10-11-2018, 05:21 AM   #1
Join Date: Oct 2018
My journey

I'm new to using this forum & thought I would share my story. I have moderate to severe Ulcerative Colitis. I am 41 & was diagnosed at 19. I have active ulcers at the rectal colon, left side, & cecum - in other words, wide spread disease throughout. I did really well for years on oral medications, or at least I did once we found a combo that worked. I was in remission for year's until my insurance company dropped my medications from their preferred drug list which forced me to try a different regimen. I've been in a flare ever since. I am currently on Remicade infusions every 4 weeks with IV solumedrol & Apriso. The Remicade seems to be doing the trick right now but I'm still having horrible body aches, night sweats, & spontaneous fevers. The GI symptoms, blood loss & resulting anemia are all at least better. To top off this wonderful disease that increases my risk of colon cancer - I have the added bonus of a significant family history of colon cancer. Significant being both my maternal & paternal grandfathers & 4 uncles. My colonoscopies have been increased to every year & my genetic screening shows that I am predisposed to developing colon cancer. Our goal is to of course catch it early while there is a much better chance of me beating it. It's a strange feeling to know that you could at some point develop some sort of cancer. It's a much different feeling to be told that it's not a matter of IF you will develop colon cancer, it's WHEN you will develop colon cancer. I've already been researching having it all removed, but my husband is resistant to me having such a big surgery & to be fair, I'm resistant to having a bag for the rest of my life. I know there are worse things (like dying of colon cancer) but I'm just not there yet in this decision. My 19 year old son was just recently diagnosed with UC as well & I'm pretty consumed right now with helping him through this journey & getting him into remission. Thanks for reading!! Have a blessed day!!
10-12-2018, 06:26 AM   #2
Join Date: Oct 2018
Location: Baltimore, Maryland

My Support Groups:
My first pre-cancerous polyp was found when I was 25, so I can certainly relate to being told you are very high risk for colon cancer. The good news is most colon cancers can be detected early through colonoscopies. Since colonoscopies are routine for most of us with IBD, I look at it as having an advantage over the general population when it comes to colon cancer detection.

Good luck with the insurance mess. I've had it out with my insurance company many times over the years. I always ask the bean counters where they got their M.D. or D.O. from if they get too nasty with me.

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