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Still nobody with Crohn's...

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Posted 9/9/2013 7:55 PM (GMT 0)
Nope!
Posted 9/9/2013 8:41 PM (GMT 0)

Smd729 and NCOT, I am doing fine.  Thanks for asking :-)

I was merely existing prior to my surgery and had time to weigh all options and make an informed decision, for my personal situation.  I knew it would be permanent and forever--for me.   No turning back, so I never went there.

To be perfectly honest, I do not even think about it much as it became my "new normal" right from the start.    While preparing for surgery I read here about a bombproof system to try, and it continues to work well for me.   I get 7+ days with my setup.

No adhesions, or hernias [knock on wood.]   My butt wound did take longer than normal to heal, but I am also Diabetic.  I have had a few incidents with what I believe to be temporary blockages.  Heating pad, gentle massage and hot tea seem to take care of it fairly quickly.   I had a little rash under my wafer, but I think I have figured out it was a reaction to my adhesive remover, which happened to be my most favorite one--of course mad

I owe most of my transition to the wonderful people on this board who went before me.  I also frequent another one, but this one has been the very best.  The archives here are a tremendous help for just about any issue that may arise.

Posted 9/9/2013 9:15 PM (GMT 0)
I have found that surgeons and GI docs are drastically different when it comes to Meds. My surgeon thinks I do not need Meds anymore but my GI completely disagrees. She is the head of IBD here and she is adamant that Crohns can reoccur at any time any place. However, I have a history of terminal ileum inflammation so it is probably different if you only have it in your large bowel.
@ncot thanks for your response I feel better today and the wound nurse said the wound looked good when she changed the dressing. Trying to keep my neurotic tendencies down!
@larasmom how are you doing? Any progress with getting your surgery?
Posted 9/9/2013 9:22 PM (GMT 0)
@crohnieCJ
It is so great you are doing well. I hope to have the same outcome when I heal up. Can I ask you what your system is. I sometimes get rashes under my bag from moisture. I use a hair dryer after showers but it never stays dry enough and by day four my flange is starting to curl at the edges. Thanks and happy you are doing well
Posted 9/9/2013 10:18 PM (GMT 0)
Thanks for asking about my surgery but alas, nothing yet. I see my GI on Thursday and I am going to ask him if he can't get me into someone where I live to refer me to Mount Sinai in Toronto. They have an IBD Center of Excellence there.

We will see. I do feel a little better today. I went to work and am having lunch with a good friend Wednesday who always makes me laugh and see things in a better light. Even went to church yesterday and that didn't inspire me very much.....

Will post Thursday after my appt.

Take care everyone.
Posted 9/9/2013 10:19 PM (GMT 0)
Thanks Tom.....that's what I figured. :o)
Posted 9/9/2013 11:35 PM (GMT 0)
NCOT, re therapy ... in the 1980's my student insurance covered it, at first it was free, and then $15 a session (I didn't go at the school either....). I had the kind of therapy that was about building a relationship and learning the kinds of emotional skills that I didn't learn in my family (and recovering from some of what happened there....). I don't even know if you can get that now, guess it was inefficient in many ways, but it really helped me have a better life. This was pre drugs, which was a mixed blessing. Without a doubt I was clinically depressed at that time, and the drugs very well might have helped, and I might have done better in school etc.... but I was able to get out of it w/therapy alone, and in retrospect, that's nice too.
Posted 9/10/2013 6:42 PM (GMT 0)
Crohnie here...started temporary and went permanent. Unfortunately I don't spend as much time on here anymore. I do volunteer at my hospital meeting people like us:-)

Peggy113 and flchuchlady are Crohnies, too!
Posted 9/11/2013 2:49 AM (GMT 0)
*raises hand* I had an ileostomy in April and was tentatively diagnosed with Crohn's. The initial diagnosis was indeterminant, but I think all of my doctors had a meeting and just decided to start calling it CD for consistency's sake. :p
Posted 9/11/2013 4:03 PM (GMT 0)
I'm in a bit of a rush now. Spent a long time replying to your topic, TheDuque... >_>

@CrohnieCJ - You're welcome :p Glad that surgery worked out well for you. Touchwood, I've had no adhesions or hernias so far either; was absolutely paranoid about lifting anything for a few months after surgery, but I do think my stomach muscles are fully healed by now.

@Larasmom - Good luck with your appointment on Thursday; will be rooting for you.

@Smd729 - I have a history of terminal ileum disease as well. My GI wanted me to go on 6MP; I said no. The meds prolong the average time to relapse, they do not prevent it. The way I feel right now I never want to go on a Crohn's med again. I'm so over them. If tests show the Crohn's has returned, then I'm considering just jumping straight to surgery next time around.

@blueglass - Ah, that was good you got therapy for so long at an affordable price. It takes years to become screwed up (not that I'm saying you were screwed up, but I definitely am <_<), so it's not that surprising it takes a long time for therapy to work. What sounds good about your therapy as well is that it wasn't stuck solely in the past, but also taught you new skills for the present.

@Equestrian Mom - Have thought about doing hospital volunteer work. Don't think I would meet many ileostomates, and might scare off the few I did meet >_>. But yeah, if ever my stoma nurse wanted me to speak to somebody considering have an ileostomy, I would do so - and try not to scare them off.
Posted 9/12/2013 2:09 PM (GMT 0)
NCOT, I think there are some ways to get screwed up in a very long time, but also some really quick ways..... would ask you to think whether it's helpful to you to label yourself this way, though.....
Posted 9/12/2013 2:58 PM (GMT 0)
True, there are some quick ways to get screwed up, but in my particular case that doesn't apply to me.

It probably isn't a helpful label, but it's hard not to feel that way, especially when I have a "difficult" personality :-/
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