What do you wish you had known/done earlier?

Not a long termer. Only had it about 26 months. 

I don't wish but I should have gone straight to an ileo. 

Period.  But hindsight is 20/20.

I would have regretted not trying the pouch. 

Not regretted.  Wondered. 

It's a good question for people that just got one or thinking of getting it done.  Because no question to your surgeon or Dr is too dumb to ask.   Information is important when going into this. 

Richard. 

Yeah,  I wished I had my ileostomy created much earlier, I struggled for years, pretending to my self and others I was well, all because I didn't want a colostomy bag at 28 years of age.

Within 10 mths of surgery, the ileostomy turned my life around, I got my life back.

I'd recommend to everyone, the moment a consultant or physician say the medication isnt working and suggest the ileostomy, then go for it, it'll change your life for the better, it did mine.

However. I'm much prefer life with a J pouch; the ileostomy gave me my life back; the j pouch has improved my confidence and self image.

I feel on top of the world, Ma!

strange posted:

Yeah,  I wished I had my ileostomy created much earlier, I struggled for years, pretending to my self and others I was well, all because I didn't want a colostomy bag at 28 years of age.

Within 10 mths of surgery, the ileostomy turned my life around, I got my life back.

I'd recommend to everyone, the moment a consultant or physician say the medication isnt working and suggest the ileostomy, then go for it, it'll change your life for the better, it did mine.

However. I'm much prefer life with a J pouch; the ileostomy gave me my life back; the j pouch has improved my confidence and self image.

I feel on top of the world, Ma!

I don't blame you.  Being given so young and having to wear an appliance.  I was a bit older when I came to terms with the inevitable.  But I am healthier.  Happier. 

Richard. 

Richard.....

I've only had my j pouch, 18 months

As a mom. I wish i new that the complications would be so bad. I wish i knew about PSC.  I wish my son would not have to endure so much pain and constant hospital visits. I wish i knew if he will be ok and live longer than me.  I wish kids and young people, and frankly all of you did not have to deal with all of the pain, surgery, and otjer issues you deal with on a dailey basis. I wish and hope and pray that my son's next procedure fixes his pouch and hecan have a somewhat normal life!

So that's not really the answers I was looking for.... My j-pouch is currently great so I'm wondering what recommendations you all have for long-term maintainence. I don't really think I need an ileostomy already when the pouch has been fine so far.  

I currently have no plans for long term maintenance; my surgeon never mentioned plans to maintenance and for the fist time in years I've been discharged from the care of all hospitals that I've received treatment and surgery from.

Compared to this dog you've got nothing to worry about, not one thing.  I'm stuck between a rock and a hard place now and just want my diseased colon back regardless if it kills me.   What else can you really do when you're stuck with a failed pouch where no remedies work and you'd rather be dead than live with a bag attached to you?  I'm sorry the internet wasn't around the day I decided to have surgery I might have understood better then that this is not the way out.  I'd gladly risk my life on a colon transplant now since I have nothing to lose.   What else can you really do? 

Good Dawg, I can certainly relate to your not wanting the bag.  That was my feeling when I had to say good bye to my j pouch.  Although you can never get your colon back, you could consider the k pouch or BCIR which are similar procedures that do not require having an exterior bag.  Both procedures have a high success rate and patient satisfaction, but are performed by a limited number of surgeons.  There is a lot of information for both procedures and there is the “K Pouch Korner” forum on this web site.

what do i wish i had done earlier? struggled for two years, to embarrased of the symptoms to go get checked out. suffering in silence at 17 missing school functions, outings with friends, vacations, etc... i should have gone the minute i noticed something was terribly wrong. 

Thanks Billy but no thanks at the same time too.   I'm afraid I'm stuck with grinning and bearing my pouch now.    I wish I could just go back in a time machine and say "no" to my pouch now.   If I ever get the chance for a colon transplant, I'd take the big gamble too.  That can always be reversed if worse comes to worse. 

If I knew then what I know now (22 years post J Pouch) I would be asking about Vit B absorption (can be very serious if left undiagnosed) + long term affects of surgery IE: abdominal adhesions (You may be lucky or you may not but preperation is the key).

Diet.

I wish that someone had spoken to me about the benefits of certain diets on my k pouch. (K pouches require a specific diet in some cases...in mine I found real benefits from a disassociated diet) . Also the need (not always but for many of us) for supplements and water. 

Also pills...it took me years to realize that coated pills and long dispersion meds just do not digest in my pouch so pill cutters, crushers and liquid and gummy forms of vitamins and meds work best.

Hope that this helps and what you were hoping for.

Sharon 

I wish I had known about bidets, Calmoseptine and VSL. I learned about all of these things on this site.  So thanks j-pouch group.

Theresa