Got my surgery date for my hepaticojejunostomy

hello everyone - ive only just found this thread/forum today and i cant explain how excited i am to find other people who have had or need the HJ surgery.

i had my surgery in 2018 - after my first gallbladder attack they found that i had a type 1 choledoctal cyst. understood this to be a rare condition and have found it impossible to find other people who had the same and could understand - even my GP needed me to explain it!

anyway... when i had the surgery i was in theatre for 8 hours, they had a problem doing the roux en y - this was due to my bile duct being so small. they essentially had to do it twice. in terms of afterwards, i was in hospital for just over 2 weeks as they were unable to remove my drain due to bile leak. i was sent home with drain still in then went back in 3 weeks later to have removed.

recovery was pretty tough as my little boy was 2 and it broke my heart not being able to pick him up.

anyway, fast forward to 1 year on and im doing okay. i still get bouts of bad stomach pain, particuarly around my drain and bloating. they have said i have pretty bad scar tissue which could be driving this.

initially i lost a lot of weight but in the last 6 months i have piled it on which has been upsetting - has anyone else experienced this?

and finally, id really like to have another baby. but the thought of being pregnant now terrifies me - im so worried about how my insides would cope - has anyone else been pregnant after a HJ and if so how was it?

thanks

Hi All.

It is so good to see a forum like this!

End of July 2019 I got my gallbladder removed laparoscopically. A few days later I ended up in A&E - the bile duct was clipped incorrectly which resulted in a severe bile leakage. I ended up with swellings in my abdominal (& intimite) area and needed multiple drains and a major surgery (roux-en-hepaticojejunostomy) in October 2019. It was and still is a long and difficult recovery with several complications with a lot of pain and I am still very weak and immobile. I had 7 surgeries in total to fix the error which happened during the routine gallbladder removal surgery.

It has been 5 weeks since the operation and I only got my PTC drain removed via another procedure a few days ago. Thinking back, it was a hell of a ride. The open surgery was tough. For the pain I received a shot in my lower back before the surgery whilst I was under narcosis. When I woke up I was given morphine for 3 days via the push of a button. I did not see the cut but I could feel that it was long...more than 21 cm / 8 inches. The first 3-4 days were hell. Despite the drugs I could still feel the pain and couldn't move. I was also starving because I was nil by mouth until day 4. And even then I was only allowed to eat ice and soup until I had bowel movements, which took another 2 days. I stopped the morphine a bit early because I started to feel the effects of the drug. And despite only taking it for the few days I experienced withdrawal symptoms once I stopped. But I got over it and then started taking 4 grams of paracetamol per day. It has been tough to get out of bed and to move. But in hospital I made it a habit to sit on the chair for meals and to walk up an down the corridor at least once a day. The corridor wasn't long and the first couple of days I could only manage to walk 10-20 meters. Everyone who still has this surgery ahead of them or had it recently: take things slow! Don't do a lot because your body needs to recover. You can make a cup of tea once you are home but don't lift anything, don't do any housework, just sit and sleep and eat and walk (a bit). I took a nap every day for around 2 hours because I was tired. Also, I was in hospital for 1.5 weeks after the surgery. I was told that I should be fully recovered by end of this year, so technically one needs 2-3 months after surgery to recover. I am not back at work yet as I don't have the energy and am planning to go back in a few weeks time. Just make sure you have some help at home, someone who can buy groceries, cook, clean, and most importantly: to keep you company.

So far, I am still on a low fat diet and am slowly trying normal food again. But, there are certain foods that my body can't digest and I have to go straight to the toilet afterwards (diarrhea). The radiologist told me this is because the anatomy has changed and it may or may not be that my body adjust. Only time will tell.

Oh, and I went back to hospital every 2 weeks to get the cut cleaned and the dressing changed. My cut is still leaking and I change the dressing whenever necessary. I also experience numbness around my cut, this is because the nerves were cut as well. And for them to heal I feel a stingy pain every now and then.

I still have a lot of steps ahead but if there are any questions anyone has, please ask!

Imelda.

Hello everyone,

My husband had an HJ surgery in September. His hepatic duct was blocked due to a surgical error during cholecystectomy 15 years ago. It had been repaired, but recently scarred shut, causing septicemia. He had cholangitis right after the HJ surgery and was readmitted a few days later. He came home and has been doing well. However, about a week or two ago, he had some lower abdominal pain and back pain. The abdominal pain went away and the back pain occurs only if he sits or lays down for a while. He went to his primary provider, who felt it was muscular. During the few months leading up to surgery, he had a biliary drain and he was kind of hunched over, so it made sense...but I have still been worried. Yesterday, he started having pain in his upper abdomen, right in the middle. I am guessing this is where the jejunum connects to the liver maybe. It only hurts when he coughs or bends over. He has normal digestion and urination. No other symptoms. Has anyone else had these types of pains? We are getting it checked out, but I am hoping to hear some real world experiences as no one has really told us what is normal and what is cause for alarm (other than the obvious fever, digestive issues, etc).

Hi everyone. i can't believe i found this discussion! On the 21st on October, I had a hepeticojejunostomy with roux en y. Back in April of this year my father was diagnosed with pancreatic cancer, that had arisen from an Ipmn (high risk pancreatic cyst). He was fortunately operable, so underwent a 12 hour total pancreatectomy, followed by 6 months of chemo. During this time, i noticed i was a bit 'funny' in the stomach and experienced ongoing diarrhea. I went to a gastro to have it checked and she said because of my fathers history, I should have an Mrcp, which i did. Everything was fine, however they discovered i had a type 1b choledochal cyst. i was then seen by my fathers surgeon, who advised me that it need to be resected, and here i am 2.5 weeks post op. I must say, i thought I was prepared for the surgery, but it was more brutal than I expected. I was in icu for about 3 days, and the normal ward for another 8. On the 6th day post op I started getting a temp, so i was put on a mix of really strong antibiotics. I responded quite quickly to these, and improved over the following days. I did have a terrible time with cannulas, and ended up with 5 clots in my arms. Two of which were dvt's. I am now under a vascular specilaist for these. About 11 days post op, i started experiencing this horrible pain in my upper abdomen, a while after eating. It is absolutely crippling for about 30-60 seconds, and I cant breath or do anything except drink water as ut is so painful. Four days ago I started spiking a temp again, so was readmitted to hospital for a couple of nights. They gave me a cholangio ct and an abdominal ct and ran bloods. Everything with the scans were perfect. No bile leaks or collections and all the joins from the surgery looked great. They sent me home with antibiotics as they thought i may have had some 'biliary stasis' . Im not sure but this pain is stressing me out! Has anyone had anything like it? Its so hard to know what to expect with this surgery. Im so glad i found this forum, and i hope you all are recovering well and enjoy continued health in the future!

Regards Peita .

Hi all,

Unfortunately I can't help Peita.

But I got a question to anyone else out here. 2 days ago I started feeling a burning pain in my abdomen. Right where the long cut was done. It has been 10 weeks post hepaticojejunostomy. The pain is several times per day and the worst in the morning when I have been lying all night. My cut also hasn't healed fully yet. It is still open for 5mm on the far right and I am changing the dressing every other day. I haven't changed my diet or lifted anything heavy yet.

Does the burning pain have something to do with nerves? Is it normal? Let me know if you have an idea what this is or had similar pain.

Thank you.

Imelda

Hi everyone, I have spent the day reading through this entire feed of you all sharing your experiences with the RYHJ ... I'm only 23, and found out I have the type 1 choledochal cyst, but never had any symptoms what so ever. I am really worked up about it, I've never had surgery in my life and on top of it I have lupus (SLE). I was diagnosed with lupus at age 20 in 2016 but I achieved full remission Feb.2018. I'm concerned about losing my remission, and the thought of being put to sleep for 5-6 hour procedure has made me super nervous. Were any of you able to feel more at ease the day of surgery? I was told about the cyst after having an MRI done in October, but because i'm a grad student I decided I will have the surgery done next month and sacrifice my winter break this year to recover. It is making the holidays seem bittersweet for me this year as all i've been able to think about is this surgery and doing well in school.