What the ostomy has given me

For all of our trials and tribulations I want to share with everyone just what my pre ostomy life was like and the road i traveled.... UC for 24 years and accidents each and every week and the ability to focus on my Anus only for fear that It would betray me on a daily and consistent basis, I lived in fear for 24 years.Having lived like that for so long I forgot what normal was and became extremely detached from the world and extremely angry and non social...........Hence the loss of family, marriage, finances, some freidships and just plain alone........Fast forward to my Ostomy which was basically forced on me for I wanted to die and still didnt want the "bag".

I am a 3 yr Ostomate and one Happy HO............(short for Happy Ostomate)..........The Ostomy has freed my mind to concentrate on the world around me and to listen to all that goes on without my thoughts going elsewhere.( where is the friggin bathroom)..I can relax each and every second of each and every day without fear..........That has allowed me to breath deep and to walk briskly and even to run if I so chose......It has allowed me to work out at the gym for the first time in 24 years and to reclaim my body...I spin at the gym too which is a high powered highly aerobic and cardio workout on a spin bike..........It has allowed me to take Yoga to now heal my mind and bring my mind and body together as one. ( they had not been friends for the last 24 years.. my mind was angry at my body for having betrayed me with the Ulcerative Colitis) . It has allowed me to again be the dad I wasnt for my children and they now have one Happy dad........It has allowed me to communicate effectively and with a sincerity and clarity which I never posessed.......I think that all comes from being relaxed...........I can go on and on and on.......I think the best result of Ostomy is that I now smile all the time and that is now almost a trademark of mine as people always want to know why.......And guess what I tell them why and then I show them......One by one the world will soon know and understand the gift that getting an Ostomy is , if you are a sufferer of an intestinal disease which has robbed you of your ability to have normal bowel habits.......

I just had to share a bit of my story, as I read and see how sometimes others have such a tough time...I want to be a messenger of hope to those on the fence.....I feel so close to so many of you , and most will never know me but this site is one great site to be able to know that we are not alone at all............There is nothing tabboo about any discussion or topic....Nothing is gross and nothing is out of bounds . It s a site of absolute freedom to let it out and share.....

...........till the next topic post on Intimacy which will get 2000 hits. I bid you guys and gal goodnite...........Keep posting and keep on sharing.I love it

That's an awesome read, Michael. Very uplifting! :)

Amen, bravo!! Hell, I was blessed with both U.C. and Crohn's... Glad to hear all is well and you're gettin' along. That's the fear of a U.C./Crohn's sufferer, where's the toilet? Nothing else matters... where's the john and is it clean? I can't tell you how much better my life has become now that I have an extra appendage. Most people think that living with a bag would be hard, I'm here to tell you... it ain't nothin'. I get out now and do things as anyone else would, I still like to know where the bathrooms are, only because "The Bag" will/do need to be emptied but nothing like years ago. The urgency is gone! I've been a member now almost a year in March. The U.C. back in the 90's had me wearing a bag for 11 months. NOW, I'M A LIFER!! Thanks to Dr. Vogel at the Cleveland Clinic, I'm still on the right side of the grass kickin' like a mule and eatin' like a horse. All in all, life is damn good and you won't hear me complain, there are too many people in this world worse off than me, unfortunately?
OSTOMATES RULE!!

Thanks, boys! It is lovely to hear that there is also a much more positive side to having a stoma than what most people think - for those who suffer from UC/Crohn's, it must be a lifesaver, and your stories have shown that to be so. Take care and keep on smiling, Rachel xxx

I remember when I had my colon, I was driving to Melbourne from Adelaide and I think I shit myself 3 times in 8 hours. It was very frustrating, not to mention embarrassing when you had to pull up at a road house, go shower, then clean the seat in the truck. I am so glad I don't have that urgency anymore. It has given me back my freedom and independence to a point. I still hate it, but it's a part of me now and me and squirter have fun at times.

Great post! Like many, I had UC for eons and prior to that, IBS as a young kid. Crapped myself more times than I can count. Having to go home from school, changing and cleaning myself up at work. Traveling Europe with a flare (the Tate and Louvre and I have another date planned as most of my last visit was spent in their very nice washrooms); missing out on a lot of stuff. And the worry/uncertainty.

My ileostomy has given me a different perspective. In many ways, it's a relief from what I went through, but it does come with its own set of problems/issues. Is it better or worse than before ... better in many ways. It definitely isn't the life-ending event that I had thought it would be when I knew so little about ostomies but was convinced I'd 'never' have one.

Like you, I really can't complain -- and I do smile more and I'm way more relaxed. Not having almost continual pain and not having the need to scope out every washroom in a 10-mile radius is so liberating.

Very well put and uplifting to read beyond par.

Big 'high-five' to you, Michael!!

You people put it together so well, congrats and I know what the toilet situation was like too. Having to take 2 painkillers (doubled as gastro stoppers...) so I could go shopping for an hour. If we were 1 minute over it, I would be looking so much for that elusive dunny!

I traveled home to Australia from the UK just 7.5 weeks after the ileostomy operation and nothing went wrong on the way home. That was nearly 4 years ago and have had 7 operations since. 5 (in 11 days) of these operations last year when doctors failed to listen to me and I collapsed. Ended up in ICU for 2 weeks on life support (21 drug devices) and then in the Surgical Unit for about 2 weeks.

Don't let this happen to you...

Other than the shit that happens leading up to the "LIFE SAVING OPERATION", life is terrific and just looking for a person to share life with.

It's really amazing how many people contact you (having I have an ileostomy on my profile - on another site) and ask what it is... I thought that was what the internet could help with.

My motto, "WE ARE THE NORMAL PEOPLE, OTHERS WITHOUT STOMAS ARE ABNORMAL!"

You people put it together so well, congrats and I know what the toilet situation was like too. Having to take 2 painkillers (doubled as gastro stoppers...) so I could go shopping for an hour. If we were 1 minute over it, I would be looking so much for that elusive dunny!

I traveled home to Australia from the UK just 7.5 weeks after the ileostomy operation and nothing went wrong on the way home. That was nearly 4 years ago and have had 7 operations since. 5 (in 11 days) of these operations last year when doctors failed to listen to me and I collapsed. Ended up in ICU for 2 weeks on life support (21 drug devices) and then in the Surgical Unit for about 2 weeks.

Don't let this happen to you...

Other than the shit that happens leading up to the "LIFE SAVING OPERATION", life is terrific and just looking for a person to share life with.

It's really amazing how many people contact you (having I have an ileostomy on my profile - on another site) and ask what it is... I thought that was what the internet could help with.

My motto, "WE ARE THE NORMAL PEOPLE, OTHERS WITHOUT STOMAS ARE ABNORMAL!"

Onya Jax, welcome to our little slice of heaven. There are a lot of lovely people in these forums who will always be there if you need to vent. As for me, well I'm just an awesome Aussie, tryin' to make it and help as many along the way. You be good now, and chat with ya sometime.

Although I didn't have any of the usual precursors when I went on for the operations to save my life (of course I don't remember any of this, it happened in hours, not days) and the doctors were pulling no punches, I might not make it, so from there to being alive with my stoma, I mean what can I say?, and I can say because of that stoma, I'm still here world.
Ostimates Rule, help one another, try to cheer up others and otherwise act like we just beat the shit out of THE BIG ONE, which we did, OSTIMATES RULE!!!!!!!!
I should add, since joining this forum I have periods when I can forgive the clown who screwed up my life, Forgive, not forget, as I know I'm not the only one to go through this sort of experience, and as we all know hate is very negative and life altering mode, and here we can vent and even tell jokes to keep our minds in a better place other than cursing the original Doctor who screwed up. Thanks All, Ed

My ostomy was a surprise. But let me back up a bit. They knew I had crohn's. They operated for massive barium leaking out of multiple perforations. 8/2004 they took the iliem, or most of it, and patched uncountable holes. I'll forever screw up the tests with loose barium.
As I was coming off TPN, 1/05, I started gaining weight--like 5# in a week. Then only 7-14# a month. Every month I would tell my gut doc, "Something isn't right." When my menses came back I told him it had something to do with my cycle, with ovulation. He blamed it on adhesions. The lack of bowel control he medicated with colesterol meds --even though my total cholesterol was 93.
Feb 2006 I ended up in the ER feeling like somebody had beaten my kidneys. Because they couldn't figure it out, it was chalked up to crohn's. a week later i went to my primary and said, "I've given birth, induced, without pain meds, to three children. NOBODY SHOULD BE IN THIS MUCH PAIN!" More tests are done I'm sent 3hrs away for surgery. I didn't realize they thought it was cancer until I get to Eugene the doc's office is Oncology.
So I go into surgery being told I'm having a hysterectomy for ovarian cancer losing my right kidney because of the hydronephrosis. All the pain had been chalked up to the right ovary, enmassed, sitting on my right ureter sciatic nerve. This didn't explain every joint above the hips also screaming.

I woke up with a wound vac an ostomy pouch (surprise!). They had cut pasted 4 sections of bowel, tended more fistulas, taken out encapsuled infections barium, but they only took the right ovary tube because by the time they got to the girls, I had lost too much blood. I didn't have cancer, I was septic with E.coli. My surgeon WOCN couldn't believe I was alive it had been missed. Nutrition studies showed I was severely malnurished, including eating my own muscle. 3 months later my surgeon, great lady, asked when I wanted to schedule the reversal. I asked if I could keep it and she happy-laughed. She said, "Absolutely, your guts are a MESS. but I'd reverse it if you change your mind." I explained that I had a life again, I didn't want to give up my freedom.
My gut-doc back home, the quack, never gave up telling me to get it reversed. KMA, or is it KMO?

Nobody had answers--what I could eat, etc. My HHNurses, bless them, treated it like the sigmoid colostomy it is. None of them were ostomates. So of course I kept having trouble with the pouch. 14 months later, I was researching Colostomy nutrition for a school paper. In the British Journal of Nursing was an article that was about both Col- Ile- ostomate nutrition. ((can ya hear the angels singing?)) I realized my ostomy behaved like an Ile-. So I treated it like one, pouch nutrition/food. ((Now you can hear me singing!))

The last time I saw the guttless, I mean gut-doc, he asked again where they'd connected me. With a straight face I said, "I have a Sigmoid Ileostomy." 10/06 I had my third final surgery to remove the last of the infection. Now me my baggy have a great life!

What a heart wrenching story of your trials and traumas and you finish up with now I am singing, may it last forever. Ed

In the British Journal of Nursing, there was an article about both col-ile-ostomate nutrition. ((Can you hear the angels singing?)) I realized my ostomy behaved like an ile-. So I treated it like one, pouch nutrition/food. ((Now you can hear me singing!))

I have to say that your horror story makes mine sound like a nursery rhyme. How awful for you, but I'm so pleased that you are out there singing.....

I would be interested in the different ileo/colostomy 'diets/nutrition' you were talking about if you have any info?

Thanks for posting, Rachel x

What has my ostomy given me? Some of the best friends in my life!!

Ditto, Hannah... love you girl, hugs xoxo

I so agree with txgirl and Gus but have to comment on banshies experience.

I am so proud of you and how you have taken control away from your Gi doc and are in full control of your life and keeping your Ostomy.

While I have some anger towards the medical profession I still wonder If the docs out there really care about 'YOUR LIFE" as docs should or just the immediacy of the problem and their way to fix it and for us not to question ............Is it me or do others get the same feel.?

I read where doctors do multiple surgeries on the Intestinal tract only to end up with Ostomies for the patients , but then the risk of much scar tissue will only complicate the Ostomy success..I have read where multiple attempts to try and get J-pouch to work removing small intestine each and every time to try and keep the J-pouch working because it has to be better than Ostomy is the thought and put patients at risk for SGS short gut syndrome.......I just dont get it.........Someone please help me to understand .......

When the docs out there get it that having an Ostomy is a (cure)great thing for UC sufferers and some crohns patients as well, as well a life saving for Cancer colon patients and that having an Ostomy is the complete opposite of its image, Only then will they stop the multiple surgeries and stop leaving rectums in to annoy the patients with constant mucous discharges, only in the hope that someday 10 yrs down the road you will want to reconnect becasue they believe that shitting out of ones ass is the only way to go even if the rectum doesnt work all that well.............

Please tell the doctors that having a rectum that isnt 100% is nothing but a detriment to ones life. It saps the relaxation, it saps the free thoughts, it instills fear in the mind and body, it takes away the ability to focus and concentrate..........It truly robs you of a good life.........Having a rectum that isnt 100% is like never knowing when diarrhea will strike...............that is the equivalent............They will cut, stitch sew reattach radiate chemo the rectum and then still suggest reattachment because it has to be better than Ostomy...........NO....they are wrong and if anyone believes that after so much as doing any of the above items to a rectum will allow the rectum to work normally, they are wishing upon a star,

There are reasons why they cannot duplicate a rectum or anus and for that matter a large colon( although they try with j-pouch) but they are wrong again there( as if waiting a year for the jpouch to start behaving like a large colon and giving patient 10 immodium a day is their idea of it working well than i am wrong,because it takes that long to start behaving like a large colon( and for those that never did j-pouch you lose the ability to differentiate between gas and solids, and since the avergae person passes gas 19 times a day, when you have jpouch you must address it with a trip to the bathroom for fear you may be wrong and crap your self a gain....The rectum tissue structure and the anus is way too complicated to duplicate and i am sure that is why they never want to give it up, but lets not lose site of the big picture......When the quality of ones life is at stake............move on with it and cut it out and get on with the Ostomy............I am sitll so grateful and still so upset with the medical world for not embracing it the way it should be embraced..

I am sorry to all but I had to vent my frustration after reading bansies story..........She almost died due to doctors stupidity and it sounds as if the doctors stupidity is still there.

Again congrats to you banshie....the lesson is " We have to be our own advocates and take full control of our medical journey because the doctors will medicate you to death, screw up and never take any of the blame for their ignorance" Michael

Again sorry as I still have some anger that needs to be addressed....LMAO