An Ostomate for Life. Probably

My wife and I met with my surgeon this morning. As some of you may remember, I had reversal surgery scheduled for 10/10. After much discussion with my family and private conversations with people here, I decided to not do the surgery. At 75, I am just not willing to go from the known to the unknown. My wife is also concerned about my recovery, because of me almost dying on the operating table the last time. I am not as concerned about that as she is, as I am in pretty good condition for an old fart (oops! forgot that I can no longer fart! :-))

I want to thank the folks here for helping me come to this decision. Especially IGGIE and Jodie (Crappycolondiaries). Their support and input has been tremendously appreciated. There are so many good people here and I appreciate you all. Thanks!

Daniel

Hello Daniel.
Thanks for the feedback. I made the same decision a few years back and have not yet regretted it. Obviously, I know that it it not always easy to manage a stoma, but (as they say) 'the grass is not always greener on the other side'.

Best wishes

Bill

Thanks, Bill!

Hi Daniel,

As I've previously posted, I declined reversal earlier this year. I believe you made a wise and experienced choice. I'm 65 and would rather deal with my stoma... than undergo surgery again. And possibly have toilet issues that might not resolve. Also, my medical adventure last year was hard on my wife.

Take care

I was wondering about how you were doing. I'm happy for you making the choice you feel most comfortable with. Besides, I was gonna miss your bag jokes. Always go with your gut... Wait a second...are you rubbing off on me?! 😁😉

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi Daniel, I know how much you were looking forward to your reversal and I can imagine what a tough decision this was for you. The thing is, you can decide to change your mind at some point, right? Things would have been a lot more complicated if you had gone through with it and then regretted it. I think it was a well-thought-out decision and I applaud you. On the selfish side, this means you will (hopefully) be sticking around! You are a welcome addition to this forum and I would have missed you. You can continue to be a member of this very elite club!

Terry

Better the devil you know! Good for you.
👍🏼

https://www.youtube.com/watch?v=qma30UMJjHg

Thanks, Dan. My whole family is glad I am not doing it. I have mixed feelings. But, life is best when things are mixed. :-)

Daniel

Hi Terry. Yes, I can change my mind. But then, I would have to deal with insurance deductibles. I made the mistake of going onto my wife's family plan instead of Medicare when I retired. Now, I can't join Medicare until she retires and loses her insurance. Otherwise, I would have to pay a penalty every month for the rest of my life. The insurance cartel will get you one way or the other.

And yes, I will be sticking around. I would even with a reversal. People here are important to me. It's difficult to truly understand what life with a bag is like unless you got the bag. :-)

Daniel

Thanks, Audrey!

That insurance penalty is costing me $52 a month for me to get on Part D. When I got on Medicare, I was in good shape and figured I never need Part D. Even with the penalty, that Part D that I got has been saving me thousands every year on just one medication.

A year ago, September 2022, I made this same decision which I posted on this site. It started with a trip to the surgeon to discuss my ileostomy reversal - something I was determined to have since my emergency surgery 2 years before.

After several days of trying to set a date for surgery, which required additional need for Dr. appointments (heart, Gastro., etc.), painful testing, and endless phone calls resulting in much frustration, I became disenchanted with the entire process and came to believe my failed efforts to move forward were in fact, “just a sign”.

Ultimately, I cancelled the whole works as I realized to go forward would bring everything I detest in my senior life regarding health issues - doctor appointments, hospital stays, bodily pain/suffering, medications that make me sick, and mind-boggling stress - basically everything I try to avoid and in the end no guarantees it would even be successful!

Why had I even considered this gamble? After all, my health had finally returned to normal. I joined this website in 2021 which has had a tremendous influence on my overall acceptance of living with a stoma and ways to care for it.

Hoping you will find this same peace going forward.

jb

I've not commented on your post before, Daniel, since I'm a failed J-poucher and didn't want to bring any negativity to your journey, but I have followed it. I'm reading your news now and hoping that you are truly at peace with your decision (I was with my permanent ostomy surgery and that peace feels great.) It really is SUCH a gamble, you just don't know what your outcome will be with reversal but you do know what it is now and there's got to be some relief in that.

~Lori

Thanks, Lori. It was a decision I put a lot of thought into. In the end, not knowing just how things would transpire and not wanting to put my family through another round of possible hospital vigils won out. I'm good with the decision. I've never been one to turn down a challenge, but there is always room for a first time. 😄

Daniel

Fortunately, I am not on any expensive meds. Fingers crossed. My wife wants to work 5 more years. My fault for marrying a younger woman while in my 40s. Hope she doesn't see this! 😎

Daniel

Thanks, JB. I have been quite fortunate with the surgeon I have. Not only did he frantically save my life, but he has been very supportive throughout. He has monitored me closely and was confident I would do well with the reversal surgery. Once he was sure I was ready, he scheduled it. He was also supportive of my decision to not go through with it. He's a hero in my life story. Not everyone has the same experience.

Daniel

Welcome to the club. 💩😜

Great news, Daniel. I know you will be happy with your decision and will be able to cope with everything. We've got your back so don't worry about anything. Regards, IGGIE

Thanks, Iggie. Your input was greatly appreciated and helped a lot in my decision. My wife and children thank you, as well. They were really not comfortable with me going through major surgery again. :-)

Daniel

Thanks, Sally. :-)

A brave decision. Good luck. Mine was supposed to be reversed in 6 months to a year, but the remainder of my colon was in such bad shape, the surgeon concluded that reconnection was not viable. That's actually OK - before my ostomy, my cancer treatments left me fairly incontinent unless I was on massive doses of Imodium every day. I'm actually doing better now with the permanent ostomy.

By the way, "(Oops! Forgot that I can no longer fart! :-))"  Actually, yes, you can. Just not where you used to!

After reading information on this site, I too totally decided against reversal surgery. I was 78 when I had emergency surgery on January 6, 2022, and almost died of sepsis. I just turned 80 in September and have learned to function with my new lifestyle, including participating in my performing tap dance group, so I don't want to upset the apple cart.

Joyce

Hi Daniel, it must be a tough decision, but you must do what's best for you and your family.

If you had asked me last year, I might have had a different answer, but not now. After losing some weight after my last surgery in March (32 lbs to date), my colostomy (Moana) is well-behaved and happy. My digestion is so easy on carnivore that I am happy and grateful just as I am. It is such a gift to live pain-free after decades of digestive and bowel problems. I hope you continue to have good health and a stellar attitude!

We are the same age as of September and I believe you have made the right decision - at least for now. Having a parastomal hernia, which I understand is normal for those with ostomies, would be my only reason to reconsider more surgery.

Secure the pouch, stay off the couch - keep dancin' and enjoy your senior life! JB

First time poster here. Had my colostomy surgery at the end of May and was told it can be reversed in December. I was and am still wanting it reversed but now with these discussions I'm getting a bit apprehensive about it. As I read your comments and the fact that you all seem okay with the extra appendage on your body, I find it to be an issue every day with me from the pretty often stinging itch, pancaking, blowouts, etc.

So that being said, other than what I have read in the comments, what is the issue with the reversal?

Besides complications from reversal surgery, you might end up with a poor quality of life.

Many variables affect reversal outcome. Your age. Underlying diseases like Crohn's, U/C, or some other intestinal malady. How much intestine remains. Skill of the surgeon. Type of Ostomy you have. Any prior radiation treatment in the vicinity of intestines.

I decided against reversal due to radiation treatment I received for prostate cancer. Plus, I'm 65.

Good luck

Well, I'm in pretty darn good health for a 76-year-old. Heck, the colostomy surgery was the first surgery I ever had. As for the surgeon, she is great and I have all the confidence in her.

I don't see her again until mid-November so I really don't know what to expect. I think I am most concerned about how I will feel right after and recovery from the surgery.

You have a colostomy, whereas I have an ileostomy. I have no colon, whereas you have at least some colon. Do you have a complete rectum? How much colon do you have remaining? Would a J-pouch be involved in your reversal?

There are a lot of factors that drive how well a person would adapt to a reversal. If you have a complete colon and rectum, you could very well get back to at least close to normal. I would not and could not. I empty my bag 7-8 times a day. I would never see solid stool. I would likely spend the rest of my life always having to know where a bathroom is. Then there is the possibility of fecal incontinence, particularly during the night when I would be unable to control it. And the thought of fecal incontinence during the day and always smelling of shit is not particularly attractive to me. Even if it is a small possibility.

I am also in pretty good condition for being 75. Other than my emphysema, which was severely worsened by a bout with pneumonia following my first surgery. But then, I was very sick with sepsis. When the surgeon opened me up my colon literally fell apart and it was a mad dash to even save my life. I cannot afford another bout with pneumonia. The likelihood of that happening is small. But, it is still there. And it worries my wife and my children. I made a list of the known things of living with the bag and the knowns and unknowns of connecting my small intestine directly to my rectum. There were just too many unknowns that could severely limit me in the things I want to do with the rest of my life.

The long and the short of it is that you should not put a lot of credence into my situation. It is probably radically different from yours. I really don't know as you haven't yet shared yours. I am only assuming you have a colon. That makes all the difference in the world.

I hope this helps.

Daniel

Thank you, Terri!