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I didn't sign on for this

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Crohn's Disease
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Posted 3/3/2010 7:22 PM (GMT -5)
Was diagnosed 25 years ago. I knew someday I might lose parts of my intestine, didn't plan on the total proctocolectomy and permanent ileostomy but am dealing . Knew my weight would go up and down and up and down and. . .. Knew I might not be able to have children. Knew the potential side effects of 6mp, prednisone, humira, and pentasa. Knew I was one of the lucky ones to have avoided surgery for 24 years. Was able to deal with rectovaginal fistulas. Knew there'd be family functions and dinners I'd need to miss and pretend I was just fine.

Didn't know I'd signed on for kidney failure, primary sclerosing cholangitis, anemia of crohnic disease, melanoma from a suppressed immune system, leukopenia, thrombocytis, malnourishment, malabsorption. . . didn't know I'd signed on for the anxiety and the strains on my marriage and my job.

how could I be so blind?

I should be thankful. I'm well. I'm miles better than I was just a month ago. My kidney functions are back to normal, the procrit is working, I'm gaining weight.

But the diagnosis of PSC was finalized today and it hit me hard. "goes along with crohn's. . .common to crohn's patients. . ." I'm tired of hearing this. I'm afraid of hearing more of it.

i'm just plain tired. Tired of driving to doctors appointments, taking notes, getting blood work, waiting for prescriptions, faxing results, getting doctors to communicate. I'm tired of being proactive, researching, asking questions, and trying to stay positive. I'm tired of people telling me how strong I am.

Thanks for listening.
Posted 3/3/2010 7:48 PM (GMT -5)
Your story really hit home with me. I admire your honesty and ability to vent. Whenever you need an ear, this is the place. I know what you mean about being told how strong you are. I used to think "How can you possibly know anything about me?" Bless their hearts, they think they are being comforting.
Posted 3/3/2010 7:54 PM (GMT -5)
I am so sorry about your primary sclerosing cholangitis diagnosis. That must have been really tough to hear that one.

I totally understand what you mean about "Tired of driving to doctors appointments, taking notes, getting blood work, waiting for prescriptions, faxing results, getting doctors to communicate. I'm tired of being proactive, researching, asking questions, and trying to stay positive. I'm tired of people telling me how strong I am."

I go through periods of the exact same feelings. The only thing that gets me turned around is thinking of the alternative. If we stop being proactive about our health care, no one else is going to do it with the same intensity we do. Therefore the results would likely be more dire due to the lack of vigilance.

Feel free to come and vent anytime you wish. Usually someone will be able to relate. Your post today described my feelings of late to a "T."
Posted 3/3/2010 7:54 PM (GMT -5)
I feel you. I don't have anything to offer except that I feel you.
Posted 3/3/2010 9:08 PM (GMT -5)
sammies,

I have also been diagnosed with PSC. I don't know much about it yet, I'm afraid to research it.
I have many health issues too and feel PSC may throw me over the edge. Is there anything that
you have found that may help us? I am tired always. tired of it all.
Posted 3/3/2010 9:34 PM (GMT -5)
dugkat--As tired, down, and frustrated as I am, I want to tell you not to be afraid and to do a quick google searc for "PSC liver." Just get a beginning sense of what's going on inside you so you can ask your doc how s/he's going to treat this. Bottom line is that some bile ducts are hardening or blocked. Up to your doc to determine which ducts (in the liver or from the liver out) and how much.

As for me I'm to try a drug urisdiol for a few weeks. If it works, I'm told I'll probably stay on indefinitely. Just when I'd gotten off all my crohn's meds. . .sigh. . . Hopefully my enlarged liver and alkaline phosophase will come down (alk phos level has been over 300 for year, my enlarged liver is significant). This drug thins the bile which should increase the functioning of my bile ducts. So far, my case is mild--there are bile ducts within my liver that show early signs of hardening or being blocked. I had a liver biopsy last May, a bunch of abdominal ultrasounds, and an MRCP in January. The biopsy, other than the signs of PSC, looks good. This new doc has to go in an read my MRCP films but he's confident things are mild. So far, I'm asymptomatic (no itchiness, no swelling, no right side abdominal pain, no liver infections, no high fevers, not effecting my spleen--can't effect my colon b/c I don't have one!).

This urisodiol's first big side effect? Diarrhea. great. . . .

I'm just beginning to understand that some of the unexplainable symptoms I've had in the last year may have something to do with the PSC AND the anemia of chronic disease (high acidity, weight loss, weakness).

We keep going. But tonight, I'm having a really difficult time doing so. We're in this together. Please let me know how your case develops.
Posted 3/3/2010 10:24 PM (GMT -5)
Sammies, I'm sorry you are having such a hard time and I hope things start turning around for you. I noticed in your post that you had melanoma and i was curious to hear more about that. I too had a melanoma but it was before I was diagnosed with crohn's disease. You don't meet too many people who have had the combo of problems. After being diagnosed how did your crohn's treatment differ? Were you afraid of immunosuppresants at that point?
Posted 3/9/2010 11:13 AM (GMT -5)
sammies, I have been on ursodol for awhile now. At first my liver function numbers went down but lately they have been running a little high. I have blood work every 3 mos. Is there a good food plan that will help the liver be healthier? I am overweight, I have RA, I have one foot that has serious joint pain. Crohn's is okay right now thanks to a resection. Just tired and in pain every day.
good luck with the new med. Keep us posted on your progress. Feel better!
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