Considering Reversal: Am I Crazy?

Hello everyone,

I have been an ostomate off and on for almost 30 years and just recently decided it was time to reconsider my options.

My first ostomy was due to Crohn's back in '83. I had a temporary ileostomy for just under a year and then had a reversal. I was 23 and full of...well, a lot of things, but let's just say I saw this as a freak accident. I blamed it all on being at a comedy club with some friends and drinking and eating too many nuts (I was diagnosed improperly in '79 with a peptic ulcer of all things but quickly got to the truth and changed my diet and took some meds but quickly got back to some sense of normal. I knew better but that night I just rebelled a little too much) but that one brush with death woke me up in a hurry. I had a blockage that ended up perforating and by the time I realized how bad it was and went to the hospital, I spent all of 5 minutes on a gurney before they rushed me in for emergency surgery. Apparently, I was one hour away from peritonitis (which basically means the contents of your bowel start eating away at your vital organs). Suffice it to say, it was a lesson well learned.

I was so thankful to have the reversal in '84 that I stopped drinking and changed my diet completely. For the next 9 years, I was back on course and became successful in many areas of my life. Unfortunately, 9 years later it all snuck up on me again. I was married with a 3-year-old daughter and a nice life. However, all the stress crept back in and put me back in the hospital.

It turns out the perforation this time was due to internal injuries and added stress on my system. I thought I had broken a rib or displaced it or something. In fact, I had pleurisy which basically means the fluid that protects your lungs from rubbing up against your ribs is not working properly. If you've never had it, the pain is hard to describe. It feels like someone beat your ribs in with a bat.

I went to the hospital not being able to breathe but quickly found out the real cause. I was back in surgery again for basically the same reason. I wasn't so lucky this time and to make a long and painful story short, after 5 unsuccessful surgeries in 4 months, I ended up being transported to a different hospital. I lucked into the best surgeon possible and after 10 days was home with Ileostomy 2.0.

This time I was told that all the plumbing was left intact for possible reversal but I should give serious thought to considering it a permanent solution.

So here I am 18 1/2 years later, at age 50, considering a reversal. My daughter is 21 and well on her way to her own life. My marriage only lasted for another 7 years after surgery. And thankfully, after a very fulfilling career, I am blessed to be in a situation where I work when I want, with whom I want, and answer to no one. Life is good!

But I have this nagging curiosity about life without my Ileostomy 2.0. I have never named it. Never considered myself a person with an ostomy. I changed my lifestyle to make it all work but never resigned myself to the fact that I would take my final breath while looking down at my appliance, at least with any sort of fondness or great memories.

Just this past week, I had the chance to visit my favorite surgeon in the world and thanked him for saving my life almost 20 years ago. I asked him simply if there was any chance to finally consider a reversal. I needed to know now. After a lengthy discussion about all the possibilities of why it might not work, we also discussed how it might work. The one line that sticks out from our whole conversation was his summation of my situation: "What you're asking is reasonable. Let's find out if it is possible."

He said we could start the process to make sure all the parts are still working properly (you all know the drill...scopes and various snapshots of the entire digestive system as well as blood work, etc...) and if all the evidence suggests a good amount of success is possible, then we can proceed.

I've gone for tests for years now and I know all the parts still work, but once they are all connected, as we all know, that changes everything.

I know it's a lengthy post. But I am being a little selfish here and using this as a way to sort this out in my own head, not to mention how cathartic this all is to verbalize my situation. I chose to post it here because after less than a month here, I'm convinced I'll get an honest and well-informed response to my one simple question.

Am I crazy to even be thinking about any of this?

I am very grateful for everything I have. Even though it's hard to admit sometimes, I am extremely grateful to have an ileostomy. I know life would be very different without it. But I can't help but think if I have one more chance to maybe live without one, should I take that chance now? Even if I only get 5 or 10 years and have to go through it all again and end up with Ileostomy 3.0 for the rest of my life?

I'm looking forward to any and all opinions/comments.

Thanks!

Michael

Hello strongandbroken,

Thank you for your post, it was most instructive and interesting.   I am not in your position so I'm just going to comment from an empathic perspective of my own.   It sounds as if you have thought this through from several different perspectives and haved discussed it with the appropriate people to enable you to deliberate on the matter to the best of your ability.   Sometimes, with all the analysing and deliberations you can possibly do, there is still a difficult decision to be made at the end of the process.   I have been there so many times and I have tended to stick with what I know and have gotten used to.   When I have been forced to take steps that I have previously avoided I invariably think that I should have made a more positive decision in that direction long before I was forced into it.

There is no right or wrong way forward.  There are just alternative pathways and who knows which ones will be more positive than the others.  Nowadays I tend to make lists of positives and negatives then opt for the side that 'on balance' seems to be the most appropriate way.   It's a bit like the decisions when bringing up children.   You never know whether you've done it right until many years later and then it's too late.

In reading your post I feel sure that you will make the right decision when you have explored all the options.  I do hope whatever decision you make works out well for you.    

Best wishes    Bill

I don't think you're crazy for wanting to give it another shot. If my parts still worked, I'd go for it! I've had my ileostomy for 5 years due to Crohn's disease, and my entire large intestine was removed due to fistulas and rupture. I have a love-hate relationship with it. I love that I'm alive because of it. But I hate it most of the time. I hate how my self-esteem was destroyed along with my marriage. I hate that I feel uncomfortable naked or in a bikini. I hate that it wakes me up 3 or 4 times a night to drain. I hate that sometimes it wakes me up to a mess. If I could reverse it, I would. I'm looking into getting something called a BCIR now. It's basically an internal reservoir built from your own small intestines. No exterior bag, but a catheter? I say go for it! And I wish you the best of luck with the reversal and life!!

Wonderful encouragement, Sally! I'm actually a fortunate one awaiting my reversal next week. But like yourself, I have a straightforward relationship with my colostomy as I'm here because of it and I know that if all fails next week, I won't be too concerned if I have to go back to the bag. Obviously, I'd prefer the reversal, but after meeting some wonderful people here, I look at life a little differently. Sorry, but I was going to crack a joke about Gizmo's comment on your post last week!! Oh, how it made me laugh!! Keep positive, my dear!! I don't regret a moment I've had my bag! Take care, Colm

Oh, I think you should go for it. I have done it a few times, but it's not worth it from Crohn's disease. I get it! I do understand. What the hell, go for it. It might be fine. You never know if you don't have a go, hey!

Wow, Sally. I know 2 members at our association who use those catheters, but both didn't have Crohn's. I heard it's not too great, but that's your choice. No sticking tubes in my gut to poop. Hell nooo! But again, if you hate it that much, maybe you might work out the pouch is the way to go. I gather you have read a lot about it. I also thought of doing it, but I want a life not that way, as I hear it's not as wonderful as it might seem...

Good luck to you all xxxxxxxxxxxxx MOOZEEEEEE

Michael Strong and Broken

I think you should go for it. If the worst comes to the worst, you can go back to an ileostomy again.

I have had Crohn's since I was in my twenties, had an ileo-rectal anastomosis in 1982, and my Crohn's went away completely. In 2009, I had a terrible accident, fell on a lump of concrete, fractured my skull, ruptured my intestines where they were joined in 1982, got peritonitis, multiple organ failure, and septicemia, and when I woke from the op, they had given me an ileostomy. I CANNOT WAIT TO GET RID OF IT but have had MRSA and only just got over that and plan to have my reversal next year. I am thinking positive and hoping that my Crohn's stays dormant. If all the stress I am now under due to the ileo makes Crohn's come back, then I can have another ileo. It's worth the risk, I think. Having an ileo rules my life and holds me back. I hope yours turns out fine. At least you've got a wonderful surgeon - grab him while he is still practicing - he might retire soon and then where will you be?
Cecille

Thanks to everyone who's replied so far.

Bill - Yes, I know I am overanalyzing. Maybe I should have titled this...still anal after all these years?

Sally - Wow, that sounds like quite the journey. I like your courage. Thanks for the words of encouragement. I really appreciate your input.

Colm - Good luck! I feel the same way. I wouldn't be here without my little plastic attachment. But I want to know if I can go without the training wheels again. I do know they can be put back on if I can't make it, so that gives me hope as well.

Mooza - You crack me up. Thank you for giving me that Aussie attitude on life. I love it! Good on ya mate...have at it then... I really like the attitude.

Cecille - Wow, what a story! I bet you can't wait! I love the fact that you're so bound and determined to get past this hurdle and get on with life. Inspirational...really!

I just made an appointment for early January '12 to start the testing process. The surgeon wants to do his own version of...every version of every test you ever hated but have to have because your surgeon wants to create his own baseline of vital information that will be used to safely and accurately prepare everyone involved to perform a successful surgical process.

In other words...open wide, bend over, you're going to feel a little prick, by the time I finish this sentence you'll be out cold and you won't feel a th___....zzzzzz

I respect the process. I believe in it, but I don't have to like it. In fact, I hate the fact that they're so nonchalant about taking chunks of your dignity every time you agree to the testing process. I know it's their job and it's for my benefit, but I just wish more of the professionals would take one second to remember that we are not just patients. We are people, and we still have some dignity and pride, and YES, we mind when we are asked very personal and private questions within earshot of other people. When they ask us questions, why is it so hard for them to understand that while they may be speaking in a normal conversational tone to us, it sounds like they're announcing it all on the public address system for the entire hospital to hear.

OK Michael, so you're 50 and you have an ileostomy on your right side. How many times do you empty your bag a day?

Umm...ya... nurse... a little louder and maybe the security guard can hear you at the front entrance. Come on man...

Anyhow, thank you again for your thoughtful responses. I really appreciate every comment.

Life is Good!

Be well,

Michael