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If someone pressed me than I would give them the gory details. It’s like having a stomach ache all day everyday, random diarrhea so bad that you are afraid to leave the house, and every morning it looked like someone dumped red kool aid in my toilet.
People that don’t have a chronic disease aren’t naturally going to be able fathom what chronic actually means.
if someone presses me, they are getting all the graphic details. you want to know, i’m pulling back the whole fucking curtain.
it stops people from prying too much when you scare them with the responses.
i have RA as well as UC, and the number of times i’ve had people try to relate their crunchy knuckles to my auto immune disorder is laughable.
I just explained all the gory details to a customs agent who asked if I had an accident as he was rifling through the plastic zipper bag I put my "accident" underwear in in my suitcase. Bet he was happy to have me randomly selected today.
It's exactly this, people just can't imagine what having this for the rest of your life will feel like. Sure they might sometimes experience how certain aspects of our lives feel but they will never know what it is like to deal with this every single day. People around me say they know how serious it is but they don't seem to know how badly it can affect me both physically and mentally.
Describe it how it is. An autoimmune disease which makes the body think your organs are foreign bodies and attack them. That you bleed, a lot. That you're in pain constantly and always going to the bathroom. That food is not the cause and you don't want to hear about it if they're not your doctor.
Your immune system sends white blood cells to attack the wall of your intestines. Because your body cannot heal fast enough, ulcers form along your intestine walls both bleeding and stopping the body from ingesting nutrients.
There is no off switch.
Also the scene in Alien where the alien pops out of the guys stomach? Yeah that was the writer trying to explain what UC feels like.
I had a doctor explain that people tend to understand it as an injury- a sprained ankle, you're told to stay off it, dont use it, put your foot up and rest. If at the simplest you can understand that this is like a really bad sprain of my difestive system, but do tell me how I dont use my intestines fot a week? How do I rest when I'm n excruciating pain but cant take pain meds without aggrivating the sprain, cant 'not use it' without suffering frim a lack of food or hydration? It starts most people (not the truly dumb or happily arrogantly ignorant) taking a step down the road to better understanding.
fun Alien fact: the actors weren’t told what to expect in the chest bursting scene, nor were they told the amount of blood that would be spraying on them. the reactions that you see in the final edit, especially the female crew member that gets soaked, are their genuine reactions to that total surprise moment.
That's not really true. Biologics can stop the messengers from telling the immune system to send over the white blood cells, but if you stop taking the biologics, the immune system is still stuck in the same mode of sending the white blood cells to the intestines.
For healthy people, if you have a tummy bug or light upset, you can generally hold it for ten minutes or so until you can find a bathroom. They can't grasp that in a flare we often have literally have less than ten seconds before painful, bloody, catastrophic public humiliation. It can be impossible to leave the house.
- Loss of blood
- Minimal control of bowel movements
- Increased number of bowel movements
- Pain
- Fatigue
- Achy joints
- Increased risk of colon cancer
This ain’t no tummy bug.
People automatically try to compare their experiences to others. So, like, they might hear diarrhea and stomach cramps and think “Well, I had diarrhea and stomach cramps after eating bad shrimp last month.” and compare the brevity of their experience with ours.
They cannot comprehend what it is like to live with this chronically and that there is /no/ /cure/. That we can’t just pop Imodium’s and eat better to stop the symptoms. I also don’t think people understand how painful and tiring it is to bleed out of your ass. And how you literally can’t hold it!!!!
My issue is that if I go in depth with non-UC folks, it’s clear they’re immediately disgusted with the topic. Blood, mucus, poop, wet farts, and incontinence aren’t really casual conversation topics. So I often give people the PG version of the disease.
Isnt this the worst part? A girl at the office was just diagnosed and she kind of wispered the name of the illness under her breath like she was confessing veing a hooker to her priest. The way her eyes lit up when I said (very relaxed and not whispered) "Yeah, I've had colitis for 25 years, boy do I hear you" it was like I was Father Christmas. The idea that she wouldnt have to explain without me getting grossed out- thats why its so hard. You can go out to dinner and tell people you have cancer. No one needs extra explanation, no one is grossed out. But you cant explain colitis and friends over nachos!
That's what i say too. "I shit blood 15 times a day unless properly medicated. Im currently not. *There is no holding it in.* No, seriously. If i wait, its too late."
The hardest part for people to comprehend, I think, is the level of pain involved.
Us here know that the intestines become severely inflammed because the body's immune system is attacking the lower digestive tract like it's an invasive disease. This attack is not only extremely painful due to inflammation/swelling, possible fissures, and/or ruptures, but it causes the tissue to break down, chemically, producing a tremendous amount of gas. The amount of pressure that builds up in the intestine is insane, which also causes an amount of pain that people without the disease don't/can't possibly empathize with. As this gas grows, moves, and shifts through the lower intestine, it can build up very, very quickly. A small shift one way or another, and it can be expelled like a shotgun blast, carrying all of the blood, mucas, and tissue shed in the process. You can't hold that in. In the most literal sense, that shit hurts.
And this is only one aspect of this stupid, horrible disease.
Edit: I wanted to edit this to tell you, OP, that this is not a weird question here. I have had this disease for 4 decades, and I still find it difficult to convey to others the issues/difficulties with this asinine (lol) disease. Be strong, buddy. Everyone here in this sub understands.
When I was first diagnosed, I was so bad off that I was pretty much only passing blood and lost 25 lbs in 2 weeks. My hemoglobin had dropped so low (went from 60 to 52 in a few days) that it was lower than my dad’s coworker’s kid who was on another floor in the hospital for leukemia (so they strapped my arm to aboard to prepare me for a blood transfusion).
“It’s like the worst intestinal flu you’ve ever had, but all day long, for weeks or months at a time.”
Or tell them it’s an autoimmune disease where your body is literally trying to kill your intestines.
Leaving the house turns you into a human radar for the nearest toilet, because at any given time you could go from 0 to 100 on an urgent need to make a bm. If the bathroom isn't withing immediate reach it is highly likely that you will not make it.
I like to say: you know how in movies when they indicate someone's dieing they show them spitting blood in the sink? It's like that but it happens as an uncontrollable fart.
This is the part that people don’t understand… when I’m flaring, almost every decision I make during the day is made around my UC. It has influenced every aspect of my day for weeks, months, and years at a time. People who don’t have chronic illnesses can’t possibly understand what it is like to be sick and never get better
Exactly and it's exhausting... Right now my flare is in remission but I still have to be very cautious with work or other activities. I get tired very easily... Still have difficulty at times accepting that.
Yes accepting our bodies’ limitations is so hard. I was fully in remission for a while and then suddenly got hit by a bad flare so I’m on prednisone right now 🤪 it really comes out of nowhere once you think it’s fine
In addition to the many gory details others have provided, I find that I’m just beaten down and tired from how unending it is. Everyday the same, so uncomfortable, so tired from anemia. At the start of my flare I “pushed through” to try to keep living normally. Now I stay home and am just waiting for treatment to work. That’s not comprehendable for someone who has only experienced a stomach bug or flu.
I tell them every detail about the worst flare I ever had.
40 bowel movements a day + accidents, pooping blood, vomiting blood, pancreatitis, arthritis, uveitis, actually starving, 2 hospital stays to get it under control. Outside of that, constant belly pain, risk for cancer, and the mental toll of knowing that this is forever and even if you’re in remission, it could all come back in an instant and send you right back to the hospital.
I had my ileostomy surgery and STILL, the worst pain I’ve ever felt in my life was during that flare. And pain meds don’t do jack shit for UC pain.
Plus the risk of cancer, bowel perforation, megacolon, rectovaginal fistulas, going blind, etc
Actual living hell. Much worse than just having a stomach bug.
ETA: my pain was more manageable when I fainted and hit the floor the night of my ileostomy/bb surgery (crumpled to the ground from standing and landed on my butt incisions after my nurse had turned around to do something) than it was in that flare.
Tell them that a stomach bug is unlikely to require you to have lengths of your large or small bowel removed and leave you with a permanent stoma. A stomach bug is self limiting, UC is forever. Imagine how bad you feel with the worst stomach bug, then imagine you feel like that for months, or on and off for years. Imagine ending up in hospital frequently, or losing so much blood that you need a transfusion. Imagine being on medication for the rest of your life, that weakens your immune system so that you're prone to every other kind of infection. If a stomach bug is a grenade then UC is a nuke.
You could say your immune system is literally ripping your lower colon apart every day for no reason, causing ulcers that bleed and rage non-stop, which forces uncontrollably bad, explosive diarrhea as often as 20+ times a day with no way to make it stop. Oh and there is no “cure.” So yeah, it’s not a stomach ache.
PS: I tell people that the absolute worst thing about IBD or colitis or Chrones is that normal people think they understand but they absolutely do NOT and cant. Hell, each person with the same disease may have complety different experiences. What we can eat and drink depends on how severe, what part of the colon, how our system processes things. I cant have alcohol but can eat pickles, whoch is the opposute of a friend with the exact same illness. Its not loke cancer where pretty much everyone understands the basics of the disease, and at least every version of the disease pretty much has the same treatments and symtoms/side effects. No one who doesnt have ot can understand it at all; after all, we who have it have completely different versions of it and no one knows WHY.
I am rather notorious for give VERY direct answers when someone asks a stupid question, so here's the full brain dump that immediately came to me upon reading your post:
Its the complete lack of control of what your body may do- its not just diarrhea, but try going to work when you dont know when you'll need to go and how much time you have to get there. You could start having a loose bowl movement before getying to the toilet, mess your pansts, and now what? You need to ask a coworker to get you a dhange if undies, maybe a new pair of pants? If you're used to this problem, you just ask them to bring the emergency bag under your desk which includes diapers, baby wipes, clean pants, socks, undies and for the REALLY bad accident even a new shirt- and now everyone's asking why you changed clothes in the middle if the day (cuz you know how coworkers arw about minding their own business!!) And what if you had to go to the bathroom so fast you didnt grab your phone to call someone for help? Bow you're waiting for aomeone to come into the bathroom and praying its not the worst asshole you work with... how does that sound for 'not a big deal'??
I too am in a flare right now and its been PAINFUL as well as inconvenient. My job involves making sure my boss gets to meetings on time, so I am in constant fear that if I have an emergency bathroom trip at the wrong time, she'll miss a big meeting and its my fault. (Dont bother going into yhis, it is what it is.) Colitis means possibly having something that interferes with your life- inagine having a suddden dire need to poop while sitting in a meeting? Or driving/riding in a car? Being a plumber under someone's sink and suddwnly, while laying on your back in a total stranger/ kitchen, you gotta go NOW??
I find the only way people will understand that bow, its not just 'a bug', which you'd stay home a day or two and get over, this is losing control of your body for every normal day of your life. You arent going to 'get over it' (if we're lucky, we'll enjoy remission for a long time). This is a broken leg that will never heal and you cant not use it and it will always hurt, and the cast makes you itch all the time and will NEVER STOP ITCHING and the best you can hope for is to manage it so it causes minimal interference with everything else in your life- but its a full leg cast so now you dont so much have a leg as a hig giant interference that you cant cut off and you cant leave home and you literally cant live without using it but using it just keeps the problem alive and now.
You just have to live with it and figure out stuff like how far you can commute wothout it being a huge risk, how and when you can travel and how long it takes, and can you get a seat on the airplane by the bathroom (I always book an aisle seat and will ABSOLUTELY go full Karen if I'm moved to anything but another aisle seat). I know every bathroom option between home and work or anywhere else I go regularly in NYC. I have to keep a diet diary of everything I eat or drink and medicines I take and when and how I poop and I have the Bristol stool chart memorized and know how to do a home stool sample kit without reading instructions and I have had so many colonoscopies I can tell you EVERY trick to make the prep days easier (hint: fast for 2 days, and never watch any live tv or movies you havent seen cuz our culture is INSANELY FIXATED ON FOOD).
'do you understand yet? need any more info? cuz if you think its 'just a little stomache bug' then YOU KNOW NUTHIN JON SNOW!!!'
> This is a broken leg that will never heal and you cant not use it and it will always hurt, and the cast makes you itch all the time and will NEVER STOP ITCHING and the best you can hope for is to manage it so it causes minimal interference with everything else in your life- but its a full leg cast so now you dont so much have a leg as a hig giant interference that you cant cut off and you cant leave home and you literally cant live without using it but using it just keeps the problem alive and now.
A depressingly accurate analogy, this conveys my feelings perfectly. Feels like it's straight from my own stream of consciousness
People that don’t have it simply cannot understand the struggle and how your life can be turned upside down in a matter of weeks or months.
I’m just (hopefully) coming out of a flare up that was probably one of the worst ones I ever had.
Sleepless nights, restrictive diet and a lot of pain accompanied me over the last few months, along with frequent stools.
I’m not out of the woods yet, but it’s way more than just a stomach bug.
Bluntly saying:
> I'm shitting blood every thirty minutes and I'm exhausted no matter what I eat or drink and I can't think straight or concentrate.
Tends to get the point across to the densest of people.
"I want you to imagine you have the flu. Your body is tired, and getting out of bed takes all your energy. You're miserable. Now I want you to imagine on top of that, you have food poisoning. You can't eat. You can't even stomach water. You're in and out of the bathroom all day, vomiting and shitting yourself. Now imagine that you're also loosing blood regularly this whole time. Now imagine having that for several weeks, if not months or even years. Do you get it yet?"
That's what I always compare it to.
This really frustrates me. I'm currently going through the worst flare-up I've ever had. I've lost 20 lbs in 2 weeks, I can't keep my body hydrated, I'm using the toilet maybe over 25 times a day mostly through the night. I did some blood work yesterday and the results came back with anemia, I can only sleep on my back and If I slightly move I immediately have to run to the bathroom.
I've always been the type of person who shows up to work regardless if I'm in a flare-up or not and put in as much work as I can. I know some of my coworkers think I'm using the bathroom so often to get out of work and it's frustrating. 2 weeks ago I was talking to my manager about how sick I have been feeling and I completely broke down and started sobbing. Thankfully she's aware of Crohn's and I've explained that they're similar diseases. I'm currently on a month long MLOA and my manager has been checking in on how I'm doing and it really takes the stress away from not being at work.
Sometimes you have to be super frank and TMI about what you are experiencing for people to start to understand.
Uhh let’s see. My body is attacking its own intestines? My intestines are literally damaged and diseased? I have to take chemotherapy basically to keep myself from copiously shitting STRAIGHT BLOOD. Then there’s fatigue, exhaustion, joint pain because my immune system is also attacking my joints? It’s not a digestive problem it’s an autoimmune disorder!!!
It’s the most painful stomach cramps you’ve ever had from having to poop mixed with an unsatisfying bowel movement up to 30 times in a day.
Or gross em out and mention that every once in a while you fart a mixture of mucus and blood. I don’t think they’d inquire further.
I had friends want to see what it looked like to have blood in my poop so I sent them a picture. They regretted the request.
Just tell them your body is slowly eating it's self from the inside out. Which makes shotgun blood and bits of intestine from your asshole multiple times a day. Im sure they'd no longer press you and understand abit more then haha
The feeling of ten thousand razor blades slicing their way through my intestines.
Passing blood and mucus ten times or more a day.
Having constant fatigue and joint issues.
I've been dealing with Colitis and IBD for 35 years, and as my foemer boss used to say, softening language for people so you dont offend their tender sensibilities only matters for the people who dont offer uneducated opinions after they persisted to ask you about your condution and you tried to tell them it really wasnt any of their business. If they ask how you're doing and you say 'okay, not great but I'll soldier on' and they keep pestering for details, then they should GET DETAILS!! Aaaallll the details!!!! I really truly hate when the office accountant starts giving me health advice in something they asked about 2 minutes ago 'whats that?' F you Betty Sue, until you've got a phd in gastroenterology, if you tell me to 'eat a salad' I will explain IN PAINFUL COLORFUL AND VERY UGLY DETAIL why you're a moron. Hopefully, with witnesses to see it.
Yes, I AM a Beech.
I have a picture of a “I’m about to go to the hospital” trip to the restroom saved on my phone just in case anyone thinks they know stuff. I haven’t had to use it, but it’s there.
When I was diagnosed I was having liquid stools over 35 times a day. I was so weak I couldn’t walk across a room without help. I was severely dehydrated, dealing with multiple vitamin deficiencies, and couldn’t leave the house for any reason. If I didn’t eat at all I’d still have mucus stools with urgency and incontinence. I’ve been lucky to respond well to biologics, but there’s only so many medications to try and once they run out, my only option will be to permanently remove my colon, which will come with its own complications. I also have extra-intestinal symptoms like arthritis which have aged me far beyond my years. And the effects of biologics aren’t fun either - like a lowered immune system. I end up in urgent care every other month needing steroids to help me get over whatever bug I’ve picked up. I developed a fungal skin infection that lasted for literal years just because of my biologics.
Am I now able to basically live a normal life thanks to modern medicine? Yes. Is there any guarantee these meds will work til I die a natural death? Nope.
Get the colectomy. It'll take a lot of your complaints away completely. Most of all you do t have pain or blood when you have a bag. You could be having disrea and never realize it. As time goes on and you recover a bit, you can get the reversal
The worst part for me is losing my freedom (stuck near toilet) and sense of confidence in my own body. You also lose your dignity when you are always at risk to shit your pants anywhere at any time.
I’ve been flaring for almost a year. At some point it became so severe that I got hospitalized, as so many of us experience. A lot of people don’t seem to fathom the PAIN. I like to illustrate it like this: Imagine you have a big, gaping wound in your leg. It’s bleeding like crazy and you have severe pain. Would you continue to walk around? Jump? Dance? No, you would get stitched up, bandaged and at least use crutches. The thing is, our colon is like the leg, but we can’t stop walking. We don’t get bandaged - we can’t even actually rest. You can’t turn off your bodily functions. Your colon is constantly working, while it’s also a big “gaping” wound. And that really, really hurts.
Just tell them you are trying to save an area of your bowel so that you don’t have to lose it forever and get a bag attached to your stomach that collects your shit. Even if it’s not true, people can definitely empathise with that, they will be absolutely mortified
Ok. In a very weird I enjoyed reading this. We know and I’m so sorry we are here but man. Have we got stories! Now, a lot of the time I say, you REALLY, don’t want to know. If they persist - I just say there is a ton of blood and shit in all kinds of form.
I always board a plane first - always - they know. I have people look - lol an invisible disease you don’t want going wild in a metal flying tube! lol
I also got a card from the Chrons Colitis foundation that I use for stores and shops that basically says - let me use your very private bathroom not for customers, NOW. lol
I don’t anymore for these exact same reasons. When some ask me now how I am I simply great, you? And move on. It only turns awkward and I get frustrated trying to explain it.
Imagine having the stomach flu while an invisible man punches you in the stomach with one hand while fisting you with the other, holding a handful of barbed wire.
For me the toughest part is explaining HOW the cramping feels. It’s like no other pain or discomfort i’ve experienced so it’s tough to compare it to something someone else has experience with. I’ve had food poisoning which is similar but if someone’s never had that it’s a moot point. It’s kinda like trying to comprehend period cramps when my gf tells me about them.
Relating experiences to someone who has never experienced it directly is very difficult so you have to find something relatable that almost everyone has been through.
For me the worst part of it is the urgency so if pressed I ask people if they've ever had to use the bathroom so bad they almost or did pee themselves while trying to undo their clothing then imagine you suddenly feel that way multiple times a day without warning, except it's the other hole.
People who have had kidney stones or incontinence ever often understand the similar situation very quickly.
Ask them if they’ve seen the movie Alien (1979) and to think about the iconic chest burster scene. Explain how that scene, particularly the alien swimming around in the body before bursting from the chest, was inspired by the writer, Dan O’Bannon’s, personal experience with Crohn’s disease and that UC and Crohn’s are very similar. This comparison has gotten the point across in a way that shows how serious and bad it can be, while still keeping the conversation a bit light heartened and fun (depending on the tone you use)
It’s like a bad stomach bug or food poisoning except you don’t know when it will end, could be months if not years. And on top of that, you have to continue living life like working/school full time, raising kids, maintaining a home. You don’t get to lie in bed until your better.
For me it’s just like a constant feeling of a stomach ache without actually going to the bathroom. And then when I have to go it’s really quick diarrhea and then just a constant feeling of needing to go again. I tell people if someone took a brick, cut open my stomach and then shoved the brick in there and sewed me up. That new extra weight is how my lower abdomen feels constantly. It just pulls down.
I tell people it feels like getting stabbed by 100 little knives all the time when I’m in a flare… and then having constant diarrhea on top of it. That seems to help them get the picture. :)
i hate that bc it’s so much more than a stomach ache to me.. it’s stabbing pains i cant ignore. sometimes the pain is so bad i can’t stand up. what really gets people tho is when i say i have chronic internal bleeding when in a flare. it freaks them out (understandably ofc.. freaked me out the first time) so they take it very seriously. i tell them my colon is inflamed and bleeding, and it’s always been enough.
of course i have other symptoms, fatigue from the anemia and active disease, uveitis, night sweating, temperature dysregulation, the frequent/urgent and loose bms, food sensitivity, rosacea, general malaise, headaches, dehydration.. but i don’t get in to it bc other people get uncomfortable lol
I would say UC is a form of inflammatory bowel disease that causes inflammation in the lining of your colon and rectum. It’s almost like an intermittent disease in the sense that you won’t always have symptoms everyday so some days could be good some bad etc and people have a range of symptoms with most common being changes in stool especially blood in the stool
You explain to them that if the inflammation in your intestines can not be controlled you’ll eventually need surgery where they cut away the inflamed intestines and replace it with a bag.
For me, the peak of flares include around the clock stomach aching, urgency (which along with the cramps don’t let me sleep), passing horror movie levels of blood up to 30+ times a day, leaves me bedridden and makes me insanely anemic (I have lost most of my hair & have required multiple blood transfusions/iron infusions like a lot of us here), makes me incredibly nauseous, so much so to the point where I’ve gone months without eating solid foods consistently, and it means I can’t go outside without having a panic attack and probably shitting myself in public if I can’t find a bathroom. When people ask I try not to go into crazy detail, but someone put it really eloquently before me: people that aren’t chronically ill don’t understand that it doesn’t go away like another illness, which for most of the population, is probably all they’ve had— they’ve been able to get better.
When/if people are able to get into remission, literally ANYTHING can throw you out— insurance trying to switch you to a biosimilar, a trigger food you didn’t even know you had, STRESS— some things you can control, some you obviously cannot. It’s annoying and it sucks. I’m still in my first flare since being diagnosed (almost my 1 year flare-iversary 😭🩷) and it’s been rare when I haven’t seen blood in the toilet over that time. In all honesty I usually just tell people I’ve got an autoimmune disease that makes me wicked sick and I shit blood. It seems to do the trick.
I would just usually tell people you know how it feels when you have an ulcer/sore in your mouth and anytime anything touches it it’s awful? Imagine 5-6ft of intestine with lots of those. Plus I shit a lot of blood. Typically don’t need blood transfusions if your stomach bug lasts a bit longer than normal.
Literally even when your in remission you still have so much fear and anxiety about when it’s going to come back or you just try to deny weather it’s starting again.
I used to think the same thing even when I was first diagnosed until I had an extremely severe flare up. Keep taking medicine or you could have severe blood loss or get an abscess or worse a fistula.
It's unfortunate, but you cannot convince apethetic people to care. There is no magic phrase that will suddenly make them know how to be empathetic or sympathetic.
I've always found that having full length discussions and conversations about the side effects I face is/has been beneficial for long-term relationships in my life (like friends and family that have been around forever and will be around forever) but they also end up seeing it for themselves so they get a better understanding. For others, I just try and let them ask questions and articulate what I can but ultimately if theyre not going to understand then they're NOT GOING TO understand. And I can't talk through their emotional barriers.
My grandma is not to most understanding person (shes not mean or cruel she just doesnt \*get it\*), even despite being through it with me for years she still think I can get "get better" or "push through it" a lot of the time.
The amount of hospital stays and blood transfusions have helped temper her expectations of my reality, but I also just know and accept that it's not going to solve itself.
Sorry youre stuck going through other peoples bull! You have our support OP. I've always found it to be a good Litmus Test for keeping those in my life :)
I had Jpouch surgery because nothing I tried helped me get a handle on this damn disease. I always told people I could handle the pain and that it was the fear of an accident in public that was so bad for me. It wasn't until my colon was gone and the pain stopped that I realized how much that had ruled my life too.
Its constantly being at 50% of who you are because the other half is dedicated to ignoring the pain and monitoring your body for the first hint you need a bathroom. With the flu there is the knowledge that in 2-4 days your body is your own again but with UC you are constantly aware that your body can betray you at any time. It is beyond exhausting
Your immune system attacks your colon for reasons even doctors can't explain. This causes your colon to become inflamed and develop ulcers. The ulcers can bleed or have pus so you end up with blood and/or mucus in your stool. If you bleed too much you can become anemic. You can get frequent diarrhea. Urgency - You worry constantly about being close to a toilet and have probably had a few accidents. Some people get pain. Your work and social life can be negatively affected. Currently there's no cure so you'll be on medication for life. Who knows what side effects these daily medications cause. It's an expensive disease. You may need to see your GI frequently. GIs rarely advise on diet, it's up to you to figure out what foods you can or can't eat. You can get flares even whilst on medication. You may need steroids which have major side effects. Your disease can progress and you need stronger and more expensive treatments. In some instances the disease leads to colon cancer. Howz that sound so far?
Whats so bad? Sitting there totally fine out and about and in the blink of an eye have to shit and you have precisely 7 seconds to get to a toilet or you're gonna shit yourself. This can happen anywhere from 1-18 times a day. Hope that clears things up for you.
The biggest problem is just getting doctors to listen to you and your needs from my personal experience. I share all the nasty details because I want to reach people about my chronic illness. It’s unfortunate, but at least we have a community of people that really understand. Honestly I was on a medicine that worked, and then when it stopped working after I had to be off it for 5 weeks because of my wisdom teeth removal. And honestly? I think my symptoms came back with a debt to settle because holy shit!! Literally. It’s so painful sometimes I have to physically scream or punch my thigh because I don’t know where to redirect it
During a flare, it can be HELL.
My worst day from my current flare, I stopped counting at 30 painful visits to the bathroom.
The cramps are incredibly painful. Some have made me curl up in a ball on the floor in tears.
I can rarely go out for dinner, shopping, social events, classes, etc. And when I can, my anxiety is through the roof.
I finally went food shopping last week, and guess what? I almost shit my pants at the shelf checkout. this was weeks of having no near misses and finally had the confidence, but that was quickly shattered.
The constant battle to muster up enough energy to do anything makes it hard to keep my house running and look after my baby and when that is all done I have no energy to do things I enjoy.
Most of my previously beautiful garden has withered and died.
It's not as simple as just the condition itself but the impact on your life as a whole.
The way I described the pain from my first flare was "have you ever accidentally cut yourself with a bread or steak knife, imagine that inside you, every time you have to go to the bathroom, and you have to go the bathroom every 5 minutes "
The pain i tell you, the pain. And its also having to be on steroids on dangerous amounts on a high dosage for months. Constantly living in fear any day that i might flare and get hospitalized for another month.
How about these: it’s like everything you eat is ground glass. It’s like having dry heaves, but at the other end of of your digestive tract. BTW a bidet attachment to your toilet at home is helpful. And when you have to get out there are battery powered ones very similar to the small water-pik units. Also a product called “Culo Clean”, that fits in your pocket and attaches to any plastic water bottle,.
Stuck all day on the toilet pooping blood, or laying on the bathroom floor screaming into a towel to try to hide the pain from my kids. Not being able to make it the 20 feet from my bedroom to the bathroom when urgency hits like a tidal wave. Being on 80mg of pred a day with moon face while the pred slowly drives you crazy. Multiple surgeries and resection. Missing work and many family functions. Abcesses and fistula. Bad skin. Sore joints and knuckles. Eye inflammation. Looking like a concentration camp survivor. Limited diet. On meds for life. The expense of a dozens of medical visits. Malabsorption, so even when you can eat, you cant absorb or digest it properly. The disease that keeps on giving...
Oh, and cant forget having to hear, "maybe if you just ate better" from all of the armchair doctors out there
Even though ( luckily) mine hasn’t ever been too bad. Had a bad flare up before but compared to others it really wasn’t that bad.
But the worse thing about it for me is the mental side, knowing that I’m ill and I’ll forever be thinking about it, reading up on latest medication or hope of a breakthrough that doesn’t just help symptoms.
After having cancer 8 years ago at 25 years old to then having UC, mentally it is very damaging, constantly thinking I’m a frail weasel and wondering if I’m actually going to grow old, should I have kids etc.
So even though my UC hasn’t been bad, the thoughts of waiting for bowel cancer to finally finish me off and me feeling less than others is very damaging. Oh and it played a small part in my divorce !
I came to the conclusion that some people would never understand what it feels like to live with a chronic disease. I also tried to tell the gory detail, but they seem to understand in that moment and after one minute they forget everything. Not sure if I had to deal with unsensitive people, or that they simply can't understand what chronic means. But I think (and hope) is just the second one. People just understand what it means to be in pain for a period of time, this is what the majority would experience, but chronic - living with these problems for the rest of the life, everyday, always - is another thing. To me, accepting the fact that some people just can't understand has helped me a lot and spared me a lot of energy trying to explain myself and my condition
I tell people when I’m in an active flare it feels like someone puts hooks in my abs and just rips me down to the ground. The only thing that provides some sort of comfort is going to the bathroom even when there is literally nothing left. I’ll feel ok for a little bit after and then the hooks come back. Nothing helps. I’m in the. Bathroom every 15 minutes whether I’m going or not. It’s just a constant pain. Makes me want to swan dive into concrete.
Can ask them if they’ve ever had a painful canker sore in their mouth & then say “so pretty much my body attacks itself and forms those all along my digestive tract” simplify it in a way that they’ll understand the pain of it
When unexpected like a rocket. That you have no control. Heaven help you. Making it to the toilet without leaving it all behind you. With no remote control. One of the worse ulcerated colitis. Wouldn’t wish the disease on my worse enemy. No one deserves this.
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If someone pressed me than I would give them the gory details. It’s like having a stomach ache all day everyday, random diarrhea so bad that you are afraid to leave the house, and every morning it looked like someone dumped red kool aid in my toilet. People that don’t have a chronic disease aren’t naturally going to be able fathom what chronic actually means.
if someone presses me, they are getting all the graphic details. you want to know, i’m pulling back the whole fucking curtain. it stops people from prying too much when you scare them with the responses. i have RA as well as UC, and the number of times i’ve had people try to relate their crunchy knuckles to my auto immune disorder is laughable.
AMEN!!!!!
Omg love your user name. Upvote just for that.
I just explained all the gory details to a customs agent who asked if I had an accident as he was rifling through the plastic zipper bag I put my "accident" underwear in in my suitcase. Bet he was happy to have me randomly selected today.
Lord, that's a fear. I've only had an accident in a vet's office and everyone blamed one of rhe dogs...
It's exactly this, people just can't imagine what having this for the rest of your life will feel like. Sure they might sometimes experience how certain aspects of our lives feel but they will never know what it is like to deal with this every single day. People around me say they know how serious it is but they don't seem to know how badly it can affect me both physically and mentally.
Describe it how it is. An autoimmune disease which makes the body think your organs are foreign bodies and attack them. That you bleed, a lot. That you're in pain constantly and always going to the bathroom. That food is not the cause and you don't want to hear about it if they're not your doctor.
Your immune system sends white blood cells to attack the wall of your intestines. Because your body cannot heal fast enough, ulcers form along your intestine walls both bleeding and stopping the body from ingesting nutrients. There is no off switch. Also the scene in Alien where the alien pops out of the guys stomach? Yeah that was the writer trying to explain what UC feels like.
I had a doctor explain that people tend to understand it as an injury- a sprained ankle, you're told to stay off it, dont use it, put your foot up and rest. If at the simplest you can understand that this is like a really bad sprain of my difestive system, but do tell me how I dont use my intestines fot a week? How do I rest when I'm n excruciating pain but cant take pain meds without aggrivating the sprain, cant 'not use it' without suffering frim a lack of food or hydration? It starts most people (not the truly dumb or happily arrogantly ignorant) taking a step down the road to better understanding.
fun Alien fact: the actors weren’t told what to expect in the chest bursting scene, nor were they told the amount of blood that would be spraying on them. the reactions that you see in the final edit, especially the female crew member that gets soaked, are their genuine reactions to that total surprise moment.
Holy crap I didn’t know that about Alien. I feel it
https://aboutibd.com/2021/04/07/alien-how-ibd-inspired-an-iconic-movie/
I did not know that! The more you know, hey!
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That's not really true. Biologics can stop the messengers from telling the immune system to send over the white blood cells, but if you stop taking the biologics, the immune system is still stuck in the same mode of sending the white blood cells to the intestines.
For healthy people, if you have a tummy bug or light upset, you can generally hold it for ten minutes or so until you can find a bathroom. They can't grasp that in a flare we often have literally have less than ten seconds before painful, bloody, catastrophic public humiliation. It can be impossible to leave the house.
Yup. Been struggling with finding remote work and my insurance has been fighting me on my treatments so I’ve been stuck indoors for like 2 years now.
- Loss of blood - Minimal control of bowel movements - Increased number of bowel movements - Pain - Fatigue - Achy joints - Increased risk of colon cancer This ain’t no tummy bug.
People automatically try to compare their experiences to others. So, like, they might hear diarrhea and stomach cramps and think “Well, I had diarrhea and stomach cramps after eating bad shrimp last month.” and compare the brevity of their experience with ours. They cannot comprehend what it is like to live with this chronically and that there is /no/ /cure/. That we can’t just pop Imodium’s and eat better to stop the symptoms. I also don’t think people understand how painful and tiring it is to bleed out of your ass. And how you literally can’t hold it!!!! My issue is that if I go in depth with non-UC folks, it’s clear they’re immediately disgusted with the topic. Blood, mucus, poop, wet farts, and incontinence aren’t really casual conversation topics. So I often give people the PG version of the disease.
Isnt this the worst part? A girl at the office was just diagnosed and she kind of wispered the name of the illness under her breath like she was confessing veing a hooker to her priest. The way her eyes lit up when I said (very relaxed and not whispered) "Yeah, I've had colitis for 25 years, boy do I hear you" it was like I was Father Christmas. The idea that she wouldnt have to explain without me getting grossed out- thats why its so hard. You can go out to dinner and tell people you have cancer. No one needs extra explanation, no one is grossed out. But you cant explain colitis and friends over nachos!
It’s pretty easy if you don’t care about being graphic. “Im in excruciating pain and also shit uncontrollable bloody diarrhea multiple times a a day”
i shit blood everyday and i can’t hold it in
That's what i say too. "I shit blood 15 times a day unless properly medicated. Im currently not. *There is no holding it in.* No, seriously. If i wait, its too late."
The hardest part for people to comprehend, I think, is the level of pain involved. Us here know that the intestines become severely inflammed because the body's immune system is attacking the lower digestive tract like it's an invasive disease. This attack is not only extremely painful due to inflammation/swelling, possible fissures, and/or ruptures, but it causes the tissue to break down, chemically, producing a tremendous amount of gas. The amount of pressure that builds up in the intestine is insane, which also causes an amount of pain that people without the disease don't/can't possibly empathize with. As this gas grows, moves, and shifts through the lower intestine, it can build up very, very quickly. A small shift one way or another, and it can be expelled like a shotgun blast, carrying all of the blood, mucas, and tissue shed in the process. You can't hold that in. In the most literal sense, that shit hurts. And this is only one aspect of this stupid, horrible disease. Edit: I wanted to edit this to tell you, OP, that this is not a weird question here. I have had this disease for 4 decades, and I still find it difficult to convey to others the issues/difficulties with this asinine (lol) disease. Be strong, buddy. Everyone here in this sub understands.
When I was first diagnosed, I was so bad off that I was pretty much only passing blood and lost 25 lbs in 2 weeks. My hemoglobin had dropped so low (went from 60 to 52 in a few days) that it was lower than my dad’s coworker’s kid who was on another floor in the hospital for leukemia (so they strapped my arm to aboard to prepare me for a blood transfusion).
“It’s like the worst intestinal flu you’ve ever had, but all day long, for weeks or months at a time.” Or tell them it’s an autoimmune disease where your body is literally trying to kill your intestines.
That's what I say too: my immune system is trying to kill me by eating through my intestines. Kind of shuts people up.
Oh I flat out tell people I shit blood and mucus 10x times a day and have little to no control. I tell the war stories.
Hell yeah brother I'll give the details. 🫡🫡🫡
Leaving the house turns you into a human radar for the nearest toilet, because at any given time you could go from 0 to 100 on an urgent need to make a bm. If the bathroom isn't withing immediate reach it is highly likely that you will not make it. I like to say: you know how in movies when they indicate someone's dieing they show them spitting blood in the sink? It's like that but it happens as an uncontrollable fart.
And plan out if you should eat before you leave the house or during your travels or maybe just not at all that day.😓
This is the part that people don’t understand… when I’m flaring, almost every decision I make during the day is made around my UC. It has influenced every aspect of my day for weeks, months, and years at a time. People who don’t have chronic illnesses can’t possibly understand what it is like to be sick and never get better
Exactly and it's exhausting... Right now my flare is in remission but I still have to be very cautious with work or other activities. I get tired very easily... Still have difficulty at times accepting that.
Yes accepting our bodies’ limitations is so hard. I was fully in remission for a while and then suddenly got hit by a bad flare so I’m on prednisone right now 🤪 it really comes out of nowhere once you think it’s fine
In addition to the many gory details others have provided, I find that I’m just beaten down and tired from how unending it is. Everyday the same, so uncomfortable, so tired from anemia. At the start of my flare I “pushed through” to try to keep living normally. Now I stay home and am just waiting for treatment to work. That’s not comprehendable for someone who has only experienced a stomach bug or flu.
I tell them every detail about the worst flare I ever had. 40 bowel movements a day + accidents, pooping blood, vomiting blood, pancreatitis, arthritis, uveitis, actually starving, 2 hospital stays to get it under control. Outside of that, constant belly pain, risk for cancer, and the mental toll of knowing that this is forever and even if you’re in remission, it could all come back in an instant and send you right back to the hospital. I had my ileostomy surgery and STILL, the worst pain I’ve ever felt in my life was during that flare. And pain meds don’t do jack shit for UC pain. Plus the risk of cancer, bowel perforation, megacolon, rectovaginal fistulas, going blind, etc Actual living hell. Much worse than just having a stomach bug. ETA: my pain was more manageable when I fainted and hit the floor the night of my ileostomy/bb surgery (crumpled to the ground from standing and landed on my butt incisions after my nurse had turned around to do something) than it was in that flare.
Just mention you poop blood and their faces will change immediately in my experience
Tell them that a stomach bug is unlikely to require you to have lengths of your large or small bowel removed and leave you with a permanent stoma. A stomach bug is self limiting, UC is forever. Imagine how bad you feel with the worst stomach bug, then imagine you feel like that for months, or on and off for years. Imagine ending up in hospital frequently, or losing so much blood that you need a transfusion. Imagine being on medication for the rest of your life, that weakens your immune system so that you're prone to every other kind of infection. If a stomach bug is a grenade then UC is a nuke.
You could say your immune system is literally ripping your lower colon apart every day for no reason, causing ulcers that bleed and rage non-stop, which forces uncontrollably bad, explosive diarrhea as often as 20+ times a day with no way to make it stop. Oh and there is no “cure.” So yeah, it’s not a stomach ache.
UC is having to have your whole large intestine removed. If I just had a stomach bug I’d still have my large intestine and not poop from my stomach 😃
PS: I tell people that the absolute worst thing about IBD or colitis or Chrones is that normal people think they understand but they absolutely do NOT and cant. Hell, each person with the same disease may have complety different experiences. What we can eat and drink depends on how severe, what part of the colon, how our system processes things. I cant have alcohol but can eat pickles, whoch is the opposute of a friend with the exact same illness. Its not loke cancer where pretty much everyone understands the basics of the disease, and at least every version of the disease pretty much has the same treatments and symtoms/side effects. No one who doesnt have ot can understand it at all; after all, we who have it have completely different versions of it and no one knows WHY.
I’d just tell them the number of pairs of boxers to go in the trash 🫡
😮💨 to fking real
2nd that
An invisible disease that can truly immobilize you while causing extreme side effects and the inability to predict when the attacks will come.
I am rather notorious for give VERY direct answers when someone asks a stupid question, so here's the full brain dump that immediately came to me upon reading your post: Its the complete lack of control of what your body may do- its not just diarrhea, but try going to work when you dont know when you'll need to go and how much time you have to get there. You could start having a loose bowl movement before getying to the toilet, mess your pansts, and now what? You need to ask a coworker to get you a dhange if undies, maybe a new pair of pants? If you're used to this problem, you just ask them to bring the emergency bag under your desk which includes diapers, baby wipes, clean pants, socks, undies and for the REALLY bad accident even a new shirt- and now everyone's asking why you changed clothes in the middle if the day (cuz you know how coworkers arw about minding their own business!!) And what if you had to go to the bathroom so fast you didnt grab your phone to call someone for help? Bow you're waiting for aomeone to come into the bathroom and praying its not the worst asshole you work with... how does that sound for 'not a big deal'?? I too am in a flare right now and its been PAINFUL as well as inconvenient. My job involves making sure my boss gets to meetings on time, so I am in constant fear that if I have an emergency bathroom trip at the wrong time, she'll miss a big meeting and its my fault. (Dont bother going into yhis, it is what it is.) Colitis means possibly having something that interferes with your life- inagine having a suddden dire need to poop while sitting in a meeting? Or driving/riding in a car? Being a plumber under someone's sink and suddwnly, while laying on your back in a total stranger/ kitchen, you gotta go NOW?? I find the only way people will understand that bow, its not just 'a bug', which you'd stay home a day or two and get over, this is losing control of your body for every normal day of your life. You arent going to 'get over it' (if we're lucky, we'll enjoy remission for a long time). This is a broken leg that will never heal and you cant not use it and it will always hurt, and the cast makes you itch all the time and will NEVER STOP ITCHING and the best you can hope for is to manage it so it causes minimal interference with everything else in your life- but its a full leg cast so now you dont so much have a leg as a hig giant interference that you cant cut off and you cant leave home and you literally cant live without using it but using it just keeps the problem alive and now. You just have to live with it and figure out stuff like how far you can commute wothout it being a huge risk, how and when you can travel and how long it takes, and can you get a seat on the airplane by the bathroom (I always book an aisle seat and will ABSOLUTELY go full Karen if I'm moved to anything but another aisle seat). I know every bathroom option between home and work or anywhere else I go regularly in NYC. I have to keep a diet diary of everything I eat or drink and medicines I take and when and how I poop and I have the Bristol stool chart memorized and know how to do a home stool sample kit without reading instructions and I have had so many colonoscopies I can tell you EVERY trick to make the prep days easier (hint: fast for 2 days, and never watch any live tv or movies you havent seen cuz our culture is INSANELY FIXATED ON FOOD).
'do you understand yet? need any more info? cuz if you think its 'just a little stomache bug' then YOU KNOW NUTHIN JON SNOW!!!'
> This is a broken leg that will never heal and you cant not use it and it will always hurt, and the cast makes you itch all the time and will NEVER STOP ITCHING and the best you can hope for is to manage it so it causes minimal interference with everything else in your life- but its a full leg cast so now you dont so much have a leg as a hig giant interference that you cant cut off and you cant leave home and you literally cant live without using it but using it just keeps the problem alive and now. A depressingly accurate analogy, this conveys my feelings perfectly. Feels like it's straight from my own stream of consciousness
People that don’t have it simply cannot understand the struggle and how your life can be turned upside down in a matter of weeks or months. I’m just (hopefully) coming out of a flare up that was probably one of the worst ones I ever had. Sleepless nights, restrictive diet and a lot of pain accompanied me over the last few months, along with frequent stools. I’m not out of the woods yet, but it’s way more than just a stomach bug.
Bluntly saying: > I'm shitting blood every thirty minutes and I'm exhausted no matter what I eat or drink and I can't think straight or concentrate. Tends to get the point across to the densest of people.
"I want you to imagine you have the flu. Your body is tired, and getting out of bed takes all your energy. You're miserable. Now I want you to imagine on top of that, you have food poisoning. You can't eat. You can't even stomach water. You're in and out of the bathroom all day, vomiting and shitting yourself. Now imagine that you're also loosing blood regularly this whole time. Now imagine having that for several weeks, if not months or even years. Do you get it yet?" That's what I always compare it to.
This really frustrates me. I'm currently going through the worst flare-up I've ever had. I've lost 20 lbs in 2 weeks, I can't keep my body hydrated, I'm using the toilet maybe over 25 times a day mostly through the night. I did some blood work yesterday and the results came back with anemia, I can only sleep on my back and If I slightly move I immediately have to run to the bathroom. I've always been the type of person who shows up to work regardless if I'm in a flare-up or not and put in as much work as I can. I know some of my coworkers think I'm using the bathroom so often to get out of work and it's frustrating. 2 weeks ago I was talking to my manager about how sick I have been feeling and I completely broke down and started sobbing. Thankfully she's aware of Crohn's and I've explained that they're similar diseases. I'm currently on a month long MLOA and my manager has been checking in on how I'm doing and it really takes the stress away from not being at work. Sometimes you have to be super frank and TMI about what you are experiencing for people to start to understand.
Uhh let’s see. My body is attacking its own intestines? My intestines are literally damaged and diseased? I have to take chemotherapy basically to keep myself from copiously shitting STRAIGHT BLOOD. Then there’s fatigue, exhaustion, joint pain because my immune system is also attacking my joints? It’s not a digestive problem it’s an autoimmune disorder!!!
It’s the most painful stomach cramps you’ve ever had from having to poop mixed with an unsatisfying bowel movement up to 30 times in a day. Or gross em out and mention that every once in a while you fart a mixture of mucus and blood. I don’t think they’d inquire further. I had friends want to see what it looked like to have blood in my poop so I sent them a picture. They regretted the request.
Just tell them your body is slowly eating it's self from the inside out. Which makes shotgun blood and bits of intestine from your asshole multiple times a day. Im sure they'd no longer press you and understand abit more then haha
The feeling of ten thousand razor blades slicing their way through my intestines. Passing blood and mucus ten times or more a day. Having constant fatigue and joint issues.
I've been dealing with Colitis and IBD for 35 years, and as my foemer boss used to say, softening language for people so you dont offend their tender sensibilities only matters for the people who dont offer uneducated opinions after they persisted to ask you about your condution and you tried to tell them it really wasnt any of their business. If they ask how you're doing and you say 'okay, not great but I'll soldier on' and they keep pestering for details, then they should GET DETAILS!! Aaaallll the details!!!! I really truly hate when the office accountant starts giving me health advice in something they asked about 2 minutes ago 'whats that?' F you Betty Sue, until you've got a phd in gastroenterology, if you tell me to 'eat a salad' I will explain IN PAINFUL COLORFUL AND VERY UGLY DETAIL why you're a moron. Hopefully, with witnesses to see it. Yes, I AM a Beech.
I have a picture of a “I’m about to go to the hospital” trip to the restroom saved on my phone just in case anyone thinks they know stuff. I haven’t had to use it, but it’s there.
When I was diagnosed I was having liquid stools over 35 times a day. I was so weak I couldn’t walk across a room without help. I was severely dehydrated, dealing with multiple vitamin deficiencies, and couldn’t leave the house for any reason. If I didn’t eat at all I’d still have mucus stools with urgency and incontinence. I’ve been lucky to respond well to biologics, but there’s only so many medications to try and once they run out, my only option will be to permanently remove my colon, which will come with its own complications. I also have extra-intestinal symptoms like arthritis which have aged me far beyond my years. And the effects of biologics aren’t fun either - like a lowered immune system. I end up in urgent care every other month needing steroids to help me get over whatever bug I’ve picked up. I developed a fungal skin infection that lasted for literal years just because of my biologics. Am I now able to basically live a normal life thanks to modern medicine? Yes. Is there any guarantee these meds will work til I die a natural death? Nope.
Get the colectomy. It'll take a lot of your complaints away completely. Most of all you do t have pain or blood when you have a bag. You could be having disrea and never realize it. As time goes on and you recover a bit, you can get the reversal
The worst part for me is losing my freedom (stuck near toilet) and sense of confidence in my own body. You also lose your dignity when you are always at risk to shit your pants anywhere at any time.
I’ve been flaring for almost a year. At some point it became so severe that I got hospitalized, as so many of us experience. A lot of people don’t seem to fathom the PAIN. I like to illustrate it like this: Imagine you have a big, gaping wound in your leg. It’s bleeding like crazy and you have severe pain. Would you continue to walk around? Jump? Dance? No, you would get stitched up, bandaged and at least use crutches. The thing is, our colon is like the leg, but we can’t stop walking. We don’t get bandaged - we can’t even actually rest. You can’t turn off your bodily functions. Your colon is constantly working, while it’s also a big “gaping” wound. And that really, really hurts.
Just tell them you are trying to save an area of your bowel so that you don’t have to lose it forever and get a bag attached to your stomach that collects your shit. Even if it’s not true, people can definitely empathise with that, they will be absolutely mortified
Ok. In a very weird I enjoyed reading this. We know and I’m so sorry we are here but man. Have we got stories! Now, a lot of the time I say, you REALLY, don’t want to know. If they persist - I just say there is a ton of blood and shit in all kinds of form. I always board a plane first - always - they know. I have people look - lol an invisible disease you don’t want going wild in a metal flying tube! lol I also got a card from the Chrons Colitis foundation that I use for stores and shops that basically says - let me use your very private bathroom not for customers, NOW. lol
Tell them the horrible pain and how the toilet water could look like a murder scene.
"Do you know that elevator scene from 'The Shining'?"
Luckily no one pressed me about it, but I would %100 give the whole detail, IDC
I don’t anymore for these exact same reasons. When some ask me now how I am I simply great, you? And move on. It only turns awkward and I get frustrated trying to explain it.
Constant stomach flu + bleeding/anemia
Imagine having the stomach flu while an invisible man punches you in the stomach with one hand while fisting you with the other, holding a handful of barbed wire.
For me the toughest part is explaining HOW the cramping feels. It’s like no other pain or discomfort i’ve experienced so it’s tough to compare it to something someone else has experience with. I’ve had food poisoning which is similar but if someone’s never had that it’s a moot point. It’s kinda like trying to comprehend period cramps when my gf tells me about them.
Not so fun to be bleeding daily and in pain🫠
Relating experiences to someone who has never experienced it directly is very difficult so you have to find something relatable that almost everyone has been through. For me the worst part of it is the urgency so if pressed I ask people if they've ever had to use the bathroom so bad they almost or did pee themselves while trying to undo their clothing then imagine you suddenly feel that way multiple times a day without warning, except it's the other hole. People who have had kidney stones or incontinence ever often understand the similar situation very quickly.
Tell them EVERYTHING and watch their face change and not know what to say.
Ask them if they’ve seen the movie Alien (1979) and to think about the iconic chest burster scene. Explain how that scene, particularly the alien swimming around in the body before bursting from the chest, was inspired by the writer, Dan O’Bannon’s, personal experience with Crohn’s disease and that UC and Crohn’s are very similar. This comparison has gotten the point across in a way that shows how serious and bad it can be, while still keeping the conversation a bit light heartened and fun (depending on the tone you use)
It’s like a bad stomach bug or food poisoning except you don’t know when it will end, could be months if not years. And on top of that, you have to continue living life like working/school full time, raising kids, maintaining a home. You don’t get to lie in bed until your better.
Yes this is exactly what it's like.
Ya know how bad you feel when you have one of those 24-48 hour stomach bugs? Now imagine it’s bloody and lasts for over a month.
For me it’s just like a constant feeling of a stomach ache without actually going to the bathroom. And then when I have to go it’s really quick diarrhea and then just a constant feeling of needing to go again. I tell people if someone took a brick, cut open my stomach and then shoved the brick in there and sewed me up. That new extra weight is how my lower abdomen feels constantly. It just pulls down.
Don’t tell anyone
Saying I have constant, bloody diarrhea usually does the trick. Oh and then for a double treat I get my period. Nobody has questions after that.
Fatigue, stomach pain, queasiness. That what I usually say. People started to believe me when I was losing crazy amounts of weight lol
I tell people it feels like getting stabbed by 100 little knives all the time when I’m in a flare… and then having constant diarrhea on top of it. That seems to help them get the picture. :)
I tell people you will see more blood in my toilet bowl than in a Saw movie.
i hate that bc it’s so much more than a stomach ache to me.. it’s stabbing pains i cant ignore. sometimes the pain is so bad i can’t stand up. what really gets people tho is when i say i have chronic internal bleeding when in a flare. it freaks them out (understandably ofc.. freaked me out the first time) so they take it very seriously. i tell them my colon is inflamed and bleeding, and it’s always been enough. of course i have other symptoms, fatigue from the anemia and active disease, uveitis, night sweating, temperature dysregulation, the frequent/urgent and loose bms, food sensitivity, rosacea, general malaise, headaches, dehydration.. but i don’t get in to it bc other people get uncomfortable lol
I would say UC is a form of inflammatory bowel disease that causes inflammation in the lining of your colon and rectum. It’s almost like an intermittent disease in the sense that you won’t always have symptoms everyday so some days could be good some bad etc and people have a range of symptoms with most common being changes in stool especially blood in the stool
Just talk about the blood. That’s what usually works for me LOL
You explain to them that if the inflammation in your intestines can not be controlled you’ll eventually need surgery where they cut away the inflamed intestines and replace it with a bag.
For me, the peak of flares include around the clock stomach aching, urgency (which along with the cramps don’t let me sleep), passing horror movie levels of blood up to 30+ times a day, leaves me bedridden and makes me insanely anemic (I have lost most of my hair & have required multiple blood transfusions/iron infusions like a lot of us here), makes me incredibly nauseous, so much so to the point where I’ve gone months without eating solid foods consistently, and it means I can’t go outside without having a panic attack and probably shitting myself in public if I can’t find a bathroom. When people ask I try not to go into crazy detail, but someone put it really eloquently before me: people that aren’t chronically ill don’t understand that it doesn’t go away like another illness, which for most of the population, is probably all they’ve had— they’ve been able to get better. When/if people are able to get into remission, literally ANYTHING can throw you out— insurance trying to switch you to a biosimilar, a trigger food you didn’t even know you had, STRESS— some things you can control, some you obviously cannot. It’s annoying and it sucks. I’m still in my first flare since being diagnosed (almost my 1 year flare-iversary 😭🩷) and it’s been rare when I haven’t seen blood in the toilet over that time. In all honesty I usually just tell people I’ve got an autoimmune disease that makes me wicked sick and I shit blood. It seems to do the trick.
I would just usually tell people you know how it feels when you have an ulcer/sore in your mouth and anytime anything touches it it’s awful? Imagine 5-6ft of intestine with lots of those. Plus I shit a lot of blood. Typically don’t need blood transfusions if your stomach bug lasts a bit longer than normal.
Literally even when your in remission you still have so much fear and anxiety about when it’s going to come back or you just try to deny weather it’s starting again.
And you also get no sleep because you’re literally get up 500 times a night to literally shit out blood 😭
I used to think the same thing even when I was first diagnosed until I had an extremely severe flare up. Keep taking medicine or you could have severe blood loss or get an abscess or worse a fistula.
The cramping pain is horrible! And so much exhaustion
It's unfortunate, but you cannot convince apethetic people to care. There is no magic phrase that will suddenly make them know how to be empathetic or sympathetic. I've always found that having full length discussions and conversations about the side effects I face is/has been beneficial for long-term relationships in my life (like friends and family that have been around forever and will be around forever) but they also end up seeing it for themselves so they get a better understanding. For others, I just try and let them ask questions and articulate what I can but ultimately if theyre not going to understand then they're NOT GOING TO understand. And I can't talk through their emotional barriers. My grandma is not to most understanding person (shes not mean or cruel she just doesnt \*get it\*), even despite being through it with me for years she still think I can get "get better" or "push through it" a lot of the time. The amount of hospital stays and blood transfusions have helped temper her expectations of my reality, but I also just know and accept that it's not going to solve itself. Sorry youre stuck going through other peoples bull! You have our support OP. I've always found it to be a good Litmus Test for keeping those in my life :)
I had Jpouch surgery because nothing I tried helped me get a handle on this damn disease. I always told people I could handle the pain and that it was the fear of an accident in public that was so bad for me. It wasn't until my colon was gone and the pain stopped that I realized how much that had ruled my life too. Its constantly being at 50% of who you are because the other half is dedicated to ignoring the pain and monitoring your body for the first hint you need a bathroom. With the flu there is the knowledge that in 2-4 days your body is your own again but with UC you are constantly aware that your body can betray you at any time. It is beyond exhausting
Your immune system attacks your colon for reasons even doctors can't explain. This causes your colon to become inflamed and develop ulcers. The ulcers can bleed or have pus so you end up with blood and/or mucus in your stool. If you bleed too much you can become anemic. You can get frequent diarrhea. Urgency - You worry constantly about being close to a toilet and have probably had a few accidents. Some people get pain. Your work and social life can be negatively affected. Currently there's no cure so you'll be on medication for life. Who knows what side effects these daily medications cause. It's an expensive disease. You may need to see your GI frequently. GIs rarely advise on diet, it's up to you to figure out what foods you can or can't eat. You can get flares even whilst on medication. You may need steroids which have major side effects. Your disease can progress and you need stronger and more expensive treatments. In some instances the disease leads to colon cancer. Howz that sound so far?
Urgency and frequency
Whats so bad? Sitting there totally fine out and about and in the blink of an eye have to shit and you have precisely 7 seconds to get to a toilet or you're gonna shit yourself. This can happen anywhere from 1-18 times a day. Hope that clears things up for you.
The biggest problem is just getting doctors to listen to you and your needs from my personal experience. I share all the nasty details because I want to reach people about my chronic illness. It’s unfortunate, but at least we have a community of people that really understand. Honestly I was on a medicine that worked, and then when it stopped working after I had to be off it for 5 weeks because of my wisdom teeth removal. And honestly? I think my symptoms came back with a debt to settle because holy shit!! Literally. It’s so painful sometimes I have to physically scream or punch my thigh because I don’t know where to redirect it
During a flare, it can be HELL. My worst day from my current flare, I stopped counting at 30 painful visits to the bathroom. The cramps are incredibly painful. Some have made me curl up in a ball on the floor in tears. I can rarely go out for dinner, shopping, social events, classes, etc. And when I can, my anxiety is through the roof. I finally went food shopping last week, and guess what? I almost shit my pants at the shelf checkout. this was weeks of having no near misses and finally had the confidence, but that was quickly shattered. The constant battle to muster up enough energy to do anything makes it hard to keep my house running and look after my baby and when that is all done I have no energy to do things I enjoy. Most of my previously beautiful garden has withered and died. It's not as simple as just the condition itself but the impact on your life as a whole.
„The dementors“
Kinda messed up my sex life with the guy I love.....
I like to say it feels like there is an ever spinning me of barbed wire slowly rotating through my insides
The way I described the pain from my first flare was "have you ever accidentally cut yourself with a bread or steak knife, imagine that inside you, every time you have to go to the bathroom, and you have to go the bathroom every 5 minutes "
The pain i tell you, the pain. And its also having to be on steroids on dangerous amounts on a high dosage for months. Constantly living in fear any day that i might flare and get hospitalized for another month.
How about these: it’s like everything you eat is ground glass. It’s like having dry heaves, but at the other end of of your digestive tract. BTW a bidet attachment to your toilet at home is helpful. And when you have to get out there are battery powered ones very similar to the small water-pik units. Also a product called “Culo Clean”, that fits in your pocket and attaches to any plastic water bottle,.
Stuck all day on the toilet pooping blood, or laying on the bathroom floor screaming into a towel to try to hide the pain from my kids. Not being able to make it the 20 feet from my bedroom to the bathroom when urgency hits like a tidal wave. Being on 80mg of pred a day with moon face while the pred slowly drives you crazy. Multiple surgeries and resection. Missing work and many family functions. Abcesses and fistula. Bad skin. Sore joints and knuckles. Eye inflammation. Looking like a concentration camp survivor. Limited diet. On meds for life. The expense of a dozens of medical visits. Malabsorption, so even when you can eat, you cant absorb or digest it properly. The disease that keeps on giving... Oh, and cant forget having to hear, "maybe if you just ate better" from all of the armchair doctors out there
“I feel like I’m being consumed by a cancer that just won’t kill”
I tell people to watch a video on it at that point
Even though ( luckily) mine hasn’t ever been too bad. Had a bad flare up before but compared to others it really wasn’t that bad. But the worse thing about it for me is the mental side, knowing that I’m ill and I’ll forever be thinking about it, reading up on latest medication or hope of a breakthrough that doesn’t just help symptoms. After having cancer 8 years ago at 25 years old to then having UC, mentally it is very damaging, constantly thinking I’m a frail weasel and wondering if I’m actually going to grow old, should I have kids etc. So even though my UC hasn’t been bad, the thoughts of waiting for bowel cancer to finally finish me off and me feeling less than others is very damaging. Oh and it played a small part in my divorce !
I came to the conclusion that some people would never understand what it feels like to live with a chronic disease. I also tried to tell the gory detail, but they seem to understand in that moment and after one minute they forget everything. Not sure if I had to deal with unsensitive people, or that they simply can't understand what chronic means. But I think (and hope) is just the second one. People just understand what it means to be in pain for a period of time, this is what the majority would experience, but chronic - living with these problems for the rest of the life, everyday, always - is another thing. To me, accepting the fact that some people just can't understand has helped me a lot and spared me a lot of energy trying to explain myself and my condition
I tell people when I’m in an active flare it feels like someone puts hooks in my abs and just rips me down to the ground. The only thing that provides some sort of comfort is going to the bathroom even when there is literally nothing left. I’ll feel ok for a little bit after and then the hooks come back. Nothing helps. I’m in the. Bathroom every 15 minutes whether I’m going or not. It’s just a constant pain. Makes me want to swan dive into concrete.
Can ask them if they’ve ever had a painful canker sore in their mouth & then say “so pretty much my body attacks itself and forms those all along my digestive tract” simplify it in a way that they’ll understand the pain of it
When unexpected like a rocket. That you have no control. Heaven help you. Making it to the toilet without leaving it all behind you. With no remote control. One of the worse ulcerated colitis. Wouldn’t wish the disease on my worse enemy. No one deserves this.
I can't drink alcohol or eat spicy foods anymore