3 weeks out post take down today

First starting out with a pouch is really hard.
Really hard and tough on the mind and body.
Adding things to thicken... Thin... I was doing all of it with no help.  I just gave up and didn't add anything to my diet.
It takes time.  Alot of time.  That's all I have.  Because that's all I had.  It take so long to heal and figure it out.  There is no instant fix.  We just have to let our plumbing figure it out.  At least for me.  I only use an antispasmodic and a painkiller.  Which I need.  I still have pain and spasms after a year and a half.  I just had three days where it worked the way it was supposed to.  Now I am back to straining and leaking.  I get teased with the ease of the way it should work for a couple days. 
I wish you luck and bear down.  It will get better.  Find what works and stick with it.  You are not far from takedown.  3 weeks is not much time even though it seems like an eternity when it's so painful.
3 weeks!  That is no time at all.  Sorry to be blunt but it took me 9 months just to get back to work.  And I still struggled then.

I think that is what I fear.  I don't know how we will pay bills if I can't go back to work for 9 months.  What has everyone done for money with extended time off?  I couldn't get disability insurance because of the UC diagnosis.  :-(  

Most people get back to work in six weeks or so. Most people don't need long-term pain medication following J-pouch surgery.

 

I've used psyllium since I got home from the hospital 13 years ago, and I find it helpful.

Hi Scott,

It isn't about pain meds.  It is about poop time.  Having patients every 15 minutes or so, I had a hard time finding time to pee in 4 hrs before 'lunch' -- so I guess for me it is a job demand issue.  Sometimes I wonder, if I went back to work if I would 'go' less -- you know less time to think about it.  

 

For the psyllium -- do you use it multiple times a day?  

 

Thanks for both of your time.  I really appreciate the advice on the enigma that is the 'pouch'.  ;-)

I really do appreciate the insight -- and more appreciate how many of you reply to the same concerns.  I am having a hard time - sitting still and just healing.  So, thanks for all the patience.

This may sound a bit harsh but it was my experience when I first had a newly connected J-pouch to live like a baby who was being introduced to solid foods.  Start out very, very simply.  For several days eat/drink JUST low residue, easily digestible foods/drinks.  And, not much of a variety.  If it works......eat it!  When your output seems okay with what you're eating/drinking, add one food at a time.....for a couple of days.  If things don't work, change the food you added and save it for later.  Be very systematic.  Take notes.  Keep a food diary with results noted.  Any issues I had early in the game were caused by a culprit food or drink.  On down the line there wasn't/isn't a food or drink I couldn't/can't eat, etc.  It just takes time......a lot of it!  Best wishes.

I use the psyllium before breakfast and dinner.

 

I found it helpful during early recovery to slowly try to increase my pouch capacity. This was described as "stretching" the pouch, though I don't know if that's literally what happens. Once you're well healed you will most likely have no urgency, and be able to put off using the toilet for quite a while, within reason. I generally use the toilet once or twice during the workday when I work at an office (beginning of day, end of day, occasionally at lunch time). Perhaps you can have a more forgiving schedule arranged for when you first get back to work? 

I never ever used psyllium or Imodium or things like that (guess I'm lucky on that front), but I remember definitely taking it slow on the food front, once I was reconnected.   I remember them saying if Metamucil didn't work, try Citrucel, but again, I didn't need it. And I cut off all pain meds before I left the hospital. 

 

I stuck with "thickening" foods, like potatoes, and bread, etc. and slowly added things to the mix. I had my takedown in mid-May, and was back to a full time semester that September, commuting 30-45minutes to and from college. 

 

I found that Kegels helped me a lot, and also deferring the urge to go helped stretch the pouch. That's what my surgeon said to do; not to run on the immediate cue to go, to wait a bit to allow it to begin to stretch, so it could hold more and allow me lengthier times between emptying. 

 

My favorite ointment in the day was A&D. I now also like Burt's Bees multipurpose ointment. It is non-petroleum based, with a gentle scent, though for bad burn, it might not be "enough."  

 

I have a fistula, and find a warm to nearly hot Sitz bath to be soothing when it acts up. You could buy one and try it for the burn... They're cheap and sold at any drug store. I just fill it up and plonk my butt in it, and soak for a bit. 

 

Also, 3 weeks = still a newborn in pouch years. It's hard to be patient, but things should slowly get better and better. I had 20 really awesome years before some new things cropped up. However, even with the new stuff, my pouch is pretty darn good. On average, I go 4-6x/day and hardly ever at night. And tonight I ate a steak salad and raspberries. Granted, my pouch is 24 years old, but give it time. Things should slowly get better... best of luck. 

Thanks for the input. As far as jobs....I am moving and looking for a new one as we speak and part of me says lay it all out there but I wonder if it's their business and legal or not, could prevent hiring. Thoughts? A colleague of mine said get yourself healed before searching but I have righteous student loans and three kids to take care of. 

On the food front, I have been bland but I have found that I really do have to drink water every 2 hours which keeps my consistency more 'consistent'.  At this point carbs make too thick....so I am experimenting with increased fluids when I eat potatoes, bread etc.

Apparently, I just had to emote because the last two days I have noticed some improvement on the burn, pain front with a decrease in 15+ stools a day to 12!  I will take it.  I get its a baby pouch...and have been living on here trying to absorb the knowledge of the 'grown Jo's pouches.

Thank you all, seriously.  Without this group before, during, and now after I would have been far more clueless...and likely more impatient.