I went to another ER. Thankfully, they found a bile leak and performed an ERCP to circumvent the damage.
Again I felt better for several days, then began to hurt again. This time in my back radiating to my upper right quadrant. It hurts when I breath deeply, when I stretch, when I eat, etc. I am also having terrible stomach spasms. I am worried that the bile did irreparable damage to my lungs/tissue.
My doctor says pain is normal but I still feel like “”something is just not right with my body””. What could it be…Please advise!!!!”
The same thing happened to me, however it wasn’t until I begged for 10 days did someone listen to me. The CT scan found almost 2 litres of bile, pooling in my pelvis, gallbladder bed, and adjacent to my liver. The bile had turned septic, and I was really ill. I was operated on, by having a cut from neck to groin, to wash the bile out, and all my internal organs. Then I had 4 drains inserted, and spent 6 weeks in hospital. 6 months later it looks like I need a partial biliary restructure. The pain is awful, and constant. I’m actually taking legal action against the surgeon and the hospital. The bile sitting in there for so long has caused irreparable damage. I think the pain you feel, you should take seriously, it could be bile duct spasms, or adhesion’s. Talk to a doctor, and get a second opinion..