Got my surgery date for my hepaticojejunostomy

Hi. It's great to read that you're doing well. I don't know whether you've read anything I've posted but if you want to ask anything feel free. It's a long time since my operation but I can remember quite a lot.

Hi jason hope you are fine

I have gone through hepaticojejunostomy in april 2016 due to bilary stricture after galbladder removal during liver donation.

I also suffer from loose stools intestinal rumbling gurgling. 

hi there, i hope your well. i am having hepaticojejunostomy soon. i am 54 and female , my surgery is at kings college hospital in london. i am very worried about the surgery and life long implications. i know you say your health has been better but could you give me a bit of insight into what to expect right after surgery and the problems you have had upto now. regards.

Hi Kis123 , pleased to talk to you. After surgery you will need to take your time to recover. There is pain after surgery because it is a major operation, but you will be on strong painkillers. I got out of bed the second day, it was difficult but do try to move as soon as possible, it will help to get fluid off your chest which i think is typical after surgery. It took a few weeks to get appetite back and i was given drinks to supplement vitamins. In total it took several months to recover . I went back to work 6 months after surgery but i shouldn't have because i am a teacher and this is not a job for those low on energy! I guess the changes are, long term, bowel changes, rumbling noises and episode's of nausea and pain. But painkillers and anti emetics help hugely. I cannot tolerate fats now , so fried food will result in pain. I then spend a couple of days eating plain white bread. You are obviously not well otherwise you would not be having the surgery. In that sense, you don't have a choice. But you will get through it, you will get better and the best advice i can give you is be gentle with yourself and accept the recovery time. Good luck

hello, thank you for your reply. Your help on this matter is much appreciated .

How long was your stay in hospital after surgery?

Were you given adequate pain relief to take home with you?

How long did the hospital do follow ups with you?

I can not eat fats, gluten, fish, nuts , hard cheese , eggs and a whole host of other foods since my gallbladder removal in 2014, i have lost a lot of weight and have many other health problems.

Have you been able to get sufficient nutrition from your food intake or do you have to supplement it?

I have no choice on the matter its the surgery or a risk of cancer. My husband passed away from cancer this August. it has been a tough year for my children and me.

I hope you are doing well , my thoughts are with you. thank you again.

Morning, my stay in hospital was 7 days and the first few days were worst for pain. Once home its more about moving slowly and i had good pain meds and nausea meds. I eat very healthy with all the food groups in my diet. I only suffer if i eat very fatty food such as chips or anything fried. So i don't eat them very often! I cannot tolerate alcohol either. If i have a drink i will get pain. After surgery because i had been so ill before and had no appetite i lost weight so was given ensures which is a vitamin enriched milkshake. One thing i would insist on by

the way, is do not leave hospital without arranging for nurse to come and change your dressings at home. They arranged for me to go to a medical centre but it takes time to actually get moving, you will feel fragile and its ridiculous to expect people after surgery to travel for dressings.

I am so sorry for your loss, i guess you may be feeling vulnerable at the thought of surgery. Surgery ( i have had five major ones and possibly another resection in future) is not to be taken lightly. But as you state you don't have a choice and i can say that the hepto really saved my life.

Forgot to add, i see hospital every year for check up for the past 14 years

Also I am 54 and i climb hills, cycle and walk every day. Also a teacher full time which i can assure you is the toughest energy draining job! I would not be here today if i had not had the hepto 14 years ago

Hi Sally,

I am 4 weeks post-op — I still have discomfort in the upper area of my stomach if I sit up for most of the day. Once I lay down for a bit it eases. I still get nauseous some - don’t eat much, but no pain. I am very happy at this point but wondering how long this issue of needing to stretch out my abdomen might be? So glad you are on this side of your surgery outcome! Thank you for helping-I have had a difficult time finding people that have had this surgery except for this forum! 

Dawn

Hi sally! I'm really concerned about when I can return back to work because I own a restaurant and I'm on the move all day. I'm also worried because as of now I weigh 128 pounds and not really wanting to shrink even more. I'm following dawns post very carefully because she's been such a great help to hear what to expect too. My surgery is now in 28 days. Just had my final mri/mrcp last night so now I wait

Hiya

?Firstly, don't worry....... I think it's fair to say that you should be off work for at least 4 weeks and then light duty's for a few weeks.  You can be there to oversee everything as long as your not running around.  I was in hospital for 12 days after mine, but they told me to expect approx. 2 weeks.  I was told I'm not allowed to lift anything heavier than a kettle for 6 weeks.

?I had to do plenty of short walks though as I found that sitting around just made me stiffen up and have cramps, so gentle 10 minute walks are good if your able.

?It's scary as well, not gonna lie, but hopefully you trust your surgeon and have done your research. As for weight, expect to lose a little bit more as I was only able to eat small amounts for a while afterwards but I soon got my appetite back after 3 months.

Let me know if there's any other questions you have........  

Hi Dawn.......

?Firstly, this is completely normal, you've had a big operation don't forget.  I would try doing short walks for 10 minutes.  I was in discomfort after as well, and found that really helped.  Keep an eye on the nausea and mention it at your next check up.  Are you on any medication?  Can I also say that you all need to be aware that you need B12 INJECTIONS after this surgery as your body can no longer absorb this from your food, also FOLIC ACID.  Keep getting these checked as you could end up with Pernicious Anemia (I did)

I now inject once a week myself as I was left for so long not diagnosed.

?Give the walking a try for a few days and let me know how you get on......

Sally34396,

You are a great blessing and help for us. I have been able to walk more and yes that helped- I also started eating less and slower- just more times a day(grazing I would say). I will go get my final labs and report tomorrow before going back to work next week hopefully. The doctor did get me some nausea pills so that also has helped - still don’t have an appetite but this sounds like normal for a few months - I will be sure and mention the B12 and folic acid to my doctor when I go. Than you again- Dawn

Hi Sally34396,

I went to my get my labs today from my PCP and all of my liver enzymes were double what they should be. They are being sent to my surgeon but was wondering if you remember that happening? I have felt Lethargic but thought it was because of my iron levels which are usually low. But my iron was almost normal - just my liver enzymes were high. Any thoughts are appreciated.

Thanks Dawn

Hi Dawn

?Have you had any other results yet or a response from your surgeon?  I wouldn't suggest leaving this to long for answers.  I have had cholangitis a few times with abnormal results but I was in extreme pain and you would definitely know about it.  This could be your body still adapting to the "new" way in processing your bile, but I still would follow this up ASAP if I were you.  We only get one chance at this.  Let me know how you get on....... x

I had an ultrasound on Thursday- still no results back - I feel my issue is not related to surgery itself but to the Thalassemia I have which compromises my oxygen to all of my organs; so they are having to work harder to heal. We should find out more next week! 

Dawn