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**long post, but please read, and share with those who doubt you**

I don’t have a pouch anymore, because of chronic pouchitis. Had a j pouch for over 15 years, along with 2 failed K pouches…all failed because I had severe chronic pouchitis, as well as nipple valve failure on both K pouches. A k pouch it’s much different than a J pouch. With a K pouch, they create a pouch from your small intestine just like they do with a J pouch, but because they removed my rectum because of cancer, the pouch is attached to the lower abdominal wall, and a flat stoma is created. Just inside of the stoma is a small flap of skin called a nipple valve. It’s what prevents stool from leaking out of the pouch, but I had a double whammy with both k pouches. As usual, I had severe chronic pouchitis that would flare out of control for weeks, sometimes months, and because of it, the nipple valve became damaged, rendering it totally inoperative allowing stool to leak out. To empty the K pouch, you have to use a 12 inch catheter, putting lubrication on the end of it, and intubating, a.k.a., pushing the catheter through the stoma into the pouch. Unfortunately that nipple valve simply would not hold, I tried twice, and it’s a pretty major operation, after that, because I had almost no intestine left, I was given a permanent ileostomy, which I have had since 2018, and will have for the rest of my life. It’s not easy living with only 4.9% of your entire gastrointestinal tract. Over the years, in total I’ve had eight different ileostomy‘s, one J pouch, and two k pouches, plus a ton of adhesions, obstructions, kinks, blockages, etc.. requiring dozens of surgeries, not to mention the non-GI surgeries that were the result of secondary diseases from all the GI treatments/surgeries/therapies. And now, because I don’t have enough intestine, I can’t absorb any fluids, and very few nutrients, causing my weight to plummet uncontrollably. All my life I was a stocky man (At 5’11”, I was usually at least 180-200lbs). Now? Pardon my language, it’s become a goddamn nightmare, I’m afraid to step on the scale. I am now down to under 130 pounds on a good day!, but no matter how much I eat, and no matter what I eat, everything goes through me in less than 30 minutes, causing a very high output ileostomy, pumping out litres of brown acidic water all day (I have to empty my bag at least 8 to 10 times per day, losing up to 5 Litres, or more, of fluid per day. I literally cannot take in enough fluid to replace what’s being lost, no matter how hard I try, if I try to much, I just throw it up). As a result, A week ago, I went into complete renal failure. I am losing all of my fluid through my stoma, bypassing my kidneys completely, rendering them useless, causing them to shut down. I’ve been feeling off for months now, but because, like many other G.I. patients, I’ve developed osteoporosis from the prednisone, and take a lot of calcium supplements to compensate, which leads to having a lot of kidney stones, but now it’s gotten far beyond that. I’m either going to have to go on permanent IV therapy every week, or permanent TPN if I want to survive. I have 12 different doctors now, including two gastroenterologists, one G.I. surgeon, an orthopaedic specialist, a rheumatologist, endocrinologist, and nephrologist, 2 psychiatrists, A drug rehab specialist as I am desperately trying to get off the Percocet I have been taking faithfully for 15 years to slow my output and kill the constant pain, but doing so is triggering an unbelievable amount of problems. Not to mention my GP, and my oncologist, actually, I lied, I have 14 doctors, I just never really counted them all up before, because I have two other specialists that work in orthopaedics, but specialize in prednisone induced osteoarthritis and osteoporosis, which is why I had to have bilateral rotator cuff decompression and bilateral carpal tunnel release surgery‘s. I know many of you can relate, although I pray to God very few can fully relate, because my situation is extraordinarily rare, and I wouldn’t wish this on my worst enemy. I was forced to quit work at 46. I’m now 53, and have lost over 125 pounds since I stopped working, without even trying. I go to work to visit my friends, and now all I hear from everybody are things like “oh my God, I didn’t know you were dying of cancer“, or other things like “ you look absolutely terrible, what happened to you?, you’re nothing but skin and bones“. Those were two of the more polite comments I’m getting. My apologies for rambling, but sometimes I just have to let it out, because it’s too painful to hold it in. I do my very best to get on with life such as it is, but now my internal organs are starting to fail one by one because my system is literally starving to death from lack of nutrition and fluids, and it truly feels like I am dying a little more each day. Even with TPN, the doctors don’t know if it will work because I’m so far gone. Three doctors last week told me that this disease may very well take my life within the next year or two if they can’t find a way to get my body to absorb Enough nutrients to keep me alive. I never thought it would come to this, and one of the reasons I tell everybody about my story is so the naysayers, and even family members, that refuse to believe that it’s more than just a stomach ache, can read my words, and can see that this can truly be a deadly disease. I’ve lost several friends to it already, I just pray to God every night of my life, that I’m not the next one. There are no words to describe how hard I have fought to stay alive. I have always held out hope that things would be okay, that I would somehow level off, and be able to go on with my life, but the total opposite is my reality that I am just discovering now after all these years. I implore all of you, please don’t take anything for granted, don’t ever underestimate what this disease can you do, and never ever let anyone tell you otherwise. Print this out, show it to everyone who won’t believe you, send them my personal email address,, and I’ll be happy to tell them just how bad this disease can be. I do want to say one thing, I’m definitely not saying any of this to frighten anybody, and as I’ve mentioned in the past, my case represents only 0.01% of all gastrointestinal patients. My case is extremely rare, but when it first started out, it seemed insignificant, even minor, my first big wake up call was when I was only 21, a year after I was diagnosed, when I suffered a toxic megacolon, in other words, my entire large intestine ruptured after discovering 28 huge ulcers all throughout my large intestine until the tissue itself just fell apart and burst. Thank God I was already in the hospital receiving treatment when it happened, because I was dead before they got me to the OR. Thankfully they were able to bring me back, and proceed to begin this very very long, painful and completely unpredictable journey. Most people can live with Crohns, Ulcerative Colitis, Diverticulitis, and countless other forms of IBD, never needing surgery, being able to get by using only oral medication. The last thing I want to do is alarm or frighten anybody, but the one thing I want more than anything, is for the general public to understand what we have to go through, and the potential of what we may have to go through in the future, and that it is so much more than a simple stomach ache or cramps. Before my diagnosis I was accused of faking it more times than I can count, not even the doctors would believe my symptoms! I literally went to every single emergency department in the city of Toronto where I live, that is a lot of hospitals, but not one single doctor would take me seriously, refused to believe me, and treated me like I was wasting their precious time. I even had one doctor at Toronto East General Hospital, say, and I quote, because I’ll never forget this ” stop wasting my time, it’s all your own fault, I have actual sick people to see, get out of my ER!!” (I was FURIOUS!🤬). I’m not shy about who I am, I am a gay man, I’ve been open since I was 16, but the moment the ER doctors discovered that fact (it was always one of the very first questions they would ask me, looking for a scapegoat because I was only 21, and they were to ignorant and arrogant to admit they didn’t know what was wrong!), they would instantly blame me for my illness, instantly assuming I was having improper anal sex, and that it was all my own fault, without even bothering to do any bloodwork or any type of digital rectal exam, but it is not restricted to gay people, I have spoken to countless women who have also been given the same treatment by ignorant doctors too stuck up and arrogant to admit that they don’t have the answers, so they blame us, furthering the stereotype that we make it up and that it’s all in our heads, so we can avoid going to work or school. That makes me so angry, I would never wish this on anyone, but, I wish even more that every single doctor would be forced to live a few weeks in our shoes before they graduate. They would learn more from that than anything else. You have to be your own advocate, because no one‘s going to do it for you. The antiquated medical establishment have their own rules that they play by, don’t you dare let them dismiss you, thank God I was a persistent pain in the butt, pardon the pun, to several doctors, because I forced them to keep looking for answers until they found what was wrong. If I hadn’t done that, I would be dead right now, and that’s a fact. So again, for all the doubters out there, I’m begging you, force them to read this, if you’re anywhere in the Toronto area, hell, I’ll come to your house, place of work, school, or wherever you want, and prove to everybody that doubts you, that this thing is real. I need only lift up my shirt to see almost 35 years worth of scars, not to mention the ileostomy bag and the countless previous ileostomies sites stitched shut. My apologies for rambling, but this is something so near and dear to my heart, something that I’ve battled with my entire life, and frankly something that has completely destroyed my life and turned it upside down and backwards. I hold nothing back, I don’t pull any punches, And I’ll be right in your face if you refuse to believe me. It’s hard enough having to deal with this without having to deal with a bunch of sceptics who have no idea of how hard it is to live with this disease. I thank you all so much for listening, and even though I’m in pretty rough shape, I will never ever let that stop me from fighting and speaking out loud to anybody who will listen to educate the world on the realities of this disease. Especially given the vast amounts of fast food most of us consume because the healthy foods are now out of most peoples price range, we are slowly being poisoned, but it’s either that or starvation. Either way, G.I. cases are on a very steep incline, and it absolutely breaks my heart and boils my blood. Don’t you dare ever give up, I spent years literally crying myself to sleep every single night, and waking up in tears, completely overwhelmed, feeling absolutely helpless and hopeless, but the more the world throws at me, the more my resolve grows stronger and stronger. I will not go quietly into that proverbial good night, I am going to go out kicking and screaming my head off! Please take care of yourselves, I only hope and pray none of you have to go through everything I’ve gone through, and that my words can be a catalyst to help those in your life who remain in ignorance, finally understand just how much this thing affects our lives . Thank you again, and God bless each and every single one of you! Sending healing vibes, support, positivity, and all my love from Toronto ❤️

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I will say the same, wow!

you are a very tough person with a mental attitude much stronger than I will ever be!

I try to explain the havoc that IBD has done to my body and health, but only the telling about the surgery makes people understand the severity.

I wish you the best and sending positive thoughts your way and hoping you get a break from all of your issues.

take care.

Hi Sweetheart,

It has been a while and I am so sorry that I haven't kept in are a champ, a fighter, and a one-off miracle. You know all of this and so much more. your situation is unique and your surgeon (and mine) is a champ for having stuck by us until way past when others would have!

So sorry to hear that you have lost the 2nd k pouch, I was not up to date on things and haven't been home in years (about 5). I would love to see you on my next trip, whenever possible.

Yes, our families do not believe us, even after surgeries, they blame us for our problems, situation, and disease...they tell us that it can't be so bad, that we exaggerate, that we can do better or look ok so why are we complaining, they would love to lose weight so easily (yup, I got that one too as well as the, 'you are so lucky to have a handicapped sticker!' one...) they make me scream but never in could we possibly know how hard their lives are with jobs, cars, kids and such...we are so egocentric! (yup, got that one too!)

They prefer to blame us rather than try to understand...I still get the ones telling me if only I would eat this or stop eating that I would be just fine...I'd like to strangle them but it isn't an option so I prefer to just not see much easier!

Getting the EDS (Ehler's Danlos Syndrom) diagnosis helped with my doctors' reaction to me...They understand a bit faster although many haven't the foggiest idea what it is, to give them credit, some actually did read up on it and adjusted their treatments accordingly. It makes the way that they operate and the sutures or mesh repair that they use more efficient and much less dangerous.

Too bad Dr. C didn't find a way to make your valve work.

Our journey is a rough one, multiple surgeries do a number on us, ligaments, joints, guts...just too many to count and so few successes...they are tragic and yet you keep fighting the good fight...never give up, never give in!

Thank you for your rant, it may allow some people here a sort of relief, a bit of light into their lives, and hope, letting them know that they are not alone and that others are going through a similar journey...

Oh, sweetheart, write to me directly, you've got my address...for no other reason than to keep me posted on how things are going...on all levels.

Huge hugs from way over here...and hope for at least an acceptable life!


I looked up Ehlers Danlos Syndrome.  I was surprised to see a connection between hypermobile joints and tissue that won't heal.  It makes sense.  I have hypermobile joints so I wonder if that's linked to my weak intestinal tissues?  Sounds like it could be.  I have been taking L-Glutamine to help the intestinal issues and hydrolyzed collagen to help with the connective tissue issues.  It seems like I have noticed things healing faster since I started with the L-Glutamine.  Not such a direct connection between anything and the collagen, but I think these things are more about long term maintenance and not a magical cure.  Who knows.  They might be bad for me!  I hope not.

Eric and Sharon, I'm sorry about the crap you have had to deal with.  I have experienced some of that but not to the degree you describe.  Being gaslit just sucks. 

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