Got my surgery date for my hepaticojejunostomy

So glad to hear debra! Sounds like you're on a good road to recovery. Good luck!

That is great news 95% must feel so much better, Debra.

?I'm scheduled for surgery next week, mixed emotions after waiting so long.

?It has been a tough year for many of us, so I second your good wishes to all who have struggled and hope the next will be so much better. Take care.

Best wishes for your surgery.Feel free to ask questions..

Debra1711

Hello debra1711,

My husband had this operation done 2years back and he is now having sludge and stones in the duct that was joined to liver. Im so worried and depressed about his health condition. Docs here removed the stones through PTCT procedure and put a stent for widening the site. I just want to know how your doing as i couldn't find anyone with this condition.. It would be great to know that ur doing well... I just want some hope

Hope your husband is fine now

I have gone through hepaticojejunostomy back in april 2016 due to surgical complication during liver donation.

My overall health is fine, but sometimes i suffer from loose stools.

I have also gone through hepaticojejunostomy back in april 2016 due to bile duct stricture during liver donation.

My overall health is fine now..

How are u? Your overall heath? Do you have any problems regarding this procedure?

Erickh I am having this same surgery in 3 months. I was born with choledochal cyst in my duct and I'm a bit freaked. It's very rare and this surgery sounds very frightening. Any words on recouping time and what you encountered would be helpful. I've been told 6 days in the hospital and 3 more weeks recouping time. I have no idea what I'm in for. I've put this off but need to do it in the fall

I'm delaying it because it's hard for me to get a month off of work and I just had my gallbladder out. It's been growing for 45 years apparently, so I'm hoping a few more months will be ok.

Surgery now scheduled for November 15th and I'm pretty freaked out about the outcome of my life after this. Scared too

Hi Kredfan. Just a bit of background on me for you. I'm a 45 year old man from the UK and was born with a choledochal cyst like you. Caused me lots of problems in my teens, had my gallbladder out at 17 then the cyst out and reconstruction at 20. Reconstruction failed and I had an hepaticojejunostomy using roux en y in 1997. So, 20 years post operatively I'm still alive and kicking. I've had some issues since then with things like regular stomach pain, loose bowel movements and over the last 7 years some low level cholangitis - itchy skin, bit of fatigue, flu like symptoms, bit of localised pain. Been seen regularly at the hospital, had a lot of tests (been injected with nuclear tracers etc to make sure flow is still OK) blood tests and cultures, all sorts of things but nothing really intrusive - and have not spent a night in hospital in the last 20 years. While it did take a while to recover fully and I had to watch my diet for a few years I've been very active over the last 20 years - I've played contact sports all of my life. My consultant is JP Lodge at St James university hospital in Leeds and is internationally renowned - free to me on our nhs though. I hope you have the same sort of luck and care I've had. Keep me posted and ask anything you like. Good luck. Jason

Jason thank you so much for your story. I'm 45 and they just found it . I hear it's rare to find this at my age. It's rather large and type 1 I'm told. I've scheduled surgery for November 15th and I just read all these articles and it looks so close to the liver and arteries so I am really nervous, but I know it needs to get handled. I'm just hoping it goes smooth and doesn't give me much trouble. I've been told I believe 5 days in the hospital and 3 weeks until I can return to my job which requires a lot of quick moving. Hoping to heal fast!

This was so nice to read. I am 26 years old and have had recurring stomach pain for the last year. I went to the hospital last week and was told I have pancreatitis and a 6cm type 1 choledochal cyst and I have to have a hepaticojejunostomy. I have an MRI tomorrow and they will discuss my case on Wednesday, I should find out a date for my surgery the following week. I am so nervous and confused, I have never been sick a day in my life and never needed a hospital admission, it is a completely new world. I am fit, have a healthy BMI and very active. I just hope I can get back to this after the surgery. Reading your story has given me hope, thank you.

I'd also like to add my email if that's ok! I'd love to keep in touch with you because it's so rare I'm scared and can't find anyone else to talk to to know what to expect or just nerves as well. Again all my best

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

It must be a big worry for you - back when I had mine done I was the 11th person in the UK to have it and there wasn't the amount of information available that there is now so I was going in blind really. In a lot of ways that made it less of a worry than it will be for you now - oh and I thought I was indestructible back then too! I had a few problems with the scar site post operatively but they didn't last long and we're only superficial. The main thing is that you don't try to do too much too soon after the operation. On the day of my op I was ten stone and remember looking at myself in the mirror and thinking that I looked so ill (I felt it too) Once I was up and about (it did take a little while) I felt much better than I had in ages. I took various drinks to put weight back on and took a tonic for a while too - all were on recommendation of the surgeon. I felt so much better that I went back to work too soon. Take the time off if you can, rest up. As soon as you feel well enough to exert yourself leave it another week! Do keep me posted, I'm crossing everything for you. J.

I was just the same. I had pancreatitis too - that's unpleasant isn't it! 😞 When my choledocal cyst was discovered it was about the same size as yours and they said it would grow to around the size of a melon in ten years. I had hepatitis as a kid and my parents were told to prepare for the worst but I beat that one only to get more liver issues later on. They've never really stopped me playing sports etc though so if you're otherwise fit and well then you'll get through this and recover fairly quickly I'm sure. It's a big operation though, no doubt about that so you do need to make sure you don't do too much too soon when you start to recover. Keep me posted and feel free to ask anything you like. Good luck - J.

Any new news? Hoping you are doing ok🌸

I was diagnosed with Type 1b choledochal cyst. I am 48 and had my hepaticojejunostomy 2 weeks ago. My surgery and hospital stay also was text book 5 days - pain meds helped tremendously here at home - I just in the past 3-4 days started experiencing intense pain in my upper right area - thinking maybe a bile leak - waiting on return call from doctors office. I am still confident this will be corrected and will continue this road of recovery. My doctor advised when home to be still and let heal. I did not come home with drain tubes or have to have any special equipment. I would advise not to eat large portions or meals - less quantity throughout day. 

I am now a little over 4 weeks out from surgery - those intense pain episodes- I notice if I eat fast - I have to eat slower and smaller amounts more often- basically graze all day and experience them as much and they are less often. I still really don’t want to eat but I am trying to. I did get nausea meds to help with that so I would recommend those. I will see about labs tomorrow and if all is well - I am going back to work on the 31st. I do have a desk job and have been walking more each day and trying to sit in chairs. The chairs make everything feel bunched up and uncomfortable but I am noticing that subsiding also. I am still not allowed to lift things more than 8lbs - was on blood thinner shots for 30 days - have not had to take anything not even Tylenol for pain in the last week. Hope keeping you informed how my surgery has gone has helped!