Hey I’m Justin from new Mexico. I’m writing an update from my original post “just diagnosed what do I do” I’m 26 and was diagnosed with uc early June. After the diagnosis everything was going great for the most part. The prednisone was controlling the flair pretty well, I was having few symptoms and was maintaining a healthy uc diet. I was having 2-3 bm’s a day almost fully solid and very little to no blood. Working full time and I felt like I was on my way to remission…….but it was not meant to be…
Currently I am in the hospital with toxic Megacolon. Bloody diarrhea, extreme abdominal pain, weight loss, and malnutrition.
After my prednisone taper dropped to 20mg a week all my pre-diagnosis symptoms started returning. Started to notice blood again in the poo. At first I thought nothing too much of it after all I was still technically in the middle my first flare. Then the bm’s became more frequent /urgent /bloody. I had a appointment with the g.I. in a few days so I thought if I could hold out til then I’d be fine. But the abdominal pain was becoming debilitating and the bm’s were happening at least once an hour at this point and were pure blood. Got very weak and anemic very quickly. Now I waited a long as time to seek help during my uc diagnosis so I learned my lesson from that and this time got help right away, I called into work and went to the emergency room.
Waited an excruciating 10 hours
in the waiting room crapping blood
and struggling to maintain consciousness.
Finally they saw me and admitted to the main hospital. They stabilized me and decided that prednisone had lost its effectiveness for my uc and were gonna try remicade. But the G.I. team was still concerned about the intense abdominal pain. And it was swollen and very tended to the touch. They did a sigmoidoscopy, and although I was drugged it was too painful to bear. They had to hold me down because I was squirming. Let me tell you about the pain, its the worst I’ve ever experienced. Morphine does nothing whatsoever so they tried dilauded which also did little. Now I’m on dilauded and oxycodone which still does very little.
They don’t want me on any kind of narcotics because they constipate you but I’m still having frequent bm’s so they’re allowing it. So they ordered an xray on my guts to try and find out wtf is causing so much pain. And I got the wonderful news of toxic megacolon yay!…not! They immediately cut me off all foods and liquids and stuck a tube down my nostril into my stomach to pump it out and start relieving intestinal pressure. So here I sit right now, the tube has been in a day and a half, xrays show that the swelling has not go down and the surgery team is coming in this afternoon to talk about the colon removal. Very depressing news for me. Surgery is the absolute last resort emergency option for me. But that is my update, would love to hear some feed back from you guys! Give me your thoughts and advice!
Where I’d like to be in a year:
Right now on prednisone 60mg.
written by Justin
submitted in the colitis venting area