HI Grandmaof1, I totally get what you're saying. It's hard not only living a difficult life, spending an inordinate amount of time in the bathroom, but also being different from the average person who takes it all for granted and doesn't know how lucky he is. I had my jpouch removed but, even with an ostomy, sometimes I feel like I'm living in a parallel universe. BTW, I'm a fellow migraine sufferer. When people ask me how I'm feeling, I want to ask them, "which part?"!!!

Feel free to vent anytime... that's why we are all here!!!�� 

I know what you mean ... my 3rd bout with cancer and a history of Ulcerative Colitis... 

had triple negative BC WITH MANY complications... also 3 freaking failed reconstructions l, stage 3C colon cancer with a temp. Ileostomy, Folfox for 72 hours every other week... then the reversal of the bag!!! Ahhhh ... I was sooooo NOT cut out to be a "bag lady"!!! Then a major complication ... a small bowel obstruction that I almost died from. My weight plummeted to 83 lbs. The pain was def. comparable to childbirth and resulted in a month long stay in the hospital. Then... this past September I was rediagnosed with 4th stage colon cancer ( are you fucking (sorry) kidding me?!!!!) switched facilities and currently being treated at Hopkins in Maryland❤️  I live in Philly!!! But they are state of the art ... and I think the BEST HOSPITAL IN THE COUNTRY!!! I am currently on Cipro for my first bout with Pouchitis and it's helped tremendously! 

I also get migraines and just for the record... Flagyl cannot be taken with Fioricet... lethal combo!!! 

Hang in there ... I was on Cymbalta for neuropathy and depression but Cipro doesn't mesh with Cymbalta so I stopped Cymbalta so I can take Cipro to get rid of the Pouchitis. I feel soooooooo much better!!! Wishing you better days ahead and know that you're not alone❤️

Yes.   Depression and the bathroom.  I got more reading done in there than anywhere else.  Not to make light of it.  But it's true.  My pouch is gone also.  I have an end ileo. It's much better for me.  But.  You can count on 8-10 times a day depending on how much you eat.  And you cannot read.  My hands are busy.   I got rid of my depression with the pouch.  But still feel at times it may come back with what I have.   But I fight it. 

Migraines?  That's another story.  I have had one in my whole life that laid me up for 4 days.  Until I went to an emergency room for relief.  Demerol.  It was terrible.  If you have those that is terrible.  

I wish you the best.  

Keep expressing yourself and getting it out here.  We understand.  Not everyone answers.  But alot read it and can sympathize with you.  And may see they too are not the only ones. 

Richard. 

I feel the same way.  Always using the bathroom (granted, was doing that prior to the j-pouch) and my butt hole always in pain has created a battle of depression.  I am not on anything but I have thought about looking into it.  So the reason for the reply to your post.   You are not alone!  My friends call me Pooper because I am always... well you know.  I think it is important to have a sense of humor about the health problems or we all would go crazy.  On the good side, look into daith piercings to reduce/eliminate your migraines, I hear it's legit.

What's even more depressing is nobody will entertain the thought of a colon transplant.  I've heard all the excuses and don't really care, when your life is this miserable you've got nothing to lose.   Long ago one of my mom's friends was actually the recipient of one of the first heart transplants too.  She's still alive today too.  I'd rather be in Elvis Presley's shoes.  His autopsy showed that his colon was full of more than 30 pounds of feces. Chronic constipation enlarges your colon, and Elvis' colon was twice as long and twice as wide as a normal colon.  Even that sounds better than having no colon.

My toilet has unbelievable flushing capabilities. I can flush again and again with out barely anytime in between.

I hate going to someone's home and you have to wait like 3 minutes in between flushes.  You try to flush but it just makes water go up. Then you have to wait.  Then I'm in there for at least 20 minutes and everybody thinks it's my problem. No sir, it's your piece of crap toilet, that's the problem! (And yeah it's my problem too, I do have no colon, BUT THATS NOT THE POINT!!!)

That pisses me off, yo. 

Oh but when somebody else has super sonic flushing power like I do. That makes me happy.  

You gotta appreciate the little things when ya got a J pouch...

Soooo true!!! Haha!!! Oh the little things!

lol

It's a depressing to begin with when you're so dependent on toilets.   In fact I bought a new one this year.  It's an American Standard Champion.  It works better than my last toilet but still isn't what I really need.   No way do I dare try to install a toilet myself. 

We got a Toto this year.  My brother-in-law experienced toilet envy for the first time ever.  It works great!  

What pisses me off is when the GI floor of the hospital has sandpaper for toilet paper. I just don't get the administration sometimes...

You should complain about that sandpaper!  One thing in this house we won't be cheap on is the toilet paper. Charmin Mega Roll.  My husband has had his pouch close to 23 years.  Hang in there!  We are here for you.

I understand about the depression and the wishful thinking. 

Three thoughts usually help me:

1. Knowing any day out of the hospital is a pretty good day.

2. I am tired of being diagnosed with things ending in itis, but it beats being diagnosed with something ending in oma.

3. Thinking long term.

Jeff

Thanks, Jeff!  I needed that! And.........my TOTO toilet with bidet seat is my most prized possession!  No one but me uses it!  I've had it since 2004.

Hi Grandma, 

Well, I can commiserate, I understand and sympathize.

It is a long fight which never, ever, ever ends...some days I want to let go and slide into endless sleep...but then I remember days like yesterday when my granddaughter slept over for 2 nights so that I could teach her how to cook...housebound, in pain, standing on my feet for 2 days cooking, baking, kneading bread...with a smile a mile wide the whole time as she declared that she had never been prouder of herself (and her tummy didn't hurt her once! She's been suffering from gastritis for weeks now and has me terrified...She's 11)

I can't do the 'outdoor' things much anymore, no soccer balls or running around the park (she asked me why I don't exercise anymore) but I can teach her to cook, bake, knit or sew...I take what I can get. This disease has limited us all and I hate it but it is what it is.

It is the 31st, New Year's eve and all I want for 2017 is a healthy, pain-free body...I think that that would cure the depression nicely...

By the way...Jeff, you are fantastic! 

Everyone else...I love all of your toilet comments...yes, I hate lousy, cheap toilets, one more reason to hate going to other people's homes!

Toilet envy? Love it!

Happy New year to one and all...let's all try for good health this year (and peace!)

Sharon

I was going to get scoped one time.  My second scope many years ago.  I walked out and never went back because the toilet was plugged and over flowing and they didn't do anything about it.  Best decision I ever made.  Found a really good gi after that. 

It was just disgusting.  After just getting cleaned out for the scope and feeling like.  Well.  Crap.  You have to have a toilet.  Not one full of someone else's mess. 

Richard