Hi all update ive had my gallbladder out now

Hi, thank you for your message. It looks as though you've been through the mill over the last 2 weeks.  

I know they did a cholangiogram (ultrasound) of my liver when they were operating as my liver tests were  erratic but they haven't said anything so I can only presume that all is ok. 

How was the ERCP? My surgeon doesn't expect the gallbladder removal to take away all the pain and that'll be the next test I will need to have as I'm finding now that I'm eating that I'm still having some pain after food even though I'm eating low fat.

Thanks for the link and keep me updated with your progress. Take care x

Hi thanks for the reply and wow you sound like you have been through alot. thankyou so much for your advice. Im on day 4 at the moment still getting back pain and some other pains but im hoping its just the gas still left over and my body getting used to not having a gallbladder anymore. The sound of a bile leak does not sound good i feel very sorry for you i hope i dont get any of that im glad your feeling abit better now though Im sticking to my low fat diet as im still so scared to eat so i just eat low fat soup and egg whites ect.

kath,

The ERCP went well and done in an hour. Procedure started at 9:45AM released from the hospital by 11:45.  Bile leak contained with stent placed. My drain no longer yields any bile.  However I have had issues with indigestion/stomach aches. But it has progressively got better since the Thursday procedure.  I will have the drain removed tomorrow. I'm looking forward to anew life and definitely new diet.  I like keeping up with this forum topic.  I also hope everyone gets better and gets back to a normal and happy life.🙂

take care x

Hi carol ive had a really bad night last night and all day today with right side pain where gallbladder was and i keep getting pain on and of on the right side of my back. I keep getting this headache aswell and feeling tired and weak today. My son is ill aswell and now has a cold so i hope im not getting that on top of this aswell but yes im finding it hard at the moment hun i know its still early days so hopefully this is recovery pains but i am getting a bit worried about it. xx

As Katherine says keep your water up & try really little amounts of food, also you can get a special drink at the chemist called fortisip which you literally sip and it has all the things your body needs to help boost it might be worth a go.

But if it get too much go to A&E do t suffer xx

Hi Carol, how's your daughter at the moment? Is she still having a bad time? Its only a week now isn't it before her consultant is back.

xx

Hi Katherine

She is in a bad way crying all the time as she is in constant pain, sick as soon as she eats. She should of been prescribed pethadine which would of been gentler than oramorph, which isn't helping her now.

But the stupid duty dr wouldn't prescribe it despite a copy of the prescription being faxed over to them from a const, I'm so angry and told him he has failed in his duty of care to her and that means she has suffered more because of his stupidity, so my sister is wait outside the Drs surgery in the morning with my official letter of complaint and request for the already overdue prescription to be done right away. Fingers crossed they can see past their errors and correct it in the morning asap.

I am worried about her as she is weak and drained also but specialist is back on the 23 & she sees him at 3.45 thank goodness just hope he has a good plan.

The pain starts either central chest or lower abdomen or where the GB was then radiates in a band around her entire tummy and back up into shoulders, unexplainable really & so fierce. Incredibly hard to witness & so infuriating when Drs fail her as the duty dr has, easy for them to walk away they aren't the ones in pain having to deal with it!!!

So cross.

Xx

Oh Carol, I'm so sorry to hear this, she really is going through it isn't she. I can't believe the duty doctor didn't let you get her pethidine  especially as the authority has come from a consultant. I expect/ hope that he will get a talking too from the  doctors  in the practice as this shouldn't happen. What reason did he give for not prescribing it despite the information that he had? He could've phoned the hospital direct and spoken to the gastro consultant on call who can look up her notes, there's always one on call encase of emergencies.

I expect a week to her at the moment is a very long time being that she's finding it all so difficult as least she'll see him on that day. 

I'm still doing lots of research about this encase I have it too, I've got my appointment at the end of this month so I'm hoping that my surgeon enlighten me.

I'm still having pain in the middle of my chest which I didn't really have before as well as the pain where the gallbladder was to the back and shoulders, I can just about deal with it with the pain relief I've got  but if it continued severely then I would definately be heading to a&e.

I do hope that you can get that pethadine that she really needs otherwise you'll be heading back to a&e just to get the correct medication.

Fingers crossed for her and for you so you don't have to see your daughter in so much pain.

Let me know how you get on xxx

He quoted the general medical council guidelines as he hadn't seen her or didn't know her so I said pretty useless having you as an emergency duty dr then & I advised I will report him to the CQC as he utterly failed in his duty of care to her, worse bit was the consultant got his secretary to call and make sure they all understood the urgency as he was going into theatre but instead of acting on it the duty dr sent a stroppy fax to the consultant!!

I made him open up his medicine book and also go to Buscopan for peadiatric dose As it shows the injection viles to be used for children and people who don't like injections which he also prescribe on the same one as the pethadine, so totally stupid when he read it he agreed to prescribe that one, but I honestly think he was cross with me pointing it out to him in the book so to be a jobswoth he held off the other on the GMC guide quote, idiot.

You need to be very honest with your dr as you don't want to leave it to long without help, it's unbelievable how when it's kicking in with the pain how debilitating it is for you all, seeing her all the time is soul destroying for all of us I don't know how you all do it xx

Good for you, I wouldn't have the foggiest but it sounds like you've done alot of research. My brother in law is a newly qualified gp and some of our customers are gp's so I expect I would get advice from them.

She shouldn't have been left in this way.

Let me know how you got on today, fingers crossed you've got what you need for your daughter. xx

Hi Katherine / Lynda/ Carmella/everyone.

Sorry not been on here hope you are all feeling doing ok?

My daughter has been in A&E 2 1/2 days and nights this week. Sadly different team that didn't understand SOD, so medicine given wasn't strong enough as they tried everything but the morphine, so after 11hrs of screaming pain & projectile vomiting she demanded the morphine as she just couldn't take it anymore, it worked within 10 minutes she slept and was allowed back home. Very poorly but having the endoscopic ultrasound on Mobday at 12, then consultant Thursday for plan forward, he is wanting to do the Botulinum Toxin injections to see if that will give her a respite to get over all of this and not have to have the Oddi cut yet. We will see Thursday.

GP still refused all pethadine as they don't understand how it's better for SOD & have left her to suffer. Private consultant prescribed it and it has helped, she is still asleep 1st time in 2weeks of sleeping in her bed. Her SOD specialist is disappointed how she is being treated as in A&E we were asked if she was an addict & that's why she wanted the morphine & was she being abused at home!! As her frustrated persona and agitated expression, was misunderstood for that instead of exhausted & desperate as in so much pain!!!

We explained everything again but it's draining when Drs don't get it. Thank goodness for her two private consultants Dr Van den Bossche & Dr David Westaby, they are the only ones who actually know what they are talking about and want to truly help sort her out to the best of their different specialties. We truly can't thank either of them enough for believing in her and actually trying to help her. As for the Useless GP's at her surgery they should be ashamed of themselves for letting her suffer & thinking of themselves first rather than picking up a phone to talk to a consultant if in doubt, bet if it were their child they would of prescribed the needed medicine instead!!!

Furious & to be taken further once she is stable.

Just wanted to let you all know why I had been quite, Mondays test can't come soon enough & Thursdays decisions to try and help rehabilitate her back into having a life.

Thank you all for your support & advice so far, wishing each and everyone of you the absolute best wishes for speedy recovery.

Kindest regards

Carol xx

Hi Carol, I was going to send you as message today as we haven't seen you around much this week so presumed you had probably had a tough time and I was right, your poor daughter, I feel so sorry for her especially since people in the caring industry aren't doing what they should which is caring.

I glad you put on there when her appointment is for the ultrasound and to see her consultant. Let us know how the botulinum injection goes. I've been reading alot of doctors reports online, some of its beyond me but I can get the general jist of it. One account had very good results with the injection but as it wears off is now waiting to have the sphincter cut but it was giving her some relief for a while, so hopefully it'll do the same for your daughter.

Unfortunately I think with this condition unless you're a specialist, others don't know about it let alone understand it which is why in some areas you have to go to specialist centres. But I do find it strange that people don't look it up and try to understand it but there isn't alot on the UK sites.

I'm still struggling I'm afraid and sometimes I think its worse than before, I did go to my gp the other day who changed my medication around a bit which doesn't get rid of the pain but it does take the edge off of it for me.  I did read a copy of a  letter from my surgeon to my physician which was saying that he didn't expect the right upper quadrant pain would be relieved by surgery. I've got an appointment with my surgeon in a weeks time so not long to wait but I still feel really tired all the time, I thought I would be a little further forward than I am after surgery.

Anyway, wishing your daughter all the best and hope that everything is productive for her next week and that she can move forward and start to get well.

Let us know how she gets on.

xx