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Ulcerative Colitis
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Posted 2/20/2013 5:14 PM (GMT 0)
Hello!

Thought I would share my success story with y'all.

So as much fun as I had with this disease in the last 5 years - I made the best decision of my life! I tried all the drugs (supplements and perscriptions), fecal transplants (via colonoscopy as well), dietary changes (paleo + SCD), and LDN. Nothing seemed to be working for me and I was fed up with missing out on life.

Before deciding on surgery the past couple years I was in a flare up for 10 months, then got into a 8 month remission with LDN, then went back into a flare up 3 weeks ago and decided to go the surgery route.

Went in this past friday morning to get a "Total proctocolectomy, ileoanal amaslomosis divertus loop ileostomy". Was in the hospital for only (4) days (got out a day earlier then expected), had zero complications. So I'll have my ostomy bag for 3 months while the J-pounch heals then go back in for take down surgery which I havn't scheduled yet.

For anyone contemplating having surgery and has questions please feel free to shoot me an email - I had a great experience.

Btw I had my done by Dr. Mantyh out of Duke Hospital.

Feels amazing to not have UC anymore!!
Posted 2/20/2013 5:23 PM (GMT 0)
Good stuff man. I wish I felt good also. sniff sniff.

I ain't ready to pull the trigger though. I'm a scared little biatch.
Posted 2/20/2013 5:37 PM (GMT 0)
Congratulations
Posted 2/20/2013 5:58 PM (GMT 0)
I'm glad you're doing well! Best of luck as you heal from this surgery and also with the takedown!
Posted 2/20/2013 6:39 PM (GMT 0)
congrats!
Posted 2/20/2013 6:47 PM (GMT 0)
Grats. Still not a fan of surgery though :/
Posted 2/20/2013 7:26 PM (GMT 0)
That is great news! I really appreciate hearing the success stories because I worry about my son's future. Thanks for letting us know.
Posted 2/20/2013 7:27 PM (GMT 0)
"Grats. Still not a fan of surgery though :/
--------------------------------------------------------------------------------
"

Not a fan of feeling well? He seems great, well according to his post.

Regardless, you and I, I guess we're not suffering enough. I think if we were going 30 times a day and weighting 60 pounds and nothing would work, we would have a different approach.

Surgery comes by itself, you don't have to be a fan. It's like when you have have enough of suffering. Everyone has their limit. Some don't have a limit and go on for decades and decades of low quality of life...heh
Posted 2/20/2013 7:38 PM (GMT 0)
Congrats! Please keep us updated on your recovery.
Posted 2/20/2013 8:40 PM (GMT 0)
Thanks so much...
I'm awaiting an appointment to meet with a surgeon for consultation. A bit nervous - it's so nice to hear of a good story. Were you on Prednisone during the surgery? As a last effort - my GI put me on 60mg a day & I must say yesterday was a tiny better - today back to square one. If I didn't feel the effects of the Prednisone systemically - I would think it was placebo.
You already feel better than pre op?
Posted 2/20/2013 8:47 PM (GMT 0)
Congratulations!!! Sounds like you were in pretty good shape before surgery as you were only flaring for a few weeks, so I bet your recovery will be nice and easy. Are you med free now? Doesn't it feel awesome?? Come visit on the Ostomies board while you have your loop :) I was too ill for two steps so I'll be having my j-pouch created and the loop formed in April.
Posted 2/20/2013 9:14 PM (GMT 0)

musicmaker516 said...
Thanks so much...
I'm awaiting an appointment to meet with a surgeon for consultation. A bit nervous - it's so nice to hear of a good story. Were you on Prednisone during the surgery? As a last effort - my GI put me on 60mg a day & I must say yesterday was a tiny better - today back to square one. If I didn't feel the effects of the Prednisone systemically - I would think it was placebo.
You already feel better than pre op?

Yeah I went into surgery on 20mg of pred. They did screw one thing up though while I was in the hospital they bumped me up to 30mg. So I have to taper off of 30 now instead of 20. Most surgeons wont do the surgery if your above 30mg of pred. When I got into my last flare up (going 15-20 times a day) I was a 100 percent convinced I was ready for surgery. I went into my doc and told her I wanted to go on a month taper of pred so that I could be around 20mg when I went into surgery.

Yeah I feel way better already - no more running to the restroom for me! My recovery is going very well, taking tylenol and 5mg of oxycodine right now.
Posted 2/20/2013 9:16 PM (GMT 0)

Pluot said...
Congratulations!!! Sounds like you were in pretty good shape before surgery as you were only flaring for a few weeks, so I bet your recovery will be nice and easy. Are you med free now? Doesn't it feel awesome?? Come visit on the Ostomies board while you have your loop :) I was too ill for two steps so I'll be having my j-pouch created and the loop formed in April.

The only meds im on right now is pred, tapering down from 30mg. And yes I feel awesome. Surgery was way easier than I expected. Barely any pain the entire process.
Posted 2/20/2013 9:25 PM (GMT 0)
Yay for you - I totally relate to the numerous bathroom trips...

This flare began 3/2012 during the summer I had convinced myself that things wern't as bad as they seemed. To help me realize it - I decided to document all my trips & was floored at going over 30 times a day. At least I am not that bad right now.. was averaging 15 times the past 2 weeks and yesterday was only 7. BUT - today has been 7 already and more blood & mucus - pain when I sit and it radiates down my legs... blech

helps to know that post surgery pain will be better than the disease & drugs
Posted 2/20/2013 9:29 PM (GMT 0)

tcf5010 said...

Pluot said...
Congratulations!!! Sounds like you were in pretty good shape before surgery as you were only flaring for a few weeks, so I bet your recovery will be nice and easy. Are you med free now? Doesn't it feel awesome?? Come visit on the Ostomies board while you have your loop :) I was too ill for two steps so I'll be having my j-pouch created and the loop formed in April.

The only meds im on right now is pred, tapering down from 30mg. And yes I feel awesome. Surgery was way easier than I expected. Barely any pain the entire process.

That's fantastic, lucky you!! :)

It might not have been a mistake, if you've been on pred for a while they will usually bump up your dose and give you more during surgery because the body needs more steroids when it's under stress.
Posted 2/20/2013 10:38 PM (GMT 0)
Good for you! Sounds like you made the right decision!

We have met with an excellent surgeon and feel it will be a good thing once our son is "ready" (he wants to try a few more things first). Thank you so much for sharing your success story here. It does give the rest of us hope. Please continue to update us if you can.

Best wishes for continued healing and well being!!
Posted 2/20/2013 11:30 PM (GMT 0)
they upped my pred during surgery too. I don't think it was a mistake. Surgeons will do it if you are on high doses, but it makes it harder to heal.
Anyway, congrats glad you are uc free now! If you have ileo questions just ask on the ostomy board
Posted 2/20/2013 11:53 PM (GMT 0)
Congrats on your surgery and I hope everything goes smoothly for you! :)
Posted 2/21/2013 12:10 AM (GMT 0)
tcf5010,
Congrats! Best wishes with the rest of your journey!
Posted 4/17/2013 6:29 PM (GMT 0)
Wanted to keep y'all up to date with this..

Take down surgery is scheduled for May 3rd - very excited!!

So after the first part, I went completely off pain meds within 4 weeks (Only (1) script of oxys, then they gave me hydrocodone). I started going out with friends again two weeks post surgery. Two months after (right now) I feel a nearly a 100%. Also, it took me about two months to figure out which ostomy bag type worked best, but I have it down to a science now. Of course I'll only need my ostomy supplies for two more weeks - then no more bag!

The first pool visit was last weekend. So the timing for this next operation is pretty good, will be back to "normal" just in time for the start of summer/spring (warm weather).

Looking back at the first operation, for anyone thinking about having this done, I literally felt 10 times better the minute I woke up from surgery and not because I was high on anesthesia - well maybe because of that too :). Not running to the restroom for these past 2 months has been incredible, can't wait to complete the procedure and then move on with life - with UC in the rear-view mirror.
Posted 4/17/2013 6:41 PM (GMT 0)
Congrats -it's good to hear of your success.
Posted 4/17/2013 7:20 PM (GMT 0)
That is great news! Congrats on your new life w/out UC!
Posted 4/18/2013 1:37 AM (GMT 0)
Since this is a proctocolectomy which parts of your colon are still intakt? Or was it a total colectomy?

I'm glad you're feeling better and I hope the take down surgery goes well too.
Posted 4/18/2013 1:47 AM (GMT 0)
"fed up with missing out on life"....

I hear ya on this... Awesome about the surgery results. Congrats!
Posted 4/18/2013 1:53 AM (GMT 0)
Congrats! Must feel amazing to no longer have UC.
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