Posted , 52 users are following.
Hi Guys
I heard back from the Heptobiliary surgeon today
I am having my hepaticojejunostomy next tuesday sept 6th at University of Chicago.
I am nervous..but hopeful that this long nightmare of sickness and pain Might be coming to an end soon.I know it will be a hard recovery..But anything is better than nausea,fatigue daily.
2 likes, 217 replies
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Jen1000 debra1711
Posted
I had a Hepaticojejunostomy in 2006 tonremove a type one choledochal cyst. Before the surgery I was very ill, but never with the classic symptoms jaundice etc. Just very ill after eating, to the point I couldn’t function. It was Open, which is what’s recommended over laparoscopic. I have a large scar but it healed well. Much of the numbness in the area is gone after all these years, but still some lack of feeling. I spent 2 days in the ICU and about a week on the regular floor. I have a low pain tolerance and it was tough, pain meds helped. I had an NG tune ( which I hated the most), a catheter, and a port in my neck to draw blood. I also had to have a blood transfusion a few days in due to bleeding. The risk of cancer is high if not removed as it’s not really a cyst but a dilation of the common bile duct. The bile building up changes the mucosa or lining and can cause cancer. Mine was clear for cancer but the mucosa had changed. Since then I have had follow up MRCP’s which have been clear. After the surgery pain at home was definitely not fun and pain meds were a must. I could eat fine and felt much better after I recovered, around 6 weeks. Over the past few years I have been experiencing recurrent stomach pain with nausea and cramping leading it vomiting. In the past year or so I have been hospitalized with this, but docs are unsure what is the cause. So far my connections and anastomoses in stomach look okay. I am hoping it’s unrelated, but I am not sure. No cholangistis ever.
LC852 debra1711
Posted
Hello all, so happy I found this site today!
I am scheduled to have a laparoscopic surgery to remove choledochal cyst (type I) + hepaticojejunostomy next week. I found out about my condition about a year ago but have been putting it off until now because it sounds like an awful and very invasive operation even with the minimal invasive method.
I am 40 yo female and no symptoms whatsoever. The condition was discovered last year as a result of gallstone attack, which happened only once so far. I had a very difficult time coming to terms with the surgery. I understand the increased risk for cancer and other complications if choledochal cyst is left untreated thus decided to have it done now. For me, it's a preventive measure to eliminate future risk.
Has anybody had this procedure done via laparoscopic method? Can you please share what to expect in terms of post-op recovery, pain level and complications? Any insight is greatly appreciated. I am very nervous! Thank you very much!
Bitharvest debra1711
Posted
So glad I found this site. I am 9 days out from my open roux-en-y hepaticojejunostomy for a type 1 choledochtal cyst. I spent 7 days in the hospital and am thrilled to now be home. I’m still in pain, managing it just with Tylenol (have a problem with opioids) but it gets a little better everyday. I still dread sneezing and coughing.
Though my drs are miracle workers my discharge instructions were not quite the best. I was asked to take 4 weeks off from work, which is almost impossible for me (but I’m doing it) and I want to make sure I’m doing the right things during that time. I’m trying to walk 10 minutes every hour or so. I’m eating small, light meals, and not lifting anything.
What else should I be doing? Any advice would be appreciated. Thank you! -jz
Kredfan Bitharvest
Posted
That’s what I did. Tylenol because pain meds make me nauseous. I was ready to work by week 3. I’m a waitress and own a restaurant but only went back first week for only 4 of those days. The coughing and sneezing is the worst for sure! Keep moving a bit. I’d get up and do a few dishes, or get my mail or vacuum gently a room to move but heal your body. Mine was open too so take care of yourself and listen to your body! Rest and eat light meals 💜 I’m glad you’re healing. I’m 2 months post op and feel great except of an itchy scar still from healing still
Bitharvest Kredfan
Posted
Thank you for your reply and encouragement. 💕 You sound a lot like me, not going to let anything hold you down. I have been trying to listen to my body but it’s mad about so many things right now (I came down with a sinus infection post surgery, and the hospital bed did quite a number on my back), so I’m not always sure what it’s saying. Minus the please don’t cough or roll onto your drain. ;p
I have been for the most part taking it easy and resting but been sure to get in laps of the house (inside) and stretch. I just feel so useless to the world stuck on the couch or in bed. I am a business manager for an auto dealership and haven’t stopped in years. To go from 75 hours a week to zero is shocking. I want to be sure I use this time I have to do the right thing by my body and heal correctly.
Kredfan Bitharvest
Posted
Bitharvest Kredfan
Posted
Smoothies, fruit cups, yougurt, dry Cheerios... all have become favorites to graze on. I don’t think I know what an actual meal looks like anymore. But I am quickly cleaning out the backlog on my DVR!!! ☺️
robert_44740 Bitharvest
Posted
Hello Bitharvest, I'm having this surgery soon and was wondering how your recovery is going?
Bitharvest robert_44740
Posted
My recovery is going well. I am glad that I had the surgery. The worst of it was definitely the worst 4-5 days. After that it gets better. The thing that helped the most was getting moving as soon as I could, even if it was just to sit up in a chair in the hospital or walk down the hall.
I am still a little sore (some days are better than others) and do not have all my strength back. (My recovery is probably slower as I have a slew of health issues including lupus.) Moving and not overdoing it are still key.
I know it’s easier said then done but try not to get overwhelmed by the prospect of the actual surgery. It has to be done, and before you know it you will be up and about. Please let us know how you are doing and ask any questions you may have. There is a treasure trove of information in these posts. (Reading through them prepared me for what to expect those first few days after the surgery. For me that as priceless.) {{{hugs}}}
robert_44740 Bitharvest
Posted
Thank you so much for the kind words. I'm having the surgery this Monday and hope all goes well. Hope you're recovering well and best wishes!
kristin84900 debra1711
Posted
My surgery is scheduled for Feb. 7th. I am quite nervous. I assume they will perform a biopsy of the removed duct. My rational mind tells me it will be fine and it's unlikely that I have cancer, but there's always that small voice that says it could happen. I have had a c-section before so I am not looking foward to the fear of sneezing and the difficulty getting in and out of bed part, but I know the pain does not last forever. This too shall pass. I am hoping for improvement of *cough* bathroom issues cough** and other symptoms that I suspect (but the doctor has not confirmed) are related to cyst.
Bitharvest kristin84900
Posted
LC852 kristin84900
Posted
kristin84900,
I had this procedure done just 4 days ago and I totally understand what you are going through at the moment. I had so many questions, doubts, emotions with this surgery. I am 40 female. I have been healthy and active my whole life, even this surgery is considered elective. The decision was a very difficult one for me and took me nearly 1 year to commit.
My operation with done both laparoscopic + open procedure and it took 6 hours. The surgeon only opened me up to complete the last step (hepaticojejunostomy) because it was too difficult to do it lap. As a result, I have 4 key holes and 1 incision about finger length. In my opinion, my surgeon is excellent and the approach was explained to me so no surprise. Today is day 4 post-op, I am feeling not bad at all. Let me give you a quick run down my first 4 days.
Surgery Day: had IV, pain pump, urine tube and nose drainage attached to me when I was brought back to the room about 8pm. I was very dizzy, nauseous and tired. Not fully conscious and lost my voice. My mouth was very dry and nurse spray some water on my lips. Slept.
Day 1: Dizzy, nauseous and exhaustion continued. Very thirsty but not allowed to drink yet. Only sips of water. The day was a blur as I was still heavily drugged from the surgery.
Day 2: Dizzy and nauseous got better but pain was the worst on this day. Really bad day, lots of pain and many times I used the pain pump. Allowed to sit up on a chair twice once in the afternoon and once evening, 1-2 hours each time. I was so tired, passed out on the chair too. Slept from 8pm to 6am. Nose tube removed.
Day 3: noticed significant improvement to my pain level when I woke up. It just got better overnight. Sitting up in the chair for a few hours. Doc transition me from pain pump to pain pills. He think it will work better for me. Urine tube removed. Diet changed from water to clear liquid diet.
Day 4 (today): pain is at a tolerable level, if I stay still, almost no pain, just feeling the tightness of my skin in the areas of incision. Coughing, hiccups, sneezing are bad still of course. Pain pump removed in the morning. Removed IV line at lunch. Progress to liquid diet. Had a shower with the nurse's assistance. Used toilet on my own. Able to walk independently. Had two bowl movements today, very loose and watery as expected.
I hope it gives you an idea on what to expect. Expect 2-3 bad days but things should look up from there. Also hope I continue to progress each day so I may get back to my normal routine soon. Prayers to you and your surgery. Please ask any question you have.
robert_44740 LC852
Posted
Hello LC852,
I'm having this surgery soon and was wondering how your recovery has been so far?
LC852 robert_44740
Posted
I am one month post-op and doing well. My hospital stay was 6 days. Upon discharge, I rested at home for another week. My surgery was lap + open so 4 lap holes + one 5-inch incision just below the rib cage towards the right side. Clips were removed at 2 weeks but the wounds remained covered up until 1 month post-op, which was 2 days ago. I went to the doctors office weekly to have my bandages changed and follow up.
My surgery and recovery went well. It was uneventful and no complications. I considered myself blessed to have found an excellent surgeon. I would say the first 2 days after the surgery was a bit rough but not horrible. I feel a lot of the discomfort I experienced was due to anesthesia. The doctor did an excellent job with pain management because I really did not experience much pain and was completely off the pain medication upon hospital discharge. I was given pain medication to take home but did not need to take it.
At this point, I am pretty much back to normal in terms of diet, bodily functions and daily activities. The only restriction is exercise. I tried exercising (spin) this week and could tell that my body did not like it. So I will give two more weeks to week 6 before I return to gym again. But I have been doing a lot of walking since one week post-op and continue to stay active through walking and just normal daily activities.
I should mention that I am 40 yo female. I considered myself healthy and active. I had major anxiety for the surgery but now it is said and done, it is not nearly as bad as I thought. It will take some time to recover but you will bounce back. I would say finding the right doctor was a key for me. I had consultation with 4 surgeons and this doctor was the only one that I am comfortable with.
Good luck to you! I sincerely hope you will have a good surgery and recovery. Please feel free to ask questions anytime!