Here's a bit of background. This is long, and some of it is pretty technical; feel free to skip to the last paragraph.
(I'm an engineer, so I really do talk like this, and I've done a lot of reading about the conditions I have.)
I have ulcerative colitis (UC) with primary sclerosing cholantitis (PSC). UC is an inflammatory bowel disease that causes inflammation in the colon and rectum, and after my diagnosis in 1988 I had years of bloody diarrhea, sometimes 20 or more times per day. Around 1997 I finally got it more under control, and by 2005 or so I had it fully in remission. I've had a few minor flares since then, but very little blood.
PSC is a disease that causes inflammation and scarring in the bile ducts both inside and outside of the liver, which leads to strictures, blockages, and ultimately obliteration of the ducts. This leads to liver damage and eventually cirrhosis, which is the point that my liver is at. PSC is almost always associated with inflammatory bowel disease, most commonly UC, but it's a fairly rare disease. I was diagnosed with this formally in 2001, but I have had elevated liver enzymes on blood tests all the way back to 1990 so that's likely when the disease actually started. There are no known treatments for PSC, so it just slowly runs its course, eventually leading to a liver transplant. Average time from diagnosis to transplant is usually quoted as 8-13 years, and I've survived 22 years of it, so I feel like I've had a good run. Besides the liver damage, PSC carries a high risk for cholangiocarcinoma (CCA), which is cancer of the bile ducts, and a slightly lower but still high risk for hepatocellular carcinoma (HCC), which is cancer of the liver cells. If they're caught early, these can be treated with transplant followed by chemotherapy. Fortunately I don't have either of these yet, though there is always the chance that they'll find it when they do pathology on the removed liver after a transplant.
UC carries an increased risk for colon cancer, and UC/PSC carries an extremely high risk for colon cancer. When I was diagnosed at 32, I started getting colonoscopies every three years, then when I turned 40 that became every year. In 2020 they found low grade dysplasia, which is very early precancerous changes in the tissue of the bowel, so they went to colonoscopies every six months, and my gastroenterologist went off and took a course to enable him to do chromoendoscopy to do better screening. However, up until recently there were no visible lesions, just low grade dysplasia on random biopsies. This year he insisted that I go to Colorado and get a chromoendoscopy from a doctor who does a lot more of them, and I had that appointment two weeks ago. The endoscopist was horrified that they hadn't already taken out my colon, though it's fair to point out that the research is far from conclusive on whether that is actually necessary with low grade dysplasia. Still, she wanted to get me an immediate referral to their colorectal surgeons; I declined because I wanted to talk it over with the hepatologist and transplant surgeon that I was going to see in a couple of days.
My PSC gave me no symptoms until around 2010, when I started having intense itching. This is a hallmark of liver disease, so that wasn't surprising. In 2012, I had a sudden onset of severe fatigue, nausea, jaundice, abdominal pain, and even more intense itching. I started having fairly regular ERCPs and cholantioscopies, which are procedures inspect and dilate the ducts. Those were able to keep the symptoms mostly at bay, though it would often take several procedures before they'd manage to get the instruments in to the right place to dilate. Nonetheless, they were able to keep the symptoms mostly tolerable.
In 2022, I had four episodes of ascending cholangitis, which is a bacterial infection of the bile ducts caused by them getting scarred and the bile pooling in them and becoming a great place for bacteria to grow. These infections are life-threatening, though fortunately mine were all able to be controlled by oral antibiotics and I didn't need to be hospitalized. This year when I called to make an appointment with my hepatologist, he looked at my recent records and told me that he wanted me to come to Denver for an evaluation for a living donor transplant. After my insurance dragging their feet on approving some of the required tests (they still haven't approved one), I got an appointment set to do the evaluation. Happily, the next appointment coincided with the trip for the colonoscopy, so I went up there fr a week and got both things done.
At the colonoscopy they confirmed low-grade dysplasia in my ascending colon and indeterminate dysplasia in my transverse colon, which is exactly what my doctor in Albuquerque has seen. However, now the lesions have grown to the point that they're visible, so that represents progression of the disease. The liver transplant team agreed that I'm a good candidate for a living donor liver transplant, but they want me to have the colectomy surgery scheduled before I get listed. The formal listing for a liver transplant will happen before I have the colectomy, though, because there's a risk that my liver will shut down as a result of the surgery and they'll have to do an emergency transplant to keep me alive.
The reason the colectomy has suddenly become so important is twofold: one is that we're seeing progression of the dysplasia, which is always worrisome, and the other is that any dysplasia will advance to cancer much faster once I'm immunosuppressed after the transplant. The timing is set by technical aspects of the surgeries; living donor liver transplant surgery ends up with bile ducts and blood vessels wrapped around the colon in a way that would make it very challenging for a colorectal surgeon to remove the colon without damaging other things.
So, the upshot is that I need a colectomy because I'm at very high risk for colon cancer and it's better to remove it before it's cancerous than after. I need a new liver because mine is damaged enough that I can no longer keep the bile duct infections at bay. Once I find out when the colectomy will take place, I can start looking for a living donor. Because my PSC increases the chances of pouch problems, I am probably not a very good candidate for a J-pouch, so that leaves me looking at an end ileostomy and complete removal of my rectum and anus along with everything else. Basically, my digestive tract will end at the end of my small intestine, where liquid stool will exit through a hole in my abdomen and be collected in a bag taped there. Three to six months after the colectomy, they'll do another surgery to put a new liver into me - or at least 60% of a liver, since we're planning on a living donor transplant.
