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Ulcerative Colitis
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Posted 4/25/2014 3:20 AM (GMT 0)
Hey guys :) I made a longer post... but just edited it to a shorter one here...

Long story short: if I sell my business I'm going to try other biologics and see if I can eliminate my pains that are so hard on me every day. If those don't work I'll have surgery and move on with my life.

Any hopeful thoughts or prayers are appreciated. I'm ready to move on once the Universe is aligned as well.

Post Edited (Thoreau) : 4/24/2014 10:29:42 PM (GMT-6)

Posted 4/25/2014 4:37 AM (GMT 0)
Sounds perfect.
You're starting a new life with a great woman by your side... so why not actually LIVE that life.

I hope Simponi can work for you. Or Vedo.
Otherwise show that colon who's boss!

Happy for you.
Posted 4/25/2014 12:29 PM (GMT 0)
good news, Thoreau! Clearly this has been weighing on you for a long time- its not going to disappear, so you really do need a plan. Try different biologics, certainly- you know that Remicade is not your best bet. So quit it already! And if it does come to a surgical outcome- it's nothing to be scared of, seriously. The only caveat in your post is "If I sell my business....."- so if you don't sell your business you'll continue with the Remicade??? I'm confused. The pieces will fall into place, they really will- so many times over the past couple months I've had mini-freakouts about this, that, everything. And I had to just say to myself "Go with it, it'll work out". And it has, so far- no complaints at all. Some things you can't control or navigate, they just have to unfold as they do.
Posted 4/25/2014 3:13 PM (GMT 0)
Sounds like a good plan.

q
Posted 4/25/2014 4:14 PM (GMT 0)
I've been thinking about this more often recently since I had surgery (2 so far, one more in about 6 weeks). I used all the biological medicines and now have antibodies to them, what about if I get chronic pouchitis (it's rare but still), I have no real medications to treat them if I get it except for antibiotics. I would have to wait for new medications to be approved or have my pouch removed.

It's just a thought that I didn't consider before surgery.
Posted 4/25/2014 4:18 PM (GMT 0)
no way to think of everything ks -

maybe try mrs t man's suggestion to her new husband = quit thinking ;-)
Posted 4/25/2014 4:42 PM (GMT 0)
It is unusual for chronic pouchitis to be treated with biologics unless it's confirmed Crohn's disease *and* the antibiotics don't work. That's two very big ifs. Don't drive yourself crazy.

Thoreau, sounds like you've got a good plan.
Posted 4/26/2014 12:59 AM (GMT 0)
I'm definitely not driving myself crazy over it but it has crossed my mind recently. I kind of wish that I didn't take Humira because it did nothing for me (like many people with UC) and it seems much better at treating Chrons. If I could do it again then I'd probably skip Humira for that reason alone if I could. At the time when I took Humira Simponi was still a few months away from being approved for UC.

I'm not too concerned because the surgeon is pretty certain that I had UC.
Posted 4/26/2014 2:04 AM (GMT 0)
There are also other options on the way. That's what my doctor keeps telling me. 'You may be on drugs forever, but it won't be Remicade.'
Posted 4/26/2014 3:49 AM (GMT 0)

Eva Lou said...
The only caveat in your post is "If I sell my business....."- so if you don't sell your business you'll continue with the Remicade??? I'm confused.

Right now I am the backbone of our business, as my dad is struggling physically and somewhat mentally. If I were to try stopping Remicade and have a bad flare I just don't see how we would keep things going together. So, I will deal with the pains until I have more flexibility on this end of things.
Posted 4/26/2014 10:53 AM (GMT 0)
Thoreau: that really does sound like a great plan, and i think you are right in waiting until you sell your business that way you have one less thing to worry about. Best of luck and keep us updated...
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