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j pouch on the horizon

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Ulcerative Colitis
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Posted 8/4/2016 3:44 PM (GMT 0)
Hi all,

Been a while since I posted here (Hi again!). Dx'd in 2013 and have been though just about all the meds available. Entyvio helped briefly, but that was short lived. I'm meeting with surgeon at Shands Hospital in Gainesville, FL next week and we'll set a date then. Hoping for laparoscopic, but really have no idea what to expect. My plan is to be working part time (from home) by week 3 and back to full time by week 5. Does that seem reasonable? Other than UC, I'm in great health. Any other advice?
Thanks!
Posted 8/4/2016 4:36 PM (GMT 0)
That was my time line for going back to work after my first surgery. It really depends on how you respond with your recovery; pain meds and any bowel slowing agents (narcotics).

I had a 3 step surgery and step-2 was the most difficult for me; I was out of work for 7 weeks after that one but I had some complications which delayed me from going back to work.

I had to have an open surgery so my recovery was longer.

You won't be able to lift anything heavy, especially over your head for about 12 weeks after surgery.
Posted 8/4/2016 4:58 PM (GMT 0)
Good luck. You're not listing corticosteroids under your medications, so that's a huge feather to have in your cap. Faster healing and recoveries are possible without steroids.
Posted 8/4/2016 5:14 PM (GMT 0)
Thanks guys.

I have been on steroids, but not currently. I'm doing my best to keep off until surgery, but having some rough days.
Posted 8/4/2016 5:19 PM (GMT 0)
Good luck, I just went through my surgery end of last year. I had some lingering issues but I got reversed this past Feb and doing pretty well
Posted 8/4/2016 5:26 PM (GMT 0)
Assuming you have no complications, that seems realistic. I always tell people hope for the best but PLAN for the worst.

I've had my J pouch for 6 years now. It's been the best decision I could've made in regards to treating my UC. I failed all the meds so there actually wasn't much choice left anyway. Sounds like you're in the exact same boat. It's tough but totally worth it in the end.

Best of luck!
Posted 8/4/2016 5:28 PM (GMT 0)
I had a 3 step and I was back to working at home within a week of each step. If i had to go to an office, i would have definitely needed more time, but 3 weeks, you may be okay. You will have to wait and see. I was told laparoscopic, but he did preface it saying, you can't be 100% sure until you're undergoing the procedure. I was able to have laparo and everything went as planned for each step - no issues or complications. I've been UC free for almost 9 months. I am living a much better life. I used to wake up and down 10-18 pills, now I wake up and take 0.

Are you having 2 step?
Posted 8/4/2016 5:50 PM (GMT 0)
Oh, that is sooooo encouraging. I have not met my surgeon yet. I'm meeting him Monday, 8/8. My Gastro did tell me that 2 step is their normal procedure. Based on my health (other than UC) and not currently on steroids, I see no reason I wouldn't be 2 step. They said to count on surgery being 7-14 days after initial consult.
Why is that about laparo being decided during surgery? I've heard that before. Is it just all dependent on the layout of your innards? lol
Posted 8/4/2016 7:11 PM (GMT 0)
I had a lapo 2 step. And yes, they will will usually give a warning that they may not be able to do it that way once inside if they see something complicated. Try not to worry about that though. Chances are your procedure will go off as planned. :)
Posted 8/4/2016 9:14 PM (GMT 0)
They always preface lapro that way in case they need to open you up. If you haven't had any previous surgeries that could have caused a build up of scar tissue or don't have any other health issues chances are usually good they can do it as planned.

When I hd my first surgery they said my small size or a severe amount of inflammation or damage could cause an open surgery.

Second surgery they said it would depend how much scar tissue I had from my first 2 surgeries.

I was lucky both done laproscopic and no complications!
Posted 8/4/2016 9:49 PM (GMT 0)
are you looking for non-med, non-knife advice ?

if not, then good luck with your surgery - hope everything goes well !
Posted 8/5/2016 3:13 PM (GMT 0)
Thanks again everyone.

Soy, I've tried diet mods, supplements then every medicine besides tysbari or cyclosporine. The closest I've come to remission was on Entyvio for about 4 months. Even then I was still at 4-5 bms a day. That all changed the beginning of this year and I'm back up to 10-15. I'm kind of glad I feel this bad right now because it makes me feel much better about the decision to have surgery. The worst thing that could happen right is to start feeling better and still have to proceed with surgery. So.... long story short, no non-med, non-knife advice. Thanks, though!
Posted 8/6/2016 2:58 PM (GMT 0)
All this discussion is helpful to me also.Have had UC for 31 years, Last few years been slowly get flares,some controlable, some needing hospital visit.Had Colonoscopy June 13,Dr said i have a 31 yo diseased colon that might need Humira,Remicade.I don't want to go on either since my immune system is weak already bc i have no spleen.So i said to Dr i would rather go thru colon removal instead of biologics[im on 100 mg of 6mp now].He just gave me name of colorectal Dr in NYC[think it was Cedar Sinai].Dr said this Dr does 2-3 surgeries per week.Should mention had normal stool after colonoscopy then hurt my lower back about 3 weeks ago,between muscle relaxant and painkillers i have had nothing but the runs for awhile now.Will it get back to normal? hope it does-God bless and good luck to all who suffer with UC
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