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Nine days.....

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Ostomies
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Larasmom
Veteran Member
Joined : Sep 2011
Posts : 876
Posted 12/13/2015 7:22 PM (GMT -7)
Hi everyone!

Haven't been around much....been busy living life, working and getting ready for the holidays! Hubby and I have started some woodworking using pallets and making wine racks and signs (even sold a few! turn )

Anyhow, in the busyness of life, I realized this evening that it's been nine days since I changed my appliance. Now, I am pretty organized and change every 6 - 7 days but for whatever reason, time this week just flew by. Hubby even looked surprised when I told him it was nine days.

In those nine days I have:

Done hot yoga twice
Showered every day and twice on the days that I did yoga
Built, sanded, painted and antiqued three wine racks and four signs
Worked all week full time
Wrote two papers for my university course
Went to a Christmas party
Went out to dinner and took a long walk to see the Christmas lights and had a wonderful hot chocolate!!!
Cleaned the house and did the laundry (blahhhhh)
Cooked too many meals.....
Helped with homework

So, I guess when I recap my days, it's easy to see where 9 days went. It also reminds me how darn good life is now living with my ostomy and not suffering with Crohn's disease! For those new to this world, it is possible to live a normal life and to do all those things you couldn't while you were sick!

Hope you are all well!

Kelly
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Eva Lou
Veteran Member
Joined : Sep 2006
Posts : 3444
Posted 12/14/2015 6:04 AM (GMT -7)
Yay for you! It's nice to hear this- and true, you tend to forget the living hell that IBD had become for so many of us. I personally really really REALLY like my ileo! My husband & I are going away for a romantic wknd in January, I spend hours with my family, out of the house without needing a bathroom, go out to eat & enjoy it... I spend about 10 mintues a week, changing the appliance. Life is truly so much better, easier, & more fun! Yay for both of us, actually!
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 12/14/2015 5:58 PM (GMT -7)
Yeah, it is nice to hear this. It's nice to have a reminder that there are some people with permanent ostomies who are completely happy with them - I think I need such reminders right now :-/
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Eva Lou
Veteran Member
Joined : Sep 2006
Posts : 3444
Posted 12/15/2015 6:24 AM (GMT -7)
chin up, NCOT! What's going on with you anyway, hanging in there, making appt's with surgeon, what??? "Completely happy"....well, not exactly. But far happier than I was for years & years & years, with UC & it's assorted nonsense.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 12/15/2015 6:11 PM (GMT -7)
Eva, well, I've had two tests - pelvic MRI and flex sig - which showed the Crohn's was back. Was prescribed mesalazine enemas and suppositories. Judging from my reaction to the suppository, I won't be able to tolerate rectal mesalazine any more than I could the oral stuff. Got an appointment with the surgeon on the 31st December.

I know one thing and that is: I ain't trying any more mesalazine. Where I go from here, I don't know.
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cupcakespinkgal
Veteran Member
Joined : Jun 2010
Posts : 1566
Posted 12/15/2015 7:49 PM (GMT -7)
That is wonderful news!!! I agree ostomy life is good. I only have 2 days left with my Ostomy, my closure is Friday and I'm not excited. I'm really scared to need to toilet again!!!

This 3 mos with my loop has taught me that if the disease comes back I will not hesitate to say take it all I want my ostomy back!!

Congrats Larasmom, life sounds awesome right now! Very happy for you!
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cupcakespinkgal
Veteran Member
Joined : Jun 2010
Posts : 1566
Posted 12/15/2015 7:52 PM (GMT -7)
Oh out of curiosity what appliance do you use that lasted 9 days and hot yoga?!!!
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 12/15/2015 9:54 PM (GMT -7)
I think I could have done 9 days with my end ileo. No way with my loop.

Happy to hear you're doing so well :)

Good luck on Friday cupcakes.
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Eva Lou
Veteran Member
Joined : Sep 2006
Posts : 3444
Posted 12/18/2015 10:26 AM (GMT -7)
so I had a one piece Mio on for 5 days & it leaked... they always do, those stupid Mio's! Granted, it's always at home, when I wake up. So not a big deal, I just change everything. Why are you seeing a surgeon, NCOT? And hope things go well today, cupcakes!
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 12/19/2015 5:17 AM (GMT -7)
Eva Lou - My surgeon ordered a flex sig and I'm gonna discuss the results with her. Probably will talk some more about surgery, but not actually book it. Not yet. Just can't face another surgery right now and seeing what can go wrong next. I'll probably try a few more meds first before accepting the inevitable.

When you said earlier you weren't "completely happy", what did you mean? Was that stoma-related or something else?
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Eva Lou
Veteran Member
Joined : Sep 2006
Posts : 3444
Posted 12/19/2015 11:54 AM (GMT -7)
well, obviously it'd nicer if I didn't have an ostomy on my stomach! But even then, I tend to be a negative person. Not so much negative, but skeptical, cynical, etc. So even when I was perfectly healthy, way before UC, I can't say I was ever completely happy! Seriously though, I don't mind the ileo- living with uncontrolled UC for over a decade makes one REALLY sick of anything to do with the butt! I have no qualms about never using that part of my anatomy again. I've been lucky with it, the ileo, so if I had a bad one I'm sure I'd feel much differently. What will the flex sig tell you, if inflammation is back? And what type of surgery are they talking about???
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 12/21/2015 5:38 AM (GMT -7)
I'm so negative these days, it scares me sometimes. I don't come to this board much at the moment, as it seems to be happy days for everyone else except me, so what's the point? Yeah, great, other people have had a fantastic outcome and can't stop grinning about it - yay them. Doesn't help me in the slightest.

Sorry, I've had the flex sig already. I know there's visible inflammation and ulcers. What I don't know is if there's a stricture at the surgical join. I'm strongly suspecting I have a stricture somewhere because of all the pain I've been having recently. Honestly thought yesterday I might have to go to A&E over Christmas and was dreading that beyond belief.

So basically I want to know if I have a sticture; I suspect the surgeon will say no, since the report didn't say anything about it, which puts me back to square one. As for surgery, it would be a return to having a permanent ileostomy and removal of my rectum.
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Eva Lou
Veteran Member
Joined : Sep 2006
Posts : 3444
Posted 12/21/2015 9:36 AM (GMT -7)
for what it's worth, the forum can use some *****ing & moaning- it's not all sunshine & smiles! If the flex sig shows nothing, how would they see a stricture? I hope you get relief though- one way or another.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 12/21/2015 6:26 PM (GMT -7)
Thanks Eva, seriously.

If the flex sig shows nothing and they wanted to see if there was a stricture, they'd have to do yet more tests - MRI or CT scan of the small bowel being the most likely one. I don't know how willing my surgeon or GI would be to do this, and I'm not sure how much I'm prepared to push it. Sometimes I'm 100% convinced I have a stricture; other times, I'm like, 'hey what if it's actually nothing at all?'. I don't know - I just hear of other people who have really bad abdominal pain but tests show nothing. I'm not going just on abdominal pain; I also have godawful gurgling in the lower right quadrant at times. When the pain gets bad there is also a lot of pressure in that region as well. To me it feels exactly like food is having trouble getting through a tight spot.

Sorry, I went on... :-/
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Eva Lou
Veteran Member
Joined : Sep 2006
Posts : 3444
Posted 12/22/2015 6:21 AM (GMT -7)
that sounds exactly like what I felt when I had a stricture, before surgery. That was the main reason I opted for surgery when I did- my colon had narrowed to the point where my GI could barely fit the scope thru, which is what, maybe 1/4 inch diameter?? But I'd feel pain, pressure, gurgles, & a sensation of things being stuck, in one spot. At least an MRI/CT scan is totally noninvasive! Flex sigs don't go that far up either, so you could have narrowing from scar tissue that the flex sig scope isn't able to see. Whatever... it gets tiresome! Not you, just health problems.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 12/22/2015 10:10 AM (GMT -7)
But I'd feel pain, pressure, gurgles, & a sensation of things being stuck, in one spot.

Sums up the majority of my symptoms in a sentence. Things have been better today, but I ate very lightly yesterday and also kept it strictly low-residue.

I just hope my surgeon believes me; she sounded a bit sceptical when I mentioned I thought I had a stricture last time. I'm also seeing my GI in January, but I'm seeing my surgeon before him.

Don't they just? :-/ My superpower wouldn't be to fly, have x-ray vision or any of that stuff - it would be to regrow 100% healthy body parts every time something went wrong.
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blueglass
Veteran Member
Joined : Dec 2010
Posts : 3332
Posted 12/28/2015 4:02 PM (GMT -7)
Hey Kelly, glad to hear that things are going so well for you! How's the butt wound doing?
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Larasmom
Veteran Member
Joined : Sep 2011
Posts : 876
Posted 12/29/2015 5:58 PM (GMT -7)
Blue, flip me an email at the address listed. Not on here often anymore but would like your advice on the wound.

K
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blueglass
Veteran Member
Joined : Dec 2010
Posts : 3332
Posted 12/29/2015 6:04 PM (GMT -7)
OK, just did....
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