I havent been out here for a while.. for some reason Kaboom has been on my mind.. Does anyone know what ever happened to him.. Great guy!
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He passed last year...
Yes, Rick was a great guy, and an awesome father and husband. Here is a link to his inspirational CaringBridge website about his struggle with liver cancer from PSC:
http://www.caringbridge.org/visit/rickkamp/journal
Jan
http://www.caringbridge.org/visit/rickkamp/journal
Jan
What happened to Rick is obviously unfortunate and tragic. I did not know much about PSC previously, and reading his story was educational but also makes me a bit concerned for a number of reasons: (1) I too have a history of UC, (2) I have a history of erratic liver chemistries on blood tests, (3) I am taking way too many meds to treat pouchitis/suspected Crohn's Disease, and I am bombarding my liver with toxins. I wonder if all of this makes me a candidate for PSC, or whether the PSC would have manifested itself already after 40 years of IBD.
It seems like Rick, after his PSC diagnosis, deteriorated very quickly. I don't know whether liver transplantion could have saved him or whether it was even feasible in his case. Ironically, one of my neighbors is an organ transplant surgeon and he told me he transplants livers. I am going to ask him if he has had any PSC patients.
It seems like Rick, after his PSC diagnosis, deteriorated very quickly. I don't know whether liver transplantion could have saved him or whether it was even feasible in his case. Ironically, one of my neighbors is an organ transplant surgeon and he told me he transplants livers. I am going to ask him if he has had any PSC patients.
Actually, Rick was going to have a liver transplant, but his cancer was too advanced by the time it was considered. He initially responded to the chemo, but relapsed later on. He was first diagnosed with PSC in 2005, when he had his colectomy (he had stage 0 colon cancer at that time). The liver cancer did not show up until 2009.
While most PSC patients have UC, only about 5% of UC patients have PSC. Even less wind up with cancer of the biliary system. Liver transplant is more often due to overall liver failure from the PSC, not cancer. Still, not a good thing.
I am not sure what you mean by bombarding your liver with toxins, since most treatments for UC and Crohn's are not toxic to the liver. Plus, UC by itself is associated with derangement in liver function studies. Most common is fatty liver disease. I have it myself and had double to triple liver function enzymes for many years after my colectomy. But, since I started on biologics for treatment of my enteropathic arthritis, I have been able to lose weight, and my levels have returned to normal. Even though those drugs can be viewed as liver toxic to some (because liver inflammation can be a side effect), for me, the opposite is true because they reduced the inflammation in my body. It is the chemicals released by the body due to chronic inflammation that really are damaging over time.
Sure, there is a possibility that I, or any one of us, can develop PSC, so we should not ignore the possibility. But, even if we do, it does not mean we will get cancer or even liver failure.
I would presume that if you have chronic elevations in your liver enzymes, PSC has been ruled out. If not, I recommend you talk to your GI about getting an MRCP to image your bile ducts. You might sleep better at night. I know I did after mine came up negative.
http://www.ccfa.org/resources/...disease-and-ibd.html
Jan
While most PSC patients have UC, only about 5% of UC patients have PSC. Even less wind up with cancer of the biliary system. Liver transplant is more often due to overall liver failure from the PSC, not cancer. Still, not a good thing.
I am not sure what you mean by bombarding your liver with toxins, since most treatments for UC and Crohn's are not toxic to the liver. Plus, UC by itself is associated with derangement in liver function studies. Most common is fatty liver disease. I have it myself and had double to triple liver function enzymes for many years after my colectomy. But, since I started on biologics for treatment of my enteropathic arthritis, I have been able to lose weight, and my levels have returned to normal. Even though those drugs can be viewed as liver toxic to some (because liver inflammation can be a side effect), for me, the opposite is true because they reduced the inflammation in my body. It is the chemicals released by the body due to chronic inflammation that really are damaging over time.
Sure, there is a possibility that I, or any one of us, can develop PSC, so we should not ignore the possibility. But, even if we do, it does not mean we will get cancer or even liver failure.
I would presume that if you have chronic elevations in your liver enzymes, PSC has been ruled out. If not, I recommend you talk to your GI about getting an MRCP to image your bile ducts. You might sleep better at night. I know I did after mine came up negative.
http://www.ccfa.org/resources/...disease-and-ibd.html
Jan
quote:I am not sure what you mean by bombarding your liver with toxins
What I meant was the high dosages of antibiotics I take, and have taken for 17 years. I asked my pouch specialist what effect long term antibiotics usage would have on my liver. His answer: "you are the Guinea Pig." He also inquired about whether I drink a lot of alcohol, which I do not, even though I posted about a recent binge in the flagyl and alcohol thread. I have had some issues on past liver function tests, with abnormalities being detected. So this thread got me thinking again of liver disease issues.
I see, particularly in light of your other thread about getting out of the negative thinking loop. It is easy to let your mind wander into the "what ifs" and worry excessively about things that have only a remote chance of occurring.
Of course, the best thing to do is to encourage your rational mind to take over and concern itself with things you actually have control or influence of. Easier said than done, I know.
Remember, nobody knows what their future holds, so you may as well assume it will be something good!
Jan
Of course, the best thing to do is to encourage your rational mind to take over and concern itself with things you actually have control or influence of. Easier said than done, I know.
Remember, nobody knows what their future holds, so you may as well assume it will be something good!
Jan