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Ulcerative Colitis
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Posted 6/19/2015 1:49 PM (GMT 0)
I've been flaring since November of 2014. Blood, blood, blood. Been on prednisone the past three months and when I start to taper I get worse. Also on Imuran. Trying to get started on remicaid but my TB test came back inconclusive so I have to see an infectious disease doctor now. It's amazing how much I have bleed in the past 6 months and am still alive. How do I stop this bleeding and this flare? Feel like dying would be better than living like this. I'm definitely not suicidal, just making the point that this is no way to live. It seems my main symptom is bleeding, not necessarily diarrhea. Is this common? I rarely hear people talking about bleeding on here which leads me to believe my bleeding is more than most. If someone is bleeding like I am it would be the first thing they talked about. Stools covered in blood, blood dripping into the toilet. The toilet water looks as red as blood when I'm done.
Posted 6/19/2015 1:55 PM (GMT 0)
Have you had your TB test repeated? I had the same problem before I started inflectra (biosimilar version of remicade), my first TB test came back inconclusive so they couldn't start it straight away, but they repeated the test to see if the result was different and second time round it came back negative, might be worth trying to get yours repeated if possible?
Posted 6/19/2015 1:56 PM (GMT 0)
Trust me, you're not alone. I think a lot of us are bleeders. I know I am. I am surprised they are having you see someone instead of repeating the test. Was it one of those tests where you go back and have it read? I did a blood test last time and it was much easier and I would imagine more conclusive. The other test is dependent on being read properly. Once i bruised and it looked bad but it was negative... I am sorry you're feeling so bad. Are you on the right amount of imuran? Is your DR checking the levels? Are you using rectals as much as you can tolerate? You have a lot of options. It's too bad you've been struggling for so long. Have you had a scope to see what's going on lately?
Posted 6/19/2015 2:13 PM (GMT 0)
I did the test twice already. Should have mentioned that. Not on rectals right now. Mesalamine makes things worse
Posted 6/19/2015 3:24 PM (GMT 0)

Musicianfisherman said...
I've been flaring since November of 2014. Blood, blood, blood. Been on prednisone the past three months and when I start to taper I get worse. Also on Imuran. Trying to get started on remicaid but my TB test came back inconclusive so I have to see an infectious disease doctor now. It's amazing how much I have bleed in the past 6 months and am still alive. How do I stop this bleeding and this flare? Feel like dying would be better than living like this. I'm definitely not suicidal, just making the point that this is no way to live. It seems my main symptom is bleeding, not necessarily diarrhea. Is this common? I rarely hear people talking about bleeding on here which leads me to believe my bleeding is more than most. If someone is bleeding like I am it would be the first thing they talked about. Stools covered in blood, blood dripping into the toilet. The toilet water looks as red as blood when I'm done.



Hey just letting you know I flared for about 3 years lol...my only real symptoms was bleeding and yes to the extent that filled the bowl and covered the tp. I thought if I wasn't in pain and the urgency wasn't too bad I wasn't on any meds etc so I thought it was ok to just live with it like that... Drs tested me for anaemia and iron deficiency, both which I didn't have :) so yeah.... I just bled for like three years lol.

Currently in remission kinda changed my diet, not on meds, had a few bad flares in my time since diagnosis, but before being diagnosed I was travelling abroad and was freaking out thought I was drying from seeing all the blood regularly and there's nothing worse than googling that lol but thankfully now I have it under control :)
Just letting yu know others here have been in the same situation as you. Blood and urgency are really my only symptoms :)
I have mild proctitis :)
Goodluck,
Xxx
Posted 6/19/2015 3:33 PM (GMT 0)
I for sure am a bleeder as well. I have been bleeding since the beginning of the year, almost every bowel movement. No D, just mainly blood, and mucus. I am also on a taper of pred which doesn't seem to be doing much and looking to start on the remicade, as you are. You are not alone on this one, that's for sure.
Posted 6/19/2015 5:46 PM (GMT 0)
If you are having formed stools and seeing a lot of blood that is a little on the unusual side (not completely). Are you sure you don't have bleeding hemmies?
Posted 6/19/2015 6:17 PM (GMT 0)
I only had bleeding - a lot of it- and my doc did a colonoscopy bc we were thinking it was a flare. She put my on pred in the meantime. During my scope the doc found my colon in great shape. No idea why blood is there but not in an active flare. Soooo, just using suppositories in the am and enemas at night as needed to help with bleeding. IT helps a lot. Just a weird thing I guess but not a full fledged flare like I had a few years back.

How are your inflammatory markets in blood work? Usually that's a good indicator if your wbc and rbc numbers are off.

Good luck with referral and I hope u def don't have TB!!!
Posted 6/19/2015 6:22 PM (GMT 0)
I've had bad flares like that, filled the toilet with blood. Some so bad I had no choice but go to the hospital. I get IV steroids, liquid diet, all sorts of tests...the usual. How are your iron levels? Bleeding that much you may also become anemic.
Posted 6/19/2015 9:52 PM (GMT 0)
it's a cliche but you must take probiotics like vsl or primadophilus reuteri and stick to (really) low fiber diet
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