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Living Through Severe Ulcerative Colitis

Meet Sean:

About a year after moving to Portland,Oregon, I started going diarrhea 30-50 times a day while working as a mover. There was so much blood in every stool I passed, well I ignored this for about 2 years and just loaded up on anti diarrhea pills I bought at the grocery stores.

I ended up getting toxic mega colon, severe pancolitis ulcerative colitis, pancreatitis, and Crohn’s.

I now am confined to a bed but can’t lay flat or on either side, I barely sleep and when I do I get soaked in sweat even in winter like rite now with the windows open and heaters off.

Some interests of mine:

Crossfit, motocross, powerlifting,mma, swimming.

Symptoms:

Nonstop bloody diarhea, horrible abdominal pain, night sweats and insomnia, cant lay on eitherside without pain and shitting myself cant lay on back have to lay on stomach with a slight twist, never get more than a hour of sleep without being interupted with having to jet to the bathroom ,sometimes i dont make it and diarrhea, myself on the way to bathroom (which is 10 feet away from my bed). Headaches and diarhea 24/7 i go about 30-100 times a day sometimes i just stay on my toilet for hours cuz i cant stand up and wipe without having to go immediately again.

Living Through Severe Ulcerative Colitis

Has anybody else got the disease to this severe of an extent? How do you live life? I got denied unemployment cuz they know about my diseases and dissabillity hasnt accepted my claims. I almost don’t know if I’m gonna be able to pay rent.  I can’t work and can’t get any help from any government assistance, not even foodstamps, I got denied on that too.

Life is looking hopeless for me. I’m using the bathroom about every 5-10 minutes, sometimes I can’t control it and diarrhea sprays out by itself as I’m trying to run to the bathroom.  I sleep maybe 25 minutes a day and that’s interupted by bathroom visits and in my 25 minute naps i get soaked in sweat and I’m in Portland, Oregon.  It’s winter, I keep all the windows open and heaters off and still am so freaking hot and sweating. I lose about a cup of blood or more with each diarhea, im 130 lbs and in may i was over 230 of pure muscle with low bodyfat. At ohsu the nurses said during my month stay that they have never seen that much blood in stool, i was filling up to rim those white toilet hats with blood when i pooped, we are talkin 30 -70 times a day, they still cant see how im alive with all the blood losss daily, when i eat food it comes out undigested in my bloody diarhea. I feel like i would rather die than live with these diseases, having pancreatitis, pancolitis uc (severe), and severe Crohn’s and stomach ulcers on top of everything. It’s just so miserable i know they can remove my colon entirely but my stomach and pancreas and small intestines are severely damaged can they even remove that many organs? Seems extensive to have no digestive system don’t you think? Anyways Im screwed in this life at 25 years old and i truly believe its an environment trigger after moving here to portland oregon.

written by Sean

submitted in the colitis venting area