For the "Fifty year" ostomy club

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Shawn57

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. 🙄

qenzore72

 52 card pick up in a few months.

Colostomy from the start.

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ron in mich

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

Mysterious Mose

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

Jayne
Reply to Mysterious Mose

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, its how we process stuff.

 

My tip is 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 verdic remains out .....

 

 

" It aint 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 collectomy [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 Emotions with LeeAnne Hayden | Hollister
warrior

holy shit shawn.!!

what an incredible story beginning at age 12. im sorry it sounds criminal to think some 50 yrs ago they did this to you.. but then 50 yrs 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 todays management of IBD.

today, surgery is the last step taken.  u would be over medicated with medicine to control it. a better path before surgery?? 

biologicals.. steroids. infections.

strictors. 

they say hindsight is 20-20.

i doubt a 12 yr old would ever go through surgery as a first step today. unless life threatening. 

i cant 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 forty yrs now, myself, it may have saved you from side effects . a much larger picture no one ever thinks about later in life.

wishing u well. - Warrior

 

 

 

MOST52

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 w/o an ileo.  Medical products much improved over the years.  Management for me was mostly problem-free bc I denied myself many foods.  No raw fruits or veggies except banana.  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 bc of obstructions or dehydration from flu.  So can’t complain.  Life with ostomy is possible!

Abdulqadir

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

Wish you the best

darkmountainpottery

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!! 😅 

Marilyn Flowers

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 am grateful for that!  The appliances have certainly improved over the years. Happy holidays!

madronaapt

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 & it reactivated inflammatory bowel sx's. I am fearful of reversal of the colostomy & would really appreciate if anyone has had a successful reversal. As a female, am concerned about having bowel accidents so close to the entrance of the bladder which could result in repeated urinary tract infections & possible kidney damage. So if you've had a successful colostomy reversal, would like to hear all the good & bad details if possible. Thanks very much!

bag-changer

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!

kittybou

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

Woke up to an ostomy bag. Was told 2 times how to change it, and sent home. I am sooo glad not to be sick anymore, but it would have been nice to have a little more education before I left the hospital. 

Jayne
Reply to kittybou

Kitty,

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

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

I was not prepared for consequences that followed. 

In fact in my case. it was the intellectual understanding, when undergoing my final treatment of deepline feeding and other preparation for surgery was all in plaace - 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 ACTAULLY FOLLOWED.

But, not withstanding any chapters of ones 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!

POstive motivational attittude, stiff upper lips, and much tanacity gets us through to live the good bits, excell, and learn to love the less good so that we may help ourselves and others.

 

 

What I am trying to say here - veryy ineptly, is, IMHE it seems that whether we - historically had long chronic illness - with good periods - or not - OR WTHETHER 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 physcians and indeed some attuned surgeons, but it is my belief, that until such a time as PATIENT CARER FAMILY AND MEDIC 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 active sense, - for in sharing we foster that change - gradully, by degrees.

 

And so it seems to me that those folk who host such environments as MAOstomate and invest in Site developemnt - 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 developes 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 develpment of resources within AI applications which WILL I BELIEVE AID OUR PERSONAL ONE OFF SHARINGS TO BECOME THE EVOVEMENT FOR POSITIVE CHANGE AND GREATER INTEGRATION ....

Just perhaps, as the death of the search engine as we know them , and the integration of the Nuro processor - maybe then, truely, things may change - for AS WE ALL CONTRIBUTE THEN SURELY CHANGE WILL EVOLVE - BUT just PERHAPS IN THE FINAL ANALYSIS MORE humanely, nothwithstanding the integration of machine learning!

 

KEEP UP THE FACILITY PLEASE - for we are ALL GRATEFUL FOR IT

 

Thanks,

Jayne

Jayne
Reply to darkmountainpottery

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 Crohns Disease diagnosed Patient [autoimmune considerations and genes specific to Crohnes Disease] - even those Patients who have not had active symptoms for many many many years - even the quiescent Crohns patient can not unfortuneatly be a sucessful candidate for such a system - even when modified with the living collar valve of the BCID varient of the J Pouch?

So too are there reseversations for other Novel Continent devices - such as TIEs, curently on trial. and such systems are not recmmended for Chrohns Diagnosed patients.

As the outcomes are so devestating for unsuitable candidates for certain proceedures / systems,  I thought I should add this point, BECAUSE IT IS SO TEMPTING FOR SOME OF US TO PERSUE THE POSSIBILITY OF A CONTINENT SYSTEM that I hope I am forgiven for mentioning a caveat here.

 

BMP - You are Soooooooooooooo Lucky to be able to have had the JPouch 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 can not 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 unsuccesful attempt in my 65th year to alter may 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 Brookes stoma reinstated with external collecting appliance back in place - and an ongoing scenario to repair the damage of the experiement!

 

 

AS the lead post mentions PTSD is a level of stress, that a number of us find can devlop over time - and is a condition that requires proessional APPROPRPRIATE TREATMENT.

Given World Health resources, currently are under their own inadaquacies as regard provison of APPROPRIATED EXPERIENCED practitioners able to aid an increasingly sough after HELP, such underlying real consequencies of that which many of us go through - continually, without professional address, remains a reality of life.

The great majority of folk with a collectomy do live productive lives - but many of us have unseen deep consequence that remains 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 defalt 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 is OK not to be OK all of the time!

BUt , and here I go again ..... smile please ...... I have benn OK for mmmmany many of my 69 years of Living - and intend to go on being more and more so!

 

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

Jayne

 

 

Jayne

Shawn,

How do you think we can best change your Graphic Profile Pic to a smilie?

I mean, really, now, after all is done - WE NEED TO HELP OURSELVES AND OTHERS IN THE NOW?

 

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

 

Hug

 

Jayne

 

 

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

 

Thats what I am doing - right now!

x

kittybou
Reply to Jayne

Nothing! I am happy! , 😊

Jayne
Reply to kittybou

KK

:-))

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