The Emotional Toll of My Ostomy Journey - Seeking Faith and Strength

My ostomy medical adventure damaged me. Deeply, emotionally. I'm unsure if I can ever regain my once confident self. Every day in the hospital, my health declined. Had sepsis, C Diff, peritonitis. Couldn't eat, continued to lose weight. Lost 64 pounds and became malnourished. Blood pressure was 90/60. Was put on oxygen and leg pressure cuffs. Doctors couldn't figure out why I wasn't responding to antibiotics. Infections refused to go away. I tried not to obsess about it. But after 3 weeks of horrible pain, in the far reaches of my mind...I was worried; "I'm not gonna make it." One day my wife visited. I couldn't talk... just flat out hysterically cried. And cried. My wife was stunned. In 37 years of marriage, I had never cried. Friends died, my mom & dad died, beloved cats died... never a tear. After that day, couldn't talk with doctors, nurses, my wife, anyone, without bawling. Nearing my 4th week in the hospital; my doctor, a surgeon, my infection doctor, and wife came in. They basically said I was out of time. Exploratory surgery would be performed ASAP. I agreed and told the surgeon I would live with whatever he had to do. I quietly asked God to please help me. A couple of hours later at 7:00pm, surgery began.

It's been 9 months post op now. I've been careful not to talk about it. My colostomy is very noticeable. Everyone at work wants to know what happened. Soon as I get a couple of words out.. I have to stop. I get intensely emotional. Sucks.

Went out to dinner with friends last week. I decided to talk a little about what happened to me. Boom.... Couldn't get 2 words out. Tried to hold it... but cried like a baby. Even writing this is hard.

I have discovered faith. I believe the Lord did hear my plea for help. And reached down from on high, took ahold of me, and drew me out of deep waters.

I've been watching the science fiction movie "Contact." A main theme explores faith. Believing in a higher power, without absolute proof. Jody Foster plays a scientist who does not believe in God. She goes on an amazing journey, and returns to a world that does not believe she really went. She is at a loss for words how to explain that it was real, not some made up baloney. She is asking everyone to have faith. When I'm at odds with having a colostomy, and not happy. I watch this movie. And remind myself: Have faith.

So many of us come away from the surgeries/medical journeys with more than the physical scars… The ostomy may just be the tip of the iceberg but there's so much going on beneath the surface (my son was home sick this week and we watched Titanic hence the iceberg reference). Being in the hospital for extended periods of time does a number on our brains as well. I've referenced the story somewhere about when I broke down for the poor nurse aide who I refer to as ‘Peter Pan' (green scrubs, red hair), if there ever was a guy who didn't know what to do with a woman who started crying out of nowhere, it was him. My whole family is in therapy after how sick I got last year… We thought the kids were doing well only to find out they didn't talk about how scared they were to lose their mom (a friend of mine who they'd spent a lot of time with had died suddenly the year before). Tears are cathartic. When you said deep water, I knew I'd heard a song (apparently a while ago) that reminded me of what you were saying. The healing journey is more than just a physical one. Thanks for being vulnerable and sharing how difficult this aspect of your journey has been for you.

Hello Beachboy.
Thank you so much for sharing your story. 
As you so rightly say: this type of communication can be extremely difficult. However, it can also be cathartic both for you and for those of us who can relate to your experiences.
Best wishes
Bill

{{{Hugs}}}

The more you discuss it with others, the easier it will become.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Take life one day at a time. Make sure you do one thing you really enjoy doing each day (reading, listening to music you enjoyed as a youth, writing, etc.). It will help with your healing. You have been through a lot. Stay 💪.

Beachboy, lots of sad things in your life but this one may be different because it's traumatic. Everyone on here has gone through trauma from their own medical experiences. My heart went out to you while reading your post. I get it. 😢

You have braved it out so far, better times lie ahead. Nearly everyone has shed a tear or two in these circumstances, some more than others, we are all different. I used to cry at the drop of a hat when in the full grip of that beast. I stopped talking to anyone but luckily friends and family put me back on the road to recovery. The last two can be great pillars of strength. You have discovered the power of faith, that alone will make things better. Best wishes.

I am so happy for you that you discovered faith. That is an important part of healing. When I had my surgery almost 50 years ago, I was in the hospital for at least 6 weeks. There were a number of problems. I prayed for help also. I remember it was quite a depressing time. But, eventually, I learned to live with it and thankful that I have had a "normal" healthy life. Keep your faith that you will too. You got this!

God is an amazing God. He never gives up on us. He is standing alongside and has been every step of the way guiding and giving you strength to pull through and heals us in all ways. Amen and praise God for healing you and pulling you through.

Thank you so much for sharing. It was hard to read your story without shedding some tears, because I totally understand. Sending hugs!

My faith and trust in doctors ended when I was 14. That was 49 years ago (when I was diagnosed with ulcerative colitis). I have to give them credit for keeping me alive, but my quality of life has suffered immensely. They still haven't found out the cause of ulcerative colitis or the cure for it, right? Why is it taking them so long to find the cause of colitis? Doctors believe that they "cured" me. I think that if they had the ability to give me a new, healthy large intestine/rectum, I would be cured and satisfied.

Sounds like PTSD and you might want formal therapy? We try so hard to be "strong," but there is no such thing. I'm glad you have found some solace in your faith. I believe you have gone through so much. There is no embarrassment in asking for help.

Sounds like PTSD and you might want formal therapy. We try so hard to be "strong," but there is no such thing. I'm glad you have found some solace in your faith. I believe you have gone through so much. There is no embarrassment in asking for help.

53 years ago is when I had my ileostomy, at only 12 years old. Somehow I believed my parents and the doctors had my best interest at heart, and at that time I suppose you could argue that. But knowing what I know now and the condition I was in, it didn't justify the surgery at that time (and may have never been necessary, only one quarter of the people with ulcerative colitis end up having to have this surgery), and at the very least I could have and should have had a temporary. (The cynical side of me suggests that they didn't want me to "test it out" and then have it reversed). But after it was done everybody sort of forgets about it and they move on, but you (I) are never the same. Some people recover from the surgery and live at least an approximation of a normal life but for others, such as myself, it's devastated the whole trajectory of my life. My parents are dead, the doctors are dead, they got to live their lives without regret, good for them. Yes, I'm bitter, I'm entitled. You took away my youth and my integrity, but you can't take this away from me.

Ditto

{[[ Big hug ]]

Have you thought about seeing a therapist? To help with your sad thoughts...

My ostomy, which is a hassle with buying bags, the noises, and explaining it to people, but having been given this life sentence of Crohn's disease that has affected/damaged so many parts of my body... the ostomy and Humira have made my life much, much better. I can work, had children, was married... now dating, go on vacation... just have a normal life... challenging and many happy moments... you need someone to help you find your joy.

I agree with you. I have my cats and my puppy. They are always doing something crazy to make me laugh. This morning, I caught Rocket chewing on his blanket. Read: EATING his blanket. I asked him what he was doing, he hid his face under the blanket, then peeked out with one eye. I about got sick I laughed so hard. Get a dog!!!!😁