3 Year Stomaversary... Reflections

It will soon be 3 years living with a colostomy. I've been lucky. No leaks or blowouts, parastomal hernia stable, skin in great shape. I do look rather deformed. A fact Mrs. B points out all the time. As if there's something I could actually do about it.

I've been having a battle with Diversion Proctitis. An eventual side effect of having a rectal stump. It would have been nice if my surgeon and gastroenterologist had warned me about it... before sending me home after surgery.

I thought by now, I was over the mental anguish from my near-death experience. Out at dinner last week, Mrs. B asked me to tell her about my hospital experience. I really have not spoken with her, or anyone about it. But I thought, "It's been a long time, why not."

I think I got out 3 words. Full emotion smacked me. Boom... it flooded my mind. The intense pain, puzzled doctors. Extreme weight loss. Told I couldn't go on much longer. Emergency surgery.

I just stared at my wife. Mumbled, "It was hard." And left it at that.

I've heard, "Time heals all wounds."

Guess the real question is: How much time.

Division proctitis is hard going - have they discussed further surgery with you? Which is hard to think about after you've had such a tough time already.

Based on my own experience:

Strong emotions need to be expressed to be processed. As long as you bottle them up inside, they will threaten to overwhelm you.

That said, I think you can express this pain in private if you aren't comfortable doing it with others. But it might help to sit down with your wife at home and answer her question. I completely understand not doing that in the restaurant.

But find a time and place that suits you and dig into these emotions. They should not rule your life.

Afternoon BB

Your post is an honest note for all to understand ....

The fact is there are individual routes of impact that we all hold within our psyche.

When speaking with nearest and dearest, while many of us can express our feelings, some elements of that which we have experienced have a permanent effect upon us at a very deep level ..... And while we may be able to speak in confidence to a professional about these, sometimes we hold our inner 'trauma' deeply, and it is through the love that we have for our partners that we instinctively protect them from feeling our own very deep scars .... and as such - we 'hold these'.

It is not always clear to the person concerned, IMHO, whether we as ostomates fully appreciate the difficulties of a 'watching brief' our loving partners experience ...... for they too feel deeply for us - but not as we do ourselves [even if they happen to be ostomates themselves].

Each one of us has a unique personal journey through our lives, and as such, the 'routes' of retained susceptibilities vary in their origin - according to 'how' we have processed, personally, the many elements of our own life's journey.

So yes, BB - I do understand .... and although time is a great healer in respect of our means of processing our 'emotions' - our own spiritual development is unlikely to be defined by the 'time heals' process. ....... And in any case, IMHO, time is but a concept ..... and its 'rate' is not a linear happening ....... circumstances alter individual perception in this regard.

I think many of us who have had long-term illnesses with which we have lived, sustainably [by that I mean overcoming/re-evaluating and adjusting over a long timeline] probably find it easier to speak in broader perspectives in support of others - because we have come to know ourselves - very well; especially if we have come through a longer/broader selection of 'challenges' - both health-wise and relationship-wise.

Sometimes I think, or more accurately feel that we are forever evolving - and as such we grow both into our experience and also have 'quantum leaps' too - which can sometimes move us nearer or further so far as individual associations with others.

I, as ever, wish a sound and caring understanding for each and every one of us.

Best wishes

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

Jayne

Thanks for sharing your journey, BB. It makes me wonder about my own unprocessed thoughts. I'm so thankful to have an understanding and supportive spouse!

I always add to the 'time heals' adage; it's what happens during that time. Making memories and changes sounds productive!

Airport Security Tips Living with an Ostomy with April | Hollister

Sure, life is what we make it ...... and what we do during our time.

And BB is an exponent of doing ..... actually living the life his ostomy - and his own work ethic, has enabled ...

~ ~ ~ ~ ~ Jayne ~ ~ ~ ~ ~

Just visited my gastroenterologist this week. He examined Mr. Rectum. As expected: inflammation and bleeding. At 67, I'm unwilling to undergo reversal or Barbie Butt surgery. I've spent enough time in the hospital.I researched possible treatments and wanted to know his professional opinion.

Asked him about the use of virgin coconut oil. He professed to know nothing about it. Ohh Kayyyy.

Then I mentioned aFMT. A shrug of his shoulders. He was unsure what I was talking about.

Told me the majority of folks with diversion proctitis have no symptoms, and bid me farewell.

So....what? Unlucky me is supposed to "suck it up" and live with it?

Just had a conversation with my physical therapist yesterday about how my own emergency surgery and follow-up resealing of my zipper, followed by chemo for the cancer, all worked to help me disassociate from my own body. It was definitely easier to check out than it was to stay present! In fact, when they took the staples out of my midline zipper and it was not healed at all and flopped open, I basically went into shock as the NP left me alone in the room to call the doctor. It is a lot to have this done and even more to make it through it all. Trauma is something that we can heal, sometimes in really small movements or moments, sometimes in bigger ways, and we need to be intentional about it. Part of my healing was to have a meeting with the NP and the head of the hospital so they learned that it was not okay to leave a patient alone in an exam room with their belly gaping open, among other things. Coming back into my body through the physical therapy process has been both painful and healing at the same time. It will take time and intention, and it will happen. You can heal emotionally too, from all you've been through.

I have not received therapy regarding traumatic stress - but I appreciate that it can transform and help greatly - notwithstanding, I'll warrant that what is said here is very valid ...... To ignore something by way of denial is to allow lodgers within one's psyche - rent-free and uninvited ..... IMHO it takes INTENTION to process and thoroughly work through, acknowledge, and learn self-love and kindness to be able to begin to process and move forward ...... And without that intentional focus, flashbacks and the burden will remain.

I wish the best future for all those of us who have undergone traumatic experiences during our medical journeys.

~ ~ ~ ~ ~ Jayne ~ ~ ~ ~ ~

Thank you for your very insightful response; it hit home for me. I've been ill since birth, am used to fighting and being grateful, even if it's for what I don't have. I've lived more than twice as long as predicted. Thirty years of that have been with 8-hour infusions every other week, which leave me sick for several days. I was okay with my ileo at first; I'm used to adapting, but I'm finding it harder to lately. As for relationships, my husband now treats me like a helpless patient, and it drives me crazy - I'm still Heidi! Sorry, I didn't mean to go on, just feeling overwhelmed.

So sorry for your experience. I'm getting the impression that there needs to be more advocacy for us ostomates... We may be creative folks, but we can't make these situations/symptoms up! I recently decided to try therapy for handling my collection of illnesses and issues, and even the therapist doesn't believe me, just wants to medicate me and delve into my past. I want to talk about dealing with my future! I tried to tell him about a business plan I'm working on, and he handed me a wheel with different "feelings" on it and the emotions related to those feelings. We're not crazy; we just live with a bag of feces attached to us... and sometimes find ourselves covered in it... covered, not full of it!!

My husband fell into a pattern like that after my surgery. And for a while, it was warranted. But as I've gotten better, I pushed back on his attitude. It takes some effort, but I think you can teach your husband to let you be more independent and less "helpless."

Thank you for describing your experiences.

I've been married 38 years. Over the decades, many things have changed.

We are now like that show, "The Odd Couple." My wife is Felix... I'm Oscar.

Every week she sorts and compiles our trash cans. Cleanest, neatest cans you will ever see. Me... I just toss everything in. My colostomy? No more sympathy. She no longer babies me or freaks out when my stoma blows out a few toots.

So it's good. I'm not pitied or treated like I'm handicapped.

Our lives are not easily described. A "wheel" with feelings on it is meaningless. There isn't a good answer. What I've found that really helps me: is having faith. My wife has faith too. She trusts I know what I'm doing.

I've lived with stage 4 thyroid cancer since 1983. I've learned, no matter what, to keep my head down and keep pushing forward.

Thank you for your honest, thoughtful, and supportive reply. My hubby and I are opposites, too, and he's a retired firefighter/medic, so his need to help is automatic...we're working on it. Guess I haven't fully reached the acceptance stage; never expected this to be such an emotional journey. At first, I was so grateful just to be alive, then I made it through the awful months of complications. I had a month where life seemed like it had reached a new normal; I even went away for a marvelous three days in a treehouse cabin. Now I'm struggling with a "funk." It helps tremendously to know I'm not alone. And yes, faith is something to hold onto for dear life; it's always there and can't be taken from us. Best to you -

It's good to speak - particularly to somebody who can empathize and maybe share a perspective or two.

It is so true, though - that no matter where we find ourselves on our own journey, there is always another - who, in our own hours, we feel for, in that we are so grateful that we do not carry their particular burden .....

It's that concept of trekking into the wilderness, finally making it to the highest slopes - exhaustingly, coming to a halt and, along the narrow ledge, there is the entrance to a surprising cave: A sanctuary. And as one gingerly enters, one explores deeper and deeper into that cave ........ whereupon one comes to a clearing.

Within that 'clearing, be it a high domed cave or the elongated cavern ....... wisdom and rest are encountered.

Sometimes alone. Sometimes in the company of many - but more usually through sharing with one particular source.

We take time to reflect. To renew.

It comes the time to leave ..... and as we journey out of our safe cocoon, we come to the cave entrance.

We have learned to understand that we may pick up whatever 'bag' we choose to leave with, that has been left for our choice at the entrance.

Oddly - or perhaps very befittingly, out of all those options available to us, we pick up the very bag with which we entered.

But somehow it no longer feels as heavy and constraining!

We chose that which best fitted ourselves - for that which we bear - is crafted just for us: And so it is that we progress our journey along the path that we have chosen - albeit that at times we see the green grass elsewhere - We do learn the familiar and sometimes encounter the extraordinary - in a way that we never perceived before.

Hug

Best Wishes

~ ~ ~ ~ ~ Waves from a windy hillside ~ ~ ~ ~ ~

It has been chilly today in Mid Wales

Jayne

PS sorry for the miss-keys and spellings!