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Want off this "E" ticket ride!

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Ulcerative Colitis
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Posted 5/4/2010 6:44 AM (GMT 0)
I surely do hope some of you get the "E" ticket reference.......If not, let me know and I will explain.

No! Seriously I'm off.  Got the call from my GI today and he tells me I have to change forums........

My small intestine is apparently a real mess, as he suspected, and am to start Rowesa as soon as I can get to the pharmacy to get it.

So I guess I will take my toys and go.....................up to the crohns forum.

I know many of you (most all) have been fighting the fight a lot longer than I have.  But I am sooooooooooo tired of fighting right this moment.  I was trying to prepare for the worst and hope for well, the lesser of 2 evils............turns out I wasn't as prepared as I thought to actually hear the words.  Or to hear a doctor try to reassure me it was a big bad diagnosis and is tough to hear, but he will make it better.  He hasn't had to resect a bowel yet he tells me.

I totally don't know how to feel at the moment, my head is still literally spinning....I got the news while here at work almost 7 hours ago..........the game face won't stay on for very long.

I am sure I will get the skinny on the Rowesa but would really like to hear the personal experiences with it and side effects.  I am asking here cuz I kinda "know" a bunch of you already and it looks like a whole different crowd up there to get to know people all over again.

Actually, I won't leave completely, if you'll still have me around.

Posted 5/4/2010 8:02 AM (GMT 0)
I guess it's confirmed now.....

Is your entire colon is involved as well? or just the lower colon and part of the small intestine? Did the doc state how much small intestine is involved?

If you can take 5ASA meds, the Rowasa shouldn't give you any grief...except to try and hold it through the first possible waves of having the urge to expel it.

What other meds is the doc putting you on....Lialda won't be enough to deal with the ileum. I think Pentasa disperses at the beginning of the ileum rather than the terminal ileum...it's another 5ASA, hopefully it's available in the US.

The other option is entocort, a steroid oral topical....deals with the ileum and colon.

You can frequent BOTH forums....others with Crohn's colitis have since we share colon involvement. Besides, you have to tell us how you fared with the Rowasa.

quincy
Posted 5/4/2010 9:29 AM (GMT 0)
He made it sound like the small intestine is pretty well ulcerated throughout.  The colon only really showed inflammation at the terminal iluem(?) (where the small transisitions to the large) He said MODERATE, but I was led to believe (through tone and demeanor) that it is far from good and a bit more serious than he letting on.

I will be taking 8 pills a day.  I thought he said Rowasa treatment as it was supposed to release sooner than the lialda.  I may have gotten the med name wrong as I was literally getting light headed while he was talking to me on the phone.  I will be staying on the Entocort longer than expected.  I was supposed to start tapering this month but will delay until I make it a month symptom free.

I will still frequent both forums, I was trying to broach the subject with a bit of humor.  Up in the CD forum I started a thread saying my landlord evicted me and I need a new place to stay. smilewinkgrin

Posted 5/4/2010 1:20 PM (GMT 0)
I know it sounds like a worse diagnosis because surgery is not a option for Crohn's and you probably feel like a ton of bricks fell.
So can I give you a little good news that I ran across? Perhaps controversial medically but...

While reading "Life Without Bread" which explains how gluten can negatively affect our guts and create conditions that favor UC and Crohn's disease the authors, a German or Austrian MD and an American PhD maintain that Crohn's people get better faster when they go gluten-free than UC people, quite a bit faster.

I can attest that my recovery (I'm UC) has been slow and positive after a very good beginning. UC people can take over a year to see results so I guess I'm a little ahead of that at 4 months.

Best wishes. Stick around and share.
Posted 5/4/2010 1:35 PM (GMT 0)
Hi md,
Just want to give you a hug and hope that we will still get to 'talk' with you.
(((hug)))
Posted 5/4/2010 1:40 PM (GMT 0)
Well thanks!!  (blush)

I was wrong about the meds, it's supposed to be Pentasa.  He actually left a message on my home phone.  So anyone with PENTASA experience, please tell me how it is.

My life would not be complete without bread.  Turkey sandwiches keep me alive when things are bad.  Seriously.

Posted 5/4/2010 1:42 PM (GMT 0)
So sorry... Sounds like Rowasa is not what you were thinking of as it is an enema and your problems are not in that region. It is good you have a diagnosis and are now aware of what the real problem is. Stay strong!
Posted 5/4/2010 5:00 PM (GMT 0)
I'm confused...seems like you have no colon involvement then? the terminal ileum is the small intestine.

My suggestion is to get a copy of the report from the doc so that you are perfectly clear on what's going on and where exactly your CD is located.

It's not usual for the entire small intestine to be affected....have you been tested for celiac? that in itself can cause damage to the small intestine.

q
Posted 5/4/2010 5:43 PM (GMT 0)
hi i take pentasa tablets ? is that what ur going to be on? i am fine with them xx
Posted 5/4/2010 6:02 PM (GMT 0)

quincy said...
It's not usual for the entire small intestine to be affected....have you been tested for celiac? that in itself can cause damage to the small intestine.

Don't rely on tests. I had the test and it was negative. So I did not bother going gluten-free for YEARS. Jan 2010 I went gluten-free and bleeding stopped. My DH saw an article online that said MANY UC'ers were underdiagnosed celiacs because the tests were not picking up gluten-sensitivity. I am living proof of that.

I was also tested for lactose, again negative results. I remove lactose from my diet also and got better.
Posted 5/4/2010 8:41 PM (GMT 0)
I feel the same way. Why get a test when the test results won't change what works and what doesn't work?
Posted 5/4/2010 9:49 PM (GMT 0)
Q, I checked my original paperwork.  His pictures and diagram showed colon inflammation (I don't know the terminology yet)  all the way at the beginning of the colon just outside the small intestine and at the very end of the descending colon just prior to the anus.

The pill cam showed many chanchers and ulcers throughout the small bowel, more so at the tail end, ileum, end quote from the message on my answering machine.

Posted 5/4/2010 9:58 PM (GMT 0)
I understood the "E" Ticket. Still have a few tucked away, thought they might be worth something, but ebay says no.
Good luck to you! I'm a fan of gluten-free.
Posted 5/5/2010 5:30 AM (GMT 0)
I'm glad to hear you have some....any other coupons left in that book?
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