My Left Out ‘C’

By now, the majority of people have some idea of what Crohn’s, Celiac, and Colon Cancer entails. However, I’ve noticed that even though www.livingwithpsc.org and other PSC websites have copious amounts of users, it’s not all that talked about. It got me to thinking about my own situation. I have had Primary Sclerosing Cholangitis as long as I’ve had my Crohn’s (and evidently the Celiac) but it’s never been a major concern. All my other C’s have given me so much trouble that I never really worried about the PSC.

I know that my entire colon was eaten alive with the Crohn’s. Ultimately resulting in the Colon Cancer. I know that the cancer was stage II and surgery was my only option according to my doctors at Chapel Hill. I know that the Celiac has wreaked havoc on my small intestine due to not being diagnosed early on. I, however, do not know the status of my liver. I know that a couple of hospital stays ago my liver was giving me fits but I never was told how bad it is. As far as I know, I’ve never had a biopsy done on my liver. It all seems rather odd to me that I don’t know this information.

Unfortunately, I don’t see me finding out in the near future either. That whole not having insurance thing again. I guess I’m going with the wait and see game with my liver and hope that the next hospital stay isn’t as long as the last one. Best believe I’ll be getting my answers then! 

 

**Listening to Maroon 5**

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4 Responses to “My Left Out ‘C’”
  1. I hate to say this, but it’s something you mentioned – it may be more than likely that the doctors haven’t started any clear-cut diagnostic procedures into the PSC because of your health insurance status. However, you were at some point diagnosed with it, so they did something very specific to determine you have PSC.

    If you join psc-support@yahoogroups.com you will get an enormous amount of information on the link between all IBDs (but especially the ones you have) and PSC. You will get information from both lay people who just have the experiences you are looking for and you will find many, many scientific, scholarly articles about both Crohn’s, UC and celiac (any and all IBDs) separately and as connected to PSC. There are people there who I have read for years and I have learned much more about PSC (and if I had an IBD about that) than I have from any other source. They can report the latest research and there is a partner group that raises funds and supports research. Yes! Do check it out. I think you will be happily surprised. Oh, there are the ho-hum entries, but they do really nice things like celebrate people’s transplant re-birthdays (when they start their lives anew with a new liver).

    The other possible reason you haven’t received much attention for your liver disease is that you may not be seeing a hepatologist. And GI docs notoriously are reluctant about giving up their IBD patients to the care of a hepatologist – even to share the care of their patient, you. I advocate loudly for myself, and you may want to ask some very pointed questions of your doctor/s about the diagnosis and care of your liver disease. In the digestive system, the liver is King (or Queen) – it really rules everything that happens there. I wouldn’t leave it alone, if I were you. Ah well, so long this comment! Hope it is helpful! -Dana

    • asizCreatives says:

      thank you dana. you made very valid points and i did look into that site as well as a few others. what i read confirmed what i was already thinking and, as a result, worries me. i obviously need to get checked out and get a definitive answer but… well, i’ll just leave it as i NEED to be checked out specifically for my liver. i’m afraid that an ER trip may be sooner than i had planned. ugh. i’ll keep you posted.

      • Sandi says:

        Hi, asizCreatives.

        I’m sorry to hear, one, how rough it’s been and, two, how isolated you’ve felt in your diagnoses. You’re not all alone out there! I’m not sure if you’ve ever heard of PSC Partners Seeking a Cure (www.pscpartners.org), but we’re out there every single day raising research funds, PSC awareness, organ donor awareness and more. We’ve got members from every state and all across the globe and your story sounds like some of theirs. We’ve also got an online support group via FB where there are threads on UC, Celiacs, Crohns, Insurance and much, much more in addition to PSC. You’re welcome to take a peek (you can find it at http://www.tinyurl.com/pscpartnersfacebook). You’re also more than welcome to join the group. Although we’re not a partner with Yahoo, I suspect that we’re the group that Dana mentions above. Many of our members are on both groups.

        Have you looked into Medicare or your state pool (there’s usually a state pool for those who can’t afford insurance) to see about healthcare coverage? PSC and Crohn’s, particularly active PSC and Crohn’s do make a strong case for Disability which could help you with insurance questions. You also may want to give http://www.advocacyforpatients.org a call or a peek. They’re a free resource for those of us who are chronically ill and they are very up on all the ins and outs of the health care laws and patients’ legal rights.

        Dana is spot on about a hepatologist being somebody you really want on your team. Since they’re specialists in the liver (they’re a GI with more/more specialized training), they are much better suited to your needs. In addition, if you can find one familiar with PSC, even better as PSC can be incredibly individualistic and doesn’t affect us all in the same ways and in the same time. There are PSCers out there who have been diagnosed by symptoms and progress quickly to end stage liver disease and there are those who have had PSC 30+ years with hardly a blip in their health.

        In any case, you’re not all alone out there! I hope this helps and that today is one of the good ones!

        Sandi

      • asizCreatives says:

        Thank you Sandi for taking the time to comment, I actually had found your site via somewhere in Dana’s links and have it bookmarked. The information that you provide is exceptional and I had to add you to my links on here. I’m not a big proponent of FB. I have an account but I check it maybe once a month, if that. Even then, it’s primarily to stay in touch with old classmates. I am currently only a member of livingwithpsc.org but am slowly finding new communities to connect with in the PSC and Celiac departments. As, I’ve said before, Crohn’s has always been my primary focus. But that is all changed now.
        I am currently dealing with the disability stuff. It has been a long and arduous process. I tend to get frustrated, give up and have to start all over. So I will definitely check into the advocacy group you mentioned. Thank you!
        Dana always has such insightful things to say! Love her! Per her advice, I did look into what a hepatolgist was and actually found one right down the street from me. This is promising news because in the past I’ve always had to travel long distances to get to my specialist. We moved to this new local 6 months ago and things keep happening that give me hope, as well as, a new lease on life.
        Thank you again!

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