An Ostomate's Conversation with God: Seeking Hope and Understanding

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This topic delves into the emotional journey of living with an ostomy and seeks to find hope and understanding through shared experiences and support.
iMacG5

Not sure if this really happened. Maybe it was a dream, the pain meds or a combination. But I feel like I had this conversation.
Me: Oh God, why me?
God: I'm not sure I understand your question.
Me: Why am I stuck with this horrible appliance?
God: Are you asking why YOU have it instead of someone else having it or why you have the appliance, period?
Me: I don't want to wish this on someone else but there are lots of people who deserve this more than me.
God: Deserve? This didn't happen to you because you deserved it. And BTW that thing on your belly saved your life. Stuff happens.
Me: Why can't you just give the pain and suffering to the bad people?
God: I hear you and it sounds reasonable but it just doesn't work like that.
Me: More than that though, shouldn't I be rewarded for trying to be a good person?
God: It depends on how you look at it. If you believe in heaven then all the good things you do will make you feel closer to getting there. If you don't believe, maybe you should.
Me: Good people shouldn't suffer and it's just not fair.
God: I know, I know you talk about what's fair and just and how lucky some folks are and how you might have gotten a bad break but, believe me, it's way more complicated than that.
Me: Then help me understand, please.
God: I can't do that because you're only human and, as magnificent as that is, you're not able to understand my plan. It's really complicated. Trust me. Sometimes I even have trouble keeping track of things. It got so big in just a few hundred million years.
Me: If I'm to believe you created me, how can you hurt me this way?
God: Hold on, I need to stop you there. I didn't do this to you. When I created all this I did it for people like yourself and the other gazillions but, like I said, stuff happens and I've given you tools to handle it. It's up to you how you choose to do that.
Me: What can I do? I have one life to live and it's been compromised. I'm crippled.
God: You're an ostomate and, maybe, you have some other problems but you can certainly think, you type, you probably talk and emote and have lots of other faculties that seem to be working. You're way better off than lots of folks. And you know what? Most of those are not bad people either. You can share. You can learn to handle your situation better and help others do the same. You can laugh, you can cry. You can love and you are loved. Share and thank those around you who try to help.
Me: You're not helping me dear God. I still feel rotten and you're not giving me any hope.
God: Oh, but you do have hope. You're asking me to help you because you hope I can. Look, let's face it. I could do one of my miracle things and you would be back to the way you were before but you can help lots of others by the way you handle your situation. There's a big picture that's difficult to see.
Me: Well can't you just do it for all of us; Get rid of all the diseases, all the pain and suffering?
God: I could and I did for some already but that's another story. If you believe I can do all these things then you must believe I'll make it all work out somehow. Ya think? People are amazing; maybe my best creation. They invent stuff like velcro and tupperware, went to the moon and back and devise ways of getting through some terrible things together. Believe you'll survive this, help others survive and become an even better person along the way.
Me: Show me a sign, please dear God. Give me something to hang on to.
God: Well, for starters there's you. You know the difference between good and bad and you try to be good. You have some friends and family, some people who actually love you. I only created stuff for you to enjoy like mountains, streams, lakes and seas, flowers and trees, cats and dogs, then you make those things part of your life. You share my creations with other folks and you enjoy them even more. When you share your pain with others and theirs with you, you help each other endure. You'll help others who are hurting because you'll tell them about our conversation and they'll either believe you and have more hope or they'll think you're nuts. But they'll wonder. You'll accept your life and learn it can have more meaning now than it did before. Other folks will learn from you.
Me: I hear you but I'm still uncertain.
God: Believe that you will be rewarded for all the good you did and will do. I won't punish you for the simple mistakes you made because you're only human. You needed to make some of those mistakes so you could learn. Some, on the other hand, well, you know. Remember, I give you sunshine every day of your life; sometimes you just can't see it. I give you love every day of your life but sometimes you don't feel it. It's there. And those really bad folks, I'll handle them differently but you'll be OK if you trust. You've seen a lot of bad things that hurt you but you've seen a lot of beauty in people to give you faith.
Me: Well, I still don't really understand but I guess I should trust you.
God: When the time comes that you do understand, you won't care anymore because you'll be here with me in a totally different aura. All the things you care about now won't matter one bit then. You'll know a togetherness with loved ones like you could never have imagined. Until then, learn to listen, not just hear. Learn to feel not just understand. Learn what others need to help themselves get better. It works for us up here. There's no need to adore me and praise my accomplishments. I'm God and I can do anything. You need to adore and praise the beautiful people who work hard to make things better for others. Maybe you could be one of those people and then I'll praise you. Hey, I really need to go now and make some adjustments to the system. Keep in touch and never stop believing. Oh, and someday you'll thank me for all the good things you have right now. Later!
Me: Asleep

Did this really happen?
Mike

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WAB
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WAB
They have books 2 and 3 also.
iMacG5

Thanks WAB. I didn't know those books existed and, obviously, wouldn't have entitled my blog with those words. Wow! Hope I don't get sued. Is that author an ostomate? I need to do a better job with my homework. Sincerely, Mike

Degurosa

Whether you dreamt it or whether it happened, doesn't matter to me....it's just what I needed to hear right now! Been panicking about my future and this has helped. Thank you.

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
iMacG5

Nothing to panic about Degurosa. It'll all work out and you'll be sharing the good news with us down the road. Looking forward. Mike

itchy23

Believe me. It was the morphine.
Seen it. Been there. Done that.

iMacG5

Itchy, are you certain?
Mike

dinah334

That's a great story :)

Heidi92

You're not helping me, dear God. I still feel rotten and you're not giving me any hope. I can really relate to this. You did a great job putting your feelings in writing! Thanks for sharing with us.

iMacG5

Thank you, Heidi. We'll all be okay in different ways because we believe in different ways. I think it starts with believing.
Sincerely, Mike

Immarsh

Hi Mike, you don't have to feel better to help others. When we read the posts from people who are having a difficult time, it can make us realize that we don't have it so bad. Thanks for posting the Conversation with God. So many people must feel as you do. I know I did... and at times still do. I pleaded with God, as a 15-year-old, to make me better, to give me back my life (I was living in hospitals off and on for 3 years) and let me go back to school. I can't count the number of times (from age 12-15) that I cried myself to sleep, alone, in pain, while my parents and sister were at home. For a child or teen, it's all about today, not someday in the future. I don't know why I didn't turn into an angry, bitter person. I know my strengths, and I know my weaknesses (as my family, especially my grown kids, can attest to), but since my ostomy, I consider myself a walking, talking miracle. I wasn't supposed to live, but I did. And I didn't think I'd ever have children. In fact, several doctors advised against it... but I went ahead and trusted God and had two healthy children. They are my miracle babies. But both of them have IBD, one with ulcerative colitis, and the other with Crohn's. Neither one has needed surgery as yet, but that might come in the future, and although they saw their parents live full and active lives, they will be devastated if it happens to them. Each person copes the best way possible, for him/her. You're so lucky to have a loving and supportive spouse. All I can say is that it takes a lot of positive self-talk and time to get to that OK place. We're all on the same journey, so keep doing what you're doing... and share.

iMacG5

Hey Marsha, thank you for being so candid. Boy, we've really been through a lot. Your “miracle babies” are fortunate to have you. If the time comes for them to need expert advice, you'll be there to provide it. You'll prevent their devastation because you'll guide them with your experience, your love, and your faith. You are blessed and your family shares in your blessings. Sincerely, Mike

Past Member

Hi there, I realize that I'm a bit late to this conversation... been traveling.. God ??? Let's see. I figure that any God that might be in control of this mess that we call our world is probably way too busy to come after me personally to bestow the gift of an ileostomy on my pained soul. He, She, It has lots to keep busy with given the turmoil that reigns in our daily existence, the world over!! I have no ongoing religious affiliation but am Catholic by birth. I gave up on organized religion a very long time ago, about ten or twelve years old. My Mom was a true Angel and very religious. She always thought that one bad thing happening was simply a sign that even worse things could have happened ........there were worse things that could have happened... or ..it could always be worse..... Very true, it can always be worse. As I told a friend recently, there are worse things than dying!! However, even being without faith in an all-powerful being, I would not wish to load this problem on God's shoulders. Does your faith really have you believe that God will pick you out of the crowd to attack or to heal, to injure you or heal you just on a whim, simply at random?? Is there a message in your illness, your trials and tribulations, in the agonizing pain inflicted upon you, are you meant to pass on some message, some goodness that comes from your suffering???? Did any goodness, any message come from your own personal tragedy....?? I have no belief in some higher power that guides us through this confusing, painful and yet often joyful experience that we call life. I believe that this whole thing, existence was set into motion and simply runs all by itself, a self-regulating system which has nothing personal against any of us. Life is simply life, it plays out regardless of our desires and wishes, our needs and hopes. It simply IS, just as we are. Having said all that... I took care of my sister's husband (brain cancer) for over three years. We made a great team and he enjoyed those three years immensely.. told me so. My sister could work and keep their insurance. They would have lost their insurance without a full-time carer (myself) and Brian would have had only three months of life. I was available because of my medical issues. I had enough medical experience to understand his meds and his daily needs. I did everything for him, including wiping his poor butt!! We formed a bond like no other, total trust, total respect for our respective medical problems. I had not known him well before this time and enjoyed his newfound, post-tumor, bubbly personality immensely. He became free when he became ill, free to not care about the silly things life throws at us. He even developed his Four Second Rule for dropped toast. If he could reach down and retrieve it within four seconds after he dropped it then he could eat it!!! He became so funny and so free of worry stupid things in daily life that he had a whole new life for those years. After we lost Brian, I wound up staying with my mom in Ireland after my dad passed away. I had surgery and went to Ireland to recover. Again... my mom had to have someone living with her in order to stay at home, in her own bed... this was her fondest desire, to be home. We had almost eight years to get to know each other as my mom reached her late 80s. We had our little conflicts at first, as new housemates always will but we found our feet and I had the privilege of helping her live out the last years of her life at home and mostly at peace. The only time she had ever, in her life, spent a night in the hospital was during her last week of life, which she spent in the company of the whole family, ten siblings. She got to live out her last years in the house that she loved, where all her children were born, midwife every time!! When I get feelings of despair or just feel that this life is bullshit I remember my time with my sister's husband and the good times with my mom. My mom would have been in an impersonal nursing home in Ireland and would not have lived more than a few months with the heartbreak of losing my dad weighing on her kind soul and active mind. Now I'm not crowing about how I helped my family and stepped up when I was needed. I am simply saying that I was there in the right situation at the right time. If I had not had all my own pain and suffering, gone through my own hell on earth, if I did not have this ileostomy then none of this would have happened!! I would probably be up to my neck in computer programming or some such all-consuming career, maybe have a houseful of kids myself?? Who the hell knows??? The fact is that circumstances put me where I was at that particular time.... life put me there, God is not even on my radar nor am I on his/hers.... in my personal and quite humble opinion. With this in mind, I have no God to blame, to scream at, to ask why me??? No God who is responsible for the ills of the world. We are a collective machine, the universe that just keeps on doing what it does.... it needs no intervention. This is the true beauty of God and the universe... however it came to be... not going there!! The universe is the one, the true..... perpetual motion device. Don't bother asking why it does what it does, there are no answers. If you have faith then good for you, I'm very happy for you, really!! I wish I could have the comfort of faith in something. I have faith in the universe doing what it always does..... It makes us happy at times in our personal lives and sometimes it makes us so unhappy that we want it all to end.... in between are the average, uneventful boring times of life, emptying shitty bags, fixing leaks.... or sitting on a hot, white sandy beach enjoying summer and swimming... not boring!! Sorry to be so long-winded but I had to put my stream of consciousness down here... you may find it interesting??... or not?? Any thoughts then pass them on. Thank you if you got this far. Magoo

iMacG5

Hey Magoo, thanks for your thoughts. I had forgotten what I wrote in that blog but I'll read it and try to remember why I wrote any of it. I read your entire comment and will address some of it. There's a lot we share and I look forward to doing that with you. Mike

iMacG5

Hey Magoo, I read your message again and thought I might reply without reverting to my original post. We change. Hopefully we mature and get closer to answers to questions we might have had forever. For starters, we're at a disadvantage because we can only think as people. Now, compared to the entire universe and everything in it, we're pretty insignificant and to attempt to understand how it all came to be is way beyond my ability. Sure, there's the big bang and whatever. So take God out of it and what do we have? We have something that came from somewhere or something and that was the beginning and here we are now. I ask, what was before the beginning? To me, religion could be very different from faith in a Supreme Being. We can't relate to that divine entity because we're only human beings. We've developed things to believe in. We've defined things as good or bad. We decide what's just or unfair and we ask God to fix things for us sometimes. I agree, Magoo, that this God we refer to is way too busy to pick you or me out of a crowd and hurt or help us on a whim or because we might have prayed real hard or just to show off. The prayer thing was my thought. You refer to life as this thing, existence, a self-regulating system and no real purpose except for it to be. But then you tell us of your selfless caring for your brother-in-law, the pleasure you brought him, the relief for your sister. YOU made it possible for him to live almost three years beyond expectations. YOU did that! Where did you get that strength, that energy and knowledge, that ability to actually extend another's life and make it pleasurable? Oh, from your life, your existence, that self-regulating system you've been part of? Suppose you were actually created or designed to absorb experiences, evaluate remedies, choose appropriate solutions based on priorities and all the other things you did so very well? What created or designed you to be that capable. We could just accept that stuff happens but I prefer to think stuff is allowed to happen. By whom or what? Not sure I'll learn that in this lifetime but I believe I'm allowed (maybe even expected) to use whatever skills I have to make my life and that of those around me as comfortable and rewarding as possible. That, given my limitations as a human being. Why do I believe this? It seems right to me and it doesn't hurt anyone. You seem to have done very well in the “doing” part. We might just think differently. Then, maybe not. I've got so much more to say about this but I'm annoying myself to a new level of discomfort. I can only imagine how you must feel. So before I contradict myself irreparably, I'll just thank you again and hope we continue to learn. Respectfully, Mike

dls

What kind of engineering? My husband was an engineer.

iMacG5

Hey dis, I didn't read whatever I had written here so I don't know where the "engineer" came into it. I did, however go to school for electrical engineering, became an industrial trouble shooter and retired as an Engineering Project Manager. Thanks for reminding me. What was your husband's specialty?
Mike

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