How long until you could 'get on with your life after takedown?'

For me I was good to go two weeks after takedown. It was back to life as usual. I had a rough go of it after my first step so I was very grateful takedown and recovery from that was easy. Best of luck! 

Two weeks is really a best-case scenario. Expect six weeks of true recovery and you might be pleasantly surprised. Allow for some months of adjustment afterwards, when you'll most likely be ready for a pretty normal life, but still learning how your new innards work. YMMV. 

For me, I was very surprised how quickly I was "normal" again.  Step 1 was brutal but after takedown, I would say 2 -3 weeks before I started to realize that I no longer had UC. I could trust that I didn't need a bathroom within 12 feet!  I struggled with butt burn and discovering which foods I tolerated best but as far as getting back to living life, I'd say a few weeks.  I am 6 years post take down and couldn't be happier, BTW.  It was worth the hell of Step 1!  Hang in there-you'll be back out there soon.  Best of luck  

One year. I was pretty sick going in, had three step with an added bonus of an extra surgery in between two and three to clear up an internal abcess. I was very weak after that as insurance made us try to clear the abcess up with antibiotics for 6 weeks. I lost 30 pounds in 30 days and was barely able to be up for more than 10 minutes. After 4 open surgeries in 8 months, I was a mess.

Thanks for all the replies. I really hope it works out well for me as I can't wait to get back on with my life. I was previously coaching soccer in Cincinnati (I am for the U.K) but had to fly home due to UC 2 years ago, i really want to get back out there. I just don't want to rush getting back incase anything happens in the early few months. In terms of dealing with problems with the pouch (if they ever arise), how expensive is the treatment to buy in US (Cipro e.t.c) ? I just want to make sure if i go back to US i won't have to travel back home as treatment for our little issues is too expensive!

Good luck to you! 

I truly wish you the best and don't have to come in here for advice! 

That's a GOOD thing. 

Richard. 

it took me 2 to 3 weeks , but watching my diet really close and drinking lots of insure plus to speed things up

Anthony, Cipro, Flagyl, Imodium, and Metamucil are cheap. Xifaxan and Canasa and VSL #3 are expensive.  Additional surgery is most expensive of all. In all likelihood you won't need anything expensive. It's hard to price an unexpected problem.

One month or so- I did have a blockage about 3-4 weeks after takedown which I suspect was from feeling too good, and then, as a result, overeating by indulging a very large meal (I suspect that combined with residual swelling and scar tissue from surgery produced the blockage).

In the 23 years since I never had another blockage.

Anthony,

You asked about the cost of addressing Jpouch issues in the US. I assume you have health insurance & hopefully a prescription plan.  If not, you will need health insurance because pouch may need tweaking here & there & as you well know, living in US for some time now, health care is expensive.  Re: pouchitis-Cipro & Flagyl are common meds for Pouchitis and they cost me $10 each because that's my co-pay. Not sure what retail / full cost would be but they are older drugs so I doubt they are super-expensive. Having said that, think positively-you may never or rarely need them. I know you just want to be realistic but my pouch just turned 6 years old this month and I've only needed pouchitis meds 3 times over the last 6 years.  If you have health insurance you should be OK re: the cost of maintaining the pouch.

Thanks again for all the replies guys, some great info! Yeah I hope it never comes to the point of having to use anything but always nice to know.

If I do go back I would be travelling with insurance (I'm not sure how much j pouch insurance would be, hoping cheaper than UC cover!). It's nice to know that pouchitis treatment is cheap as from what I have read it seems to be the most common issue. In terms of pouch adjustment via surgery I would just fly home for that. 

Question for MSH98, are you a US citizen? My surgeon has done a lot of work with the Mayo Clinic in Cleveland. And since Cincy is close to Cleveland it may be a good idea to ask him for contact details for surgeons in the Mayo Clinic, what you think?

How much does of an impact did pouchitis have on you? Was it like having UC where you are running to the toilet ? Pain etc? Or more like having a bad stomach?

thanks again

Anthony

Anthony, I am a US citizen-born and raised here and all too familiar with how expensive it is to get sick in the US!  I think your idea about getting names of contacts in the Cincinnati area from your UK doctor is a great one!  Certainly get all the names you can of anyone that specializes in Jpouches.  Pouchitis, for me, is similar to UC but not as obvious. With a Jpouch, you have control so you may have cramping, gas and have to frequent the toilet but it's not every 5 minutes and you don't have to run. It's hard for me to distinguish between a stomach bug and pouchitis. It's not that obvious until it goes on for more than a week or 2.  It's hard to describe. You just know that something's wrong. Now, I let my last bout of Pouchitis go on too long w/out meds and ended up with bad cramping and felt lousy but still was able to work and live a normal life.  It is important to get on top of it with meds quickly though.

People get different symptoms with pouchitis. The most common ones I've seen come up here are increased stool frequency, urgency, and nighttime leakage, incontinence, or frequency. Some people get more systemic symptoms (e.g. Fever, feeling crappy), but I've never experienced that. Bleeding can occur but it's uncommon.