I was diagnosed with Ulcerative Colitis in late ’08, I had symptoms starting mid ’08 but I had no idea!
My Colitis Experience:
I tossed “frequent, soft, runny, bloody, bowel movements” into Google when I started having this crazy problem with just those issues. Apparently dogs, cats and infants only have these issues. Ha. Since diarrhea was the most common theme of any and all web searches I figured it would go away eventually. 2008 my job was shafted due to the economy and I’m sure my slowly disintegrating work habits didn’t help. I was in the bathroom constantly between 30-70 minutes at a time and had no control of when or where.
I gave up on the idea this was going to fix itself and went to urgent care where they did a sigmoidoscopy then referred me to the gastroenterologist.
My gastroenterologist put me on an enema and suppository,
I told him this wasn’t cuttin it after a few weeks.
I went back to him and after some talking he then put me on Asacol without doing any exploratory surgeries like colonoscopy, a sigmoidoscopy with biopsies, nothing. 2 weeks into Asacol, bed and bathroom ridden, bowel movements already up 200% from the moment I walked into urgent care. He said give it 4 to 6 weeks to kick in… So I was blindly following instruction.
My doc’s assistant calls to schedule a colonoscopy. Sweet, maybe some real answers! The moment they mentioned colon cleansers for the surgery I cried for about 3 hours. My body was so raw already from being constantly in the bathroom I didn’t know if I could handle 12 hours of nothing but sitting on the toilet flushing my system. By the time I sat in the car to get my colonoscopy it felt my flesh had been eaten away by straight acid. Nurse puts my IV in wrong so now my arm is burning too. So get everything adjusted, I’m in the room, take my 4 deep breaths, under conscious sedation and doc says he’s ready to start.
Now you have to understand…
My doctor is 6’4 and one stocky dude; he’s got huge hands.
My nurse is holding my hand saying squeeze if anything is painful. No problem right? My doctor lubes his thumb and shoves it into my anus. I pulled my nurse onto the bed with me like she was a stuffed animal. She’s maybe 170, 5’9. I’m a 150 lb, 5’7 female I tossed that poor woman like a ragdoll. Needless to say the biopsies came back positive for moderate to severe UC.
Options at this point? My doc gives me roughly a year before my colon will likely be removed if we didn’t act harshly and quickly. Wait a minute Dr DreadUWhenICU… If Asacol is giving me 200% worse symptoms… doesn’t that basically wash my colonoscopy results?! He didn’t have anything to say to that question. I nixed my Asacol regimen completely and was already starting to feel better. It’d been 4 weeks, I felt amazing, I didn’t care I went to the bathroom 9 or 12 times a day for half hour, I didn’t feel like hell and that was good enough for me. He decided to me on Prednisone 4 weeks after I’d taken myself off Asacol to “keep the inflammation down.”
Over the next 4 weeks I gained 80lbs I can’t seem to lose,
went from anti-social to sex beast!
My UC? No change.
So that would have been great if I was a wrestler…
I nixed Prednisone and asked him what’s next? He said 6-MP, infusions or colon removal, bordering on 6-MP would be a waste of time. I got a second opinion from another hospital, they just agreed and said good luck. I said I can’t go that far yet, there has to be something… something somewhere in between. I put everything off about a year… then I had a relative died from being on immuno-suppressants in 2010 so this leaves me with colon removal and I’m not about to make that leap with this doctor. He refers me to a specialty center.
Doctors a cool guy, for the first time I’m explained what UC is in plain English, he looks at the original colonoscopy, the medications, my symptoms and looked at me dumbfounded. He said lets do a colonoscopy now that you’ve been off all medications for a year and see what’s really happening. I finally got a straight answer. With this doctor’s test I have mild to moderate UC, yay!! The left and right sides of my colon have moderate irritation. Currently I have 6-8 medium, soft bowel movements a day between 20 minutes to an hour and while that’s not ideal it’s better then what I started with… one issue I have is getting sick easily… are immunomodulators or suppressants worth the risk of turning the flu into something much bigger?
Same options for my mild to moderate UC as they were from my “moderate to severe.” Imuran, Remicade and Humira (Humira is coming out as a medication for UC in a few months.) With side effects and serious side effects listing a mile long for all of them I have no clue what I want to do. Side effects are one thing… the risk of every other cancer is increased significantly. Pills once a day, infusion every 8 weeks or a shot every other week; what do I do?! None of these seem like viable options or even worth the risks.
I’m scared as hell to do any of these meds!
So here are my questions to the world, though I do realize these can’t really be answered.
- Are the risks associated with these medications equal/greater then the risks of colon cancer worth it? (Leukemia, lymphoma, blood irregularities, liver issues, and drug-induced lupus… the list goes on for days.)
- Are the soft frequent bowel movements I could have on these medications better then the soft frequent bowel movements I already have?
- Are the people who had their life totally changed by these drugs going from severe to mild UC? Mild to ‘cured’? Moderate to mild? (Anyone notice that by the way? They never tell you specifics, just that ‘one in five patients felt better,’ what’s their range of better?)
- Are some so frustrated with mild UC that they think medication is giving them a cure so they are less stressed they’ve changed their lifestyle and their UC over time disappears? This happens a lot and not just in movies… but these “results” count toward their medications statistics as a positive.
Asacol – The worst drug I’ve ever been on in my life felt like I was hit by a freight train and left to die only emphasized by the fact it made my UC 200% worse. My doctor put me on max dosage to try and ‘get a hold of my UC.’ Worst mistake of my life.
Apriso – I wanted to make sure it was mesalamine causing issues, not the delivery system, same deal as Asacol.
Prednisone – The second worst drug for me in the UC world, gained 60 lbs I can’t get rid of, major swelling in my knees and ankles and didn’t do a damn thing for my UC. It made me feel hyped up and if I didn’t exert any energy for one day I feel like hell for three.
Submitted by “Bored in Nowhere USA”
in the Colitis Venting Area