I am assuming no one here can offer wisdom with this, because it's rare. Has anyone had or have choledochal cysts or cyst? I have a big surgery coming called roux n y hepaticojujunocomy (sp). I was seeing if anyone has had this surgery. Thank you for reading 💜
Hi my specialist said I have carolis disease then changed his mind to choledochal cysts I have them all over my liver and bile ducts ive just had surgery 4 weeks ago to remove gallbadder and 2 of the larger cysts which were over 10cm he said that they where ready to rupture so went in hospital as a emergency he called it deroofing of the cysts he also said I might have open surgery but thankfully he was able to do it keyhole which took him nearly 5 hours poor man
Ive just gone back to work and iam seeing the specialist on the 27th july to see whats happening next
I know its not the same operation as u are having but there are a few off us around with this
Hope this helps
Regards Alison x
Yes I am 48 and just had the hepticojejuostomy surgery 2 weeks ago. Yes it is rare - but bile duct cancer is the opposite side of the coin. Chances decrease from 59% to 2%
How are you feeling? How long in hospital? Can you eat? My surgery November 15
I have actually been blessed to not have any major pain with pain meds- discomfort- my surgery was on Monday- I was home on Saturday afternoon. I was eating regular foods as of Friday before release (I still really don't want to eat much - small amounts from a saucer-but regular food) the first week after surgery- I slept a lot and watched a lot of tv - still sleeping on my back- have do have intermittent intense pain that lasts 2-3 minutes about 3 times a day. I am off pain meds as of yesterday except at night. My post op is Thursday. My incision is about 7-8 inches breastbone to belly button but looks good. I have been able to go to bathroom on my own since hospital and take showers-first couple times in shower my husband made sure I wouldn't fall, now I take them in my own. I have lost about 10lbs but have needed to anyway-if you don't want to lose any weight I heard protein shakes help. I hope I have given you some price about your surgery in November- I was really scared also - my surgeon is also a liver transplant surgeon- he has been great. Let me know if you have any questions I might can answer. Your sister in this- Dawn
Great info! I'm so grateful for the response. Thank you. Please stay in touch on progress. I figured it wasn't going to be a dainty scar. I've already got 5 mini ones from gallbladder. Surgeon didn't do the big surgery, so I'm being sent to sacred heart November 15th. I'm just so nervous of the rarity of this.
Hi! I am scheduled to have keyhole surgery to remove choledochal cyst (type I) + hepaticojejunostomy next week. I am very nervous!!! I see you posted this 7 months ago. Have you had the procedure done? How was it? How was your recovery? Are you back to normal now or still have complications? I actually do not have any symptoms but I've seen 4 specialists so far and got the same answer. Excision is recommended to prevent future complications. Is this really a right course if I have no problem at all? I am afraid it might do more harm than good.... appreciate any experience or insight you can share!
Hi! Please tell me prior to having the procedure done, did you experience any symptom or complication with your choledochal cyst? I have this procedure coming up next week but having a hard time accepting this major surgery to simply reduce potential complication in the future, which may or may not happen in the first place. And if the surgery or recovery did not go well, I will be worse off than I am now... I am feeling just fine right now living in peace with my choledochal cyst of 40 years.... Thank you!
Hi LC852
Glad you found this site - it has been helpful to me - I was experiencing higher than normal liver enzymes and starting to see some complications from that - also very loose stools almost all of the time - doctors kept putting saying they did not think the cyst had anything to do with it but ever since my surgery I have not changed my eating habits and have had the loose stools. I know that is TMI but that is where I was. I do have a low immune system due to being Thalassemic so any thing extra on me seems to get more complicated because of this - I do not regret the surgery; I am better since I’ve had it. Hope this helps. It is a major decision and surgery so with whatever is best for you is the right decision.
I noticed my rely said I was still having loose stools but that was supposed to say I am not anymore- also the liver issues are better!
Here’s the deal. I was perfectly fine. It was dumb luck they found my cyst from my gallbladder issues. I had mine 45 years as well. Felt nothing. The risk of cancer goes up on that cyst every year, so essentially it’s a ticking time bomb on possible cancer and consider the location. Sooooooo get it out! 😃 I am 8 weeks post op. It’s a hard recovery for the first 2 weeks for sure. I couldn’t have keyhole. Cyst was to big. Count on a month off of work.
Thank you for your reply and not TMI at all. I want to know all about it and what to expect! Doctor mentioned that he will test liver function prior to surgery. I am not aware that I have any liver issues but we'll see what the test says...
Did you have open or lap procedure? what was the pain level post-ops? how long did it take for you to get back to normal daily activity without too much discomfort? I am not sure how long ago you had this procedure done but just also curious if you experience any long term issues? Thanks again! Much appreciation!
Hi Kredran! Congrats on 8 weeks post-op and on the way to recovery! This gives me much confidence.
Same dumb luck here! I was hospitalized for food poisoning and while in the hospital, I experienced my very first gallstone attack. I did not even know what was happening to me and believed I just had a really bad case of food poising as the pain was so severe that I was on the floor...
I have Type I Choledochal Cyst measuring 6.7 x 4.4 x 6.0 cm. I am not sure if this is large or small or what.....? What was your cyst size? The idea of hepaticojejunostomy really freaks me out but so does cancer risk...
Do you foresee any long term issues or complications associated with this major operation? What do you think is the most difficult part of the recovery? Are you able to consume spicy food, coffee, and wine?
Thanks again. Hearing about your positive experience really helps with my anxiety!
I don’t drink caffeine so I don’t know about coffee. Yes I love my red wine and it’s fine. Yes to spicy food again 😬. The most difficult part is the first 10 days. Muscle spasms in stomach, the pain. I didn’t take pain meds out of the hospital so it may have been rougher for me. They just all make me nauseous so I stuck with ibuprofen. My surgeon was brilliant and gave me an epidural for the 5 days in hospital. You’ll be fine. Just give yourself the time to heal and keep me posted 💙🌈
My surgery was September 18, 2017—I was pretty decent after 4 weeks but went ahead and took 8 weeks off work as the spasms were bad and I work in a call center so if I had one while on a call it would have been difficult to continue on the call. I would walk with my hands in the air when I got them. I had the open surgery as my doctor felt the time under anesthesia would be less. The Epidural did not work on me so they kept me pretty sedated with IV pain meds - I did have to have the NG tube for a couple days for the nausea- I had nausea for quite a long time and lost about 35lbs as I couldn’t eat without that. I was on nausea meds and pain meds for about a week to 2 weeks after surgery (pretty strong ones) I was only in the hospital 5 days - no blood transfusions- no ICU- kept taking the nausea meds for the entire 8 weeks - they had me walking when I was awake on the 3rd day around the halls. My cyst was not cancer thank goodness and yes the reason is the 50% chance of it being cancer by the time your fifty keeps increasing (bile duct cancer is nothing to play with) I will be 50 this year. I couldn’t handle the thought of the odds. Let us know what you decide and keep asking questions. It is no problem
Hi! My surgery is in two days and my anxiety is getting intense. Thank you for the encouraging words. This helps me a lot and gives me hope. I know I will face a long road to recovery and I just hope for the best. Are there any complications after the surgery? Do you have to change your life style? Are there any activity restrictions? I am a runner and stay active for the most part and I really hope that I can continue with these activities and do not need to make any major changes to my life style...
Hi dlc1023
Just been told I have choledochal cyst where I had gall bladder removed in 2007. Have been experiencing discomfort in gall bladder area for over a year. From Oct last year, I was feeling very out of sorts, skin colour not good, spotty, bloated and itchy face, itchy all over body and loose stools. Went to doctor several times, liver function showed slightly raised, which is when ultrasound and diagnosis made. Awaiting further scans now. Am 58. Did you have any of my symptoms? Thanks
hi,
I was diagnosed with a Choledochal Cyst 2 years ago. It was picked up accidentally as I was scanned to see if i had PSOS (trying to determine why I was always bothered with acne)
I’m turning 30 this year and run my own dance studio. I do a lot of dance teaching myself so the news of having to get a major bowel surgery to remove the cyst was very terrifying as it means taking a very long time off work… something not easy as a self employed dancer! I have no symptoms that stand out, just always been the way I am. Always had looser stools and always had skin problems.
Did you have your surgery?
Mines was originally supposed to be 2 years ago but was postponed because Surgeon wanted second opinions. I postponed it last year as i was getting married. Due to be this year. I struggled a lot trying to make a decision as I’m scared of possible complications because of the surgery but I’e decided to go ahead as cancer is something I dont want to risk. Still terrified though.
My surgery will be a large incision down my stomach and along to the left due to the size of my cyst. It also doesn’t join my pancreas and I have extra blood vessels. I think them cutting through my core muscles will be the hardest part of recovery physically for me as a dance teacher and active person.
Would love to hear from others with this condition.
Ive attached a picture of my cyst. If anyone has images would also like to see 
hi there , i am 54 and female. i have just found out i have choledochal cyst and will be having open surgery soon but do not have a date for it because of covid . I would like know if you have had the surgery and the outcome . My surgery will be at Kings college hospital at denmark hill.
hi,
Sorry to hear you have been diagnosed.. hope it isn’t causing you bother.
No I’ve not had my surgery yet either, delayed because of covid… was told late autumn but no date in sight.