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LauraLee posted:


I can’t remember the last I posted something but it was long time ago. Maybe over a year,  full of all kinds of issues with my JPouch.  I’m just feel hopeless, lost, discouraged and too sad and depressed to keep fighting.  I really need advice.  I faced UC since I was 21 years old, and after 22 years of multiple issues, suffering and sadness, I got my JPouch surgery done in 3 phases, thinking it will be the end of that horrific chapter in my life.  But another horrific chapter opened then.  After 4 years with my JPouch and lost of Pouchitis, 1 huge Obstruction, C.Diff, H. Pylori, chronic depression and stress, today I just found out I also have Crohn’s.  I don’t know if anybody went through something similar but at this point I’m ready just to give up.  Does anybody knows how can a person with a JPouch can deal with this? Any words, opinions or advises will be appreciated and so much needed.

Thank you in advance,


Hello Laura,

Just wanted to ask how you are going. I too feel like giving up sometimes – I guess for me that would mean staying on the couch in my PJs instead of making myself have a shower, put on uncomfortable clothes, and attempt to keep in touch with friends and a world that doesn't seem to have much time or patience for sick people.

Is there a treatment or management plan for Crohn's? It must feel like being kicked when you are down to have this on top of UC and problem j-pouch.

I hear you about the stress. I am overwhelmed by it a lot of the time. The things that relieved stress for me – socialising, cooking, exercising – are now sources of stress. Ironic, I suppose.

Do post again as you can.


It's a hard road no doubt. You were so young to start out life this way.  I thought to after J Pouch I would be cured; wrong.  I said it before it's a day to day  battle. Some days are good but the bad outweighs the good.  I really do the most on good days and be thankful for them.  I pray for healing, I bake and cook almost all my food.  I can't eat out much due to pain and diarrhea.  I'm glad I enjoy cooking it makes me feel good.  I am accepting what I can and can't do.  I k the timing of my bowel and how long after I eat.  I schedule my day that way and I do get to go out and enjoy what I can.  Can't dwell on it; take advantage of what u can do and when.  I was dx: UC 98 and had td in 2013.  Keep busy.  You might laugh at this but I get alot done on toilet.  I read, go over the mail, sometimes do my pedicure. lol  Hey u have to make the most of it because I spend awful lot time there and I have everything at hand.  What can ya do.  I'm happy to be able to get up and get around and not be in hospital.  Keep strong and let us know how it's going we are here and know and feel your pain.   

Ok so I just reread this entire thread and I am devastated at how much physical and mental pain is out there among all of us.

My k pouch journey started at birth with my 1st colostomy on my 2nd birthday after 6 failed reconstructions.  At 9 the whole surgery/failure cycle started again because the pred was killing me and I refused to take it anymore. 

From 12-18 I had 2 failed gracillis muscle flap surgeries (worse surgeries ever)to reconstruct the destroyed sphincter. At 18 I met Dr Cohen who saved my life and gave me quality of life for the 1st time. 

I've had pouchitis, a slipped pouch (3xs), valve slippage, hernias , occlusion, twists and the whole 9 yards...still do (2 broken arms last year and an accident 2yrs ago that left me limping and in permanent pain)...

But...and this is the big one... I have never given up the search for joy. I have never given up on happiness. I believe in small wonders, rainbows and tickling babies and puppies... I am no idiot, I put myself through university working 7 days/week  for 7yrs...hell...and fought cancer simultaneously but I fought...and won. 

I believe in happiness at all costs... I believe that we can find and keep love and that we are lovable (yes even with all of our issues) ...a walk in the rain or a rambling phone call with a friend can put my day right .I teach M.B.A. on a stage in front on 40-80 kids at a time... fighting pain, leakage at times,  wearing a tube & appliance at others. But I laugh and give love...and make them laugh.

None of them knows my condition but all have my phone number in case or an emergency... I have a passion and commitment and they keep me going through the darkest days.

It doesn't matter how or in what form but we need a passion and a commitment outside of our selves to keep going ... it could be our kids or painting or dog walking but something to separate  our minds from our bodies. 

Work from home or your toilet to the blind or deliver meals...some of our own pain disappears when we help others heal.

When I shop there is always someone outside asking for money... I buy them food instead. I give flowers to strangers because on the worse day of my life (21st birthday when they told me I would never have kids after the HSG) a stranger handed me a rose and smiled .

So please do not give up. It's a long journey and full of bumps and dark valleys but it's worth the trip.

K pouches and BCIR exist in case of total j pouch failure. I know, I've had mine for 39yrs...moved to Paris and built a life.

So please do not give up the good fight.


A few years ago when I joined this group, I read some of Sharon’s posts and found them to be very inspiring.  I responded to one of hers and referred to her as being the “Energizer Bunny”.  She has certainly lived up to that title to the current day.  I wish that I had read some of her inspiring writings during some very dark days in my life.  Somehow, I made it through all that and am now on the “other side”. Sharon will be a main speaker at our Quality Life Association’s annual conference in Clearwater, Florida this September and I am anxious to hear her presentation and to meet her in person.


Thanks, Bil, for the cheering section (it does a girl good to hear that she has done good!) and for the stuck!...

Today is student garden party day at my place, I have invited over 20 for homemade cakes and pastries...yes, I bake for my students. I will cook for them too and make a spread to light up their eyes. 

My joints hurt, my back aches & my pouch is gassy and quite honestly, I would love to stay on the sofa and series-binge but I cannot today because joy is coming over. 

Doesn't matter what I am feeling (I am hooked up to 2 sets of electronic TENS pads on  1 of my broken arms and knee)...because my kids are coming over...

They used to call it mind over matter, focusing your energy...I do not care about titles...just helping others so I can forget pain will still be here later but the kids, for now, I am going to empty my pouch, take something for pain and get my poor rear in gear and bake my little hear out.

Because this life, no matter what, is worth fighting for...if you can see the bigger picture beyond the pain, anguish, disappointment, frustration, anger, and meds.


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