Talk to others with an Ostomy


Greetings, I've had a lot of medical interventions in my life. Starting at 3 I had a very aggressive form of cancer. That also means I had to have very aggressive treatments. My initial site of the cance was is the muscle bumping right up against my bladder and urethra. Please keep in mind that this was 1988 when my treatment began so precise radiotherapy was essentially non-existent. I received a lot of radiation and while the radiotherapy and chemo saved my life it also put life in danger multiple times as I grew. The radiotherapy I received literally nuked my bladder, making it very small causing significant damage to my kidneys (urine was making my kidneys balloon due to the pressure) as my bladder was no longer able to expand. When I was 12 I unfortunately had to have a neobladder created from a portion of my large bowel. This was not the end of the interventions, however. The radiation also burned my rectum and lower spine causing me to have a rectal stricture. In 2008 I had a bowel obstruction that led to portions of my bowel ischemic (lowered blood flow, causing the tissue to severely degrade) and I had to have a bit of the bowel removed in addition I woke up with a colostomy. I was terrified at first but because of the rectal stricture I was always in some form of gastrointestinal distress. After the colostomy all the GI pain was gone. I healed after a month in the hospital and then had a recurrence of the obstruction 5 months later. While the surgeons were able to clear the blockage I soon developed an infection in the incision and they had to open it back up, put a wound vac on, dosed me with six antibiotics, and finally after four months the wound vac came off but the great rift in my abdomen was now permanent. Now this is where things get personal. Unfortunately the radiation also left me with (a lot) smaller than average penis. So being gay I could not be penetrated or penetrate so my sex life was pretty limited. Fortunately, at the time I had recently gotten back together with a guy I had been seeing for years beforehand, however, while we did break up a few years later it wasn't because of my limitations. Unfortunately, since then I've been unable to see anyone for more than a couple weeks because once they discovered my limitations they were no longer interested (I was completely ghosted several times). Since then I've not been in a relationship and I've stopped looking for anyone because the emotional turmoil is simply too great. I don't have it in me anymore to put myself out there only to get hurt again. In addition, many of my fiends (all women) either moved away, started a family, or just no longer had the time to ever go out so I've lived a very solitary life since my world was upended and without familial support I cannot say I'd even be here anymore. At one point I just lost the will to keep going on and whilst I didn't try to take my own life I did stop doing the things that are necessary to continue to live. I stopped eating, drank little amounts of fluids, wasn't keeping up on my medications and without my mom dropping by one day and calling an ambulance I don't know if I'd be writing this long winded history. Since then I've been on anti-depressants and moved in with my mother where she watches me like a hawk and takes me to the ED every time I become less responsive than I should be (and she's right to because every time I've been admitted to the hospital). I don't work and without my monthly disability stipend and my health coverages I wouldn't be able to pay for all the crap I need for activities of daily living. The medical interventions don't stop there though... In 2016 I was diagnosed with ‘short gut syndrome' because so much of my bowel either was repurposed for my bladder and then the colostomy limited it even further I don't have the ability to absorb fluids properly (if I drink anything it just ends up straight into my Ostomy bag within 2 minutes). Now I do IV infusions to keep my hydration appropriate and this has greatly helped my kidney function (I went from Stage 4 renal failure back up to stage 3). This made my physicians happy as well as my parents because I've made it very clear to them that I will not endure dialysis or transplant. I primarily refuse dialyses because I'm already doing so many interventions there has to be a point when quality of life has to be paramount otherwise I'd be living for the sake of living. In addition, because I must cath my neobladder and cannot urinate normally I get recurrent UTIs that are progressing in the rate of resistances to available classes of antibiotics and pharmaceutical companies don't research antibiotics anymore because they don't make enough money from them (because most antibiotics will not only kill bacteria but also the host so R&D and clinical trials just take too long and they don't profit enough from them because the patents expire shortly after it hits the market). So being on dialysis where the risk of infection is very high or a transplant where one must take immunosuppressive therapies and with my history of antibiotic resistant species I may have a kidney for a few months before my immune system is so suppressed I'd likely just lose the kidney to infection anyway. Rock and a hard place!

Anyway, I just tell this because I want people to know whether you're gay, straight, bi, trans, etc that having a colostomy or an ileostomy is not so bad in the grand scheme of things. Yes, it probably will limit some sexual positions but just remember, it could always be a lot worse and be thankful to the universe that we at least have these kinds of therapies that can improve quality of life and frankly, sex isn't the sole thing relationships are about. I do agree sex is an integral part of a relationship but with the right partner, you will figure it out. If others dismiss you because of your limitations, then they aren't worth it. I've learned this the hard way, and while I don't date because of it, then obviously the right guy hasn't come along yet and I can just hope that perhaps someday, he will. If not, that's okay too. You're family is who you make family, it doesn't have to be a blood relation or a spouse. it's whomever you choose them to be.

Ciao for now,
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