Around 6 -7 weeks ago I started experiencing worsening stomach pain that didn’t feel like my usual crohns related stomach pain. After a week of the pain getting slowly worse and very nearly giving in and going to A&E I decided to book an urgent appointment with a GP.
The GP was really great, he was really thorough, listened attentively to all of my concerns and my long history before performing an examination and deciding it seemed to be a gall bladder or liver issue. Due to the extreme nature of my pain and the fact that I had a rapid heart rate and a slight temperature, he decided to send me into the surgical admission unit at a big hospital.
They did some bloods and checked me over and agreed that it was very likely to be gallstones and sent me home with a referal for an urgent ultrasound. I got the ultrasound a few days later and a nurse called me that afternoon to tell me I have a nice big stone and need surgery to remove It along with the gall bladder. I was told I would see a surgeon within a couple of weeks to discuss surgery and decide the best approach for me.
Unfortunately a couple of weeks later I experienced really severe pain and it was decided by me and my family that I needed to try and go to the hospital. We attended A&E and after a very long night I was put on the list for the surgeons to review me. They told me that I definitely need my gallbladder removed but that because of my other health conditions they didn’t feel that it would be possible to do the surgery during that admission. The plan was supposed to be that I would remain there for a couple of days and get good pain management from the pain team, and that I would only leave once the pain was under control, but unfortunately this was over ridden and I was sent home as soon as the pain team had spoken to me, but under the impression that my appointment had been speed up and I wouldn’t have to wait much longer.
However I still dont have an appointment. I phoned the nurse line yesterday and was told it’s normal, and that although my appointment had been expedited, they hadn’t actually made the appointment yet. I was advised to wait another week and then call the appointment booking team and ask them. I was also told that I am not yet on the surgical waiting list, despite being given the impression that I would be on it from the date I was referred to the surgeon as seeing the surgeon is just a formality, and the list is quite long so it was very unlikely I would have been called up for surgery before I was the surgeon in out-patient clinic.
Unfortunately I am still having a hard time with pain. I have been told that most people with gall stones experience intermittent pain and flare ups with breaks in between them but unfortunately my pain is constant and persistent. I am currently on very high levels of prom relief that I have worked out with my GP, but the pain still frequently breaks through those meds. It is having a massive impact on my quality of life, I am unable to sleep more than a few hours at a time without waking up for pain meds, and I am finding even the most basic tasks very difficult. My appetite is all over the place and it is very difficult to juggle the dietary restrictions for the crohns and coeliac along with the suggested changes for gallstones. I am finding though that for me, it doesn’t seem to be high fat foods that are causing the issues, and it seems much more random, I am keeping a food and symptom diary to help keep track.
I have been told several times by GPs and the hospital staff that I should be a priority, so I am hoping that this will be followed through, I will definitely let them know how much this is impacting my quality of life and the rest of my health issues, and point out that I am at a disadvantage to other patients, because most people have the option of going to A&E and having them consider doing the surgery urgently if things get too much whereas it has been made clear this is not an option for me, also the size of my stone means I am in severe and constant pain and needing a lot more pain meds than I am comfortable taking long term.
Its never nice getting a new diagnosis and finding out you need surgery again, but looking back over the last year or so a lot of my symptoms and the things I have been struggling with could be explained by the gallstones. If this is the case, I may feel a significant improvement in my overall wellbeing after my surgery and although I am trying not to get my hopes uo too high, I can’t deny its a little exciting to think some of my symptoms might actually have a fix. Until then I am just resting as much as I can and using all the tools I can to look after my mental well being as much as possible to.
Chronic musician 