Reflections from the "Fifty Year" Ostomy Club - Gratitude and Regrets

If you've had your ostomy for over 50 years, you probably had it as a child or at least a young adult. I had mine when I was 12 (after two years with ulcerative colitis). Looking back, I'm wondering what the long-timers feel has been the good and the bad, gratitude versus regrets. 🤔

For me, I was healthier post-surgery and resumed normal growing. And while not worried about being close to a bathroom anymore (although I really only had two "accidents" in two years), the process of figuring out the bag protocol while emerging through puberty was daunting!

The surgery, while probably crude by today's standards, has required little follow-up and so deemed a success.

My regrets and complaints: first, even though I was a child and not entitled to "informed consent," I could have and should have been more included in the discussions. Things were done to my body with no prior warning, having been signed off by my parents. (I was at a teaching institution and now realize some of these procedures were therapeutically unnecessary, and I have PTSD as a result). I only had an abstract understanding of the surgery (I was never shown any pictures or given an example of what the "appliance" was). And the surgery wasn't done on an emergency basis, but I was not ready for what I saw when I woke up post-surgery. 😬☹️

Second, the psychological component of treatment was inadequate. I was seeing a therapist (psychiatrist, but not on any psychiatric medications) but she was not a good fit and there was no post-surgery counseling or any offer of post-surgery counseling if ever I felt I needed it.

And so physically I've done about as well as could be hoped for, but psychologically . . . not so much.

I hope things are done differently today for children.

Thank you for letting me vent here. 🙄

52 card pick up in a few months.

Colostomy from the start.

Hi Shawn, I've had my ileo for 30 some years, and though I'm glad I got it, there have been some trying times with it: incompetent nurses, lack of info, and the steep learning curve when your head's messed up from anesthesia and drugs, and trying to figure out some kind of routine and what system works for you.

Thank you for sharing your story. I am always in awe of you folks that have lived so long with an ostomy. I like to think that things are better for young people faced with this life-altering experience. But personal experience tells me that it is probably nowhere close to where it should be.

Having got my ostomy at age 74, I am looking forward to the next 50 years with it! :-))

Daniel

Yes .... And then some!

Good thinking.

Yeah, it can be the luck of the draw.

Some things move on and some are a little strange ....

I guess we learn unique lessons through our personal experience.

Personally, I have a varied life with both good and less so good but also truly inspiring 'happenings' .... I guess, at the end of the day, it's how we process stuff.

My tip is to be kind to yourself, but acknowledge and try to be honest and live a balanced life however you are able.

Best wishes to all of us ..... for the good, bag the truly remarkable, and for all things where the verdict remains out .....

"It ain't over till the fat lady sings" or some such quote - and no disrespect for those with a larger presence either!

Best kind thoughts from the UK over some sixty years of history - nearly 50 with a colectomy [and a few months with the TIES experience prior to reverting - out of necessity - not from choice - to a collecting pouch again ....

Life goes on and moves forward ....

Hint ....

We need to be in the flow to move with life.

Jayne

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Holy shit, Shawn.!!

What an incredible story beginning at age 12. I'm sorry it sounds criminal to think some 50 years ago they did this to you, but then 50 years ago there was no protocol to follow. So I say you may have bitten the bullet there, but think about it as a blessing in today's management of IBD.

Today, surgery is the last step taken. You would be overmedicated with medicine to control it. A better path before surgery?

Biologicals, steroids, infections.

Strictures.

They say hindsight is 20-20.

I doubt a 12-year-old would ever go through surgery as a first step today, unless life-threatening.

I can't imagine you growing up with a bag attached to your stomach so young, but my 2 cents worth is this: after going through all those meds for forty years now, myself, it may have saved you from side effects. A much larger picture no one ever thinks about later in life.

Wishing you well. - Warrior

It's 72 years for me. I was sixteen and I also felt I had no voice regarding treatment. I was also in a teaching hospital. My over-the-top needle phobia stems from the trauma of being poked numerous times in search of a vein. Can't believe how you were kept out of the loop. I would think that in the interim between our surgeries minors would be treated as a patient, not someone's child.

I married at 21, adopted two children, married for 31 years, widowed for 36 years. Good life, but I always fantasized about life without an ileo. Medical products have much improved over the years. Management for me was mostly problem-free because I denied myself many foods. No raw fruits or veggies except bananas. Have held jobs without any problems. Mostly a very normal life.

Probably 5 accidents in all these years, not detected by anyone except myself, so no embarrassments. One revision and 4 hospitalizations because of obstructions or dehydration from flu. So can't complain. Life with an ostomy is possible!

Thank you for sharing your story. I got my colostomy when I was 6 years old, more than 41 years ago. Hope I can join the 50 club.

Wish you the best.

Hi, thanks for your story. I can especially relate to the psychological impact of UC (I got sick at age 7).

I got the bag at 19, after being seriously debilitated for several years. My GI lied to me about what the result of surgery would be. He told me it was a little thing you wear a bandaid over. 🤯

When I woke up with a bag, I was numb. I had already been through so much trauma with the disease, hospital stays, embarrassments, plus abuse at home and at school.

I had the bag for three years and I still have a few experiences burned into my brain. Then I found out about the Kock pouch and have had that since age 23. I'm 66 now. It's the greatest! For me, anyway, I think it saved my life. I'm telling you, the psychological impact of having to deal with actual shit should not be minimized. The Kock pouch is much less “hands on” and I do wear a nursing pad over the stoma. Much better for me, emotionally speaking.

There was no psychological support back then. In fact, there were many experiences of being the object of disgust from medical “professionals.” I did have a couple of compassionate nurses, I'll never forget them! I've been in therapy for years, luckily C-PTSD is becoming more well known, so there is appropriate treatment now. I'm on a handful of psych meds that keep me stable and content. Thankfully!! 😅

I've had my ostomy for almost 60 years. I had ulcerative colitis for about 2 1/2 years before being operated on at 15. I too felt better after surgery. I do get tired of it, but I didn't anticipate I'd celebrate a 75th birthday. So I am grateful for that! The appliances have certainly improved over the years. Happy holidays!

I too woke up from a surgery to remove an abdominal tumor with a colostomy. I was told my bowel would be reconnected "if everything looked good." There was never any discussion or room to ask why I woke up with a colostomy post-op, but I am now on immunotherapy and it reactivated inflammatory bowel symptoms. I am fearful of the reversal of the colostomy and would really appreciate it if anyone has had a successful reversal. As a female, I am concerned about having bowel accidents so close to the entrance of the bladder, which could result in repeated urinary tract infections and possible kidney damage. So if you've had a successful colostomy reversal, I would like to hear all the good and bad details if possible. Thanks very much!

50 years! Absolute respect to all you long-sufferers.

Mine's only been nine months, and I'm already fed up with the damned thing!

I don't think things have changed that much as far as explaining things. I was life-flighted to a hospital, and nothing was said to me about what would happen.

Woke up to an ostomy bag. Was told two times how to change it, and sent home. I am so glad not to be sick anymore, but it would have been nice to have a little more education before I left the hospital.

Kitty,

So many of us were ill-prepared for realities - even those, who like me, spent many sessions of hospitalization in the run-up to the colectomy - which in my case I fought tooth and nail not to have... and then having healed so very, very well, and having deep-line feeding to make one strong enough for a scheduled final surgery. I personally underwent massive challenges when perforation of a section of gut - unsavable - happened before the scheduled theatre.

... Even after all that 'preparation'...

I was not prepared for the consequences that followed.

In fact, in my case, it was the intellectual understanding, when undergoing my final treatment of deep-line feeding and other preparation for surgery was all in place - it was my own expectation, an intellectual acceptance - resignation in other words - that could, in no way have prepared me for the heavy challenges that actually followed.

But, notwithstanding any chapters of one's journey, there are stages of recovery and genuine gratitude - amidst frustration that evolve!

The concept of evolvement is part of life - in that respect, nothing changes - we live our journey!

Positive motivational attitude, stiff upper lips, and much tenacity get us through to live the good bits, excel, and learn to love the less good so that we may help ourselves and others.

What I am trying to say here - very ineptly, is, in my humble experience it seems that whether we - historically had long chronic illness - with good periods - or not - or whether we have an emergency surgery without any preparation - when final surgery happened... rather as you suggest, the weakened patient - whether so-called prepared - or not, is in actual fact... emotionally, and I will repeat emotionally unprepared... even when we think, that intellectually we are informed - well motivated - doing all the "right" or "helpful" things!

So I totally agree with your comment, Kitty Bou, from the point of view that "nothing has really changed".

Clearly, there are exceptions with a few enlightened physicians and indeed some attuned surgeons, but it is my belief, that until such a time as patient, carer, family, and medical resource sites become more inclusively accessible, there is little real opportunity for change within hospital or private clinic environments.

Because

At the end of the day - it is the human story that helps, through empathetic exchange to grow a more gentle understanding.

And it is within these environments - such as here - and elsewhere, where sharing takes place, where there is likely change in an active sense, - for in sharing we foster that change - gradually, by degrees.

And so it seems to me that those folk who host such environments as MAOstomate and invest in site development - with related resources, who will actually facilitate the difference.

It is up to us, you, me, and all folk who interact, it is our willingness to learn, and to expose our own vulnerabilities - but without playing the victim - it is the very membership who are, live as we all key our words and thoughts, right now - it is us who collectively aid change over time.

Thank you, administration and the developers and investors who facilitate our exchange today!

I do so very much hope, that this site - as others, are able to continue to evolve - especially with the development of resources within AI applications which will, I believe, aid our personal one-off sharings to become the evolvement for positive change and greater integration...

Just perhaps, as the death of the search engine as we know them, and the integration of the neuro processor - maybe then, truly, things may change - for as we all contribute then surely change will evolve - but just perhaps in the final analysis more humanely, notwithstanding the integration of machine learning!

Keep up the facility, please - for we are all grateful for it.

Thanks,

Jayne

Dark Mountain,

Bless you for your childhood life - feel for this - and so good you were a suitable candidate for the Knock Pouch.

I am simply delighted for you that all has worked out so well since you were 23!

We all have our fortunes and our burdens.

As a Crohn's Disease diagnosed patient [autoimmune considerations and genes specific to Crohn's Disease] - even those patients who have not had active symptoms for many, many, many years - even the quiescent Crohn's patient cannot unfortunately be a successful candidate for such a system - even when modified with the living collar valve of the BCID variant of the J Pouch?

So too are there reservations for other novel continent devices - such as TIEs, currently on trial. And such systems are not recommended for Crohn's diagnosed patients.

As the outcomes are so devastating for unsuitable candidates for certain procedures/systems, I thought I should add this point, because it is so tempting for some of us to pursue the possibility of a continent system that I hope I am forgiven for mentioning a caveat here.

BMP - You are sooooooooooooo lucky to be able to have had the J Pouch and had the opportunity of living with a 'clean' management system - I am so happy for you - bless you.

And indeed, the downside to handling the waste side of pouch management cannot be underestimated - especially as one becomes older - and in some cases where the more ancient patient is reliant upon outside nursing care for such management.

How I wish that my own medical history was more accommodating - but as it is not; 

And so I am learning - in my 69th year to try and live with grace, having had an unsuccessful attempt in my 65th year to alter my continence by trying the novel TIEs implant - some forty years on from having my own bag at the age of twenty-five!

Now, once again having the Brooke's stoma reinstated with external collecting appliance back in place - and an ongoing scenario to repair the damage of the experiment!

As the lead post mentions PTSD is a level of stress, that a number of us find can develop over time - and is a condition that requires professional appropriate treatment.

Given world health resources, currently are under their own inadequacies as regard provision of appropriately experienced practitioners able to aid an increasingly sought after help, such underlying real consequences of that which many of us go through - continually, without professional address, remains a reality of life.

The great majority of folk with a colectomy do live productive lives - but many of us have unseen deep consequences that remain a hidden reality.

My own observation is that we need - and here I speak personally, to learn to be more open, caring and truly revealing so as to be kinder to ourselves and in so doing help others.

As a private and competitive person this is probably a natural default I have to learn to become fully at ease with.

So if I sound pompous or over-verbal - I am trying, in my way, to be a little more open, giving and trying to accept that it is OK not to be OK all of the time!

But, and here I go again ..... smile please ...... I have been OK for many, many of my 69 years of living - and intend to go on being more and more so!

~ ~ ~ ~ ~ waves from the rural English-Welsh Hills of the UK ~ ~ ~ ~ ~

Jayne

Shawn,

How do you think we can best change your graphic profile pic to a smiley?

I mean, really, now, after all is done - we need to help ourselves and others in the now?

What single thing - small, doable, would make a positive difference for you personally, right this moment?

Hug

Jayne

PS In telling us, you begin to tell yourself...

That's what I am doing - right now!

x

Nothing! I am happy! 😊

KK

:-))