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.
Biopsy all done. It’s a little uncomfortable but I’ll be ok in a few days. I’m hoping to get the results during my consultation with my surgeon next month.
I’m waiting to be picked up by my parents who are coming with me to the hospital for my biopsy today. I know what to expect so I’m not feeling nervous, but I still don’t want to have it done because it’s a whole day in the hospital.
I’m allowed to drink water until 8:30am (so, for the next 20 minutes or so), but I’m not allowed to eat anything until after I’ve had it done. I’m just having a read through the Patient Information leaflet I was given at the pre-assessment.
I’ll likely be home from work tomorrow so I’ll try and keep you all updated.
The only good thing thing about having an appointment early in the morning is that you’re going home when everyone else is going to work. I’m on my way to my second appointment of the week (and of the day) with the third one tomorrow morning, which will ultimately be an all day thing because they have to observe me for six hours after they’ve done the biopsy. I’m starting to wonder if I should get my mail forwarded to the hospital, I spend so much time there.
Yet another MRI.
So, it turns out that last MRI I had didn’t capture all the images they wanted so I have to have a third this Monday morning. It’s not that I mind having it done because I now know what to expect, it’s just I don’t want to have to go to the hospital again. I’ve got three days in the next week where I’m not working but all of them will be spent at the hospital; tomorrow afternoon is my biopsy pre-assessment, Monday morning is the MRI, and Tuesday is the biopsy proper which will be a whole day. I’m going to try and go to bed early this weekend.
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.
The biopsy is booked! I had to change the date because they gave me less than a weeks notice and I couldn’t get the time off work, but it’s only a few weeks to wait. I’m hoping it’ll give me a diagnosis but, although I’m hoping it isn’t PSC, I’m not going to get my hopes up.
I’ve got another one for my liver. This one is apparently meant to be a more precise scam so they can look at my liver in more detail. They still want to do the biopsy, I think, but I don’t have a date for that yet.