I saw my GI a few days ago, and I was expecting to only see him. To my surprise, I actually had a joint GI/Liver appointment. This is really helpful for them and for me as having IBD, and Ulcerative Colitis specifically, means I am more prone to certain liver diseases, and seeing me at the same time makes it easier to assess and treat my symptoms without having to keep going back and forth.
Just over a year ago, I had some problems with my liver. An ultrasound showed it was enlarged after I presented with abdominal pains to A&E, and I had a biopsy to determine if I had something called Primary Scleroring Cholangitis (PSC), a progressive autoimmune disease that causes the bile ducts in the liver to become inflammed and eventually blocked. At the time, I didn’t think I had this as the biopsy didn’t show any signs of it – or so I thought. As it turns out, I do have PSC but it is very very mild at the moment. It means I’ll need yearly ultrasounds but that’s it unless it shows signs of progressing, then I’ll need biopsies. At the moment, there are no treatments for PSC but it is something they are working on.
As for my IBD, everything is fine. My GI wants to check my sodium and calprotectin so I’ll be doing several samples and blood tests over the next few months. In the meantime, I’ve been advised to have St. Mark’s rehydration solution or dioralyte every now and then or if I’m feeling very thirsty during the day. This should help keep my electrolytes up and save me from getting dehydrated.
I’ve just seen my GI and he has said my liver biopsy hasn’t shown any signs of Primary Sclerosing Colangitis (yay!). It hasn’t shown anything else either so what’s caused my liver to double in size and be painful is still a mystery, but I’m hoping to get more answers when I see the liver consultant later this month. This hopefully means that my reversal can happen.
I am very relieved that it’s not PSC, because my reversal is looking more possible, and hoping it’s just a viral infection or something easily treatable. Fingers crossed!
So, I have spent today doing not a lot because of having had my biopsy yesterday, and I can honestly say I’m glad I did; my right side and shoulder have ached most of today but it’s gone down a bit this afternoon. It hurts if I cough or move my torso too much but the nurses said that should get better over the next couple of days. I’m going back to work tomorrow but I work in an opticians so it’s not like it’s heavy lifting or terribly physical work.
I’ve got my second MRI this afternoon. It’s so they can take a better look at my liver but it’s the biopsy that’ll tell for definite.
I worked out that I have eight appointments coming up in the next two months; six are at the hospital, one’s a stoma check that’s been pushed back since before Christmas, and the last one is to sort out my Pills. I just hope my work can arrange my days off so I don’t have to change any of them.
I had my CT scan this morning. It took four tries to get a cannula in (my veins were not having any of it), and the dye they pumped into me was a little painful at first (because they had to use a tiny vein near my wrist/thumb), but it was over pretty quickly. I’m expecting result within the next few weeks.
For anyone going for their first CT scan, just be aware (because you nurse might not be as kind as mine was to warn you) once they start pumping the dye in, it can feel like you are wetting yourself. You’re not, it;s just the dye. It’s feels very weird. Also, my tongue went slightly numb for a bit. Has anyone ever experienced anything weird like that during a CT scan? Or any other type of scan?
My CT scan has been moved due to work commitments but it’s only by a week so not much of a wait.
I’ve finally heard from the hospital; I’m having a CT scan next week to see what’s going on with my liver. Here’s hoping for answers.
Ok, so let explained what happened yesterday; after I got to the hospital, I had bloods taken and a cannula fitted before being moved into the AAU (Acute Assessment Unit) where I experienced a major flare of pain in my stomach. They gave me oral morphine (which tasted like fruity vodka) but it didn’t seem to do a lot so a little bit later a nurse came over with two syringes of IV morphine which she gave me little by little. This helped to numb the pain enough for it to be bearable. They then took me for both a chest and abdominal x-ray before taking me up to ASU (Acute Surgical Unit). By this time, the pain had gone down enough for me to have a shower and change my bag but I was nil-by-mouth in case they needed to do surgery for any reason. I did notice my stoma was protruding more than normal but it seems to have gone back to normal so I’m putting that down to muscle strain.
Eventually, the doctors came round and I was seem a whole three times! (And on a Sunday too) They checked how my stomach felt and decided that I needed an ultrasound. They booked it for this morning but said I could go home provided I wasn’t in too much pain. Thankfully, the pain went away with the morphine and I’ve been given dihydrocodeine to take home.
The ultrasound was to check it was gall stones, which they’d remove if needed. And if it wasn’t my gall bladder, then they’d check for inflammation in my stomach. As it turns out, they actually couldn’t see my gall bladder because my liver has somehow become twice the size it’s meant to be, which would explain the pain. The consulting surgeon I saw after the ultrasound said he would refer me to a liver specialist but to take it easy in the meantime.
My boss has been amazingly understanding, as usual, so I’m taking the rest of today off work to rest my sore muscles.
I’m hoping this’ll be easily fixed and not affect my stoma or interfere with future surgeries.