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Why do we have ostomies

Past Member
Sat Aug 28, 2021 3:47 pm

I don't want to start a subject that hurts all of us but here I go the colostomy and Ileostomy patients I can't relate but my topic may definitely affect you. As I reflect about my situation it hit me. I wrote before how I felt at stage 2 there was alternatives. My uro doc just stated that at 60 I'm a young man who can handle not only chemo but also surgery gosh recalling now he was so happy to have a patient he could perform and will survive. Gosh I'm a fool but maybe most of us are let's face it cancer sucks be it bladder or colon. In any situate lives are affected. But when a doc has alternatives to treat you but immediately goes for the Ostomy it's no longer about us it's about him. With what I had I could've been treated differently but he wanted his glory at my expense. Am I alone has some of you thought about this. He destroyed what life I had left for his own benefit. I tell you now I'm 65 and 60 at time of surgery. I guarantee with out this surgery I'd still be alive with just treatment why do they do this. Non believers will say he get us alive it's better then the alternative. I now laugh the alternative wold have been the same. Sorry for you guys with UC or other issues.  Ut what they have done to so many of us is bordering on criminal. Why after my uro doc did this to me did he leave to east coast. Maa as n I better shut up. Everyone look at your situation and tell me I'm wrong. 90% of you can't. The bastards they used us for their Careers. I just want to kill myself for being so stupid to let them do this to me. Brothers and sisters it's true but keep saying it's better then the alternative. I have survived 5 years with a stoma I guarantee I would have lasted these same 5 years w/o a stoma. God I hate myself for alloythis to happen. It's all food for thought but I would take 5 years of normal life with no stoma than 8 or 10 years with one. Am I wrong 

These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

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Past Member
Sat Aug 28, 2021 4:08 pm

By the way I had 2 different docs tell me my stoma was not necessary. Yes they said that treatment I received will keep me alive but a different treatment would have also kept me alive. Yes they said maybe you would have lived longer with this treatment but also looked me in the eye and said are you happy now to live for a few extra years or just staying normal. Why am I saying all this   Think about it. I would give years of my life to live normal cause we don't live normal. Go on tell me I'm wrong. Hopefully we victims of this will fight what they did to us or just say it's better than the alternative????

Sun Aug 29, 2021 5:03 am

Hello tomoc.

Thank you for sharing your thoughts on such an emotive subject.  There must me many people /victims of this sort of surgery who go through such contemplative reflection when there are viable alternatives. 

My own resentment about surgeons was not with the one who did my stoma but the one previous to that who botched the (relatively simple) surgery and made the stoma necessary.

When it came to decisions about whether to have a stoma or not, I was informed of all the alternatives and with that information I left the decision for many years (and trying many other options) before opting for a stoma. This gave me the time and experience to weigh up whether I wanted the pain and discomfort to continue, or whether to 'chance' being better off. It was almost entirely my own decision, which enabled me to adjust to the new situation that much more quickly and easily. Further to that, (in my case) there has always been the option for reversal, which so far I have refused on the grounds that the present situation is better than the past, and the 'need' for the stoma has not abated.

We all have different circumstances to reflect upon when contemplating this issue, so I presume there will be no definitive answer to your question.

Best wishes

Bill

Sun Aug 29, 2021 1:53 pm

 

  tomoc wrote:  

By the way I had 2 different docs tell me my stoma was not necessary. Yes they said that treatment I received will keep me alive but a different treatment would have also kept me alive. Yes they said maybe you would have lived longer with this treatment but also looked me in the eye and said are you happy now to live for a few extra years or just staying normal. Why am I saying all this   Think about it. I would give years of my life to live normal cause we don't live normal. Go on tell me I'm wrong. Hopefully we victims of this will fight what they did to us or just say it's better than the alternative????

 



Tomoc,

I am so sorry you are having a hard time- but please don't let your ostomy define you or set your mood in a negative way. You are so much more than your ostomy. I can imagine it must be very frustrating looking back on decisions made about your body. You must have felt a loss of control and been confused as to what to do. 
Although you are unhappy with having an ostomy, you can make a choice each day to be happy. I had rectal cancer that metastasized to my lungs and brain, requiring surgeries, chemo and radiation. I am on a maintenance chemo now for life as I am stage 4 as there is no cure at this point. For me, my ostomy is the least of my worries as I dread the continuous chemo every few weeks. I wish I just had an ostomy and felt well all the time. It's all how we look at things. I am in no way minimizing your anger and frustration at all- just wanted to remind you that you can choose to live or just exist. I told myself I will live my best life no matter the circumstances, and it really helps. I will not let my ostomy stop me from living and being happy. 
I hope you can get your mind in a happy, healing place very soon! 
😇

Thu Sep 02, 2021 12:15 am

Hi Valerie,    My name is Marsha, and I've had my ileostomy ( due to Ulcerative colitis)   for more than 55 years...since I was a child of 15..     I understand and empathize with your feelings about your stoma / and doctors....although I had somewhat of a reverse situation.    When the first doctor I had  ( at age 12)    recommended surgical intervention ( removal of the colon and an ileostomy,  my distraught parents...pretty much said..." over their dead bodies"..   They did for me what they thought was best, but no one ever thought to ask what I wanted..   So for the next 4 years, I was in and ou t of hospitals....lost a lot of weight ( 79  llbs)   was on all kinds of medical treatments, and medical "experimental" medications,   besides the weekly/ monthly sigmoidoscopies ( metal  instrument up my butt) for 4 years.   I was out of school.....and eventually the medications, ( steroids)  made me gain weight, stretched out my skin, caused an ulcer....and in all that time.  I never did heal..   That was the " better" alternative for my parents..  To avoid surgery at all cost....especially " that surgery"..   When I developed osteoporosis, and degenerative disc disease, and  was  " dying < ( bleeding out)  and had  pneumonia",   I found out that there was a surgical intervention .    available...    At that point, there were no more choices, and if my parents wanted me to live...that was the alternative...   I won't go into t he details....but it took 3 surgeries to have them accomplish what should/ could have been done in one.....but I was so sick,, I  went into shock on the table..   5 months  and 2 surgeries later....I w as released from the hospital, with a stoma, and a mess of inadequate  supplies...   But I was no longer in pain...    I was grateful ( at the time) to  reclaim my life, go back to school, have friends, be a " normal" teen.   I accepted my surgery, made friends w ith others who had the same, and was a " visitor" for newbie kids ( no stoma therapists back then)...   It was onnly years later,  did the full impact of the choices my parents made for me,  have an impact...   I was so angry, that I was deprived of a r eal childhood, was forced to live  with the pain, discomfort, and isolation of hospital life...    I eventually married, and was blessed with having not one, but two little boys.....    None of that was easy,   but what was really d ifficult, is when first on son became ill with Crohn's and then the other with Ulcerative colities...   Both auto immune diseases, and my worst nightmare..   I got to re live my childhood,  and go through making the  choices for my children that my parents had to make for me..   In some ways, it reduced my anger,   as I realized my parents did the best they could with what they knew and what they had..  We didn't have money to begin with,   but they went deep in debt, as they sought the " best" doctors they could....which were the prominent Gastr drs.  in NYC//    5th Ave... &  Mt. Sinai...   I realized at a very early age,  I could stay angry ( as one of my friends of 50+ years)    did,  or I could be grateful that I was alive....and able to live a fairly normal life..   That was in my 30's 40,'s 50's and into my 60's..    Now at 73 ( and for the last 5  years....my past came back to haunt me...   I developed one dibilitating condition after another, and these days, I have a doctor for every system  ( diabetic,  nephrologist / kidney/ urologist....kidney stones/ orhtopedist./ degenerative disc disease/ arthritis...  Asthma, paralyzed vocal chord....and the latest.. and IBS / gastric condition....which pretty much limits my diet to 10 items....   I feel like I'm reliving my childhood experiences.....but this time,  there's no " getting well", or surgical intervention,   or " time"..   I just have to keep all the systems running, and be " grateful" that I'm still alive...   Sometimes,  I feel there a book in me to write....that would express both my anger....and the " black humor....that I have lived with for a lifetime..    I don't know if any of these words I've shared helped you,   but  I'm hoping that somewhere  in you, you'll find acceptance for what you've gone through, and come to appreciaate what you do have.   My dear friend Tara,   died in her bed ( 73 like me) this year..... still fighting the " stoma" thaat gave her life, but didn't allow for her to wear a bikini....   I smile when I see pics of those brave girls,   who  proudly wear their bikini's with their pouches on display...   Bikini/   vs Life?    My dear friend hated her body...and died with that hate in her...   AS for me.....I regret that  I've spent most of my life, mourning....my mishapen , overweight scarred body.....   but have no issue with the stoma itself.    Isn't life ironic...?    Only you can face your demons, and change the perseption, if you want to feel better...   In one way or another , anyone who has had a disfiguring surgery...has/ or is doing the same..   Best wishes to yo u...and feel free to write if you need to...   Marasha 

Thu Sep 02, 2021 1:20 am

Hello Marsha.

Thanks for sharing your story. I would definitely encourage you to write that book which is inside of you. Not only will it make a brilliant read (as do your posts) but if it has a similar effect to my writing, then it will probably be 'therapeutic' for you as well.

Best wishes

Bill

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