My Story. I'm New to This MaO

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Beachboy
Jul 22, 2023 3:16 am

Hello everyone!

I've been reading many of the stories and different topics. So today I decided to join and for the first time tell my story. In July of 2022, I started radiation therapy for prostate cancer. All went well until my 40th treatment. I started to feel run down and suffered from fatigue. After my final 46th treatment, I was really sick. I lost 35 pounds. My radiation oncologist said I would recover in a couple of weeks. Well... I got sicker... and sicker. After 2 weeks of misery, my doctor really didn't know what to do. I couldn't eat, had horrible fatigue and fever. Finally, he told me to go to the emergency room. Once there, they admitted me to the hospital and told me I had a sepsis infection. After a week in isolation, they discovered I also had C Diff and peritonitis. I was put on powerful IV and oral antibiotics. I still couldn't eat and continued to lose weight. After nearly 3 weeks, doctors told me the infection was unchanged. I had multiple CT scans, but doctors couldn't figure out why the infection remained. Surgery was a last resort because the radiation permanently alters tissue, preventing proper healing. My infection doctor finally told me: I couldn't continue on antibiotics due to eventual bacterial resistance. Which meant I would probably not survive much longer. By this time I was in intense, constant pain. I refused pain medication. But finally, I couldn't take it anymore. I agreed to emergency surgery. I'm crying as I type this. This is the first time I've ever fully recounted what happened to me. It was so hard. Well, I had surgery that night. I told my surgeon I would live with whatever he had to do. He figured the operation would last 3 hours. Well... it lasted 7 hours. My wife was in the waiting room. Surgery finished at 1:00 am. My wife didn't know what had happened; she figured I would have been in recovery hours earlier. The hospital was shut down, no one was around. So she went back to my room. She thought maybe I had died. The doctor must have come out when she was gone. After I woke up around 4:00 am, I was in my room. I texted her I was OK. She is still mad about how it all turned out. So why was I so sick? 15 years earlier I had 3 hernias surgically fixed with mesh. Over the years, 2 of the meshes migrated into my bladder and intestine. Eventually, my intestine was perforated allowing stool into my abdomen, causing infection. Lucky for me, my surgeon was an expert in intestinal and hernia surgery. He had to remove all the mesh. That's what took so long. When I woke up... I felt normal again, not sick, no horrible pain. What an amazing feeling. A portion of my colon was removed and a colostomy installed. I had hiccups for 3 days which thankfully faded away. A few days later, a huge hole opened up at the bottom of my surgical incision. That took 4 weeks to repair. I was malnourished and really frail. Finally, my appetite came back. For the first time in 2 months, I ate solid food. Fortunately, my bladder didn't get perforated. I gained back 20 pounds and returned to full-time work 4 weeks after surgery. A month later I suffered from post-sepsis syndrome. Most of my hair fell out, my joints were inflamed, and a lot of my skin peeled off. I could hardly walk. But still made it to work every day. I had to buy all new clothes due to weight loss.

So it's now 7+ months since my medical adventure. I have avoided junk food and kept the weight off I lost. I was given the opportunity to have reversal surgery. After a lot of research and thought... I declined. I've had 11 major surgeries with no complications. I'll quit while I'm ahead. I'm OK with the colostomy. I have developed a peristomal hernia. So I occasionally wear a belt to push it in a bit. I have some prolapse. But better than retraction. I use a 2-piece system. Change bags 2-3 times a week. Change wafer once a week. Works well for me. Skin looks good. Never had a leak.

My wife is happy I survived and regained my strength. She does not like the colostomy. She does not like to talk about it or see it. I've shown it to my coworkers. They are amazed to see something that's normally inside the body, now sticking out. Only thing that really changed for me is this: Emotion. Whenever I try to explain to someone what happened to me... I cry. Really hard. I've hardly ever cried in my life. I was a tough cat. I had 9 hours of surgery for stage 4 thyroid cancer when I was 23. 2 weeks later I was surfing again. Never gave it a second thought. But this recent medical adventure really beat me down. In the midst of intense pain, I told my wife I couldn't take it anymore. I asked God to please make it stop. I feel in many ways God did save me. When I'm feeling a little down.. I read Psalm 18: 6, 16. As much as events went wrong for me in the hospital... they went right. My surgeon was one of the few who performed intestinal and hernia surgery at my hospital. And at the time, was the only one available to do it. I received amazing care. Nurses, technicians, doctors, administrative staff were so caring and genuinely concerned about me. I used to think that if I got really sick, I could marshal together my internal strength, my "can do" spirit and carry on. No, no, no. I couldn't do it this time. That's why in the depths of my despair and agony, I asked God for help.

I'm glad to be part of Ostomates. Thanks for reading my story.

Maried
Jul 22, 2023 4:20 am

You have been to hell and back. You have an amazing story of strength and courage. Thank you for sharing. My ex-husband never wanted to see my colostomy either, and I never wanted to view his anus, so we were even. Stay strong; crying is a good release.

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patrickrichardson1946
Jul 22, 2023 7:00 am

Wow, BeachBoy, compared to you, I had a walk in the park. You have been through the furnace and come out gold. Good on you, mate, that after all your suffering, you have won through. Patrick

eefyjig
Jul 22, 2023 12:05 pm

Beachboy, what you have been through would bring a mountain down. The word traumatic is an understatement. This experience has left a mark on you and your crying is allowing you to process it all. I love what patrickrichardson said above, "You have been through the furnace and come out gold." I also think your wife may not be avoiding your colostomy due to any ick factor; I think it brings up her own emotions, ones that are hard to keep feeling, of thinking she lost you, of pain and fear.....

Thanks for sharing your story. All of ours on here differ but the ptsd, fear, depression and anxiety we share.

AlexT
Jul 22, 2023 1:51 pm

Radiation sucks, I had the same wouldn't heal issue. Glad it all ended on a positive note for you.

 

Living with Your Ostomy | Hollister

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Axl
Jul 22, 2023 2:02 pm

Hi B

Well, that's a very difficult tale you have there. I have had much the same experience, as have others, and a lot of us have been to some very dark places, and sometimes giving up seemed like a good idea at the time. There was a time when just thinking about what had happened to me made me cry, let alone talking about it, which I have rarely done, but that's just me. Anyway, we just seem to keep marching on and eventually come out on top. All this suffering does make you stronger, as you already know, and this recent experience is still very raw for you. I hope you get back to full strength before long, as we all have things to do and places to go.

Axl

Morning glory
Jul 22, 2023 2:05 pm

Beach boy. I echo what everyone else expressed. I will add that I hope you continue to look to God and scripture to help you navigate your life.

bumblebeebob9
Jul 22, 2023 4:14 pm
Reply to Morning glory

Beachboy, you cried while typing your story, and I cried while reading about all of the challenges you bravely faced. Fifty-some years ago, I almost died on the operating table at 2 AM during emergency surgery, while bleeding to death with fulminating ulcerative colitis. Minutes before I was rushed to surgery, my mom and dad were crying, and I said, "Don't worry, if God wants me to live, I will be okay!" I had lost over 60 pounds during 3 months in the hospital, and my blood pressure dropped to about 80 over 50 (near death) during the operation. Days later, I was asking, "Why me, God!?" I soon realized that my life was spared in order that I might help other patients learn to adjust. And "adjust" you have definitely done, and you can be very proud. As the years go by, your story will be helping many hundreds of ostomates adjust to their situation in the realization that circumstances could have been much worse. They will likely thank God for everything. I'm 79 years old and have fortunately had 58 years of an enjoyable and successful life with an ileostomy. Several happy marriages, three children, and a good career say it all. Beachboy, I'm hoping that the administrators will continue to spotlight your writing over the coming years. Thank you again from Bumblebeebob.

Dogen's bag
Jul 22, 2023 5:13 pm

You are amazing.

Period.

TerryLT
Jul 22, 2023 9:10 pm

Hi Beachboy,I'm so glad you joined us and told your story. What you have gone through is unbelievable, and I'm impressed with how you have prevailed. It's a really good thing that you are able to cry as it can have a great therapeutic effect. Your wife may not like your ostomy, or ever gain the acceptance of it that you have, but I hope she is supportive and empathic with everything you have gone through. You have proved yourself to be a very strong person, but we all need help and support, especially from our loved ones. I hope you will continue to reach out to us and be a part of our group, as you will definitely find lots of encouragement and support here, and even some laughs, something else we all need!

Terry

Beachboy
Jul 23, 2023 12:33 am

Thank you everyone for your kind words and encouragement and sharing your story. We've all been there.. in the hospital. Suffering pain, anxiety, fear of the unknown. Through the miracle of modern medicine, we survived and got to go home. Once I get a better handle on my emotions, I'm going to volunteer at my hospital to talk with patients going through what we have experienced. I've done it in the past for thyroid cancer patients, and it helped me as much as them.

Stay strong.

Dan. AKABeachboy

Ebony&Ivory
Jul 24, 2023 6:05 am

Beachboy your story brings back memories of those first months and years after I received my ileostomy in 2017.

I'm not going to go into the challenges I had physically as I learned to manage my ileostomy. I want to talk about how I learned to accept it and to not be ashamed that I had it.

My ileostomy probably saved my life. The quality of my life improved 1000 from the very beginning. For the first time in 10 or more years I wasn't on the toilet every 30 to 45 minutes 24 hours a day. I was literally living with no sleep! My anus was raw!

My attitude about my ostomy began to change as I began to live and enjoy my life again. There were some things I had to give up forever but so many more I regained. I stopped worrying about the bulge as I have a hernia behind my stoma. I don't flaunt it, but I don't care if someone notices it and stares. It's no different than any other scar that people have to live with. A skin condition or a missing limb, a burn victim or hair loss. There are probably more people living with scars than not.

I choose to join the ranks of those who don't give a scar the right to define who I am. I'm still the same person I was before the ileostomy and most of the people I know are happy to know what it it's all about and that they can treat me as they always have. I'm not disabled! They don't have to treat me differently. They know why I go to the bathroom so often. Not hiding the makes my life easier. I'm going to live my best life and enjoy it shamelessly.

Jo aka Ebony Ivory

Doe1mama
Jul 24, 2023 1:56 pm

I agree with what everyone else has said. Crying is a needed release at times and I believe in the power of prayer. In addition to my husband's ileostomy he had a prior stoke. The stroke left him much more emotional. Now he can cry while watching a movie or even a moving commercial. It's been quite a few years now, so when something moving comes on TV I look over at him and ask "you gonna start?" We both end up laughing.

You've been through a lot. Give yourself some time.

Jayne
Jul 26, 2023 10:12 am
Reply to bumblebeebob9

Yes, I iterate the hope that the administrators continue to highlight your story because I feel on a spiritual level - whether one considers oneself religious or not [I am not a religious person - but respect those who are] crying is part of the process for relief, letting go, and this is a very necessary process which we do not all appreciate is part of healing.

Sometimes a mantra can help; it allows one to process and release but at soul level... we are all on a very specific journey, and it is different for all of us.

I iterate that perhaps we cannot all accept the trauma of another - because it touches traumatic memories we have within ourselves... So, just a suggestion, perhaps if you find a mantra which works for you... especially one that you do not understand on an intellectual/cognitive level - it may help at soul level and just maybe, in time you may be able to share with your wife - so you both are able to fully release and share at a soul level.

In my most humble opinion, there is much we do not process at a conscious level.

Very best wishes... and thank you for sharing your personal journey... it will touch many of us... and at levels we do not fully understand.

Love from the UK

Hug yourself and breathe

Jayne

CrappyColon
Jul 27, 2023 4:01 am


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iMacG5
Sep 12, 2023 8:51 pm

Hi Beachboy.  I'm from New Jersey, the beach state on the other side.  I just read your July post and I thank you for sharing your experiences with us.  All of us here have a stoma but we're even more connected by just being people.  I think we're a little different from lots of other folks as you can actually feel the empathy, sympathy and compassion from the replies you got.  There's an abundance of real, live, caring people at this site and we're so fortunate to be able to share with each other.  We really try to help each other when there's the need and, for the most part, we understand we're not all the same.  That's the people part.  There are a zillion different physical, mental and emotional parts to each of us and I can't imagine any two of us being identical.  But we do have some important similarities starting with our stomas, why we have them, how we got them and we're here to share our own stories.  For some of us the journey was longer than for others. For some the journey hasn't gotten us where we want to be yet.  Some of us ask God for help and some thank God for as far as we've gotten.  

Please continue to share your progress with us.  It's folks like you who make this site so special.

Respectfully,

Mike