i have read a lot about takedown. I am having mine April 28th. I'm scared to death and wonder if I will be able to control my bowels. Any pearls of wisdom out there??? Anything you can add would be helpful. I have read some helpful post. Thank you
Replies sorted oldest to newest
read on. theres lot of information on here. I would say simply good luck, remember to walk walk walk after your surgery, reduce pain med use as you can, pick a favorite diaper rash cream to protect from the inevitable butt burn and look forward to pooping out your butt soon!
also take note that the stories you read here, self select, there are many many many happy jpouchers out there who don't have issues, and therefore don't find the need to seek input/help/compare notes with other patients. there just sitting, wiping, washing their hands and carrying on with their lives. so don't mistake everything you read here as "normal".
that said if you run into issues along the way you know where to come.
Lots of good luck and good vibes...just remember, for the hard part, You are asleep!
Congrats & Good luck wish you all the best I had mine 7 weeks ago it's a roller coaster ride.... Try to find Calmpostine barrier cream and charming ultrasoft TP and stay calm ...
I've only had my J pouch 15 months and life's good, everything works better than was suggested.
I have 3 to 4 BM's per day, not every day, sometimes 5, maybe 6 but never less than 3; I can go for a couple of hours between BM's and there's never any urgency.
Most days I'll have the first BM in the morning then the next will maybe mid afternoon, then quite a few from early evening onwards, no idea why.
Most bowel activity is during the evening.
I have no night time toilet visits, other than to per.
I eat anything I want and when I want to; other than an occasion after eating a banana and a bag of peanut , not together, different occasions, food has never caused any issues, even prior to my colon removal.
By choice I don't drink alcohol, I do like alcohol but I tend to drive everywhere, even when I go out, so I've kinda not consumed alcohol for 20 years.
After my takedown, I left hospital about 4 days later and I was able to travel close to 200 mile by train only using the toilet once, since leaving the hospital and getting back to home.
Just after takedown I did experience a form of butt burn and from time time, although very rarely, I still do; all of which was and still is, relieved by the use of ilex protectant paste.
When I had the Stoma and temp loop ileostomy I used every paste. cream, powder, potion and concoction available to relieve the pain and discomfort of the leaking colostomy flange; that is until I discovered ilex paste; and within 3 days of applying the it, the broken, weeping, painful and oozing skin around my Stoma was healed.
Applying Ilex paste workd for butt burn too, I suggest you buy some.
My only issues, the odd accident, remembering to consume enough fluids to remain hydrated and fatigue.
Otherwise, life with my J pouch is good.
I had mine in the fall of 2001, best advice I would give you is listen to you doctor. Start out simple with small meals things that are easy to digest and add things over time slowly in small amounts, one new food at a time. This will help you figure out what you can eat and what you can't. If something you used to enjoy doesn't agree don't be discouraged in time you may be able to tolerate it. After my surgery I went back to work and life for the most part was great as long as I paid some attention as to what I ate. The only times I've had issues was when I ignored my pouch and ate what I wanted no matter how I felt. I wouldn't recommend doing what I did but I felt so good I didn't go back to my gastro doc till 2009 when I had mild pouchitis which is a picnic compared to life with UC. Hope this helps.
Thank you all for the advice. My Proctocholectomy was February 11. And I am scheduled for the take down April 28. Hope it's not to soon.
My takedown surgery was very uneventful which is the way we want it! Hoping yours is the same..best of luck!
except for a fistula that's been there since day one (21 years ago), i've had great luck with my surgery. i had to learn how to use my diaphram muscle to push down on your pouch in order to excavate, and at the same time RELAX your anal muscle. the nurse gave me a pillow to put against my stomach to aid in learning.
otherwise... it felt great to get off the medications and start living again.
good luck !