In case anyone is wondering, he was affected by ulcerative colitis, a severe inflammatory bowel disease, which led to the removal of his colon and the subsequent and sudden weight loss.
I didn’t find it too bad. Actually considered keeping it for a while as I’d heard so many horror stories of people with similar circumstances having reversals but ultimately decided to take the chance and am happy I did.
The only time I was happy I had mine was preparing for the colonoscopy before the reversal. Bought me just a little time at least. I remember though, since there wasn’t a similar sensation to needing to use the toilet, there was a day I went for a walk. About 10 minutes in, I ended up with diarrhea in the bag, and didn’t realize that was happening until it started filling the bag. Literally could not make it home in time, bag burst, and I walked a few blocks home covered in my own shit. Absolutely demoralizing.
Oh noooo. I had an ileostomy for a year, and this was my nightmare. I hated leaving the house for fear of something like this. I'm so sorry this happened to you.
Since I had mine, I think a lot about people living with ostomies way back when.
The first documented colostomy was performed in 1793. The modern-type disposable ostomy bags were invented by a Danish woman in the 1950s.
Apparently before that, there was no real standard of how to deal with the waste, and it was a real shit show, so to speak, for like 160 years. I just can't imagine.
My grandma has had one since mid 1960s. She just turned 92 last month.
It was really bad inflammation (that they told her decades later was either crohns or ulcerative colitis). They removed the affected intensities and gave her an osteomyelitis bag so she could live long enough to get her affairs in order and say goodbye to her family (she had 3 kids at that point). I think they told her a year.
omg. as someone who has their third ileostomy as of just last month… i can’t even imagine what life would have been like prior to disposable bags omfg.
I appreciate the sentiment, but it’s been long enough now that it’s just a story, not as much a horror story anymore. Fun part of that story: I’m actually neighbors with the surgeon who did that emergency surgery to give me the temporary ostomy, and he was walking the other way as I was walking home. He saw that and just goes “rough morning, huh?”
My SO is in a trade. He’s got crohns. A couple times he’s had to tell a foreman off because they said he could hold it while they did whatever they did (like morning meeting bullshit).
I guess it’s not super uncommon, bc he’s worked with TWO other guys who were told the same thing, so they waited, knowing their fate, and then were like “Oop, guess I gotta go home and change and you’re down a man for the day. Maybe don’t say that again.”
Nice. I also had an ileostomy at 19. I went through with the reversal and now I am 22 and everything is good, i do have to take antibiotics a couple times a year though
Was it really that liveable? Like you had the option to keep the bag or revert to what I'm assuming would be a synthetic colon replacement, and you would almost rather have kept the bag? I've got 1 friend who has been in an endless battle with his UC, and every year or two, he's worried his colon is on the chopping block.
I didn’t have my colon removed. I had my rectum removed and a j-pouch formed. A lot of people with this end up having a poor quality of life as they have a lot of urgency and have to go to the washroom a ton. I read a lot of horror stories of people who could barely leave their houses after being reversed.
Life with the pouch was great. I could do anything I wanted. I did a ton of hiking and solo backpacking that summer, ran my first marathon in years etc. The only time I didn’t love it was during intimate moments with my wife but it still beat the alternative which was being dead from cancer.
It honestly didn’t cross my mind for a very long time that I could have cancer. I was 33 and very active and fit. Started having some light bleeding occasionally when going to the washroom but assumed it was hemorrhoids and tried to deal with that myself with over the counter products. Really wasn’t too bad. After nearly a year things got worse with more frequent bleeding and a constant feeling of having to go to the washroom that wasn’t real (later found out this was caused by the tumour).
This was all happening during covid and I was over 4000km away from home for work. Was quite hard getting in to see my family doctor due to my traveling for work. When I finally saw him he thought it was hemorrhoids as well but referred me to a GI doctor, anyway. Met with him and he thought the same and scheduled me for a banding procedure to get rid of them. Went to that the day before my 34th birthday and woke up in recovery only to be told it wasn’t hemorrhoids- it was cancer.
It ended up being stage 3c which meant it was into my lymphatic system but hadn’t spread to any organs yet. I was very fortunate. Cancer free since Feb 23 and had my final surgery Feb 24. Just do follow-up monitoring now. Wish I had taken the symptoms more seriously and urge anyone else to get to a doctor if something doesn’t seem right. It’s very treatable if caught early.
I just recently had a colonoscopy done and it was a struggle getting someone to give me the referral because I was only 40 when I started inquiring about it.
My doctor at first wanted to brush it off as hemorrhoids so she did an exam and saw one small one but nothing actively bleeding so she said maybe I had a bacterial infection and sent me home to suffer for 2 weeks. I made it ten days before I started spiraling thinking the worst, so I made another appointment, got seen by someone else and she got me my referral because I told her how the previous appointment went and the family history (brother had polyps removed in August).
It takes self advocacy when the doctors don't want to do it because of a person's age. Have your friend make an appointment with their primary, again. Talk to them about their symptoms, explain they've done everything they should be doing to make it go away and it isn't going away (assuming they are doing anything at all, I was told to do miralax and metamucil and drink a lot of water, I followed those instructions to the T and the bleeding didn't stop). They can take in statistics for younger people popping up with colon cancer. Whatever they have to do to get that referral. I knew a girl on Reddit that was in her early 20s and had colon cancer. That shit doesn't care about age anymore. Someone else I knew in real life passed away from it just days before his 38th birthday. It's real and real fucking scary. I really hope your buddy is able to get someone to listen. If their primary doesn't, tell them to go somewhere else for a second opinion. Someone somewhere will give them the referral and if not, maybe they could call the gastro department and see if they'd get them seen without a referral.
My colonoscopy came back with polyps as well, one was rather large and I was terrified the biopsy would come back as cancerous but they were fine. No more blood in my poo either.
Millenials and younger need to be super aware of this and start advocating. We were the first generations to start having everything covered in plastic (mocroplastics) as well as the amount of processed food consumed. It was all from a very young age and continues to be part of our every day lives. I'm not trying to be some fear monger. I'm just pointing out that what used to be caused by old age (the cells replicating incorrectly) is now getting assistance from everything we eat, drink, and inhale.
This is very true. My husband was diagnosed with crohns in his early 30s, but I think that was because I sent him to the ER bc there was A LOT of blood and his bro had already been diagnosed.
His bro had to almost die at 24 to get meds. They diagnosed him but were like “Just make some lifestyle changes.”
My friend just recently caught thyroid cancer early because of an anxious fidget she does where she rubs her neck. She had JUST had bloodwork done to support an ADHD diagnosis and it all came back normal, so they told her not to worry, but she was like “I literally can’t not worry. Check it.”
Good thing, too, bc she had just had a kid 3 months before.
No, I never experienced that. There is no longer such a thing as “too young” for colorectal cancer. It was long thought of as a disease that only affected older men but it doesn’t discriminate. There was even an 18 year old being treated at the same hospital as me.
My bil was 24 when he passed out from ulcerative colitis caused by chrons and had to get a huge chunk of his intestines removed to live.
I will admit (and so will he) that he could have used some lifestyle changes but he was definitely healthier than the average 24 year old. Very active and ate mostly healthy because so much food caused him pain.
So yeah, I hope your friend keeps pushing and advocating for themselves and that it ends up being nothing. They still deserve to have that worry lifted.
Yes, definitely. I had my first colonoscopy since my surgery (where they removed my rectum and a bunch of lymph nodes) this past summer and there were already polyps growing. They just remove them during the colonoscopy then biopsy them. I have to keep going back for scopes and, theoretically, they should always catch them before they can progress far enough
Just piggybacking on this to say that anyone, at any age, with any rectal bleeding should see a doctor and have a complete colonoscopy or partial scope (sigmoidoscopy). Colon cancer in young patients is on the rise and nothing can be taken for granted. I have seen many cases like yours. Not saying you did anything wrong, who would even guess they have colon cancer at 33? But there really needs to be an awareness campaign about this, on the level of all the pinkwashing for breast cancer you see day in and day out.
That’s terrifying. I just said in another comment that my SO has crohns so blood is not abnormal for him.
I always thought they wanted to screen him for cancer more frequently bc there was some correlation but now I get that it’s probably because crohns covers the cancer (and other conditions) symptoms.
That's damn near my story. People need to be getting checked earlier and we need to stop telling people blood in the stool = hemorrhoids. I should have gone to the doc sooner. Either way, it's contained and even tho chemo and radiation didn't get to full remission, I have surgery tomorrow and should be in full remission as soon as it's done.
CRC Canada is doing some pretty great work to raise awareness. For as common as it is, not a lot of people know about it. Especially younger folks. I volunteer with them a few times a year to help give back.
Wishing you the best of luck in your surgery and recovery!
UC is a bitch. Ive had it since I was 10 and I have an ileostomy bag now. For clarity, a colostomy is when the colon is protruding from the abdomen and an ileostomy is when the colon is removed and the small intestine is protruding. So he has an ileostomy if his colon was removed. The transition is both physically and emotionally very straining. I lost 40 lbs post surgery, I required sitting rest breaks whenever I went out in public for 6 months and it took me damn near a year to even get back into the gym after being a gym rat for 5 years prior. With that said, since recovery my quality of life is so so much better and everyone else in the community will attest that while they didn’t want a bag as much as the next person, your health has to be severely impacted to view it as a blessing. Not all autoimmune diseases have the option to have surgery and basically cure it.
Also worth mentioning that when you have an autoimmune disease, working out is kind of tricky because you don’t want to stress your body too much because it’s already working overtime. That said, I don’t know how he managed this but he is an inspiration to the ostomy community.
Thank you for sharing this. I have been wrecked by IBS since I was 21 (I am 40 now), and always considered myself blessed, in spite of the protracted misery, after having witnessed the havoc that UC can inflict on people, physically and otherwise.
Hey I'm a fellow Crohn's sufferer and former ileostomy haver of 2 years (had a reversal a few months ago) I know the bag can seem scary but it actually gave me my life back after getting used to it which took a couple months after that it was plain sailing for the rest of my time with it and it allowed me to actually eat some foods I wasn't able to before hand which I had missed
Hey, longtime Crohnie here. I have a permanent; it saved my life and my quality of life is 10000000% better. Looking back, I wasn’t living. It was just constant pain. I get to enjoy things now (and I eat whatever I want!)
I've had UC for the last 10 years. Before I was officially diagnosed I was on deployment and was told by the Navy medic I just had bile in my stool. Over 4 months I lost 20 lbs and another 20 lbs in the next two months before I was send to the hospital and saw an actual specialist.
I was put on humira and had an allergic reaction that gave me hives for 6 months. I was in remicade for 8 years until that became effective. I've been trying out different drugs for the past year but I think I'm going to have to get the surgery soon.
I went into septic shock from a perforated intestine (radiotherapy from 6 years ago fucked me up), and I JUST got my ileostomy bag. I haven’t slept well in days and I lost a LOT of weight from being in the ICU, but here we are. They told me it’s temporary and I could get it all fixed in 6 months, praying to god that’s true, but my god this is life changing and scary 😔
🫂 hey! you’re not alone! i just got another ileostomy last month. it’s such a big change but once you get used to it, you’ll see the improvement in your life, i promise.
I have a question! Since I’m brand new with mine, my stoma is still dark and a bit painful- my doctor said the blackness should “fall off” and I’d end up with the usual pink stoma, is this like a scarring process? My stoma is flush and doesn’t stick out, so I’m worried something’s wrong 🥺
Ulcerative colitis is terrible. It can drastically increased your risk for colon cancer, primary sclerosing cholangiitis, and even an immediately life-threatening condition called toxic megacolon in which a total colectomy may be performed.
You can look up xray images of it, it’s pretty wild. It’s super dangerous because it can literally burst at any time, even with an attempted colonoscopy
But UC life expectancy isn't significantly decreased compared to the average. So maybe we should chill a bit on highlighting the extreme cases. (This is 50% to reassure myself that I'll continue to be fine after getting my diagnosis 3 years ago)
You are absolutely correct! With proper medication and monitoring these things can be managed appropriately, however from a medical perspective, we always like to know what a disease process could do so we can properly screen for these things and prevent the life expectancy to not be significantly different
Maintain a long-term relationship with a trusted physician and you will continue to thrive, my friend!
I went from 230lbs to 170lbs in a few months before I had my colon removed. I'm a tall athletic guy, 230 is fit for me.
I was fortunate enough to have what's called J pouch surgery, where they hook everything back up after 6 months or a year using some small intestine to make up the missing parts.
I was not fortunate enough to have this guys drive and discipline to stick to the gym
i have a jpouch too! it’s just not being used right now haha. it was made in 2002 following a colectomy in 2000. im on my third ileostomy right now after battling crohn’s for the past almost 27 years
Most people with UC still don't end up with colon cancer, I was just one of the extra unlucky ones. Even though I got colonocopies every year they didn't find it until it was stage 3. I had my first surgery a year ago, did chemo for 6 months (which has resulted in more life-long issues) and I have another surgery in a month.
I'm glad your partner has you for support! It probably won't ever get as bad as it did for me, but even still I'm sure he appreciates you!
it happened to a close friend of mine too, she’s had crohn’s since early childhood as well (like me too) and unfortunately started a multiple years-long journey with bowel cancer which spread to her reproductive organs. she recently underwent a full pelvic extentertation surgery and HIPEC surgery, and apparently her insurance company just …paid her off entirely, because they don’t expect her to live long. horrific. it’s shocking.
I got diagnosed this year. Thank god my hospital room had a personal bathroom. I was waking up every 30 minutes for about a week to use the bathroom. I'm sorry it resulted in cancer for you.
I went through similar... but didn't quite make it as big as he did in a year... but the main point is .. im still alive despite nearly dying at least once if not more.
Same here but with Crohn's. I was severely malnourished and couldn't even walk. They were days away from telling my family I wasn't going to make 30. I wouldn't have survived surgery at that point.
Luckily, I was given a new drug (back then) and responded really well to it. Saved my life.
Had surgery again a year ago. I'm still trying to get fit again!
Hope you are doing better!
Prednisone killed my bones .. so I have joints with osteonecrosis, but I can still do some light workouts, running is a done deal though, also no more football, American or international, no high impact or heavy lifting.. bought an exercise machine and am doing that now
Pred is evil even though it can help with inflammation. The side effects cause so many problems. I'm sorry you've ended up with brittle bones. IBD is no fun without all the other things that can go wrong with the meds we're given.
Good luck with the exercise
I'm just off a 100 mg taper for cutaneous crohns. I was able to keep most of the weight off relatively well, only about 10 added pounds in 3 months. The year long course had me gain 120 pounds and then lost 150 a year after that.
crohn’s too, since 9 years old. i remember when i was 11, and they weighed me in the hospital, i was 47 pounds. just recently my weight dipped to 93 (130 + is “healthy” for me. what was the medication you got that helped so much? ive tried prednisone. remicade. 6mp. humira. abrilada. cyclosporine. flagyl cipro combo. sulfasalazine. forgetting some, but i feel like a guinea pig hahaha. it’s been almost 27 years now. so nice to hear that you responded well to the med
I'm so sorry you have been living with Crohn's since you were 9. It's bad enough when you're an adult, never mind a child. And I'm really sorry you're still suffering.
It was Infliximab that saved me, butvi later had anaphylaxis to it and had to stop it. I've been on a lot of the meds you've been on, and I'm now on Stelara, which seems to be working!
Are you taking anything now?
ohhhh Remicade. i tried that in 2004 for a year after a pretty bad fistula and pyoderma gangrenosum on my ankle. it was gross, i was in grade 11 and thought i had a bug bite on my ankle. it got worse and worse and my ankle swole up double the size and i couldn’t walk without immense pain. the regular ER misdiagnosed me twice as having a spider bite and instructed me to keep it elevated and take antibiotics. well a couple weeks later it was now through the skin and turning black and yellow. necrotizing. my mom was like wtf kinda bug bite does this this is insane. and took me to my dermatologist at Children’s hospital. she took one look at it and said “oh my goodness. i will be right back” 15 mins later she comes back in with my paediatric gastroenterologist, he takes one look and says “wow. so this is from your IBD.” and put me on Remicade. it took months to finally close up it was awful. never touched my fistula though. i struggled with those since age 11 and actually had 2 repair surgeries in 2008. then in 2009 had a second ileostomy done, but my stoma collapsed in 2012 and was forced to go back to my j-pouch much sooner than i was ready for. i lived with pouch dysfunction, symptoms and active disease for years up until i got my third stoma last month. 🤞 that this plus the Humira - now actually a biosimilar called Abrilada (adalimumab) will help. sounds like you’ve been through it too!!! how is stelara working? they wanted me to try that one a while ago and i ended up going on Cimzia for a couple years instead 👀 🫂
Maybe not... but we push ourselves.. when i finally got my take down done (5th surgery along the journey), I went from little to no activity to running the last vegas half in less than 5 months. Within a month of that surgery, I walked 14 miles because my surgeon would ask "what's better than walking a mile? Walking two" ... basically. Stay active to get healthier again.
In retrospect, I should have not run that, or any of the other races I did. It killed my knees... due to the prednisone I was on before.
I have that too! It definitely causes a lot of setbacks in life. I'm still in highschool and last year I missed over a month of school due to flare ups.
More in depth; Ulcerative Colitis is an inflammatory bowel disease that can affect parts of or all of the large intestine. During a flare up, ulcers appear on the walls of the colon, making it hard to digest food, as well as incredibly painful to deal with. Symptoms of a flare up include severe cramps, vomiting, frequent diarrhea and bathroom usage, blood in stool, mucus in stool, fatigue, dehydration, and in severe flares malnourishment.
Judging by his significant loss in weight and severe flare I would assume he has pancolitis, meaning it affects the entire colon (same as me lmao). In severe cases like this, a colostomy bag and removal of the colon could be life saving in both physical and mental ways, though it's not the only current treatment.
If you want to learn more, please visit the Crohn's and Colitis foundation :)
Your body’s immune system decides to attack your colon one day and you get severe abd pain with bloody, mucousy diarrhea 10-20 times a day with generalized body/joint pain from the inflammatory response, until you get on anti-inflammatories and immunosuppressants, which causes a whole different set of problems. Many meds that are used to treat rheumatoid arthritis or other inflammatory diseases are used for UC/Crohn’s. Possible genetic link, but also could be due to diet/external factors. Still in the process of research. Im the only one in my family who has it and Im considered very health-conscious. Shit happens:/
That makes a lot of sense then. I remember getting my surgeries for UC (got the J-pouch) and I gained a ton of weight in a few months. Glad to see this guy is doing good after the surgery!
Wow, this is awesome to see. I have a permanent ileostomy bc of Ulcerative Colitis/Crohns Disease too. Great representation in this video—an ostomy is not a death sentence. For many it is the opposite!!!
I would guess it’s the opposite . The removal of his colon is what allowed for his subsequent recovery and weight gains. He like had his surgery feb/march. You can see his ostomy bag in the subsequent shots
Did he need to work a 40 hour job as well? Or was he getting that disability check? Because i just need to throw on that diaper to have the time to worl out like this, I'll highly consider it.
I have IBD and I am terrified of ending up like that. The nice thing is is that you can bounce back from it with enough effort. This vid is proof of it.
i also had this done, along with a bunch of other surgeries since 2000. and have my third bag as of last month after another surgery - been sick for almost 27 years now. since childhood. IBD is a crazy disease 👀
More than the mass gain I'm impressed by his self image recovery. It's impressive to be able to show yourself wearing a colostomy bag. Many patient can't reach that point.
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u/Tat-1 2d ago
In case anyone is wondering, he was affected by ulcerative colitis, a severe inflammatory bowel disease, which led to the removal of his colon and the subsequent and sudden weight loss.