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Surgery - Great decision I made.

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Posted 8/15/2012 12:24 AM (GMT 0)
I had my surgery on 8/3. Total colectomy with temp ileostomy. 11 days out and you know what I am doing right now? Drinking a milkshake. Something I had to deny myself for 2 years while suffering. Anyone on the fence should probably do it. I don't regret anything. In 6-7 weeks I will be having my takedown, in a month or so after that I will have my life back. Don't think I went through this surgery and it was 1,2,3.. I have had 3 complications thus far - none too serious, but even with those I recommend this surgery. I am 18 and instead of being afraid to commit to do something a week in advance I can finally live!


Note - Anyone on LDN STOP IT 2 WEEKS BEFORE. I was on 4.5mg and stopped a week before as dr recommended and you know what? My resistance to the pain medicine was so high that I was at doses where they were afraid of potential mortality and STILL in pain. These is not normal, it was from the LDN. My GI apologized but it was not his fault it is common procedure to stop it 7 days before surgery, but its not enough - 2 weeks before your surgery stop it! Remember even worsening symptoms won't change the end result in 2 weeks, so an extra week of going a few times more a day is not worth the pain you will go through.
Posted 8/15/2012 12:29 AM (GMT 0)
So happy you had the surgery. How is that shake?! turn

Are you adjusting well?
Posted 8/15/2012 12:30 AM (GMT 0)
Congratulations! You're doing well and it will only get better. Enjoy that milkshake, you deserve it.

Sue
Posted 8/15/2012 12:31 AM (GMT 0)

Sibby said...
So happy you had the surgery. How is that shake?! turn

Are you adjusting well?

It doesn't live up to the 2+ years of craving it =))))) but it is great.

Adjusting fine, emptying the bag is not as much of a nuisance as you would think. The only thing that's been annoying beside the pain is since I opted for a 2 step instead of a 3 I have to pass mucus out my anus, still it'll all be worth it in a few months
Posted 8/15/2012 12:36 AM (GMT 0)
good for you man! I hope everything goes smooth.
Posted 8/15/2012 12:54 AM (GMT 0)
Awesome! Please keep us updated on your progress okay?
Posted 8/15/2012 12:55 AM (GMT 0)
By the way, is your name really Brian Legacy?

Sound like a cool last name.. Legacy.
Posted 8/15/2012 1:17 AM (GMT 0)
Congrats! They gave you a choice of 2 or 3 step? In my consult a couple years ago I was told it would have to be 3 step due to my having been on biologics, as they have noticed that sepsis is vastly less probable in a 3-step. Anyway, fantastic to hear things re generally moving along well towards having your life back.
Posted 8/15/2012 1:20 AM (GMT 0)

Somedude said...
By the way, is your name really Brian Legacy?

Sound like a cool last name.. Legacy.

No its not tongue. Brian was taken, didn't know what else to put.

Will do Red.

Thanks everyone.


Probiotic - They recommended 2 step as I was not too sick at the time of the surgery, I was on remicade a yr and a half ago aswell. That didnt seem to effect it.
Posted 8/15/2012 1:47 AM (GMT 0)
i'm so happy you are happy now! i'd probably splurge on some forbidden foods if i had the surgery, too. keep us updated on the recovery and your next surgeries. i am meeting with a surgeon in a few weeks to talk about my options.
Posted 8/15/2012 2:25 AM (GMT 0)
This is becoming such a "hey let's get surgery" forum.
This is an ULCERATIVE COLITIS forum, for those of us who want to know about studies, meds. etc related to UC, it can be invaluable here.
I believe there are many other forums for those of you who have made the decision to have surgery.
Please let's not carpet bomb the UC people with information that is hopefully something they will never need.
Thank you for your consideration.
Posted 8/15/2012 2:57 AM (GMT 0)
Congrats! What flavor milk-shake did you go for?

"Surgery" is listed as one of the treatments for Ulcerative Colitis alongside Remicade, Lialda, and Steroids - it's listed as a treatment at the Mayo Clinic, at the Cleveland Clinic, pretty much anywhere you look. The Ostomy board is for ostomies and is perhaps the closest to thing to the appropriate board for those considering surgery...however that technically would not cover "jpouch." People with UC thinking about surgery might come on here to find out how bad they are compared to others, what others in their situation are thinking about, what the other GI's are recommending for those in similar situations, etc. Posts may be more surgery-centric recently but people are examining it as a treatment option for UC. They (me included) are trying to make life-altering decisions and are just seeking information.

I do encourage anyone who is thinking about surgery to visit jpouch.org and the ostomy forum on healing well! There is alot of information on those boards - however remember that not everyone on those boards has had UC.
Posted 8/15/2012 3:45 AM (GMT 0)

ActiveUCer said...
Congrats! What flavor milk-shake did you go for?

"Surgery" is listed as one of the treatments for Ulcerative Colitis alongside Remicade, Lialda, and Steroids - it's listed as a treatment at the Mayo Clinic, at the Cleveland Clinic, pretty much anywhere you look.

Thank you.


Have a great recovery Brian, you deserve it.
Posted 8/15/2012 5:25 AM (GMT 0)
Congratss!!! On getting rid of that sick colon. If i have surgery i'd want a photo of mine so i can hang it on the wall and spit on it everyday. LOL good riddance.
What flavour is the milkshake? Yummm
What about chocolate can you eat it yet? Ohh how i crave chocolate..
Hey what complications have you had?
Posted 8/15/2012 12:14 PM (GMT 0)
Brian, I'm so happy to hear that you're recovering well from your first surgery, although I'm sorry you had so much trouble with the pain. Please keep us updated as to how you are doing, especially after your next surgery!

beatUC, I believe that if you were to poll the members, the great majority would say they either don't mind post-surgery folks posting here, or that they really appreciate it. I find it quite comforting to hear stories like this and I don't want Brian and the rest to go anywhere.
Posted 8/15/2012 12:16 PM (GMT 0)
"beatUC, I believe that if you were to poll the members, the great majority would say they either don't mind post-surgery folks posting here, or that they really appreciate it. I find it quite comforting to hear stories like this and I don't want Brian and the rest to go anywhere.
"

I agree with this.
Posted 8/15/2012 12:17 PM (GMT 0)
Lol @ConquerUC- yeah if I could, if I ever have surgery, I wish I could actually preserve the "stupid colon" (which I liken to a car that never stops sputtering and backfiring and stalling, no matter how much I get it serviced) and put it in a display case for the purpose you mentioned- alas I gather that in the real world, a removed colon is sliced and diced into a zillion pieces for biopsies.
Posted 8/15/2012 12:53 PM (GMT 0)

Probiotic said...
Lol @ConquerUC- yeah if I could, if I ever have surgery, I wish I could actually preserve the "stupid colon" (which I liken to a car that never stops sputtering and backfiring and stalling, no matter how much I get it serviced) and put it in a display case for the purpose you mentioned- alas I gather that in the real world, a removed colon is sliced and diced into a zillion pieces for biopsies.

Yes unfortunately, which is a why a photo of it (before it gets sliced up for biopsies) is what came to my mind smilewinkgrin
Posted 8/15/2012 12:59 PM (GMT 0)
I have to agree with somedude, I don't want to discourage people like Brian who chose to have surgery and it's been a success to leave the forum, to post elsewhere. In that vein, I don't even have the UC dx nor the IBS dx but have landed in a chronic health place from having had the lower 1/3 of my colon removed, due to cancer 13 years ago. I struggle daily to have some sort of normalcy in my life and have been able to glean info and insight from many, many posts on 3 forums here - IBS, Ostomies and UC. Please don't send me away as well because I don't fit the UC image, and opt for medications and treatments only. I think if we go down that slope it will be a slippery one and replies will diminish. I've also noticed that of 3 forums I've frequented here, the UC one is the busiest and I like that. If I ever need to ask a specific ?, I can and I will usually receive replies within the hour. Do you know how invaluable that is? That's why I like it here.

So I'm happy for you Brian and wish you continued success. You didn't word your topic in such a way as to encourage surgery above all else to others. Enjoy your milkshakes!
Posted 8/15/2012 3:08 PM (GMT 0)
So happy to see more posts about people being happy with their descision to have surgery. So many people are out there with severe UC suffering needlessly when surgery can give them their lives back.

Congrats Brian!
Posted 8/15/2012 8:33 PM (GMT 0)

Brian Legacy said...
I had my surgery on 8/3. Total colectomy with temp ileostomy. 11 days out and you know what I am doing right now? Drinking a milkshake. Something I had to deny myself for 2 years while suffering. Anyone on the fence should probably do it. I don't regret anything. In 6-7 weeks I will be having my takedown, in a month or so after that I will have my life back. Don't think I went through this surgery and it was 1,2,3.. I have had 3 complications thus far - none too serious, but even with those I recommend this surgery. I am 18 and instead of being afraid to commit to do something a week in advance I can finally live!


Note - Anyone on LDN STOP IT 2 WEEKS BEFORE. I was on 4.5mg and stopped a week before as dr recommended and you know what? My resistance to the pain medicine was so high that I was at doses where they were afraid of potential mortality and STILL in pain. These is not normal, it was from the LDN. My GI apologized but it was not his fault it is common procedure to stop it 7 days before surgery, but its not enough - 2 weeks before your surgery stop it! Remember even worsening symptoms won't change the end result in 2 weeks, so an extra week of going a few times more a day is not worth the pain you will go through.

Sooo how did the milkshake work out for you?
Posted 8/15/2012 9:16 PM (GMT 0)

Andrina said...

Brian Legacy said...
I had my surgery on 8/3. Total colectomy with temp ileostomy. 11 days out and you know what I am doing right now? Drinking a milkshake. Something I had to deny myself for 2 years while suffering. Anyone on the fence should probably do it. I don't regret anything. In 6-7 weeks I will be having my takedown, in a month or so after that I will have my life back. Don't think I went through this surgery and it was 1,2,3.. I have had 3 complications thus far - none too serious, but even with those I recommend this surgery. I am 18 and instead of being afraid to commit to do something a week in advance I can finally live!


Note - Anyone on LDN STOP IT 2 WEEKS BEFORE. I was on 4.5mg and stopped a week before as dr recommended and you know what? My resistance to the pain medicine was so high that I was at doses where they were afraid of potential mortality and STILL in pain. These is not normal, it was from the LDN. My GI apologized but it was not his fault it is common procedure to stop it 7 days before surgery, but its not enough - 2 weeks before your surgery stop it! Remember even worsening symptoms won't change the end result in 2 weeks, so an extra week of going a few times more a day is not worth the pain you will go through.

Sooo how did the milkshake work out for you?

Not a problem at all yeah


Bananagirl - If you have any questions regarding anything contact me and I will give you my email.

Everyone else - Thank you all for the well wishes and support
Posted 8/15/2012 9:19 PM (GMT 0)
On the way home from the hospital we stopped at McDonald's and I got fries, then we stopped at hardees and I got a chocolate milkshake! I actually cried I was so happy to be eating it without worrying about how I would feel in a few minutes!
After surgery its amazing the little things that are so wonderful! Those help get you through the surgery pain! Getting up and running out of the house in 10 minutes, taking a long car drive, going to the store. All those things made me so happy, and I still find stuff everyday that makes me think, wow I'm glad I have this bag!
Brian so glad to hear you are happy with your results! Good luck with everything!
Posted 8/15/2012 9:23 PM (GMT 0)

summerstorm said...
On the way home from the hospital we stopped at McDonald's and I got fries, then we stopped at hardees and I got a chocolate milkshake! I actually cried I was so happy to be eating it without worrying about how I would feel in a few minutes!

I can do the exact same things. All I need is a toilet near by and I'm all set. smilewinkgrin
Posted 8/15/2012 9:43 PM (GMT 0)
I had my surgery done in philadelphia so after i was released i made my hubby stop at the famous Geno's cheesesteak joint. That was so good!
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