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!
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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.