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
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
sally34396 debra1711
Edited
Hey everyone, lovely to hear all your experiences. I'm not sure if this has been mentioned to any of you, as we know this surgery is so rare but I've developed pernicious anemia due to my liver not being able to retain b12 since my surgery 14 years ago. Please get this checked if any of you are showing symptoms. I'll try and advise as much as possible from my own experience but it gave me so many symptoms I was told that it was all in my head. Oh and sorry but the gurgling stomach is still happening to me all these years later.
Be kind to yourselves, we've had a tough time and not many people understand what we have to live with. xx
VeryBlessed sally34396
Posted
Hi sally34396- YOU are giving us a precious Gift by giving us this advise- Thank You! What are the symptoms of pernicious anemia and what labs to order to have it checked? It is indeed a challenge for other people to understand our predicament and all that we have gone through- we belong to the exclusive club lol. I am often frustrated when other people judge me that symptoms are all in my head and psychosomatic. It is Refreshing we have this forum to support each other warm hugs to all
sally34396 VeryBlessed
Edited
Extreme Fatigue, pins and needles in hands, feet, even lips and face. memory issues like brain fog. Forgetting basic words. Depression. The list goes on. you would specifically need to ask your GP to test your B12 Folic Acid and Ferritin. these normally come under a full blood count depending on your area. Anything around the 150-200 mark is low and this would mean loading doses with injections. I've stopped asking at my GP as i now self inject. Hope this helps.
kay80562 sally34396
Posted
HI everyone. Its been a while since Ive posted. If you scroll to the top of this thread you'll see my story. Since I posted several months ago I have been doing well. But i do have some of the sane issues as you have described. I'll be feeling fine for a while and then be miserable with nausea for a week or two. It usually subsides in its own. I take protonix when this happens and that helps. Oatmeal is my friend too. Eating it daily seems to help, but there are a lot of foods I avoid .I feel grateful that I'm doing well but honestly worry that whatever (never really knew) caused my sepsis last October will reoccur.
VeryBlessed kay80562
Posted
Hi kay80562 Thank you for sharing with us that you are doing well. I had Septicemia also and like yourself worry about it recurring. I heard that HJ survivors definitely need Follow-Up care at Hepatobiliary Center where they specialize in this care and avoid post op complications.
Anyone here familiar with Hepatobiliary Center/Clinics?
rose32018 debra1711
Posted
good evening everyone, it is so great to hear everyone's experiences makes you feel less alone . I was told rare condition, rare surgery 13 years ago didnt quite believe it and I too have drs asking me what a hepaticojejunostomy is.....I don' t know about spelling it.....it took me years to say it!!!! just had mri and yes still developing stones in a couple of segments. listening to everyone it seems to me that the surgery saves lives but has long term impacts for a lot of us. but when I consider that I was close to death twice, septicemia twice and in a hospital bed for nine months....as I said above it is good to be alive. I have to make a decision about further surgery with the top guy in November. I have had my stomach opened three times and have two incision hernias so stomach a bit of mess and worried about cutting into scars for a 4th time. if I dont have surgery I continue with pain etc as described before but always with risk of septicemia and liver abscess again. if I have further surgery to remove the two segments it may be end of pain......but listening to you guys....not necessarily so.......but complicated due to hj surgery. nice to talk to people who understand .
VeryBlessed rose32018
Posted
Hi rose32018 Thank you for sharing with us and very sorry to hear your mri shows you are developing stones again. Is your surgery in November to remove the stones? Is ERCP (to remove stones) no longer an option for us that had hepaticojejunostomy? You are right we are all indeed very lucky to come out alive from HJ surgery and because it is so rare, not a lot of people understand the complex symptoms we have. I had my HJ surgery 10 weeks ago. Is your incision hernia from HJ surgery? Myself, I had Septicemia 6 weeks ago (4 weeks after HJ surgery) and it really was difficult so I can totally relate to everything you describe. When you say risk of septicemia and liver abscess again are you referring to not opting to have the stones removed? did you have symptoms of liver abscess?
Please know you are NOT alone going through this. We are here for you in this community. My heartfelt prayers for you. Be well everyone. Put YOUR health on Number 1 Priority Always.
rose32018 VeryBlessed
Posted
hi VeryBlessed, 10 weeks very short time.... please be kind to yourself in your recovery period. 0nce you have HJ , you anatomy inside is changed. I was told that if I had further problems with stones either they would access through chest or liver transplant....ercp no longer viable. to be fair that was 13 years ago and even though rare from this forum alone this surgery is happening more often. also it seems that we all have different issues regarding the why of having hj. do you have hepatic stones? hepatic stones can get infected, can cause a liver abscess .which in turn can cause septicemia. this happened to me and was the why I had the surgery. incision hernia due to infection after surgery. you are 10 weeks recovery so I think very unlikely this will happen to you because your epidermis is healed. I have not had any bad issues like abscess or septicemia since surgery so therefore successful. moving forward ....I can live with long term difficulties which generally are livable or consider more surgery if that is a possibility for me. I am monitored yearly by mri to watch the stones. please rest and recover, listen to your body it has been though a trauma and needs recovery time....however long it needs.
robert_44740 rose32018
Posted
Hi @rose32018
I just read you have two incisional hernias after your hj surgery . I found out recently that I also have a incisional hernia . I will be having surgery some time soon. My question is how was the surgery to repair your hernia ? Did you have a long hospital stay ? How long was your recovery ?
rose32018 robert_44740
Posted
Sorry to hear that. Surgery twice to repair, both failed i am sad to say but surgery itself not bad, recovery time just a few weeks. Seriously nothing compared to hj. Good luck
robert_44740 rose32018
Posted
I'm sorry to hear they failed . So basically the hernia came back again ? I've been very nervous about my hernia surgery . Did you have to stay in the hospital much after the hernia repair ?
VeryBlessed rose32018
Posted
Hi rose32018 Many Thanks for your reply. May you be forever Blessed.
VeryBlessed robert_44740
Posted
Hi robert_44740...we pray for your successful surgery. Is your incisional hernia from HJ? What are the symptoms?
robert_44740 VeryBlessed
Posted
Hi VeryBlessed I really appreciate the prayers. Yes, I had HJ surgery followed with a major complication. The hernia didn't really have many symptoms . Just a bulge. Did you have hj surgery ?
rose32018 robert_44740
Posted
Morning i only stayed in overnight, the hernia ops were way easier to cope with so please do not worry. Just because mine failed doesnt mean that your wont work. Unfortunately i have a rather large hernia. I think you are sensible to get it repaired. I wish you luck. I was nervous as only someone having a hj will understand.....but hernia repair is nowhere as bad as hj......good