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!
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.
They think I have Primary Sclerosing Cholangitis (PSC). They want to do a biopsy to make sure and, if it is PSC, check how advanced it is. There isn’t any treatment or cure (aside from transplant) for it but the specialist doesn’t think I’ll need that for a while. Now, I just need to wait for the biopsy appointment.
I saw my surgeon again this morning. He wants to postpone any plans for pouch surgery until after I have seen the liver specialist in January. He’s ordered an MRI scan for after that appointment and then I’ll see my surgeon again in March. I’m not overly happy about having to wait even longer but I’d rather get things sorted with my liver to reduce possible complications during surgery.
The CT scan showed nothing cancerous but it’s possible I have a form of liver disease thats linked to Ulcerative Colitis. I don’t remember exactly what he called it but, according to Google, it might be Primary Sclerosing Cholangitis (PSC), but I’m not sure.