My visit With Dr Remzi update.

Short and sweet. 

I will be 60 this year.  I was tired of all of it. The pouch was worse than the disease in the short time I had the pouch.   I had it taken out and have an ileo.  I figured my age into it because I can live with it now.  Not in love with it by no means but it sure has made things easier for the first time in decades. 

Richard. 

Jeane, I'm so sorry that you didn't get better news from Dr. Remzi. I certainly would accept his assessment over those who have not recently evaluated your pouch. The fact that the cuff was a little longer and the pouch a little smaller is probably not terribly relevant in the long run, so I would not think about "what-ifs" too much. A slightly imperfect pouch construction generally should not lead to failure. I know that Dr. Remzi seems to favor pouch redos over lesser repairs. I imagine that in his experience it leads to the best overall outcome.

Even though you you don't want it, giving yourself a rest from all these butt issues with an ileostomy makes a lot of sense. It is a quick and low risk way to restore your health (and sanity), and buy you the much needed time without pain to decide your next step. I cannot imagine dealing with a redo with your personal struggles right now. 

Whatever you decide, take your time with it.

Jan

Thank you very much Jan for your response. I appreciate your advice and insight.  

Hi Jeane, I'm from CT as well�� So sorry you are having so much troubles. Are you just on cipro right now? No biologics?  Aside from your issues, does your pouch have inflammation too? Confused when you say burnt out? 

I think Dr. Remzi often recommends a temorary ostomy before a pouch redo. This helps you get in your best shape (physically and mentally) for the bigger surgery. From what I hear on this site, he does not play mind games, trying to get you on board with a permanent ileostomy.

A number of people here were ready to just go with the ostomy, but Dr. Remzi was confident that a redo would be successful...and it was! But, certainly get your questions answered before agreeing to anything. 

One thing for sure, you need a break from this merry-go-round!

Jan

Yes Jan . You are right.  I'm trying tio gear myself up for what I am facing. Thank you. I just don't want to feel guilty about possibly wanting to go through a re do if I am a candidate.  as I will be expecting a lot from my husband after a long time of his patience with all my current problems.  

No one seems to understand this difficult, life altering surgery unless they have really walked  in our shoes. It's easy for them to say get the ostomy and be done when they are not living with it and maintaining it for life.  I am thankful it is sn option   to those of us who are very sick ,  but I would prefer to remain continent if there is any glimmer of hope for it  even if it means more surgeries   I'm 53 and hope to live for many more years    

This is alot longer than I thought it would be. So I had to come back to the top and let you know of its a long rant and I do apologize now and during.....

It is easy to say.  But as I said above in another post.  Age is a big consideration.  If I were 53 I think I would have held on longer.  But also as you say the suffering... Daily... That was too much for me.  Too many Dr's.  and more if I would have kept it.  Tests... Prodding and poking and medicines.. waiting  for results and more Dr's... I didn't want to spend two more years doing it.  Wasting the time I had left on this earth suffering and looking for answers. 

It was not worth it anymore.  For me.. it was the right decision.  It's the first time in my life I can remember anyways that I have no tension in my abdomen.  I have always felt that something was there.  Even in calm times.  But now... Nothing.  All life's stress was put there and I felt it most of my life.  In the short time I have had my ileo when stress pops up... I feel nothing in my gut!  Stress was a huge and main factor now that I look back.  Unfelt stress. Daily stress... Like just going to work made it act up.  Now nothing.  It's all relaxed.  Nothing there to stress out on. 

I am not saying get an Ostomy.  It's a tough life altering decision.  But they all are.  I've been through all the pain of surgeries.  All the pain of searing heat down there.  The constant urge to go.. Day and night.  That's just the 2 plus years with the pouch.  

I just read into so much suffering... and I know because like I just said I went through it.  And would still be if I didn't put an end to it.  

The big thing now that I have one... Is the Ostomy! 

It gets to the point that it's dreaded.  But people have to stop thinking that way.  It does not make you a freak.  Now that I have one it's so much easier.  No pain.  It's easy to take care of and you forget you even have one.  Don't get me wrong.  I am not  in love with it.  But I have moved on.  I can eat anything and everything now.  Something  I have not enjoyed in many many moons.  And food is life.  I love food.  

I was scared as hell to do it.  It's permanent!  Permanent.  That's what was in my head.  And another surgery.  I didn't want to do it.  I was gonna hate it.  But I also hated where I was at the time.  So what do you do?  Take a chance or live in pain?  

I'm sorry if I offended anyone.  But sometimes you have to do what you really have tried to avoid all along.  An Ostomy.  But... I found out its not that bad.  I just poop in a bag.  Sounds terrible doesn't it?  I poop in a bag.  But I don't hurt any more.  A few adjustments and no one even  knows I have one.  No one.  Even people that do say they can't tell I am wearing an appliance.  I don't go to any extreme to hide it.  I don't care if anyone knows.  It's not a disability.  It's has enabled me to go on with my life.  And I am very grateful for that.  The pouch would have slowly killed me.  In fact it was.  

I just had to get some things off my chest.  

As I said I read all this suffering and weird things we do to keep something that does not work. 

I personally think it either works .... Or it doesn't.  If your in between.  Well... That's the hard part.  Do you want to make the rest of your life better or keep suffering to keep it.  That was my question to myself.  My surgeon.... She is a good surgeon and person.  She saw what was happening but did not push me into it.  She suggested it. 

I thought about it along time.  But when I looked at pictures and how much I looked like death... I had my answer.  It was killing me. 

I apologize again if I have offered anyone.  

Do what you think you have to do.  Only you can make the decision on what to do.  Only you.  Because whatever you decide you have to live with.  No one else. You. 

I am just blowing off some steam I guess.  I made  the right decision.  I am lucky.  Very lucky.  I surprise myself everyday how well I am doing.  I thought it would take years to get used to this.  It took only a month after being out of the hospital.  The surgeon who made my pouch took it out and gave me the best stoma a person could have.  

There is life on this side.  I am on it and living proof. 

It's not a disability and I am not a freak.  But then again.  It's probably not for everyone.  Just another way to poop! 

Richard. 

I did all I could to avoid an ostomy even though I had made friends with it during the period between proctocolectomy and take down.  Dr. Fazio did my pouch redo because I did not want an ostomy. Unfortunately because of an error, I had another surgery to correct a surgically induced obstruction, ending up with 4 surgeries total.  Now I am full of adhesions and have had multiple SBOs. In addition, too much muscle was removed and I am incontinent at night and sometimes mildly incontinent during the day.   It is 15 years post 4 surgeries and I have additional medical problems and a new case of pouchitis.  I'm tired of it and if I needed to have an ileostomy today I would go for it.

Everyone avoids it.  But avoided it in the beginning causes problems down the road.  Something no surgeon tells you.  The longer you have it the harder it is to have it removed successfully.  

To be blunt.  It sucks.  I know.  Other problems crop up along with what your pouch gives you. 

I am just glad I didn't fight it too long to where removing it would be a problem within itself. 

Like I said. I was lucky.  Certainly not with my colon or pouch.  But with my Ostomy.  It's trouble free.  And I can now deal with what older age is gonna deliver.  I still have a disease.  I just got  rid of one part it affects.  My autoimmune disease is now showing up in different ways.  I will always have it.  Now I have to deal with other situations that crop up from it but I don't have to deal with the bigger part it was affecting.... My pouch and colon..... As the old saying goes and how true it is... "you have to be tough to get old". 

i concur, don't avoid it.  i did for woefully too many years.  one problem was that the docs always had another idea, another med, another bit of hope for me.  of course i ultimately was to make the decision, but all their 'great' ideas' were landmines that i fell prey to.  now i'm pain free and my life is different.  i'm not saying the k pouch is for everybody, but for me it has been great.  that said, in the end the bag would have worked too.

richard, your on-going support of people--drawn from your experience and feelings--is very inspiring.  i appreciate it and glad you have adapted so well.  janet

Thank you Janet. 

I would have liked to try another pouch but my surgeon advised against it.  I was pretty sick.  I don't think I would have made it through another... well... failure.  It's my luck so I may as well pass go and go straight to jail.  Lol.  By the time I was done with my pouch removal surgery I was down to 128 pounds from 176. I was headed in the wrong direction.  Now that I have my ileo I have gained 19 pounds.  It's not coming back fast but I'm not losing it either so that is good! 

If you  have your health and a positive attitude.... I had neither.... Other options are there and should be explored.  

Richard.