My Journey of Overcoming Challenges

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This topic shares personal experiences and practical tips for overcoming challenges related to living with an ostomy.
Inspired47

Greetings everyone. I just joined this site to share my experiences and maybe learn a few things along the way and possibly help out people that are struggling.

My story began last July when I was having pains in my side. My immediate thought was that it could be my appendix because I know a guy that just had his appendix removed a month before

this. So when I went to the hospital and got a CT scan, the doctor told me I had diverticulitis. He gave me some antibiotics and sent me on my way. I felt like everything was fine because he

made it seem like it was no big deal. He didn't tell me to receive any follow up and he told me what foods to avoid.

Fast forward to October 2019. I'm on my vacation to the Philippines visiting some of my friends I have over there and having the best time ever. On the day before I was about to leave,

I'm standing in the hotel lobby and all of a sudden, it felt like someone shot me in the stomach. I doubled over, my eyes bulged out and I had the worst pain ever in my groin and stomach area.

I thought, "What the hell did I eat!?" Well moving forward a little bit, I was up in the hotel room with my girlfriend trying to deal with the pain. She's giving me warm towels for my stomach

and trying to comfort me in anyway she could. She's not a nurse or anything but she did her best and urged me to go to the hospital. Me being the stubborn lug that I am said to her,

"Nah I'll be ok. I'll just postpone my flight and go home a day later." Well needless to say I got worse and worse and had no choice but to go to the hospital once I saw that my skin was

grey and my fingernails were purple! They told me that they had to do emergency surgery or I was going to die. There was so much pus and poison in my system, I almost went into

kidney failure. So laying on the operating table before they started cutting me open, I asked my girlfriend for her phone. I opened the camera and recorded a video message.

It was a goodbye video to my three grown sons.

I told them that I loved them and I was proud of them. I said I was sorry it has to end this way but I'll always be with them when my time is over on this Earth. Well I don't remember

EVER doing this! Luckily I'm alive and never viewed or sent the video. Now before I received any drugs to put me to sleep, I closed my eyes as the doctors were entering the room to begin.

That was when I saw my parents and my aunt and uncle. They've all passed away, but I definitely saw them. It was a concerned look on their face. Not a look of comfort. They were

behind a large glass window that had rain pouring down it so they were blurred. I feel they were telling me, "It's not your time yet." My son had told me the day before

that he proposed to his girlfriend and in my mind, I thought I have to live to go to his wedding!

8-9 hours later, I came out of surgery with a huge gash down my stomach and an ostomy bag attached to my side. My first reaction was, "What in the f****** hell is this?" I never even

knew what an ostomy was let alone saw one! I was in and out of consciousness for the next few days trying to understand what happened to me. I had dropped 40 pounds in about a week. My voice sounded like

Grandpa Simpson from the TV show The Simpsons. And I was so thirsty, I would have drank toilet water if they let me have it.

Well moving forward a few days, I started feeling a little better but was worried about getting home, and getting back to work, paying my hospital bill. (You can't leave the hospital until your bill is paid

in full in the Philippines). But slowly things started improving. I got in touch with work. I didn't have access to most of my money so my sister and son helped me out with that. Now my next problem was

getting home. It's a 15-hour flight if you fly direct! I booked a flight that stopped in Korea first for 5 hours, then to Boston then finally to Philadelphia. So after a very hard flight,

I made it to Philadelphia and my youngest son picked me up at the airport. He drove me home and I was so weak and sickly looking, he took me to the hospital where I remained for another week.

Turns out I had caught an infection (probably on the plane ride) and my surgical wound dehisced.

Once I got home, I started improving fairly quickly. My weight was coming back, I was lifting 5-pound dumbbells because that's all I was allowed to, my disability payments started coming in and

I was driving Uber and Lyft while I was out trying to make a few dollars. I couldn't stand sitting at home watching Netflix and playing video games anymore.

I went back to work full time January 1st of 2020. Might have been a little early, but I was just too bored at home.

So last week I had a colonoscopy (that was fun NOT!) to see what exactly was going on inside. I received the good news from my surgeon that I can be scheduled for reversal surgery anytime I want!

Which leads me to tonight, hopeful, excited, and a changed man in so many ways! I'm going to make it to my son's wedding! I'm going to surf again! I'm going to see my future grandchildren!

I'm going to marry that wonderful young lady (my girlfriend) that saved my life and stuck by my side for thirteen days in the hospital, never left my side once except when she'd go get me

something to eat downstairs. And when she did leave, her mom was right there with me too. I'm going to be a kinder person! I'm not out of the woods yet, but it is looking hopeful!

October 26 of 2019 I was solid as a rock! Great shape, full of life, strong as a horse, proud father of three smart handsome young men, feeling awesome because I have the best looking and sweetest girlfriend in

the world. October 27, I nearly lost it all! Life is very fragile and I'll never take anything for granted. If anyone wants to chat more or ask questions, please feel free. God bless you all!

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First off, this is a pretty cool site with 33,086 members. Get inside and you will see.

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It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

lovely

Hi Inspired47, sounds like you have really been through it. Glad you are on the mend and hope everything continues to go well for you. Sometimes it takes something like this to make us realize what we have. You are blessed to be able to have a reversal, so many of us don't have that option. Please keep us updated when you have a reversal. Best wishes

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Inspired47

Thank you, Lovely. I'm very lucky and blessed to be able to most likely have this reversed. I'll keep you updated.

God bless.

currentsitguy

I have a somewhat similar story, albeit I wasn't halfway around the world. It all started over two years ago. My wife and I were out at a local restaurant having a cocktail on their outdoor patio. Suddenly, I was doubled over in pain, so I said we should go home. I didn't know what was wrong. I thought maybe terrible indigestion, or maybe some infection. I have no idea how I drove home (my wife does not drive) to this day. I spent two days in excruciating pain. Finally, at about 4 AM, I said I needed to go to the ER. This was a huge decision since I was self-employed and to save money, I did not carry insurance, but I was really scared. I was told I had micro-perforated my colon, that I had diverticulitis, and that I needed to have drains placed into my abdomen. I ended up spending 10 days in the hospital. I was not told anything about how to move forward with this. Fast forward about 8 months. In the course of about 3 days, I suddenly found myself completely constipated and then a few days later while standing in front of the toilet taking a whizz, I suddenly passed a ton of gas, and not through my rear end, if you catch my drift.

Shortly thereafter, I developed a terrible UTI. Still being uninsured, I went to one of those urgent care clinics where I dealt with one of the most incompetent doctors I ever met. I told him my symptoms and he starts grilling me about cheating on my wife and that most likely I have picked up an STD. I denied this and basically walked out of the office. I was still uninsured, so I started doing my own research, and pretty quickly figured out I had developed a fistula between my colon and bladder. I bought a bunch of "fish" antibiotics from chewy.com (Cipro and Flagil) and was living on up to 20 Senna stool softeners a day and started the task of finding some, any insurance outside of the "open enrollment period". I finally did manage to find a catastrophic plan, it was better than nothing.

As my name suggests, I'm in IT. One of the places I consult for was a GI clinic, where a very close friend works. I mentioned what was going on when working at their office a few days later and before I knew it, I was laying in an MRI that very day and told that an appointment had been made with an incredibly skilled and well-known surgeon. Within 3 hours of the scan, I was sitting in her office and was told, "You're a real mess inside" and that I was to be at the hospital the next morning, and if I didn't, I'd be dead within days. She flat out told me I needed about a third of my colon removed, and that I would be in a colostomy for at least a year to heal. After surgery, I was told it was "fistulas everywhere" and that she had no idea why I was still alive.

Well, fast forward 16 months to three weeks ago. It was finally determined I was healed enough for reversal. I had since obtained a far better insurance plan, and things went really well. I'm almost back to normal. I was in for 6 days. Unlike many, by the time I left, I was completely up and around. I'm relearning bathroom habits, but for the most part, at this point, 2-3 times a day isn't bad. Particularly since they are not desperate. It's just more frequent than my regular as clockwork once every morning I used to be.

My wife, whom I've only been married to for 4 years, has been incredible. I would not be here if not for her. She has stood by my side since day one. We came together late in life. I was 48 and she was 50 when we married. She was worth every year of the wait! We have been through hell and back since we got together. We were sued by a former employer who first laid us off and then went after us, which ended up costing us 150k with lawyers (we won). Our home burned to the ground (we rebuilt). I came down with Type 1 juvenile diabetes. She got a weird autoimmune disease (achalasia) which no one has ever heard of that prevents you from swallowing even the smallest drink of water, let alone any food, then this.

Somehow we are still here, and in business, and somehow we both still keep cheating death and financial ruin.

Inspired47

Amazing story, mate!  Lucky you have an awesome wife to be by your side.  Wish you both all the best.  :)

 
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lovely

Hi currentsitguy, both of you guys have been blessed. I used to think I had it bad, but you can always look around and see someone in worse shape than you are. I think God leaves us here for a reason, it can be to help others along the way. We just have to listen to what we feel led to do. Glad you are doing okay now. God bless you and your wife.

britathrt60

Hi Inspired47

Oh my gosh, I literally had chills reading your amazing journey, especially when you said about seeing your mum, dad, aunt, and uncle who had passed... They were there watching over you like guardian angels.

I am so happy that you are alive and can spend many happy years with your family after the ordeal you went through... Take care.

Ange

currentsitguy

My wife and I like to joke that I can't afford to die, I'm too far in debt.

currentsitguy

I really am lucky. What my greatest wish now is to spend a few years with far less drama in our lives. :)

Bill

Hello Inspired47 & currentsitguy.

Thank you so much for sharing your stories. Whilst they are shocking in their own way, they are also fascinating insights into people's experiences with this condition and the social circumstances surrounding it.

I am only too glad that my own set of circumstances does not match yours in any way. However, it is good for me to read about other people's misfortunes, as it does provide an alternative perspective, which helps me to adjust to my own life with much more positivity. 

Thanks for that!

Best wishes

Bill

Inspired47

Thank you, Bill.  I wish you all the best, my friend.

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