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absolutely positively flaring... but scopes in a month...

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Ulcerative Colitis
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Posted 5/12/2015 5:25 AM (GMT 0)
so I've been flaring for the last month. I was in the hospital a month ago today. I was on prednisone (short course, high mg) and shortly thereafter was taken off my Pentasa and put on Lialda because of insurance issues. I've been flaring ever since. Loose stools, bum sores, red blood in my stools, living on immodium... the works. I am at my wits end but I don't know what to do. I'm scheduled for my scopes in a month and the last set of scopes was a waste because i'd been on prednisone right before them. Since they are questioning my diagnosis due to the stupid prometheus testing, I can't have these scopes show only scarring again. I almost question whether living in agony for a month will be worth them finally believing the diagnosis again and treating properly. Unfortunately, my GI is ill and is only doing procedures once a month so I have to wait.

don't really know what i want out of this post... sort of just needed to vent, sort of looking for advice, but i don't think anything can really be done right now.
Posted 5/12/2015 10:31 AM (GMT 0)
Are you sure you're seeing the right GI? Given UC can often be accute and need immediate care, a good GI should always be available or should partner with someone who can see you and do a colonoscopy when needed.
Posted 5/12/2015 12:18 PM (GMT 0)
Yeah. You don't need your GI for a colonoscopy. Many can do that and then your GI can read the results. Sorry your doc isn't doing well but that shouldn't mean your health has to suffer. Are you saying they are trying to figure out if you have UC or Crohns?
Posted 5/12/2015 3:31 PM (GMT 0)
Were you flaring before you changed medication? If not, maybe you can get your GI to help get your pentasa covered and that may help?
Posted 5/12/2015 4:15 PM (GMT 0)
A month wait for a scope is ridiculous. My gastroenterologist always has emergency spots open in his schedule for things like this. Flexible-sigmoidoscopies can be done in office. Be persistent, ask to be put on a waiting list, should someone else cancel. Be like a hornet in their ear until you get the care you need.
Posted 5/12/2015 4:49 PM (GMT 0)
they claimed when I called after the hospitalization that I didn't have IBD at all (neither Crohns or Colitis) which was dumb because they've seen inflammation and scarring in previous scopes. I was flaring before the med switch but had started feeling a bit better after the steroid treatment. I live in a very small town. My hospital only has one GI and he's ill. He's trying to keep on all his patients but it's hard. I don't want to change hospitals because all my doctors are connected to the same hospital.
Posted 5/12/2015 5:25 PM (GMT 0)
That's awful rpgdancer! It doesn't sound like they have a clue what they're doing and you're the one suffering in the meantime, going back and forth with DX and obvious inflammation and even scaring!!! I can't believe how disorganized they are with taking care of you properly...I know it can be harder in small towns but with a serious health issue you need serious care.

Hope things gets sorted out soon and you soon find relief, I feel so bad for you in the situation you're currently in.
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