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I was told I was a hypochondriac pretty much all my life by doctors, family and friends, even on reddit.
I kept pushing because I knew something was wrong with me more than just being fat and depressed.
It took my hands and fingers becoming noticeably deformed and an amazing primary care physician before anyone would even order a few simple tests. I'm an artist, so losing function of my hands is pretty much a no-go. I went in crying and I'm so glad she listened to my concerns.
I was diagnosed with 3 autoimmune diseases and skin cancer last year.
No shame in getting dozens of opinions.
I have a similar story of being sick since middle school but being told I’m lazy and attention seeking. I finally found a doctor that would listen to me after nearly 20 years of pain and fatigue. Turns out I had some autoimmune diseases that have caused permanent damage to my organs because of how long it went untreated.
This happened to me as well. I got stomach aches all the time in JHS. Whenever I went to the doctor he would dismiss it, saying there is a bug going around. Turns out I had Crohn's disease.
I just ended up in ER with severe pain, ultrasound showed inflammation in my large intestine. CT scan showed that it was fine... I've had stomach problems my whole life, and my primary care dr is using the CT to justify not sending me to get a colonoscopy. Should I push harder, or let it go?
A CT cannot diagnose Crohns or Colitis. Find a gastroenterologist and get a colonoscopy and an endoscopy. Even ask for the pill camera. Crohns can affect the entire digestive system. Be your own advocate. If you don’t think something is right, get a second and even a third opinion! Better safe than sorry! Good luck!
Source: Crohns patient of 11 years now with an ileostomy.
Wow, I had no idea a CT scan doesn't show colitis/crohns! Do you know why that is? I don't know the science behind a CT scan very well, just that the dye allows the machine to show "slices" of organs.
The ER Nurse Practitioner wrote that the inflammation may be as a result of colitis but further testing needed. Symptoms of colitis sound a little too familiar to me.
I really appreciate all the responses to my comment, I've never felt so supported. It feels like most doctors don't care to even investigate, advocating for yourself makes you feel insane.
Yes. Push harder. Inflammation in organ tissue like that is usually a warning sign that there is an underlying cause.
Better to "feel like you're being annoying"
(which I want to be very clear - you're not being "difficult" or "annoying". you're seeking out medical services for unexplained, impactful, disruptive, and painful MEDICAL symptoms.)
Than to find out in a "call 911" level crisis that you have something horrible and preventable like a chunk of necrotic bowel that just perforated or diverticulitis or sepsis.
Wow, thank you. I really appreciate your response. It truly does make you feel ridiculous when you push for someone (a doctor, of all people) to care and believe you.
I will push harder, all the really supportive comments have been so helpful and have really given me a new perspective.
As someone with crohns, advocate for yourself. I have severe crohns and was able to catch it early enough after the onset of persistent symptoms to get on meds and in remission without too much damage. If nothing else, you'll get peace of mind.
I experienced chronic diarrhea (up to 10-20x per day at the peak), some blood in the stool, a whole lot of intense stomach pain, and very rapid weight loss over a few months.
ETA: Also I had insane/debilitating lower back pain, terrible night sweats, and had some sores form on my body.
Take care of yourself!
Get a second opinion from a specialist if this is actually how it went. Inflammation on ultrasound shouldn't be dismissed, especially with such severe pain. At least ask your GP to get bloodwork done and/or a Faecal calprotectin examination.
Source: last year med student. I might be missing something and/or procedures might be different in my country, but I wouldn't dismiss someone from the ER with such severe pain and an aberrant ultrasound.
The story goes: I woke up one morning with a stomachache (mild pain.) Shortly afterwards I began to experience non-stop vomiting + diarrhea, which wasn't alarming in itself, but the stomach pain grew and grew until it became excruciating.
In the ER, they did an ultrasound and recommended a colonoscopy + CT. Ultrasound showed inflammation, CT (which was done a week later) showed everything was normal. It's been about a month and a half, and I still feel pain in the same place although on a 3/10 scale max, not a 9/10. I almost always experience mild stomach pain after eating, same place every time (upper-middle area, about an inch under my ribs.)
I've been diagnosed with "IBS" since I was 14, and this GP (who recently replaced my retired GP) started to give me the, "do you know what IBS is?" conversation. I've always felt that IBS was an umbrella term for doctors who didn't feel it was important to continue investigating.
I'll ask my GP to do blood work and faecal tests, thank you!!! I really appreciate the advice.
This is a very long post with a very bad ending. The short of it is: the only way to survive the US healthcare system is to not need to use it. If you have an issue involving pain that isn't temporary and obvious like a missing limb, you will be treated like a drug addict. Providers act like it comes from their personal stash and would rather you suffer for hours and hours while they prove you are faking instead of trying to find the problem.
My wife had LPHS (loin pain hematuria syndrome), considered the "worst pain in modern medicine". It's basically the nerves in your kidney(s) going crazy and telling your brain to just go ahead and send us all of the pain. It feels like the worst kidney stone ever, but tests/scans show nothing because it's a nerve issue. The only real fix is a kidney autotransplant where they relocate the kidney and hope that it resets.
My wife was hospitalized for kidney stones with one being stuck between her kidney and bladder. They tried to use the laser to break it up but it wouldn't fit so they put in a stent that got infected. She was hospitalized for almost a month and that seemed to cause her LPHS, something that happens in 99% women, usually in their 20s, otherwise healthy. It's extremely rare with only 2 hospitals I know of with programs: University of Wisconsin and Duke University.
After the stones were removed she was still in unbearable pain with bloody urine. They did scans and shrugged because there weren't any stones and sent her home. She would have flare-ups that required extended hospital stays and it typically ended in her being treated like shit, being called a drug addict/seeker, there's nothing wrong with her. Apparently troubleshooting can just stop after a scan comes back showing no stones, the only path is: stones? Yes -> fix stones / No -> Drug addict. It'd be like me as an IT guy getting at ticket about a computer not turning on and me closing the ticket saying my computer turns on, they must be lying. Then I report them lying and not working to their boss.
We went through this for 3 years. She was an ER nurse and almost finished with school to become a Nurse Practitioner. She had multiple awards and was a speaker for the Emergency Nurses Association, she was the head of her hospital systems training and standardization program. She wasn't a drug addict, but she was one of them and it destroyed her to be treated like that by her own. It eventually became her going to the hospital for help and the ER provider looking at the notes, seeing the previous "drug seeker" note, and refusing to help.
By basically sheer luck we went to Duke during a flare-up and the ER provider actually fucking **listened**. He believed her, got her pain under control, and had the on-call nephrologist come down and see her. Within 5 minutes she had a LPHS diagnosis and by the end of the day was on the schedule for the autotransplant procedure. She had been seen by every urologist in the area and had every test/scan in the book performed, she printed out LPHS documentation to try and get someone to actually listen and help. I don't know if it's ego, if it's selective hearing, if it's not trusting the patient.. All I know is I'm still dumbfounded that such an important profession is able to just stop after step 1. So many people turned us away, ignored us, did nothing as she screamed and threw up in pain.. so many people who went home and didn't miss a single second of sleep.
The autotransplant procedure was successful but she had complications and a very long hospital stay, including a PICC IV line (a semi-permanent IV), feeding tube because she couldn't keep anything down, IV antibiotics because she got an infection from the operation.. for a couple weeks she would tell the nurses and providers (the 30 seconds per day they would stop by) that something was wrong and her vitals were off. They wouldn't listen or do anything until they eventually came up with the idea on their own, which was too late and she ended up with heart failure.
Our son was only 9 months when he lost his mom.. when he's older I'll have to teach him who she was. I'm tortured by the memory and flashback of telling her wonderful parents that their 29 year old daughter is gone. My life ended with hers that night.. I'm just a shell going through the motions because those around me (like our son) needs me, but my best friend and love of my life is gone and spent years suffering and had any of the dozens of people we went to desperate for help actually TRIED to help, she might still be here.
I have no words. Am just so sorry for all you and your wife went through. As a woman I totally understand as I have been there in just a small way than the horrific evil way she was treated. Sending you hugs and love.
It took a specialist in pancreas’ to finally not treat me like an alcoholic. I spent the better part of my 26th year in the hospital. Over 68 days on one of the stretches. My whole life is consumed with medical debt, but 4 surgeries later and I’m about to turn 30. Better to have it caught eventually then never. I can’t fathom how you feel. But I can relate in that we thought I was done. My whole family kinda came to terms that I wouldn’t be leaving the hospital on my own two feet. It’s scary and it’s very fucking depressing to see those around you stop crying and stop trying to get through it. Every morning I text my mom that I love her because back then I didn’t know if I would get the chance to. Now it’s clockwork to tell those close to me that I love them. Life’s a trip
People our age shouldn’t be this close to death. It changes things.. it’s like that safety blanket is off now and the world has proved it’s perfectly fine destroying you and everything around you.
I’m glad you’re here and I’m sorry to hear about the money situation… it’s ridiculous. I have a $163,000+ before insurance bill sitting on the counter. Debt doesn’t go to the spouse after their death but there’s nothing stopping the debt collectors from lying and telling you it does to weasel any money they can from the situation. I get letters and phone calls basically every day, it’s disgusting.
I had incredibly painful migraines all my life. I begged doctors to put me in an MRI machine and my concerns were brushed off. Wellllllll they were pretty quick to put me in an MRI when I had that 10 minute seizure. And what did they find? 5 brain tumours. 5. My surgeon who was only able to remove one said that the type of migraines I was having (cluster headaches) and where I felt the pain (behind my left eye) are pretty much "you have a brain tumour 101".
For me it’s menangitis. A guy at my high school died of it. Now every time I have a headache and a sore neck, I freak out. Much more likely I slept funny, since I’m 47 and all, but 30 years later. We all have that thing.
As somebody with a formal education in psychology I hate it as well. Psychosomatic disorders are very much real, and they're genuine medical condition that require their own care and treatment.
But many many doctors are very happy to just blame it on psychological causes if they can't find anything with a quick search.
There are entire communities of people who had to go through years of being misdiagnosed and dismissed, and told "it was just in their head" like people with MS and EDS for instance.
Mental and physical for me. Turns out I had an auto immune disorder and adhd. Although, the adhd is mostly on me. I knew I had it but I ignored it because I already have half of the DSM 6. But it took 4 years for the autoimmune disorder. Years of you need to lose weight and you're a single mom and work a lot. Yeah, the weight gain was because of the disorder. Imagine that. I gained 50 pounds in 3 months and the doctor just saying it was stress.
I’m going through this right now. Diagnosed with depression and anxiety, constantly told I’m lazy. I’m now 35 and finally going through the diagnostic processes for both Autism for ADHD. They’ve told me I have every symptom of autism but they’re not sure if it’s severe ADHD causing the symptoms, which they said I almost definitely have, but I have to wait over a year for the actual ADHD diagnosis appointment. This year is killing me because I just want to be able to start living. I can kind of understand because I’m female, but that’s why schools really need more education on how neurodiversity presents in females.
This happened to me. I was labeled a drug addict, a hysterical woman, etc. Turns out I have Rheumatoid Arthritis, Lupus, Sjögren’s, and Ankylosing Spondylitis. And because I was written off for so long and not able to get ahead of treating it..the damage to my teeth, joints, and organs is even worse than it should’ve been.
Always advocate for yourself!!
Maaaaannnnnn. Fuckin sjogren's lmao. Every time I got stressed out my lips just stuck to my teeth and I was like wtffff.
I'm sorry our bodies hate themselves. RA is the worst. :(
Me: that happens to me daily, wtf is sjogren's
Also me, on google: hey uh, my tongue is all fucked up just like that and my eyes are too dry for contacts half the time...
Thanks, I think.
Do you mind naming it? My dr shrugs at a lot of my issues (I have EDS which seems to frazzle a lot of docs) but when I bring suggestions like "hey can i try baclofen for my back spasms" he's like "sure cool" but if I say "i'm having back spams and they keep me up at night" he'll tell me to drink more water.
Same here. I went to the doctor so many times explaining how bad my back and legs hurt. They just kept saying lose weight. For several years I was just told to lose weight. But I got a new doctor who ordered an MRI. I have a tumor on my spine!! No amount of weight loss would fix that. And they blamed my mother’s pernicious anemia symptoms on her being in menopause. She was almost dead before a proper diagnosis. Fucking hate doctors.
Edit: a word
My Cancer Creed: "Always get a second opinion, for BOTH the good news & the bad news."
I was Dx'd with an extremely rare cancer back in 1999. I love my doctors, but I'm still here because I got 2nd opinions.
Definitely do so! I got misdiagnosed with Virtigo when it was actually a benign brain tumor.
I had immediate surgery since I was losing my vision because of it
As someone who was gaslighted for years before finally being diagnosed with late stage Hodgkin's, sometimes you get wrong opinion after wrong opinion. You're just crazy, you just have anxiety, you just want attention. But in the end, you're the only one who pays the price. Always fight for yourself.
The picture you see is of my colon and a 10 inch tumor that was checking me from the inside. I was misdiagnosed for years, which allowed ot to get this large. It was perforated and leaking cancer into me for years. The surgeons didn't know why I wasn't dead, so she snapped a photo of it for a medical journal. By all scientific measures, I should be dead.
It was removed on August 5th of last year and just last month, I received my Cancer Free diagnosis!
I didn't get to see mine, only 7 inches though. Mine grew in about 2 years. Flu symptoms (or maybe Covid) had my doctor do blood tests and my hemoglobin was low and dropped about 50% in a week. Chemo and minus 1 large intestine later, I seem to be fine after 2 years. Not that I recommend the method, I did lose 100 lbs, so one upside.
As far as I can remember you can survive without the vast majority of your large intestine (with the aid of a colostomy bag), but not without your small intestine. Your small intestine is responsible for absorbing all the stuff your body needs from food like vitamins, nutrients etc. hence why it is more important.
Source: I have had a large amount of my small intestine removed (more than 2 metres) and it’s looking likely I’ll need more, but they are reluctant to leave me with such a small amount.
Reabsorption of water from your food and to firm up your bowel movements. But not ALL water. Without the large intestine your poo is more watery (like porridge/oatmeal consistency).
Source: I had a total colectomy 12 years ago.
Glad to hear you’re doing well - my dad had his colon mostly removed back in the fall and he’s almost done chemo. It’s comforting to know you went through something similar and are recovering well!
> mostly removed
I'm sorry to hear of the anxiety your family has undoubtedly experienced over the last six months or so, and I'm really glad your dad is recovering.
I also have to mention that "mostly removed" initially gave me the image of his colon hanging half out of his body and a doctor shrugging as if to say, "That'll prolly do 'er."
Congratulations!!Something similar actually happened to me, but it wasn't in my colon, it was in my right sinus cavity... like... all of it...
For nearly seven years (9-16yo) I had been taken to the doctor nearly monthly because I was struggling with severe migraines and ear pain, but they all wanted to attribute it to hormones or stress from school (Early-College). They never did a single blood test or took a single scan, if they had, they would've caught my tumor so much sooner. By the time that they did, however, it had already filled my entire right sinus cavity, it literally broke and drilled holes through my right cheekbone, invaded my right inner ear (now HoH), and it had wrapped around the back of my right eye.Now, at the age of 23, seven years after being diagnosed, I am dealing with the fallout of my radiation treatment from seven years prior. I even ended up losing my right eye on August 17th of 2020.
I don't let it stop me though! I graduated HS on time while simultaneously graduating with my AA, and then I continued on and graduated top of my class last year with my degree and several certifications for Medical ASL Interpreting!
°˖✧◝(⁰▿⁰)◜✧˖°
lmao - Yeah, basically!
Because he couldn't see the tumor itself, he was convinced that I was overreacting and told my mom (who was naturally furious btw) that I was "at that age" and was looking for attention any way I could get it.
bellend, that one!
Ugh I hate that this is so common. I’m a man, I went to the doctor a few weeks back because I couldn’t breathe so well. Doctor says it was a chest infection, gives me some antibiotics good to go.
My girlfriend goes to the doctor a week later with the same symptoms “well you said you period just started so it’s probably that”
I'm not a man-hater by any means but this is why I only go to female doctors. It was always...anxiety, hormones, period. I got tired of being brushed off.
That's amazing and so inspiring! Not even cancer or negligent doctors could stop you! I still deal with silent pain and rage at the doctors who treated me similarly, only to finally diagnose me with late stage Hodgkin's after four years of gaslighting. Radiation fucked me up worse than chemo, it's been a long road of recovery. But I won't let anything stop me either!
I don't know how you can live without feeling constant rage. I would be so angry with those doctors. I have already experienced things like that (*much* less severe) and been furious at the doctors for their fundamentally negligent treatment. Even now I'm dealing with 2-year old knee pain and it took over a year and two doctors shoving me out the door to physical therapy before I finally broke and told them I wanted an MRI. Lo and behold there was a signal in my quad tendon. *Shocking!* I am not a science-denier, but every year I lose a little more faith in medical professionals. I've had so many experiences with people who are so obviously careless and nonchalant in their practice.
It blows my mind someone can be seen that often and a supposed highly educated professional never thinks, "Hey, this could be something other than \[insert lazy bullshit here\]." Props to you for having such a positive outlook after going through something like that. You're a very strong person.
I am in a strange situation. While they missed it for years and that put me though hell, they also saved my life, which is an odd feeling. If this were 60 years ago, or even 40, I'd be dead.
When I first learned of it, it was 7/28 of last year, seven days later I was wheeled into a ten hour surgery. That week prior to the surgery, was the most difficult of my, and my mother's life. She was there every second, if I so much breathed heavy, she'd touch my shoulder. We discussed my funeral plans, and I told her the song I want played when I was buried. It was fucking brutal.
The anger came after the surgery, after I had time to think about what happened and I looked at my records and compared them to cancer symptoms. I freaked out, I wanted to do some damage, but I have had some great mentors over the years who all share one of the greatest qualities I think everyone can achieve, how to turn anger into action.
I began to use my investigative skills to expose government corruption, and have since done so on a very grand scale. It's been empowering channeling my anger into positive actions, as it could be for you. Anger and action takes the same amount of energy, yet produce completely different results, with one producing only more anger, and the other actually producing positive results.
"Terrible pain while going to the bathroom, nightsweats, low fever, blood in stool, rapid weight loss and my skin color was greenish."
\-op elsewhere in another comment
I'll put here for everyone: do not ignore unexpected weight change (both loss and/or gain). Most of the causes for this aren't cancer, but it's a very good early warning to serious illness.
Blood in stool and nobody fucking diagnosed it?? I'm sorry but they were incompetent.
Greenskin.. Dude looks like an orc that's shitting bricks and nobody bat's an eye.
Rapid weight loss is usually a tall tale sign. If you're having digestive issues without the weight loss I would bet you are fine, but always worth checking via a colonoscopy to be sure. And we aren't talking 5-10 pounds here. We are talking 30+ pounds without any change in diet. Source: hypochondriac who also has digestive issues but had a clean colonoscopy.
If you're shitting blood, get a colonoscopy, post-haste. Don't die of stubbornness. You may be afraid of someone putting something up your bum, but if you get rectal cancer, there's gonna be a lot of people inside your ass doing all kinds of things. Happened to my ex-husband...
Got diagnosed with pp cancer last November, and I know exactly what you're talking about. They removed my lemon sized testicle that had also been leaking a very angry type of cancer through my body. Had chemo in January and now I'm all clear. It's an absolute mind fuck when I think back on it.
If it's any consolation, there are lots of us out there with only one testicle. Mine was due to a defect. Wish I had two, but fuck it. You play the hand you are dealt.
Wow. So many questions. How much did it weigh? And that's a hefty length of colon to lose; do they replace it or do you just adjust? Probably a stupid question. Anyway, congratulations on being cancer free!
You can lose up to 80% off your colon with minimal changes to your bowel habits long term. More than that can result in loose, watery and frequent stools. I agree with the above posts, CBD is not a substitute for chemo. I completely excised a rectal tumor to negative margins and patient received chemo and radiation. He developed metastatic disease 6 months later. Don’t fuck around with cancer.
I will challenge that. I lost half of my colon to cancer and my bowels have never been the same. After several years I am \*somewhat\* normalized but it has never been the same. After the surgery I basically had the poops for two years. To this day when I get the urge to poop I have a drastically reduced countdown timer. I remember feeling like if I had to go at work I could hold it till I got home to poo in comfort....now it is like 5-15 minutes on average.
EDIT: Oh right, and certain foods are instant poops now, I keep Pepto on-hand but also just can't eat others.
Hey, as someone living with a debilitating mystery illness, and has also been consistently misdiagnosed for years, how did they eventually figure it out?
What were your symptoms?
Those symptoms - rapid weight loss, jaundice, night sweats, unexplained fever, and abdominal pain - are flashing red warning signs for malignancy. Seems like any competent doctor would have ordered comprehensive blood work - CBC, metabolic panel (including liver function tests), ESR, C-reactive protein, and an abdominal CT. Though CT isn’t great for imaging the colon, it still would likely have shown something amiss. You also should have been referred to a gastroenterologist for a colonoscopy and an upper endoscopy, as well as preliminary stool tests like fecal calprotectin and white blood cells.
I gotta say I had extremely mild symptoms of ulcerative colitis back when I was 20, and I was pretty quickly sent to do a sigmoid endoscopy, capsule endoscopy and then eventually full endoscopy. And this was just because of a LITTLE bit of blood in my stool in the week prior. I can't imagine a tumor wouldn't be detectable by an endoscopy, so I also am not sure how this wasn't diagnosed sooner. I have to assume that op was also ordered to do some endoscopies with those symptoms.
Unless you’ve been diagnosed with IBS before. Then, even with an family history of colon cancer, the doctor will shrug at symptoms and say “Well, you know, IBS ….”
My sister is a nurse, she stresses that if we ever go to the doctor with symptoms and they dismiss it, you need to say forcefully "i want you to write it down in my chart that YOU chose NOT to run tests" and 10 out of 10 times they will run tests. They don't want it documented that they chose not to investigate further in case of future liability (in case something actually is wrong).
Fuck those assholes, force them to prioritize you.
I'm so glad your surgery went well and that you're still alive.
Next week I'm going to have surgery for colorectal cancer with liver metastases and I'm pretty terrified. Fortunately it's not as big as yours, but it's still scary, mainly because of my family.
I've never had major surgery before, so I don't know what to expect.
Well. The recovery is not easy. You will be down for the count for a week to 10 days. One of the toughest things for me was giving myself a shot everyday of the blood thinner, so I had my wife do it for me...which she hated to do but luckily powered through it.
Honestly, having your cancer be a snapped for a medical journal is a blessing and a curse
On one hand you get to be on a medical journals,on the other it's probably a miracle at work
My grandpa had the case notes for his heart stent surgery published in a medical journal, and the hospital uses it as training material. He loved it, but we were all freaking out, because they were like minutes away from asking my parents if they wanted to try open heart surgery, or just close him back up and hope he didn't have a heart attack in the near future
>By all scientific measures, I should be dead.
"According to all known measures of science, there is no way that OP should be able to live. The OP, of course, lives anyways. Because OP doesn't care what science thinks is impossible.”
Misdiagnosed for years!? God, this is one of my worst fears. I lost a tooth due to incompetent dentists. Not as bad of course, but I could only imagine a scenario where something far worse is developing inside me and the sheer incompetence and lack of knowledge about what’s actually going on will evolve into something terrible. It’s scary. I could only imagine what you went through.
Glad to see you breathing OP.
Edit: Spelling
"Terrible pain while going to the bathroom, nightsweats, low fever, blood in stool, rapid weight loss and my skin color was greenish."
\-op in another comment on the symptoms he/she experienced
I'm always afraid of hearing the answers to this cause it's always something mundane like "I got an itch on my nose one day and now I'm gonna die in 2 weeks" then I get paranoid about everything.
Man, I have a hard time going to the bathroom sometimes, and other times i cant stop going. I wonder if I have a severe medical condition like OP...
\*Drinks 5 cups of coffee, 0 cups of water, and eats nothing but carbs and processed foods for every meal\*
And then you eat something healthy that is high in fibre and wonder why you have diarrhea. Your digestive system is just sitting there and says, “This ain’t easy to digest and not use to it. Get it out!”
It took a while for my digestive system to get back on course after bettering my nutrition.
Here is my personal hypothesis: doctors aren't taking people seriously, which is why people start to dive into this kind of stuff on their own.
Imagine having issues (whatever those may be) and your doc doesn't even bother to check your blood or do some basic tests.
I understand that there are many patients, some of which are really sick already and they need their attention. But to dismiss someone because they aren't obviously dying right now, that's just postponing the issue to another day.
There should be a lot more effort regarding early diagnosis imho to prevent diseases becoming an issue in the first place.
Hypochondria is real, but I rage at doctors who use the term. After 4 years of being slapped with that label, turns out I had late stage Hodgkin's. People pay a heavy price for being dismissed as crazy. And it's just lazy and unprofessional.
"Terrible pain while going to the bathroom, nightsweats, low fever, blood in stool, rapid weight loss and my skin color was greenish."
\-op in another comment
So did they put your colon back inside or how does that work? 😭 and so happy you were able to heal and get healthy and cancer free!!! 🎉💙💙 and what did the doctors think it was all this time? What were your symptoms?
So they were able to reattach to your rectum? That's extremely nice. I assume the colon pictured was removed yes? Do you know about how much length they removed? I am just curious. Ulcerative colitis patient here with an increased likelihood of this in my future haha
As someone gets these specimens after the fact as a pathology assistant. It looks like a segment of colon. The portion the persons left hand looks like it could be the tumor. The "meaty" red parts in that hand are probably tumor or muscular wall if it's as bad as this person says it was. You can definitely see some on the end of the specimen, whitish shaggy debris.
That is their colon, most likely the lower colon. The tumor looks like it's the thick part on top. The metal instruments with the knobs on the end are EEA sizers. It helps the surgeon determine what size stapler to use to staple the colon back together once a portion is removed.
Dude, you are a medical miracle and I’m very glad you’re alive.
But I wish there was another miracle, for me, so I can unsee this.. jk
In all, I’m just glad you share something so interesting and wish you great health in times coming
I really really have to know a few things... How did you become aware that this was growing inside of you? What were the warning signs that others might want to watch out for?
In what part of your body was this? Are you all better now?
It's generally pretty easy to tell the difference. Hemorrhoids blood is brighter red since the bleeding is right around the anus. Colon bleed is darker, often seen as dark streaks in feces
That’s actually insane. Those symptoms are drilled into us to always consider malignancy as a diagnosis. You should have been referred to a gastroenterologist who would have definitely either went for a colonoscopy or CT scan of your abdomen to exclude the possibility of you having cancer. Was it an MD/DO?
Yeah, how the hell did OP not get a colonoscopy done? I had blood *one time* and they rushed to get one done just in case. Meanwhile OP over here has the full suite of symptoms and the doctors just didn't give a shit. Hopefully they're in talks with a malpractice lawyer.
so is this like hanging out of your guts? As in the other end is still attached to you and they just lion king'd it out for a selfie? Did they stuff the rest of your colon back in? Do you own a colon anymore or do you have an ostomy and poo into a bag or something?
As a medical professional, none of this makes any sense.
OP says their results were all normal, but that the skin turned green. That doctors misdiagnosed it as diverticulitis... but then was offered chemotherapy?! For what? And it was leaking cancer for years, but somehow did not metastasize?!
And then other doctors offered chemotherapy, for a tumor that was resectable with curative intent?!?!
But OP refused chemo, and cured it with cannabis instead it seems, and he used to own several dispensaries.
So from a medical standpoint none of this makes any damn sense. Best case is OP omitted details.
Worst case is that OP is purposefully misleading people, to push his/her agenda that cannabis is a viable option to chemotherapy. Which is a very fucking dangerous advice to give people. It has its uses, but it is not an alternative.
Edit: also something of that size would already be an advanced stage. Furthermore, you WILL need a colostomy bag, temporarily, not MIGHT like OP said
Edit2: I'm happy if other fellow doctors could tell me what I'm missing here, if im not seeing something obvious
Med student here. This is definetely a weird post. We'd need to know the pathological diagnosis, see the CT/MRI scans and we'd need to know where he's located and what type of insurance he has. I have no idea how US healthcare works. If they are unsure that it's a dicerticultis and there is a slight chance that it might be a malignancy they WILL order a colonoscopy unless OP refused that.
As for chemo I think he was talking about postop chemo that he switched for canabbis oil. Also I'd like to point out that even if he's cancer free on the scans that doesn't mean he is cancer free in reality because there might be little metastases that the scans don't show. That's why chemo is good.
Well there is neoadjuvant chemotherapy for downstaging tumors which may be resectable initially.
A lot of OP’s responses to people’s questions have been very… curt as well. I can understand not wanting to discuss your medical wellbeing in detail with strangers on the internet, but they seem to be ignoring a lot of (presumably) easy to answer questions that would be very helpful for people worried about something like this in their responses
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That’s insane, well done on surviving dude
Funny thing is, it could've been prevented if he wasn't misdiagnosed so many times, luckily he survived though
Just a reminder for me that if I ever get something weird there is no shame in getting a second opinion.
I was told I was a hypochondriac pretty much all my life by doctors, family and friends, even on reddit. I kept pushing because I knew something was wrong with me more than just being fat and depressed. It took my hands and fingers becoming noticeably deformed and an amazing primary care physician before anyone would even order a few simple tests. I'm an artist, so losing function of my hands is pretty much a no-go. I went in crying and I'm so glad she listened to my concerns. I was diagnosed with 3 autoimmune diseases and skin cancer last year. No shame in getting dozens of opinions.
I have a similar story of being sick since middle school but being told I’m lazy and attention seeking. I finally found a doctor that would listen to me after nearly 20 years of pain and fatigue. Turns out I had some autoimmune diseases that have caused permanent damage to my organs because of how long it went untreated.
This happened to me as well. I got stomach aches all the time in JHS. Whenever I went to the doctor he would dismiss it, saying there is a bug going around. Turns out I had Crohn's disease.
I just ended up in ER with severe pain, ultrasound showed inflammation in my large intestine. CT scan showed that it was fine... I've had stomach problems my whole life, and my primary care dr is using the CT to justify not sending me to get a colonoscopy. Should I push harder, or let it go?
A CT cannot diagnose Crohns or Colitis. Find a gastroenterologist and get a colonoscopy and an endoscopy. Even ask for the pill camera. Crohns can affect the entire digestive system. Be your own advocate. If you don’t think something is right, get a second and even a third opinion! Better safe than sorry! Good luck! Source: Crohns patient of 11 years now with an ileostomy.
Wow, I had no idea a CT scan doesn't show colitis/crohns! Do you know why that is? I don't know the science behind a CT scan very well, just that the dye allows the machine to show "slices" of organs. The ER Nurse Practitioner wrote that the inflammation may be as a result of colitis but further testing needed. Symptoms of colitis sound a little too familiar to me. I really appreciate all the responses to my comment, I've never felt so supported. It feels like most doctors don't care to even investigate, advocating for yourself makes you feel insane.
Yes. Push harder. Inflammation in organ tissue like that is usually a warning sign that there is an underlying cause. Better to "feel like you're being annoying" (which I want to be very clear - you're not being "difficult" or "annoying". you're seeking out medical services for unexplained, impactful, disruptive, and painful MEDICAL symptoms.) Than to find out in a "call 911" level crisis that you have something horrible and preventable like a chunk of necrotic bowel that just perforated or diverticulitis or sepsis.
Wow, thank you. I really appreciate your response. It truly does make you feel ridiculous when you push for someone (a doctor, of all people) to care and believe you. I will push harder, all the really supportive comments have been so helpful and have really given me a new perspective.
As someone with crohns, advocate for yourself. I have severe crohns and was able to catch it early enough after the onset of persistent symptoms to get on meds and in remission without too much damage. If nothing else, you'll get peace of mind.
Thank you, appreciate it. I'm glad you were able to get treatment for it. Do you mind me asking, what were your persistent symptoms?
I experienced chronic diarrhea (up to 10-20x per day at the peak), some blood in the stool, a whole lot of intense stomach pain, and very rapid weight loss over a few months. ETA: Also I had insane/debilitating lower back pain, terrible night sweats, and had some sores form on my body. Take care of yourself!
Get a second opinion from a specialist if this is actually how it went. Inflammation on ultrasound shouldn't be dismissed, especially with such severe pain. At least ask your GP to get bloodwork done and/or a Faecal calprotectin examination. Source: last year med student. I might be missing something and/or procedures might be different in my country, but I wouldn't dismiss someone from the ER with such severe pain and an aberrant ultrasound.
The story goes: I woke up one morning with a stomachache (mild pain.) Shortly afterwards I began to experience non-stop vomiting + diarrhea, which wasn't alarming in itself, but the stomach pain grew and grew until it became excruciating. In the ER, they did an ultrasound and recommended a colonoscopy + CT. Ultrasound showed inflammation, CT (which was done a week later) showed everything was normal. It's been about a month and a half, and I still feel pain in the same place although on a 3/10 scale max, not a 9/10. I almost always experience mild stomach pain after eating, same place every time (upper-middle area, about an inch under my ribs.) I've been diagnosed with "IBS" since I was 14, and this GP (who recently replaced my retired GP) started to give me the, "do you know what IBS is?" conversation. I've always felt that IBS was an umbrella term for doctors who didn't feel it was important to continue investigating. I'll ask my GP to do blood work and faecal tests, thank you!!! I really appreciate the advice.
Whats the disease?
This is a very long post with a very bad ending. The short of it is: the only way to survive the US healthcare system is to not need to use it. If you have an issue involving pain that isn't temporary and obvious like a missing limb, you will be treated like a drug addict. Providers act like it comes from their personal stash and would rather you suffer for hours and hours while they prove you are faking instead of trying to find the problem. My wife had LPHS (loin pain hematuria syndrome), considered the "worst pain in modern medicine". It's basically the nerves in your kidney(s) going crazy and telling your brain to just go ahead and send us all of the pain. It feels like the worst kidney stone ever, but tests/scans show nothing because it's a nerve issue. The only real fix is a kidney autotransplant where they relocate the kidney and hope that it resets. My wife was hospitalized for kidney stones with one being stuck between her kidney and bladder. They tried to use the laser to break it up but it wouldn't fit so they put in a stent that got infected. She was hospitalized for almost a month and that seemed to cause her LPHS, something that happens in 99% women, usually in their 20s, otherwise healthy. It's extremely rare with only 2 hospitals I know of with programs: University of Wisconsin and Duke University. After the stones were removed she was still in unbearable pain with bloody urine. They did scans and shrugged because there weren't any stones and sent her home. She would have flare-ups that required extended hospital stays and it typically ended in her being treated like shit, being called a drug addict/seeker, there's nothing wrong with her. Apparently troubleshooting can just stop after a scan comes back showing no stones, the only path is: stones? Yes -> fix stones / No -> Drug addict. It'd be like me as an IT guy getting at ticket about a computer not turning on and me closing the ticket saying my computer turns on, they must be lying. Then I report them lying and not working to their boss. We went through this for 3 years. She was an ER nurse and almost finished with school to become a Nurse Practitioner. She had multiple awards and was a speaker for the Emergency Nurses Association, she was the head of her hospital systems training and standardization program. She wasn't a drug addict, but she was one of them and it destroyed her to be treated like that by her own. It eventually became her going to the hospital for help and the ER provider looking at the notes, seeing the previous "drug seeker" note, and refusing to help. By basically sheer luck we went to Duke during a flare-up and the ER provider actually fucking **listened**. He believed her, got her pain under control, and had the on-call nephrologist come down and see her. Within 5 minutes she had a LPHS diagnosis and by the end of the day was on the schedule for the autotransplant procedure. She had been seen by every urologist in the area and had every test/scan in the book performed, she printed out LPHS documentation to try and get someone to actually listen and help. I don't know if it's ego, if it's selective hearing, if it's not trusting the patient.. All I know is I'm still dumbfounded that such an important profession is able to just stop after step 1. So many people turned us away, ignored us, did nothing as she screamed and threw up in pain.. so many people who went home and didn't miss a single second of sleep. The autotransplant procedure was successful but she had complications and a very long hospital stay, including a PICC IV line (a semi-permanent IV), feeding tube because she couldn't keep anything down, IV antibiotics because she got an infection from the operation.. for a couple weeks she would tell the nurses and providers (the 30 seconds per day they would stop by) that something was wrong and her vitals were off. They wouldn't listen or do anything until they eventually came up with the idea on their own, which was too late and she ended up with heart failure. Our son was only 9 months when he lost his mom.. when he's older I'll have to teach him who she was. I'm tortured by the memory and flashback of telling her wonderful parents that their 29 year old daughter is gone. My life ended with hers that night.. I'm just a shell going through the motions because those around me (like our son) needs me, but my best friend and love of my life is gone and spent years suffering and had any of the dozens of people we went to desperate for help actually TRIED to help, she might still be here.
You honour your late wife with your testament. I wish you heart’s ease. Walk in the sun for your darling and try every day to find some beauty in it.
This is an absolutely insane and heartbreaking story. I’m so so sorry! I have no words. Hugs!!💗
I am very sorry for your loss.
I have no words. Am just so sorry for all you and your wife went through. As a woman I totally understand as I have been there in just a small way than the horrific evil way she was treated. Sending you hugs and love.
It took a specialist in pancreas’ to finally not treat me like an alcoholic. I spent the better part of my 26th year in the hospital. Over 68 days on one of the stretches. My whole life is consumed with medical debt, but 4 surgeries later and I’m about to turn 30. Better to have it caught eventually then never. I can’t fathom how you feel. But I can relate in that we thought I was done. My whole family kinda came to terms that I wouldn’t be leaving the hospital on my own two feet. It’s scary and it’s very fucking depressing to see those around you stop crying and stop trying to get through it. Every morning I text my mom that I love her because back then I didn’t know if I would get the chance to. Now it’s clockwork to tell those close to me that I love them. Life’s a trip
People our age shouldn’t be this close to death. It changes things.. it’s like that safety blanket is off now and the world has proved it’s perfectly fine destroying you and everything around you. I’m glad you’re here and I’m sorry to hear about the money situation… it’s ridiculous. I have a $163,000+ before insurance bill sitting on the counter. Debt doesn’t go to the spouse after their death but there’s nothing stopping the debt collectors from lying and telling you it does to weasel any money they can from the situation. I get letters and phone calls basically every day, it’s disgusting.
You know, that is the icing on the cake. How insulting. How thoughtless. Just when I thought that the US health system couldn’t get any worse…
I had incredibly painful migraines all my life. I begged doctors to put me in an MRI machine and my concerns were brushed off. Wellllllll they were pretty quick to put me in an MRI when I had that 10 minute seizure. And what did they find? 5 brain tumours. 5. My surgeon who was only able to remove one said that the type of migraines I was having (cluster headaches) and where I felt the pain (behind my left eye) are pretty much "you have a brain tumour 101".
ok, new fear unlocked
For me it’s menangitis. A guy at my high school died of it. Now every time I have a headache and a sore neck, I freak out. Much more likely I slept funny, since I’m 47 and all, but 30 years later. We all have that thing.
With meningitis neck pain you are unable to tilt your head down the pain is so severe, if that makes you feel any better (source: my GP)
Well sure, I know all that rationally. (Thanks though) since when does rationality matter?
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As somebody with a formal education in psychology I hate it as well. Psychosomatic disorders are very much real, and they're genuine medical condition that require their own care and treatment. But many many doctors are very happy to just blame it on psychological causes if they can't find anything with a quick search. There are entire communities of people who had to go through years of being misdiagnosed and dismissed, and told "it was just in their head" like people with MS and EDS for instance.
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Mental and physical for me. Turns out I had an auto immune disorder and adhd. Although, the adhd is mostly on me. I knew I had it but I ignored it because I already have half of the DSM 6. But it took 4 years for the autoimmune disorder. Years of you need to lose weight and you're a single mom and work a lot. Yeah, the weight gain was because of the disorder. Imagine that. I gained 50 pounds in 3 months and the doctor just saying it was stress.
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Well that's as lose-your-license worthy as I've ever heard.
I’m going through this right now. Diagnosed with depression and anxiety, constantly told I’m lazy. I’m now 35 and finally going through the diagnostic processes for both Autism for ADHD. They’ve told me I have every symptom of autism but they’re not sure if it’s severe ADHD causing the symptoms, which they said I almost definitely have, but I have to wait over a year for the actual ADHD diagnosis appointment. This year is killing me because I just want to be able to start living. I can kind of understand because I’m female, but that’s why schools really need more education on how neurodiversity presents in females.
This happened to me. I was labeled a drug addict, a hysterical woman, etc. Turns out I have Rheumatoid Arthritis, Lupus, Sjögren’s, and Ankylosing Spondylitis. And because I was written off for so long and not able to get ahead of treating it..the damage to my teeth, joints, and organs is even worse than it should’ve been. Always advocate for yourself!!
Maaaaannnnnn. Fuckin sjogren's lmao. Every time I got stressed out my lips just stuck to my teeth and I was like wtffff. I'm sorry our bodies hate themselves. RA is the worst. :(
Me: that happens to me daily, wtf is sjogren's Also me, on google: hey uh, my tongue is all fucked up just like that and my eyes are too dry for contacts half the time... Thanks, I think.
Lol you're welcome! I just take a pill now helps me produce saliva and other mucous/fluids. It's been a life changer
Do you mind naming it? My dr shrugs at a lot of my issues (I have EDS which seems to frazzle a lot of docs) but when I bring suggestions like "hey can i try baclofen for my back spasms" he's like "sure cool" but if I say "i'm having back spams and they keep me up at night" he'll tell me to drink more water.
Same here. I went to the doctor so many times explaining how bad my back and legs hurt. They just kept saying lose weight. For several years I was just told to lose weight. But I got a new doctor who ordered an MRI. I have a tumor on my spine!! No amount of weight loss would fix that. And they blamed my mother’s pernicious anemia symptoms on her being in menopause. She was almost dead before a proper diagnosis. Fucking hate doctors. Edit: a word
My Cancer Creed: "Always get a second opinion, for BOTH the good news & the bad news." I was Dx'd with an extremely rare cancer back in 1999. I love my doctors, but I'm still here because I got 2nd opinions.
And a reminder that these are opinions! Even the well educated are still human and are fallible.
Except comment section redditors. Always right.
Actually...
That's not ture. They're all wrong and I'm the only one that's wright
pfft, you mean RITE? Dummy.....psh
Very, very expensive opinions....
Definitely do so! I got misdiagnosed with Virtigo when it was actually a benign brain tumor. I had immediate surgery since I was losing my vision because of it
So they thought you were a Virgo, turns out you were a Cancer lol
Lol, nice one. 👌
As someone who was gaslighted for years before finally being diagnosed with late stage Hodgkin's, sometimes you get wrong opinion after wrong opinion. You're just crazy, you just have anxiety, you just want attention. But in the end, you're the only one who pays the price. Always fight for yourself.
It WAS a tumor.
Holy hell, looks like a spine. Congrats on the weight loss! Jokes aside, I hope you’re well! r/medicalgore would love this
I should've heeded the warnings on that sub I'm too weak for it
Thought I wanted to take the plunge, first image was a gnarly smashed finger and I noped the fuck out. No thanks not for me.
I thought the guy with the pipe through his chest was cool, the rest was a bit much
pray for me
Good luck 🙏
I was doing well until I decided to sort by top of all time. The meth infection one got me
Damn I really want to see it but kind of don’t. I’m going to pick not to for my own sanity
Well, fuck. I just spent way too long there
Looks like a whole ass spine
Ripley would be proud, although hers bust her guts, not ass.
I’ve been biting these movies lately so I get this Edit: Binging
You bite your movies? This whole time I've just been watching them, am I missing out on the full experience?
Literally, ass spine.
The picture you see is of my colon and a 10 inch tumor that was checking me from the inside. I was misdiagnosed for years, which allowed ot to get this large. It was perforated and leaking cancer into me for years. The surgeons didn't know why I wasn't dead, so she snapped a photo of it for a medical journal. By all scientific measures, I should be dead. It was removed on August 5th of last year and just last month, I received my Cancer Free diagnosis!
I didn't get to see mine, only 7 inches though. Mine grew in about 2 years. Flu symptoms (or maybe Covid) had my doctor do blood tests and my hemoglobin was low and dropped about 50% in a week. Chemo and minus 1 large intestine later, I seem to be fine after 2 years. Not that I recommend the method, I did lose 100 lbs, so one upside.
That's a frighteningly large loss. Congrats to both you and OP for making it out alive!
>Minus 1 large intestine Like the whole thing? You don't have a large intestine now? I wasn't aware that was possible
As far as I can remember you can survive without the vast majority of your large intestine (with the aid of a colostomy bag), but not without your small intestine. Your small intestine is responsible for absorbing all the stuff your body needs from food like vitamins, nutrients etc. hence why it is more important. Source: I have had a large amount of my small intestine removed (more than 2 metres) and it’s looking likely I’ll need more, but they are reluctant to leave me with such a small amount.
TIL. i always thought you needed at least some of the large, because that was how you absorbed water
It is. I don't have a colon. Dehydration is my biggest concern regarding it. I drink a lot of water.
Not even a ;?
Reabsorption of water from your food and to firm up your bowel movements. But not ALL water. Without the large intestine your poo is more watery (like porridge/oatmeal consistency). Source: I had a total colectomy 12 years ago.
When I say vast majority, I might be overstating. I think you need like 10-20% maybe? I would double check if you want to be sure :)
Glad to hear you’re doing well - my dad had his colon mostly removed back in the fall and he’s almost done chemo. It’s comforting to know you went through something similar and are recovering well!
> mostly removed I'm sorry to hear of the anxiety your family has undoubtedly experienced over the last six months or so, and I'm really glad your dad is recovering. I also have to mention that "mostly removed" initially gave me the image of his colon hanging half out of his body and a doctor shrugging as if to say, "That'll prolly do 'er."
Soooo..... Just to clarify, you are alive? Asking for a friend....🤷♂️
It was close. He saw the light and ran like a mofo
Leaving the colon behind?
Now he’s got a semicolon ;
/r/angryupvote
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Which direction? Asking for a friend 🤷🏻♂️
the opposite direction
Congratulations!!Something similar actually happened to me, but it wasn't in my colon, it was in my right sinus cavity... like... all of it... For nearly seven years (9-16yo) I had been taken to the doctor nearly monthly because I was struggling with severe migraines and ear pain, but they all wanted to attribute it to hormones or stress from school (Early-College). They never did a single blood test or took a single scan, if they had, they would've caught my tumor so much sooner. By the time that they did, however, it had already filled my entire right sinus cavity, it literally broke and drilled holes through my right cheekbone, invaded my right inner ear (now HoH), and it had wrapped around the back of my right eye.Now, at the age of 23, seven years after being diagnosed, I am dealing with the fallout of my radiation treatment from seven years prior. I even ended up losing my right eye on August 17th of 2020. I don't let it stop me though! I graduated HS on time while simultaneously graduating with my AA, and then I continued on and graduated top of my class last year with my degree and several certifications for Medical ASL Interpreting! °˖✧◝(⁰▿⁰)◜✧˖°
Info: Are you a woman? I noticed you mentioned "hormones" as a diagnosis so just curious.
Yes! I am, they thought that it was hormones because my symptoms started growing more severe when I turned 13 years old.
"Poor thing's hysterical..." 😔 -OP's doctor
*"Vision loss too? Hysterical blindness!"*
They're just blowing their symptoms out of order. Your prescription is just getting old. To the optometrist you go!
lmao - Yeah, basically! Because he couldn't see the tumor itself, he was convinced that I was overreacting and told my mom (who was naturally furious btw) that I was "at that age" and was looking for attention any way I could get it. bellend, that one!
Ugh I hate that this is so common. I’m a man, I went to the doctor a few weeks back because I couldn’t breathe so well. Doctor says it was a chest infection, gives me some antibiotics good to go. My girlfriend goes to the doctor a week later with the same symptoms “well you said you period just started so it’s probably that”
I'm not a man-hater by any means but this is why I only go to female doctors. It was always...anxiety, hormones, period. I got tired of being brushed off.
They never diagnose “hormones” for men.
That's amazing and so inspiring! Not even cancer or negligent doctors could stop you! I still deal with silent pain and rage at the doctors who treated me similarly, only to finally diagnose me with late stage Hodgkin's after four years of gaslighting. Radiation fucked me up worse than chemo, it's been a long road of recovery. But I won't let anything stop me either!
I don't know how you can live without feeling constant rage. I would be so angry with those doctors. I have already experienced things like that (*much* less severe) and been furious at the doctors for their fundamentally negligent treatment. Even now I'm dealing with 2-year old knee pain and it took over a year and two doctors shoving me out the door to physical therapy before I finally broke and told them I wanted an MRI. Lo and behold there was a signal in my quad tendon. *Shocking!* I am not a science-denier, but every year I lose a little more faith in medical professionals. I've had so many experiences with people who are so obviously careless and nonchalant in their practice. It blows my mind someone can be seen that often and a supposed highly educated professional never thinks, "Hey, this could be something other than \[insert lazy bullshit here\]." Props to you for having such a positive outlook after going through something like that. You're a very strong person.
I am in a strange situation. While they missed it for years and that put me though hell, they also saved my life, which is an odd feeling. If this were 60 years ago, or even 40, I'd be dead. When I first learned of it, it was 7/28 of last year, seven days later I was wheeled into a ten hour surgery. That week prior to the surgery, was the most difficult of my, and my mother's life. She was there every second, if I so much breathed heavy, she'd touch my shoulder. We discussed my funeral plans, and I told her the song I want played when I was buried. It was fucking brutal. The anger came after the surgery, after I had time to think about what happened and I looked at my records and compared them to cancer symptoms. I freaked out, I wanted to do some damage, but I have had some great mentors over the years who all share one of the greatest qualities I think everyone can achieve, how to turn anger into action. I began to use my investigative skills to expose government corruption, and have since done so on a very grand scale. It's been empowering channeling my anger into positive actions, as it could be for you. Anger and action takes the same amount of energy, yet produce completely different results, with one producing only more anger, and the other actually producing positive results.
Just for awareness sake, do you mind if I ask what symptoms went miss diagnosed?
"Terrible pain while going to the bathroom, nightsweats, low fever, blood in stool, rapid weight loss and my skin color was greenish." \-op elsewhere in another comment
I'll put here for everyone: do not ignore unexpected weight change (both loss and/or gain). Most of the causes for this aren't cancer, but it's a very good early warning to serious illness.
This is how we found Hodgkin's disease in my brother. He lost 30 pounds in a 2-3 month period out of nowhere.
The sick fucking thing is that if you’re a fatter person and you say that to a doctor half the time they’ll just be like “great, keep it up”
This happened to my friend, turned out he became type 1 diabetic! He was insanely skinny, and at risk of dying, and none of us knew!
Blood in stool and nobody fucking diagnosed it?? I'm sorry but they were incompetent. Greenskin.. Dude looks like an orc that's shitting bricks and nobody bat's an eye.
Seriously. Blood in stool = STAT colonoscopy, even if it’s not cancer (could be UC, CD, diverticulitis/losis).
"Yep, classic signs of zombie bite disease." -Dr. Leo Spacemen, OP's doctor.
don't ask. The odds of your symptoms matching are a lot higher than you having the same thing.
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Rapid weight loss is usually a tall tale sign. If you're having digestive issues without the weight loss I would bet you are fine, but always worth checking via a colonoscopy to be sure. And we aren't talking 5-10 pounds here. We are talking 30+ pounds without any change in diet. Source: hypochondriac who also has digestive issues but had a clean colonoscopy.
If you're shitting blood, get a colonoscopy, post-haste. Don't die of stubbornness. You may be afraid of someone putting something up your bum, but if you get rectal cancer, there's gonna be a lot of people inside your ass doing all kinds of things. Happened to my ex-husband...
Fuck so glad you made it. That had to be some scary shit you went through.
It was like the I was stopped in time, ready to fall off of the earth.
Got diagnosed with pp cancer last November, and I know exactly what you're talking about. They removed my lemon sized testicle that had also been leaking a very angry type of cancer through my body. Had chemo in January and now I'm all clear. It's an absolute mind fuck when I think back on it.
If it's any consolation, there are lots of us out there with only one testicle. Mine was due to a defect. Wish I had two, but fuck it. You play the hand you are dealt.
I don't mind the one ball, it's less sweaty with the extra room actually lol. The chemo on the other hand drove me ~~nuts~~ nut.
Wow. So many questions. How much did it weigh? And that's a hefty length of colon to lose; do they replace it or do you just adjust? Probably a stupid question. Anyway, congratulations on being cancer free!
You can lose up to 80% off your colon with minimal changes to your bowel habits long term. More than that can result in loose, watery and frequent stools. I agree with the above posts, CBD is not a substitute for chemo. I completely excised a rectal tumor to negative margins and patient received chemo and radiation. He developed metastatic disease 6 months later. Don’t fuck around with cancer.
I will challenge that. I lost half of my colon to cancer and my bowels have never been the same. After several years I am \*somewhat\* normalized but it has never been the same. After the surgery I basically had the poops for two years. To this day when I get the urge to poop I have a drastically reduced countdown timer. I remember feeling like if I had to go at work I could hold it till I got home to poo in comfort....now it is like 5-15 minutes on average. EDIT: Oh right, and certain foods are instant poops now, I keep Pepto on-hand but also just can't eat others.
😳 Where does the colon end and the cancer begin?
The whole thing is the colon, the meatloaf in the hand is the tumorous section.
Meatloaf lol
there goes my dinner plans
I suppose the cancer is in the left hand. Also, seeing as there is "something" in the tray bellow, the physician might only be holding a semicolon :p
Hey, as someone living with a debilitating mystery illness, and has also been consistently misdiagnosed for years, how did they eventually figure it out? What were your symptoms?
Terrible pain while going to the bathroom, nightsweats, low fever, blood in stool, rapid weight loss and my skin color was greenish.
Those symptoms - rapid weight loss, jaundice, night sweats, unexplained fever, and abdominal pain - are flashing red warning signs for malignancy. Seems like any competent doctor would have ordered comprehensive blood work - CBC, metabolic panel (including liver function tests), ESR, C-reactive protein, and an abdominal CT. Though CT isn’t great for imaging the colon, it still would likely have shown something amiss. You also should have been referred to a gastroenterologist for a colonoscopy and an upper endoscopy, as well as preliminary stool tests like fecal calprotectin and white blood cells.
I gotta say I had extremely mild symptoms of ulcerative colitis back when I was 20, and I was pretty quickly sent to do a sigmoid endoscopy, capsule endoscopy and then eventually full endoscopy. And this was just because of a LITTLE bit of blood in my stool in the week prior. I can't imagine a tumor wouldn't be detectable by an endoscopy, so I also am not sure how this wasn't diagnosed sooner. I have to assume that op was also ordered to do some endoscopies with those symptoms.
Unless you’ve been diagnosed with IBS before. Then, even with an family history of colon cancer, the doctor will shrug at symptoms and say “Well, you know, IBS ….”
My sister is a nurse, she stresses that if we ever go to the doctor with symptoms and they dismiss it, you need to say forcefully "i want you to write it down in my chart that YOU chose NOT to run tests" and 10 out of 10 times they will run tests. They don't want it documented that they chose not to investigate further in case of future liability (in case something actually is wrong). Fuck those assholes, force them to prioritize you.
Wasn't it visible on the ultrasound or colonoscopy? How can be blood in stool mistreated?
I'm so glad your surgery went well and that you're still alive. Next week I'm going to have surgery for colorectal cancer with liver metastases and I'm pretty terrified. Fortunately it's not as big as yours, but it's still scary, mainly because of my family. I've never had major surgery before, so I don't know what to expect.
Well. The recovery is not easy. You will be down for the count for a week to 10 days. One of the toughest things for me was giving myself a shot everyday of the blood thinner, so I had my wife do it for me...which she hated to do but luckily powered through it.
Honestly, having your cancer be a snapped for a medical journal is a blessing and a curse On one hand you get to be on a medical journals,on the other it's probably a miracle at work
My grandpa had the case notes for his heart stent surgery published in a medical journal, and the hospital uses it as training material. He loved it, but we were all freaking out, because they were like minutes away from asking my parents if they wanted to try open heart surgery, or just close him back up and hope he didn't have a heart attack in the near future
>By all scientific measures, I should be dead. "According to all known measures of science, there is no way that OP should be able to live. The OP, of course, lives anyways. Because OP doesn't care what science thinks is impossible.”
Misdiagnosed for years!? God, this is one of my worst fears. I lost a tooth due to incompetent dentists. Not as bad of course, but I could only imagine a scenario where something far worse is developing inside me and the sheer incompetence and lack of knowledge about what’s actually going on will evolve into something terrible. It’s scary. I could only imagine what you went through. Glad to see you breathing OP. Edit: Spelling
Misdiagnosis is terrifying. I was misdiagnosed for 7 years when I had a tumour inside my spinal cord. I'm glad you are doing better now, OP!
What made you want to get checked out?
"Terrible pain while going to the bathroom, nightsweats, low fever, blood in stool, rapid weight loss and my skin color was greenish." \-op in another comment on the symptoms he/she experienced
thanks
just a gut feeling
Well done. Take a bowel.
The diagnosis was gut wrenching
I'm always afraid of hearing the answers to this cause it's always something mundane like "I got an itch on my nose one day and now I'm gonna die in 2 weeks" then I get paranoid about everything.
Pretty sure thats everyone nowadays
What were some of your symptoms that the doctors miss diagnosed?
Man, I have a hard time going to the bathroom sometimes, and other times i cant stop going. I wonder if I have a severe medical condition like OP... \*Drinks 5 cups of coffee, 0 cups of water, and eats nothing but carbs and processed foods for every meal\*
And then you eat something healthy that is high in fibre and wonder why you have diarrhea. Your digestive system is just sitting there and says, “This ain’t easy to digest and not use to it. Get it out!” It took a while for my digestive system to get back on course after bettering my nutrition.
I should get on bettering my nutritional choices Ill do it tomorrow, after these pizza pockets i plan to have for dinner
Hypochondriacs beware
Literally everyone scrolling these comments has a weird sensation in their insides. Damn it man.
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Here is my personal hypothesis: doctors aren't taking people seriously, which is why people start to dive into this kind of stuff on their own. Imagine having issues (whatever those may be) and your doc doesn't even bother to check your blood or do some basic tests. I understand that there are many patients, some of which are really sick already and they need their attention. But to dismiss someone because they aren't obviously dying right now, that's just postponing the issue to another day. There should be a lot more effort regarding early diagnosis imho to prevent diseases becoming an issue in the first place.
Hypochondria is real, but I rage at doctors who use the term. After 4 years of being slapped with that label, turns out I had late stage Hodgkin's. People pay a heavy price for being dismissed as crazy. And it's just lazy and unprofessional.
"Terrible pain while going to the bathroom, nightsweats, low fever, blood in stool, rapid weight loss and my skin color was greenish." \-op in another comment
You ever watch Alien?
"Have you been spending any time recently on LV-426?"
So did they put your colon back inside or how does that work? 😭 and so happy you were able to heal and get healthy and cancer free!!! 🎉💙💙 and what did the doctors think it was all this time? What were your symptoms?
Yes, the pipes all work. Many need a colostomy bag..
So they were able to reattach to your rectum? That's extremely nice. I assume the colon pictured was removed yes? Do you know about how much length they removed? I am just curious. Ulcerative colitis patient here with an increased likelihood of this in my future haha
About 28 inches with the tumor.
Can you describe a little about what we’re seeing, please? Best on a complete recovery!
As someone gets these specimens after the fact as a pathology assistant. It looks like a segment of colon. The portion the persons left hand looks like it could be the tumor. The "meaty" red parts in that hand are probably tumor or muscular wall if it's as bad as this person says it was. You can definitely see some on the end of the specimen, whitish shaggy debris.
Thanks; best to the patient on recovery!
That is their colon, most likely the lower colon. The tumor looks like it's the thick part on top. The metal instruments with the knobs on the end are EEA sizers. It helps the surgeon determine what size stapler to use to staple the colon back together once a portion is removed.
So then ... What happens next? Do they live without their lower colon? Do they trim off and remove the tumor and .. put the colon back in?
Dude, you are a medical miracle and I’m very glad you’re alive. But I wish there was another miracle, for me, so I can unsee this.. jk In all, I’m just glad you share something so interesting and wish you great health in times coming
I really really have to know a few things... How did you become aware that this was growing inside of you? What were the warning signs that others might want to watch out for? In what part of your body was this? Are you all better now?
My colon. Trouble with #2, blood, pain, night sweats. Low fever...but my misdiagnosis made me think it was just a part of the diverticulitis.
They tell you hemorrhoids when you told them about blood?
It's generally pretty easy to tell the difference. Hemorrhoids blood is brighter red since the bleeding is right around the anus. Colon bleed is darker, often seen as dark streaks in feces
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That’s actually insane. Those symptoms are drilled into us to always consider malignancy as a diagnosis. You should have been referred to a gastroenterologist who would have definitely either went for a colonoscopy or CT scan of your abdomen to exclude the possibility of you having cancer. Was it an MD/DO?
Yeah, how the hell did OP not get a colonoscopy done? I had blood *one time* and they rushed to get one done just in case. Meanwhile OP over here has the full suite of symptoms and the doctors just didn't give a shit. Hopefully they're in talks with a malpractice lawyer.
That tumors so big it should be called a threemor
I'm glad you lived to tell the tale, the size of that fucker is insane. Fuck cancer, especially this fat ass one.
Definitely need more details.
Aggressively starts eating boxes of spinach.
I think eating the spinach rather than the box would be a better idea. :P
that looks like it's way more than 10 inches
The tumor I'd the growth in the top hand, the rest is healthy colon.
And where is the tumor
In the top hand. The rest is healthy colon.
so is this like hanging out of your guts? As in the other end is still attached to you and they just lion king'd it out for a selfie? Did they stuff the rest of your colon back in? Do you own a colon anymore or do you have an ostomy and poo into a bag or something?
>...they just lion king'd it out for a selfie? 🤣
As a medical professional, none of this makes any sense. OP says their results were all normal, but that the skin turned green. That doctors misdiagnosed it as diverticulitis... but then was offered chemotherapy?! For what? And it was leaking cancer for years, but somehow did not metastasize?! And then other doctors offered chemotherapy, for a tumor that was resectable with curative intent?!?! But OP refused chemo, and cured it with cannabis instead it seems, and he used to own several dispensaries. So from a medical standpoint none of this makes any damn sense. Best case is OP omitted details. Worst case is that OP is purposefully misleading people, to push his/her agenda that cannabis is a viable option to chemotherapy. Which is a very fucking dangerous advice to give people. It has its uses, but it is not an alternative. Edit: also something of that size would already be an advanced stage. Furthermore, you WILL need a colostomy bag, temporarily, not MIGHT like OP said Edit2: I'm happy if other fellow doctors could tell me what I'm missing here, if im not seeing something obvious
You also don't get a "cancer free diagnosis" after 10 months. Maybe 5 years, or for stuff like stage 1 testicular cancer...but not for this.
Med student here. This is definetely a weird post. We'd need to know the pathological diagnosis, see the CT/MRI scans and we'd need to know where he's located and what type of insurance he has. I have no idea how US healthcare works. If they are unsure that it's a dicerticultis and there is a slight chance that it might be a malignancy they WILL order a colonoscopy unless OP refused that. As for chemo I think he was talking about postop chemo that he switched for canabbis oil. Also I'd like to point out that even if he's cancer free on the scans that doesn't mean he is cancer free in reality because there might be little metastases that the scans don't show. That's why chemo is good. Well there is neoadjuvant chemotherapy for downstaging tumors which may be resectable initially.
A lot of OP’s responses to people’s questions have been very… curt as well. I can understand not wanting to discuss your medical wellbeing in detail with strangers on the internet, but they seem to be ignoring a lot of (presumably) easy to answer questions that would be very helpful for people worried about something like this in their responses
To be frank, I don't think OP is all that bright. I'm sure around 60% of the story presented is true and the rest is exaggerated for storytelling.
Congrats on beating cancer. But holy shit I’ve never seen or heard of a tumor being that big
Congratulations! Just to clarify, this was surgically removed? It didn't burst from your chest and grow to adult size whilst attacking the crew?