Got my surgery date for my hepaticojejunostomy

Hello kay80562 and ALL the brave patients in this forum. Very Thankful to have found this for information on such rare medical condition. I am sorry to hear about your complications kay80562, have you improved?

I had my Surgery May 2019 for Mirizzi type IV and my cholycystectomy was converted to Open Surgery for Roux en Y hepaticojejunostomy the only option for my fused cystic duct that fused to common hepatic duct with impacted stone. What I find most helpful during recovery is Abdominal Binder. I am still in recovery and was told the Healing would be 3-6 months. To ALL the patients going through this, I PRAY very hard for all of you to get Better. This is also my wish for myself. Take it 1 day at a time. Each day gets better and better and better. I am also on anti depressant medication and to be honest, this medical condition post surgery is a lot of anxiety and despair. I try very hard every day to look at the bright side that the hepaticojejunostomy saved my life. Be Brave. Wishing you ALL speedy recovery

hi kay80562 and everyone else. been a while since I posted. I have issue with liver stones and had the hepatojejuostomy 13 years ago. so how has it affected my life....I am generally fit and well. stomach growls a lot, toilet issues if I eat fat or drink alcohol. have episodes of low level cholongitis which over past couple of years becoming more frequent....basically a couple of days bad pain and nausea and burping approx once every 6_8 weeks. surgeon is talking about removing a couple of segments or weighing up the risks and living with pain. most days I have liver pain but am used to it. I have a great life and feel very lucky to have had this surgery . is this a rare condition? is this still a rare surgery? any how glad to have found the group and I feel happy to be alive!!

omg the stomache growling!!!! its 24/7! drives me nuts.

I had my surgery about a year and a half ago. Half the time I'm okay, but the other half I have abdominal pain & nausea. It's all generally all bearable but it's aggravating & uncomfortable.

My dr can not say for sure if these are due to the surgery (I have lupus and also had different digestive issue prior to my surgery, it's actually how my choledochal cyst was found). I do know I can no longer drink alcohol without getting sick, and red meat & I are no longer friends. But all things considered I an doing pretty well.

As I had open surgery and keloid easy I do have a lot of scar tissue, which is extremely uncomfortable. Scar massage helps a lot, and I would recommend it to everybody.

I would assume this is still a rare surgery since even an ER dr hadn't heard if it, and the one who finally had was extremely excited and compared it to the superbowl of surgeries.

This forum is great because so few people understand this surgery and what life is like before & after it. To hear other people's journeys, their successes and their setbacks, really makes me feel so much less alone. Thank you! {{{hugs}}}

agree! bitharvest. I Can eat anything and drink anything. It just doesnt matter. stomache is louder than a truck warming up. Sooo embarrassing

So when you guys say "stomach growling" do you mean, like, gurgling? It's been about a year and a half since my surgery, and I can attest to the stomach gurgling, or more like ROILING! It feels like I have lava in my stomach and it literally roils all day long.I have soft stools constantly, I'm often gassy and have eggy burps. I can't identify a food trigger. I'm pretty sure there isn't one. My surgeon had put me on protonix after the surgery, so he was surprised when I described these symptoms at my one year follow-up. He told me to double up on the protonix. I found that to be useless as well. The one thing that I found that relieves symptoms is chewable pepto-bismol. I chew a few and get legit relief, but it only lasts a few days to a week, although I am having a particularly long stretch of relief these days.So this growling that you guys describe...is it similar to what I am describing?

Hi Bitharvest and fellow survivors of this highly complicated surgery. I had my Roux en Y hepaticojejunostomy 10 weeks ago. My Lap Chole gallblader removal was converted to Open surgery when the surgeon found 2cm impacted stone that caused destruction of bile duct, hence need for hepaticojejunostomy. On 4th day at hospital the anastamosis had a bile leak and infection. That was very difficult and extended my hospital stay. During recovery I did 10 minute walks to expedite healing. Then, 4 weeks post surgery I was hospitalized again for Septicemia (bloodstream infection) from leftover bile from surgery.

I am female, 40, slim and eat healthy. Now is my week 10 post surgery and my problem has been as Bitharvest mentioned, constipation and BLOATING. My bloating is severe, just drinking water causes my bloating and it is very distressing. Everyday I wake up with a very bloated stomach. GI Doc Rx Amitiza which does help with bowel movement but the Bloating persists. The past 6 weeks I have taken Probiotics, Digestive enzymes and stool softener, nothing seems to relieve bloating. I follow low FODMAP diet (for IBS) however since surgery, I have become a bottomless pit, hungry all the time, it's crazy.

GI Doc scheduled me for Gastric Emptying Scan (determines how fast the stomach empties) as he still cannot find the cause of my issues. Has anyone found relief from this?

Praying for Everyone's Speedy Recovery.

Hi Kredfan and kristin84900- YES the stomach growling is persistent. Mine is worse at night. It is loud and distressing. I chew Gas-X 4 times a day. I will ask my Doc about protonix. My hepaticojejunostomy was 10 weeks ago. The Docs did MRCP (MRI of liver and abdomen) on week 9 to make sure all the anastamoses healed and everything looked OK so they are still searching for the source of my issues. I do get occasional lower left quadrant pain when I eat. Is the stomach growling cause by gas or new digestive process adapting to hepaticojejunostomy?

My surgeon thinks the gurgling is my body getting used to its new way of digesting food (like you said) i.e. constant bile drip straight to the intestines instead of being held in the gallbladder. He seemed to think it would get better over time. I haven't taken my protonix in a long time. I found them ineffective and not worth the potential damage to my liver. I take pepto and gas-ex as needed.

@VeryBlessed, I was very sick after my surgery as well. For the first few days after my surgery I felt terrible, just like someone who just had major surgery, but I felt like I was getting better. Then on maybe day 4(?), it's all a blur honestly, they discovered I had a fever so they started me on all sorts of IV meds. Then I started having severe pain in my back, I told them I felt like I had been shot in the back. The pain even became part of my dreams; I had a dream that I had been impaled in the back by a piece of metal from a plane crash. They were also not happy with my urine output. They sent me for scans and found that I had a mass of fluid in the surgical area. They installed a 2nd drain. The pain did not improve. My legs started swelling. I expressed my concerns. One of the nurses made me wear those inflating compression leg things in bed. Took them off one day and my legs were huge. Woke up one morning and told the nurse I couldn't feel my feet due to the ungodly swelling. (maybe day 10? in the hospital). Anyway, turns out I was suffering from stage 4 acute kidney injury and close to needing dialysis. They treated the fluid build up with a drug that forced me to pee. Once that was under control it was just a matter of getting me to eat and getting that spot to drain. I had not really eaten since the surgery. Everything tasted really bad and I was nauseated. They said it was from the anesthesia. That's when the vomiting started. I vomited up everything for the next 3 weeks in the hospital. My blood chems were all over the place. The only thing I could keep down was orange gatorade, which probably saved my life hahaha. I basically starved for a month. They finally installed a PICC line. That's about when I started to really improve. After 30 days in the hospital, I went home with that PIcc line. It took another week or so for me to stop vomiting, and I was able to eat very, very small meals.

I guess, long story short, that I was leaking bile as well(?) and that's maybe what caused the fever. Being pumped with every anti-fungal and antibiotic on earth caused the kidney damage (although the hospital would never admit it), and I have absolutely no idea what caused the nausea and vomiting. TBH, I don't think doctors in general truly understand what happens with us.

It's been a year and a half and I slowly got better and better. My stomach still feels weird, and I can't eat certain things without suffering from bloating, belching, and diarrhea. Basically anything that's hard to digest such as large meals, fat, red meat, sometimes popcorn...... It's annoying, but I think that's key. Stick with easy to digest foods?

Hi kristin84900- YOU are an incredibly Brave woman going through all those complications. My heart aches that you have kidney damage because of all of those. I agree with you that doctors often do not fully know/understand what happens with us. As a matter of fact, on my 2nd hospitalization, they discharged me with "Best Guess" Diagnoses... Yes, "Best Guess" their exact words for my Diagnoses Septecemia from leftover bile. The bile leak was 4 weeks prior.

The bile leak from the surgery they treated me with Zosyn IV broad spectrum antibiotic. It worked and I was discharged after 5 days. 4 weeks later, I had 104 degree fever, went to ER and Septecemia (bloodstream infection) and their best guess is from leftover bile and treated with the Same broad spectrum antibiotic Zosyn. These antibiotics sure take a toll on our bodies especially the kidney. It's scary that Ive had two major rounds of "Wipeout" antibiotics. They also informed me that I am Resistant to many strains and that I am very limited in antibiotics that will be effective for me.

Will take your advise on easy to digest foods. What are your staple foods (if any)?

My stomach seems to like oatmeal, soup, canned vegetables, bananas, avocados, pasta, and various starchy foods. Chicken is ok as long as it's not chicken salad. I've had good luck with this probiotic sauerkraut from Whole Foods. I'll eat that with chicken sausage. It goes without saying that fried foods are a no-no. Seems like I can eat fat, but only certain kinds of fat...?Even then, there are times I can eat anything, even the no-no foods, and have zero symptoms. Then there's also times when I eat things that generally agree with me, and I'll have "issues." I really can't identify a trigger, but I still try to stick with things that generally agree with me. Before I discovered the magic of pepto bismol, all I had to do was eat nothing but oatmeal for a few days and my issues would subside. Maybe the soluble fiber does some coating or soaking? i'm really not sure.

Thank you so much kristin84900 VERY Helpful! How often do you take pepto bismol? Always before a meal?

I've been hospitalised a few times with this. colingitus was blamed the first few times but then I went back to my surgeon and was told the scar tissue had narrowed in my bile duct. luckily it's stabilized but could need a resection any day.

hello, can i ask you if stomach noised got better or if you recommend a certain medication or something to reduce the loud noise of the abdomen