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Thoughts for new people without a concrete UC diagnosis....

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Ulcerative Colitis
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Posted 5/13/2017 11:59 AM (GMT 0)
I know how frustrating it can be to want to zone in on a definitive diagnosis with this stuff. My problems have been going on since 2008 and my GI has called it "acute proctitis", "cryptitis", "proctitis/colitis".....but so far he hasn't deemed it an official IBD.......despite evidence of architectural changes determined by biopsy.

But with this current ominous change to our health care looming, I would be better served by NOT pushing for a diagnosis, because IBD's are a preexisting condition.....and those others are not.

Now, in my personal case, it's irrelevant as I have a congenital heart defect, so I already do have a PEC. But maybe some of you don't?

My treatments for this are the very same with or without that 'label'......something to think about. Read this thread....very enlightening. I woke up this morning thinking about it !

https://www.healingwell.com/community/default.aspx?f=38&m=3843651
Posted 5/13/2017 12:09 PM (GMT 0)
I'd just say patience, you'll findout what you have in time. And be glad it isn't IBD as it's a royal pain in the arse.
Posted 5/13/2017 1:16 PM (GMT 0)
Yeah, I'm sure it'll get sorted out in time. But if I was a person without solid health insurance and no other existing conditions.....I'd be GLAD I had no IBD diagnosis and wouldn't push for one (as long as the treatment was the same regardless).
Posted 5/13/2017 2:36 PM (GMT 0)
I'm in your shoes.. and It can be incredibly frustrating KNOWING something isn't right and not having any real answers, but unfortunately it is this way for alot of people.. everyone I know personally that has been diagnosed literally wasn't diagnosed with true IBD until a medical emergency ( I only know 3 people in person, but still .. )

I feel like it's probably a pretty hard condition to truly diagnose if its "uncomplicated". My brother was diagnosed after losing so much blood he needed transfusions, my boyfriends sister with chrons wasn't diagnosed until she had a blockage that needed to be surgically fixed, my friend with chrons wasn't diagnosed until something similar.. she had severe infection or something, now she has a total colostomy.

It's scary not knowing, frankly. I was in emerg last summer for my first "flare" and the doctors in the ER literally said to me at that time " It's not surgical, so unfortunately there is nothing else we can do right now " .. I was put on a wait list to see a specialist at the time, and still haven't gotten the call regarding that wait list. It took another, true emergency to see a specialist and get my first scope .

But all that said, it is possible to have colitis and not have IBD (as I'm slowly finding out now) .. I have been, and still am in disbelief considering my brother has UC and with my symptoms/ inflammation present... but the doctors seem to think my colitis may actually be infectious! (I'm doubtful, but trying to accept it and just wait for the biopsy confirmation)

We have to be our own health advocates, but sometimes we just have to accept the way things are presenting and like iPoop said, be grateful that it's probably not IBD because it's not a condition that should be wished upon anybody!

Side note: Suffering with crippling symptoms and not getting real answers can be incredibly mentally straining though, which in turn can sometimes make symptoms worse .. have you considered meditation? yoga? talk therapy? (please believe me, I am not saying it's in your head, I just find the above things truly help me come to terms with the way things currently are and help me to relax.. stress does not help with GI stuff!)
Posted 5/13/2017 2:57 PM (GMT 0)
Hi piper, I actually wrote my whole history on your post yesterday. In fact, your post and the replies had good insight for me for my upcoming GI appt Tuesday. So thanks smile You can read my biopsy results there.

I need to create a signature but don't want to without solid IBD dx, but yes, I took mesalamine (oral and enema) for 6 weeks. Every time I stop ---the symptoms are back in full bloom. This last time without blood though.

At the moment I have stopped them completely due to kidney pain (had bloodwork last week) and hope to have results Monday to take with me to my appt. I have some other symptoms that need to be looked into like Terry's nails and butterfly rash and a few others. Long story but was diagnosed with skin lupus in my 20's. Now wondering if all these things including my colitis may be linked?

But the whole point of this post was to sort of warn folks without a diagnosis to be careful about pushing for one. Especially if it wouldn't change their treatment protocols. It'll be considered a pre-existing condition......and with serious changes possibly coming, it's something to consider.
Posted 5/13/2017 4:04 PM (GMT 0)
Meh. Even without IBD I (and so many others) would still have a PEC because innocuous conditions like acne, allergies, and irregular periods are on the list of pre-existing conditions. Though I guess this is good advice for the rare person who has never had medical problems of any kind.

Not saying your logic isn't sound, just that the AHCA will screw a lot of people with normal, common conditions.
Posted 5/13/2017 6:40 PM (GMT 0)
What????

I had no idea such silly and benign conditions were on the list. That is absolutely maddening. I have a congenital heart defect and was diagnosed w/ lupus of the skin in my 20's so I was out.....but I have great insurance that isn't going anywhere.

I am off to look for that list......
Posted 5/13/2017 6:49 PM (GMT 0)
Poo'dPiper, oops....I actually posted my past history on Joe's thread and not yours. Lots of new people here right now, it seems...
Posted 5/16/2017 1:03 AM (GMT 0)

ArtsyFartsy said...
Poo'dPiper, oops....I actually posted my past history on Joe's thread and not yours. Lots of new people here right now, it seems...

I was wondering why I didn't see that~ but yes, alot of us seem to be going through very similar things right now. We are not alone!
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