Over one year post take down not sure; not sure if I'm in the right path

Hi Solomon 

You sound like the perfect advocate for an end ileo...how wonderful that your experience with it went so well. I can understand why you miss it. 

It appears that you and your pouch have not been able to make nice and that you don't feel optimistic about your future together. ..

Tell you surgeon exactly what you have said here (better yet, show him the post) and see what he has to say after that.

You are probably the best candidate that he has ever had for a conversion.

It sounds to me like you know exactly what you want. Good for you.

Good luck 

Sharon 

I had the same thing going on.  More bad days than good and the good days were not that  great. 

I have an end ileo now and don't regret getting rid of the pouch at all!  I dreaded getting it.  But all for naught.  All my decisions end up backfiring on me but this one was order out pretty damn good.  As said in other posts.... I am not in love with it but it sure has made things 100 percent better.  Pouch is gone... Rear end is sewn up... Don't miss all the pain down there a  all.   I've had enough misery.  It's all gone. 

Good luck with your decision.  It's all individual when you make it.  Of course you can get a mini educated guess from information here and your experiences.  

Richard. 

I thought about you guys said.

Sharon, I think that's an excellent idea. I am going to see Dr. Shen and then my surgeon. I'm going to listen to my inner voice. And I'm going to tell them what I'm thinking. Showing this post is a good idea too. Thanks.

Richard, I was and am so happy to hear that you are doing well. It's important to see people like you and know that things can turn out well.

I'm not pressuring myself to decide now. I think that talking with my docs and being as honest with myself and them as I can be will lead me to where I need to go.

Good to hear you have a level head while going through this.  It is a life changing decision as was others.  It's tough to decide when things are so bad cause you... we really want it to function properly. 

This is a great forum.  By far.  So many people come here it experience.  Before during and after.  And all explain everything.... bluntly.  Nothing wrong with that.  We have all gone through lot and can relate.  So no need to be shy!

I wish you the best.  

Richard. 

I think ideally no more surgery would be the best thing. BUT, if you hate your j pouch and only find things "acceptable" instead of good, then perhaps a permanent ostomy is the way to go.  10x a day is where most j pouchers are but dealing with chronic pouchitis is another story. That must be very taxing. Pouch removal is a HUGE surgery. I know some people just disconnect and leave the pouch there but I have not clue if that's good or bad. Good luck with your appointments. Hopefully the doctors will help you decide based on what they have to say. 

Solomon, your post reflected my experience - I could have written it. My gut said to stop after my initial end ostomy surgery, but I didn't listen to it and went ahead with two more to have my j-pouch. After four years, my need to get off the physical and emotional roller coaster was so strong. Despite this, I spent a year writing a pro/con list because I, like you, worried that my experience with a new end ileo wouldn't be as positive as my first. My surgeon wouldn't consider leaving my pouch in with an ostomy and, so, this last surgery would be permanent. This was a BIG decision but I trusted my surgeon completely and went for pouch removal. Despite very rare leaks, every day is a good one. No pain and no gut meds. No food restrictions. No life restrictions. I wish you luck with your decision.

Marianne,
I think that's pretty well said. In a straight "yes or no: Was your qualiy of life significantly better with an ostomy?" The answer for me is yes. If I had to live like this... I could... but should I?

And leaving the pouch in is an option, but being 22, I feel like that's asking for trouble down the road, leaving a disconnected, inflamed organ there indefinitely as it gets stuck more and more to the pelvis and becomes harder to remove. And if I don't want a jpouch anymore what's the point?

Lambie,
"No pain and no gut meds. No food restrictions. No life restrictions."That's about how I saw my temp ostomy. People would aks me how I feeel and I would answer... "great. No meds, no pain. I'm about to go work out."

The only question I have is what if I develop a skin affliction (pyoderma gangrenosum, psoriasis, allergy to all wafers, etc.) that will ruin my life as an ostomate?

I also couldn't imagine dealing with urinary or sexual disability because of the surgery. It's a question of whether the risk  of complications is not too high for me to do this.

Wow... 22 years old.  

But  don't know what I would have done had I had to go through this at 22!  But you coming here and talking about it and getting the information you need from Dr's and all.  Your on the right path to health.  It will come for you.  Even if you do end up with an ileo.  Which is not a bad thing if it makes you happy and healthy.  It sure has for me.  I just had three pieces of pizza!  Couldn't do that with a pouch.  Would have paid for it later... Not with cash either!  Hahaha.... 

I have had it all my life... UC.... But I didn't know what it was.  Was a minor inconvenience until I turned 40.

Then boom.... Got it under control until 50...pouch at 57. 

Ileo now... Turn 60 next month.  June. 

I cannot imagine having a pouch and thinking I would have to go ileo at 22. You are so young and have your whole life ahead of you. 

I still wish you the best.... Keep us updated.  We are all rooting for you! 

Richard. 

I have not had take down yet and its been years now with my "temp ileo"
I not have any real issues with the ileo but I do have issues with my butt and I'm not even hooked up yet. That worries me. Plus pizza is a staple food for me sounds like I'm in for more trouble. I go up and down with butt soreness and leaking, I'm on my feet and active for work and play and that doesnt help.
I've been getting nighttime leaking. It's like the pouch gets in these over drive moods and creates a lot of discharge. I can get rid of some on the toilet but not all and when I push it stops the flow. It's like everything is backwards.
I will say thought the pouch has given me a high level of my old life back which I'm also scared to gamble with.

Alan

Alan... I had trouble with all foods.  Pizza just came to mind cause I was having it yesterday.  I just had alot of problems.  I would only hope when you do have your takedown it will be a smooth transfer. 

I didn't read all the posts but am wondering why you have lived with the temp ileo for so long?  I only had my temp for less than a month.. Maybe longer... It's a blur.  But I had emergency surgery because my intestine was twisted causing a blockage they couldn't find.  So while in there they hooked me up and took the bag off.  It was a nightmare. I wish I could have kept the temp longer.  Maybe it would have made a difference.  Who knows.  All in the past now. Keep us updated.  

Richard. 

Had my j-pouch removed in 2003 for exactly the same reasons and have  never looked back.  Love my end ileo.  Have had two babies.  Work full time.  No drugs.  No diet.  No lifestyle restrictions.

Even recovery from my pouch removal was better than any other surgery - my body didn't like the j-pouch and the minute it came out I knew it was the right choice.  Within 2 weeks of removal I walked a mile on my own.  4 months after I did a 7 mile hike to Ramona Falls at Mt Hood.  8 months later I went kayaking in Central Florida for 5 hours.

I had to go to 4 surgeons to find one who would do what I wanted though.  No one thought a 30 year old woman should make this decision - except the 40 year old female dr who agreed to the the surgery within minutes saying "given the quality of life you want I think a permanent ileo is perfectly reasonable choice"  Every year I send her a Christmas card with a picture of my kids telling her that she undid years of medical trauma with that one statement.

Decide what you want and then find the medical professionals who will support you.  

Clever,
That's just how I felt with my temp loop. I also had some bloody mucus though. It doesn't mean that it'll necessarily be that way for you. I wish you the best.

Jill,
your posts are inspiring. Thank you so much, I may message you after my consults.

I'm seeing Shen next month, and my surgeon (and another different surgeon) shortly thereafter. I will certainly update.

JillM posted:

Had my j-pouch removed in 2003 for exactly the same reasons and have  never looked back.  Love my end ileo.  Have had two babies.  Work full time.  No drugs.  No diet.  No lifestyle restrictions.

Even recovery from my pouch removal was better than any other surgery - my body didn't like the j-pouch and the minute it came out I knew it was the right choice.  Within 2 weeks of removal I walked a mile on my own.  4 months after I did a 7 mile hike to Ramona Falls at Mt Hood.  8 months later I went kayaking in Central Florida for 5 hours.

I had to go to 4 surgeons to find one who would do what I wanted though.  No one thought a 30 year old woman should make this decision - except the 40 year old female dr who agreed to the the surgery within minutes saying "given the quality of life you want I think a permanent ileo is perfectly reasonable choice"  Every year I send her a Christmas card with a picture of my kids telling her that she undid years of medical trauma with that one statement.

Decide what you want and then find the medical professionals who will support you.  

My pouch removal recovery was just like yours.  As soon as I was well... Back in the world.... Because it takes a couple days after a surgery like this.... I knew it was the right thing to do.  Now it took another month to come to terms with the alien sticking out.  It's not normal.  But I had to just strip off the appliance and get in the shower and that was the moment I was set... comfortable with it and knew I could do it.  I was so happy at that point.  I was actually proud of myself.  I had a good feeling in my gut... What was left... Lol.... Like butterflies and it was a overall relief to be at that point in my life.  I have not looked back.