Coping with life after an ostomy: Why me?

Hey Skylar, I'm curious also. About 25 folks commented thanks to Walk6076's post. Hope all of you are OK and even brighter than you were in 2015 if that's possible.
Mike

I have had my ileostomy since July 12th of 2017. I got sick after eating supper one night. I had no notice or nothing leading up to it. I went into emergency surgery and came out with "Maxine" on my side. I have gone through most of the stages so far but am struggling with the "why" question to this day. I used to beg God not to take my life when I prayed at bedtime. I had so much I wanted to do, watch my grandbabies grow up, graduate high school and college and get married and ultimately have a great grandbaby to hold and cuddle. Now I thank Him most every day for allowing me to see the sun come up and I am eternally grateful to Him for putting me in the right place when I got sick so that the best surgeon in the hospital was on call. I was very close to death but when I woke up in ICU, I cried very hard because "Maxine" will forever be a part of me. Sometimes I hardly notice her but other times she is very stubborn and argues profusely, often causing me pain but without her, I would be 6 feet under. I talked to God for the three days I was in ICU. I asked why me, why now? I didn't get much of an answer except that I was alive and would be able to do all I wanted with a few lifestyle tweaks. The surgeon says that he does not know why all my lower bowel died within 24 hours. He could find no cause except that it was all dead and had I waited even one more hour, I would have been dead. God saved me that night by guiding the surgeon's hands and giving knowledge and skill to the anesthesiologist who kept me alive while the surgeon worked on me. Every day that I draw a breath is a blessing to me. I am learning more and more about "Maxine" and what makes her happy and sad. I miss a great deal of the foods I used to enjoy and take for granted. I study constantly and ask a lot of questions on this site. The people here are kind, knowledgeable and definitely know what I am going through. I ask, listen, learn and even share what I have come to know. It helps if you try to put the "why" away for a while and think about "what is next?" If you spend some time being very quiet, God will tell you what He has planned. I bet it is going to be wonderful! God bless you with peace and understanding and great love! Pamela Conley, Billings Montana aka Freedancer

Hi Freedancer. It's wise of you to suggest putting the "why" away for a while. There's a reason for everything, but sometimes we mortal humans won't find that reason. For the believers, "God works in mysterious ways". So for us, there's faith. For the nonbelievers, well, who knows? Thanks for your thoughts. Mike

Hi Freedancer, and fellow Ostomates, during the years I was a kid and sick with Ulcerative Colitis (12-15) all I could do was question why me....why was I so sick, why couldn't the doctors cure me, why was there seemingly no end. After nearly 4 years, at the age of 15, my parents and doctors told me I was going to have surgery. I was apprehensive, but so happy to finally be disease-free (Ulcerative Colitis), and I accepted my ileostomy with gratitude. There were some difficult times, but for the last 54 years.....it's been my badge of survival. But now I find myself at 69, with so many medical issues, all stemming from those early disease years. As a child, I was able to envision a future of health...someday. At this time of my life, I find that more difficult to do. I never blamed God when I was a kid.....but these days, it's a challenge to realize that "the best / or healthiest years of my life may have passed. It's not that I've "lost hope", just that I'm coming to accept that the best of times doesn't last forever. So I do the best I can with the time I have, I'm determined to enjoy the good days, smell the flowers, cherish my memories, and when I can, make new happy memories with family and friends....It "ain't over" till it's over, and although I see 10 different doctors, and life can feel like I'm a roller coaster.....I'm sticking with the ride as long as I'm able.

Well said, Marsha! I completely agree.... It ain't over till it's over. Have a nice weekend. Sincerely, LH

Akail, my original post was three years ago and there is no way I would have predicted what a great recovery I've had. I run, swim, even go to the trampoline park with the grands. It gets better.

Hey Akail, I think you are your inspiration. Beyond that, there are many folks whose shared experiences will further inspire you. We're in a good place here. Respectfully, Mike

Hi Walk. Thanks so much for your success story. Sometimes folks are very active here when they're hurting and in need of help. When they get better, we often don't hear from them anymore. I'm happy with all the progress made by so many and very much appreciate the follow-up. There's no better inspiration than reports like yours.
Mike

"My original post was three years ago and there is no way I would have predicted what a great recovery I've had. I run, swim, even go to the trampoline park with the grands. It gets better."

Walk6076

Was a reversal done, where the "Hooked you intensities back Up? Or is it a permanent ostomy, and you're doing well with it?

GLAD TO HEAR you're doing better!!

LOL, my name is Anthony too.

Hey Anthony, guess what! My middle name is Anthony. My Confirmation name also is Anthony. I have two Anthonies! Sometimes you just can't have enough Anthonies. Mike

Hey Walk, freedancer here. Well, I had to have everything redone on the 17th of February 2018. Once again, I was very close to death but God saw fit to guide the surgeon's hands again and pulled me through. It turns out that the first surgery failed and my ileostomy failed about a month after the first surgery. It strictured and nothing could get through except a little air and a small amount of liquid. The new doctor who did the second surgery was shocked when he saw the size of my intestines backed up behind the pinhole size stricture. I also had many adhesions that he had to cut away. I was a mess in there. He said it was the worst he had seen in his career. "New Maxine" is working very well now and I am back to square one where I have the really bad nighttime anxiety, depression and once again questioning "why me again?" I am glad that God saw fit to save my life again. I am also glad that I am feeling better and that things are finally working like they are supposed to be working. I hope you have been well and I hope you won't have to have any redo of your ileostomy.

iMacG5:

Mike Anthony, that sounds good.

What was my mother thinking?

Beautiful Italian name,

Anthony-Diodati!! (De A Dot Ti)

Then in the middle comes RALPH!!!!!

LOL

My confirmation name is Frank, after my beloved grandfather, Frank Diodati!

Hope you and everyone is doing well!

OMG freedancer........You had it worse than me!

My first resection surgery failed as well, didn't heal properly, (not until after my second surgery.

But the waste was leaking into my body cavity, and I got very sick after 3 or 4 days post-surgery. (first one)

Woke up with the ileostomy after my second surgery.

But was able to have it "reversed" a few months after my chemo ended.

Hope you are doing well too.

Best of luck to everyone and may God continue to bless you all!!

Hey Walk, it's been two years for me. The first year was a struggle. Why me? What did I do to deserve this? I found myself watching a 9/11 video. When it came to the part where people had to leap from the towers, I said, "Why them? What did they do to deserve that?" I got off my high horse and started looking at those who still loved me. Some days do kinda suck, but that was life beforehand also. I'm sure you have family that are glad you're still here. I was near death in ICU. I did it for my nephew. I didn't want him to have to deal with my death. He was too young. So he saved my life. I know you have a life out there waiting for you. It might be different than your old one. Find it and embrace it. It's there just for you.

Hi, I've had my ileo for 33 years. And when I first had it, I went through that stage wondering if I did it to myself or if it was hereditary. Also, the "why me?" And my doctor said it's just the body defending itself against what it thinks is an attack, the Crohn's in my case.

Yes, I wonder why this happened to me. Is it karma as someone else has said... What did I do to deserve this? I had chronic diverticulitis and had an elective laparoscopic sigmoid colectomy. I went home on post-op day 2. On post-op day 4, I developed an anastomotic leak and peritonitis. I needed emergency surgery, colostomy, and Hartman's pouch. Now I have a big incisional hernia as well, my lower belly looks like an ass. I am scheduled for reversal of colostomy and temporary ileostomy and abdominal wall reconstruction.
I am scared to death. I am seeing a therapist. But I have nightmares from what happened. It has ruined my life.

Hi Iz. So sorry you're going through this crap. You had to expend a lot of energy just to get so far into this post and I'm glad you did. Most of us are skilled ostomates who experienced some stuff similar to what you did or will. We can tell you how we survived, how we thought we wouldn't and how our lives were changed by all of it. Just because we're sharing in this forum must mean we're surviving with some purpose. Sometimes I thought the emotional pain was way worse than all those surgeries, the chemo, radiation and all those fingers, thumbs, pipes, etc. shoved up my butt. We do what we must to get through it with hope that we'll be better in time. We are better and you will be. Do whatever you need to do, no shortcuts, just concentrate on survival for now. Good stuff comes later. With respect, thank you for sharing, Mike

I purposely never go down that road. Would have, could have, should have? All serves no purpose. When I was in the hospital, I never even thought, "Why me?" This is my journey, and I will get through this. That was all I thought. I'm alive and healthy and living a fairly normal life. The bag is not perfect, but I'm going places and doing things and no longer have any pain or all those doctor appointments. This is my experience, and yours sounds much worse. I'm sorry. When you need to vent, just know we are all here for you, anytime!

Hang in there. Learn how to roll with life's punches. You are still above ground. Accept and move on.

Sound words head! I've had 2 man bags for 3 years now due to rectal cancer. 2 tumors were recently removed from my right kidney, upper left lung, and metastases from the bowel. The last 2 CT scans have been clear, thank God! I live in England, UK, and used to fly all over Europe on holiday. But since my operation in May 2019, I have never gotten on a plane for fear of a mishap or leak!
Do other people have this fear? How have you overcome this? I know having one bag ileostomy or colostomy is much easier to manage than a urostomy, as your output is more frequent.
It is a major juggling act. You are constantly monitoring even when you're relaxed in your own home. So, how can I manage on a plane?
I recently bought a motorhome specifically because it had a shower room and toilet, etc., as I felt it was the only way to travel relatively relaxed, knowing if I have a leak, I'm not far from help? Thx Adam

I think it's normal to ask why me even though I have had mine for almost 50 years. Sometimes I think, how weird is this and how many people do I know that have this situation? But, on the other hand, I am thankful that this solution was available to keep me alive. It hasn't prevented me from traveling to Europe and even Australia and New Zealand. I prepare ahead of time before going anywhere, even 10 miles away. Along with pouches, etc., I keep an extra change of clothes in my car or in my carry-on.
Take care and hope you can just get used to the idea that this is your life and before long, you don't even think about it. Good luck.
Con

Hey Walk, you started this around 7 years ago. So glad you did.
Mike

You're welcome and I'm still thriving.

In the beginning, I asked myself why me, why now and went through the usual roller coaster of emotions.

I'm now 8 years deep post stoma and every once in a while, I still ask myself this question. The hard truth for me was realizing that, sometimes bad things happen to good people. And often, there is no good reason why some of us get dealt really sh*tty hands while others go through their entire lives without a single scratch on them.

No, it's not fair. But life was never meant to be fair. And it took a lot of hard work in order for me to fully embrace all of my limitations and life challenges. There's a lot of things I can't do that many people take for granted. But there's also many things that I can do that gives my life purpose and meaning.

I have my good days and bad ones. And this will always be the case. But I think as long as I can keep my mind sharp and aware, and continue to do the things that make me happy, in the end, that's good enough for me.