Countdown to Final Takedown Surgery- 3 weeks from today

Here's my experience; the surgery itself is a breeze! I never needed any pain medication. Encourage Brandon to get up and walk and walk and walk. I can't stress how important walking is. Adapting to food was the hardest thing for me. I had very high frequency in the early months post surgery. But I knew to expect it so dealing with it was easy. Keep a food log and have him measure transit times. Eating foods that were slower to digest decreased frequency. If a food doesn't work out early on, have him try it again in a few weeks. Sugar, juices, and anything sweet will keep things looser. Have him try fiber and imodium/lomotil if he's uncomfortable. Some people swear by metamucil wafers. He will have to experiment with doses, we are all different. Take a tube of calmoseptine and a tube a diaper rash ointment to the hospital. These are invaluable.

Most of all; have patience. Since Brandon is healthy now, dealing with the challenges post reversal will be easier. It can take six weeks to note improvement in pouch function and plan a full year for predictability. Gas pain, spasms, and multiple trips to the bathroom in the period of minutes are normal in the early days. Then again, he may never experience these things?

Sue

I don't know why he wouldn't be able to go back to school?

I went back to work 3 weeks post surgery. I went camping six weeks post surgery, traveled through Europe 3 months post surgery and did a half marathon six months post surgery. You just learn to deal with the adaption but you don't put your life on hold.

The ostomy effluent is a lot more watery than a jpouch but a jpouch can be watery if too much sugar is consumed. It's all very manageable, though.

Sue

Make sure they bring him some of the protective paste that they make in the CC pharmacy and that he uses it. That stuff is great! I would also take some flushable wet wipes to the hospital and a soft squeeze bottle that he can use to squirt water on his bottom to rinse things off. Water provides amazing relief in those early days! What I stumbled upon to get rid of the burn was to rinse a little with the water, gently pat/wipe clean with the wet wipe, use the water again to rinse away the solution from the wet wipe, dab dry with toilet tissue, and then apply the paste. Sounds tedious, but I have had little to no butt burn aside from the first week or so. I don't even use the paste now except maybe once or twice a week if I eat something kind of spicy!

I don't know where my experience falls on the spectrum of what is normal, but I will share it anyway. . I had one day in the hospital where I really wished a meteor would fall on me and just vaporize me. I was constantly on the toilet and passed something like 3,000 mls in one shift. They were a bit worried about me! I started eating a little more solid food (versus just the liquids) and it improved a ton. I never had any urgency, lack of control, or accidents with my pouch....even when I had that hell day. By the time I went home (surgery Tuesday, home Saturday) I was more than comfortable making the drive from Cleveland to Columbus without worrying about bathrooms.

I did use a little Imodium in the beginning, but I've found I don't need it. I will occassionally take one before bed if I just want to ensure extra long sleep. Without it, I consistently get six to seven hours though. I actually have to make sure I drink plenty of water throughout the day to make sure I don't get too slowed down! I've never used the fiber supplements. I'm one month out from takedown now and I think I would have been comfortable attending school two weeks ago if I was in that situation. I've been running again for two weeks now, up to 4 miles at a time. I eat pretty regular food, though I've taken it slow on the raw fruits and veggies and haven't ventured into more exotic territory yet like popcorn.

So, yes there are horror stories, but there are good stories out there too. The thing is, most of the people who are happy and healthy with their j-pouches are out living life and not hanging out on Internet support boards so we don't hear their voices as readily as someone who needs help or is having a concern.

I guess my final piece of advice would be to prepare for the worst, but expect the best. It may not be a big deal for him at all. I will be thinking of you guys. I'm up to CC for my post-op follow up on the 14th.

I had my takedown two weeks ago today and most of what i heard about what to expect has been true.

Surgery was a breeze compared to the j pouch surgery. Only took 45 minutes and i was up and walking around the same day, very little discomfort really.

but, i had a colostomy for 2 1/2 years prior so my rectal muscles need more time from what the surgeon tells me. the first week i had a few accidents but it got better. right now i go to the bathroom probably 10 times a day but it feels like its getting better. gas is the issue for me. you want to fart sometimes but you know you can't or else. when i sleep, i sleep on my belly because that way i can let out gas without "sharting" myself.

definitely stay away from sugar altogether to start with or you'll have diarrhea. for me if i drink orange or apple juice or eat sweets, it'll cause problems. right now my diet is pretty limited to make this as comfortable for me as possible. i eat a banana and sometimes a lunch pack of diced peaches for breakfast which doesn't cause me problems and for lunch i have a pasta dish with chicken. it seems to work well for me for now. if i eat a piece of cake or ice cream afterwards, i'll have diarrhea that night so i stay away. i don't eat after 3pm to ensure i have a night of sleep. but i know as i heal i'll be able to eat more later. my ostomy output prior to takedown was watery as well but its because you are only using a small portion of your small bowel. once the takedown happens, he'll be using all of his small bowel and it'll absorb the water better.

i had my surgery at cedars sinai and they provided baby wipes which really helped. also, make sure you bring your own toilet paper. honestly, like 8+ roles of the softest you can find. i brought the baby wipes home to use but i haven't used them much because i figured out if i pat instead of wipe, it doesn't bother me much.

But the biggest thing was how i felt after the surgery. i was on cloud nine both physically and mentally afterwards. i felt great and he will too. but patience is the key.

for now i stay home and am fortunate to be able to work from home and have a woman here with me to help take care of me.

Good luck with the surgery!

P.S. i don't have but burn because i stay away from the foods that may cause it. he'd be wise to do the same. lol

Thank you all for the valuable advice!!  I cant wait to share it with my son.  

The best to all of you!!