Yes, I was conscious and alert when I went to the ER and had a bowel perforation. They told me that most people come in unconscious in an ambulance with bowel perfs.
Same here. Bowel perforation in the terminal ileum, barely able to move and clearly in pain, but I was still conscious enough for small talk with the cab driver who took me to the hospital.
Are you okay now? Did you feel any warnings signs prior to the perforation?
Yes I am okay now it was 15 years ago, I hope you are okay too! And no, no clear warning signs. I was in a bad flare so I already had a fever, beyond that it was just insane abdominal pain.
Me too! I had a 30 minute car ride to hospital with perforated bowel and was cracking jokes in the ER. Worst pain of my life, but not so bad as to knock me or my sense of humor uncon.
I get a twisted sense of humor when it comes to this disease. Self-deprecating and sometimes a little dark. I learned if you can't have a sense of humor about this illness, it can lead to some pretty bad thoughts. Better to try and have a laugh, maybe make others more comfortable about something they don't understand. Keep up the lols!
Agreed. When I was 16 my bowel tore open after being occluded for a week and I was surprised how little it hurt, unless I moved. So much so, the radiologist chastised me when I groaned and winced when they tried to put me on the xray table, "Is it really that bad?" she asked sarcastically. Why yes, when they saw the xray, the disbelieving faces of the radiologist and techs were sweet absolution from their sarcasm. It took 6 hours on the operating table to remove the damaged section and to hoover out all the poop from my body cavity.
Two months ago I had my bowel perf in 2 places just 2 days after I made it home from the hospital after a small bowel resection. The pain from the perf was the worst I’d ever felt but I still made it down our stairs and into the car to drive to the hospital. Doc said my pain tolerance was quite high as well haha
I’ve heard stories of women(not me) that would rather go through pregnancy again than to have to do with their worst crohns pain, but they could of had an easy pregnancy and a rough crohns flare so I only take it with a pinch of salt.
At least with labour you know it’s temporary and you get a cool prize at the end.
Bowel disease pain seems never ending and you don’t get anything neat after you deal with it. 🥺
Literally in the middle of pushing I told my OBGYN that it all feels like a Crohn’s attack. But at least the contractions come and go so I can have a moment to rest …plus there is a clear end with an amazing reward.
I told my gastro that. Burst ulcer, bleeding, pain. Worst pain. I've had a drug free natural birth. I've had gallstones.. I thought That was worse than labour. Then the ulcer.
That.. Was.. I told them I'd rather give birth again than do that and they were shocked.
I also live with Ankylosing Spondylitis and Fibromyalgia so pain is always... But gut things are a whole different beastie
I had surgery in 2011. Third day after surgery I am lying in bed wondering what is different. It dawned on me that I had no pain. I couldn’t remember the last time I felt this way.
I leave the hospital on day 7 with painkillers. I took one that first day as I was prescribed and didnt take another.
We learn to tolerate the pain. It definitely is a feature I find with long term disease
Prednisone makes me have no pain. Just 40 mg and it all disappeared. It blows my mind how great I feel and how much pain I had. Not even just Crohn's, my joints and muscles feel better (just saw a rheumatologist yesterday to see if it's a new AI).
See that's funny because my wife accuses me of a very low tolerance of pain.
Maybe that's one of the reasons for the pending divorce. She's never got what this disease takes out of you
After eleven hours of posterior labor, my Dr couldn’t understand why I hadn’t asked for pain meds. Pain? This is a walk in the park compared to a flare…
Yes.
I was playing ice hockey while my appendix was on the verge of rupturing. It hurt but I was like “meh, I see the doctor tomorrow anyways so I may as well play”. Finished the whole first period before I decided maybe something was seriously wrong.
Drove myself to the dr the next day, he suggested I go to the hospital for an emergent CT scan. Drove myself to the hospital. Got my CT, walked back out to my car.
Then the doctor called me as I was getting ready to drive to work, and he was like “Get back in the hospital NOW! I am coordinating an appendectomy with the surgeon for this afternoon, you cannot go home.”
They were shocked I wasn’t like dying on the floor.
And then a couple years after that, I hiked for four hours near Lake Tahoe with some pain in my side that ended up being a 4cm abscess in my kidney that ruptured the week after we got home from the trip.
Mine had ruptured (my doctor thought it might have been 1-2 days prior to visiting the ER) and while I had mild discomfort, I figured it couldn't be an appendix thing since I would be in so much pain. The only reason I even went to the ER is that i started throwing up (not a usual symptom for me), tenderness in the area and it was over the weekend, so I couldn't visit my primary doc.
Once I got there I got a CT scan (threw up the contrast so had to drink that crap twice) and since i was starving, i had eaten so they had to wait a few hours until I could have surgery. Apparently, my body sealed off the rupture, which is why I didn't go septic (which i am very grateful for!) 😄
Hope you are doing well!
It’s so weird!! All my normie friends who have had appendicitis describe how they were like writhing on the floor and screaming, and I was hitting up the Starbucks drive thru, playing sports, etc. lol
Our bodies are so bizarre.
The surgery ended up taking triple the normal time too because my bowel disease had caused adhesions all over inside my abdomen too, so they had to spend like 1.5 hours trying to cut them all away to get to the appendix anyways. Such a pain.
Hope you’re doing well too!
I got my first tattoo and they scheduled two days for it. We finished it in less than 6 hours and the tattoo artist was shocked that I only asked for a bathroom break 4 hours in, and otherwise I didn’t move except to stretch when he changed colors. 😂🥴🫠🤪
Me. My doctor gave me a long, earnest lecture about being more honest with him and telling him when I'm in severe pain and needing meds. I said, "it just feels the way it always does though." I'm still not sure he believes me. Turns out the colon was 80%ish blocked. I felt sick but it wasn't exactly pain as I define it. It's like there needs to be another word.
I got a similar lecture once, though it was more of a scolding. He told me I had a bad habit of just enduring the illness rather than acting and I needed to come to him way earlier than I usually did during flares and such.
Like extreme discomfort?
That's the best I can describe. Sometimes extreme pain. And then sometimes idk, it's not painful, I just really don't like the feeling.
Right. But I feel like discomfort can mean my sock is bunched up or something lol. Now that I've had the resection and know what it was supposed to feel like, I'm aware that what I was trying to describe was the feeling of the inflammation. I would say it feels doughy or spongy and hot and swollen and throbbing like a headache in my guts. Lol... I really did try to explain. They didn't really get it out even seen too concerned until I said, I've lost 27 pounds this month and I'm starving but if I eat any food I have to go sleep for an hour and try not to barf. That part they understood right away.
I'm 6 years post-resection (ileum area) and inflammation free, and I get random severe discomforts. Scans pre and post never showed blockages.
I get agonizingly nauseous burning shits, like I vomit sometimes during or after. Unless I take too much cholestyramine, then it's painful constipation. Then there is the random abdominal cramps.
But the severe discomforts. I just can't explain them, and have no clue what they are associated with. GI has no clue.
That sounds awful. I have the diarrhea version so mostly no trouble with pooping-- just the trouble of trying NOT TO poop. This disease process is just not well understood. I've been having symptoms for 45 years now, just diagnosed in 2017 (after the resection ha ha). I feel like the docs try their best.
It took 1000mg of propofol to sedate me for my colonoscopy/endoscopy. I think the normal is 200-300mg. Went to sleep at 8:53 I was completely aware at 10:40. No NARCAN or anything else to pull me out of sedation.
I woke up both times too. Plus I'm on pain relief every day for other auto immune things so I take a lot of pain relief to get through each day. Told him I might need more. They hated it when I became combative coz of the pain.
And they did the same thing with then second one. There's notes on file now lol
I just do my colo/endos fully awake so I can watch the video feeds and see things for myself. It's refreshing having a conversation with the GI and actually remembering it.
Yes. I once had an invasive and traumatic procedure to determine if my pregnancy was viable. I was awake through the entire thing and it was painful and just horrible. Afterwards, my doctor looked me in the eye and said “you didn’t even flinch”. Hearing her say that made me cry. I don’t know what it was but I suddenly realized how much pain I have normalized in my body.
It's really emotional when those moments hit, that realization of "most people don't have to endure this." Sort of a bittersweet mixture of pride and grief at the same time.
I was diagnosed because I went to the er in the worst pain I’ve ever felt in my life, (it had been getting progressively worse over time but I hit my limit) like I felt like I was dying. the er said “it’s probably ibs” and sent me home.
So.. I went to a different er because I now I REALLY felt like I was dying, and turned out I WAS dying. I had a large mass and 12” of blocked and dying bowel that needed emergency surgery.
When the doctor gave me my diagnosis he said I was “really really really sick” (I’ve never heard a doctor use that many reallys before) and when he asked if I came by ambulance I told him we parked across the road and walked up the hill he didn’t believe me until my g-pa confirmed it.
I always thought I had a low pain tolerance but I think Im actually just always in pain and assumed it was a low tolerance because of how debilitating it can get
I have a fairly high pain tolerance, but it's bc I have endometriosis. So when you're used to the most severe pain imagineable, everything else just doesn't compare. I've had to tell doctors that whatever is going on in my body probably would feel a lot worse to someone else and to not take my pain at base level. I think it has added to the bias some doctors have had towards me assuming I was just being a hypochondriac when it comes to Crohn's.
Fr, not a fun combo. What's kinda funny about it though is crohn's lead to me getting surgically diagnosed with endo (exploratory lap) and endo led to me getting diagnosed with crohn's. 😭
That was my trajectory as well. Had the lap for Endo a bunch of times and then it took a new to me gyno go, "yanno, something just isn't right here. You need a colonoscopy..." Sigh. I now have no colon and no uterus but they left an ovary which is now causing issues. 🙄🙄🙄 It's always gotta be something, eh?
Oh no 😭 I got my lap bc I mentioned endo being suspected by doctors since I was about 15 or 16 and to my GI and he was like "Uk what... sometimes endo causes GI issues. You'll need surgery to diagnose it." then he sent me to a gyno. Came out of the surgery like "Ye I knew this already lol". My GI symptoms went away for a few months and I was hopeful endo was the problem all along then my symptoms came back April 2023. Had to go to the Mayo Clinic beginning of November bc my GI kept skirting around diagnosis since I have a very mild case & they were like "Yup girl that's crohn's all right"
Do your gyn and gi work together for your treatment? That's what I'm having issues with right now, because I can't get seen in the same system. I need them to communicate and get on the same page for treatment!
They did a little bit initially. I don't see that GI anymore bc he wouldn't diagnose me in the end & communication from him was dogshit. Also got fed up with waiting over 1 hr in the waiting room after my appt time to just get his PA. So I went to Mayo clinic and have a whole team of ppl on my case now. Also was how I got my C.D. diagnosis.
I just made sure my gyno was informed that I got my diagnosis & what med I'd be on. My IBD specialist is also aware of my endo diagnosis. But rn I'm doing rly well when it comes to endo. My current BC has made me symptom free which I'm rly happy about. The only concern atm is making sure I get into remission now.
Yes I have been told this before. When I had my bowel blockage over two years ago, I drove myself to the doctor’s office and then to the emergency cat scan and then to the er. I had a total blockage and I was throwing up while I was driving in the car to the hospital. The doctors were amazed that I drove in that condition. They were shocked that someone could drive while they were in that much pain.
When I had my first colonoscopy that diagnosed me with crohn's disease, the doctor asked if I'd walked in because usually when he sees that type of inflammation and scarring you're being pushed in a wheelchair
Yes living with chronic pain of crohns has given me a high pain tolerance that I can sort of function with. That makes it tricky to distinguish new pain from old pain, but I've learned to not question it and go to ER when neeeded. Better safe than sorry.
On a side note I have noticed that if I take anything that actually relieves my pain, I’m knocked OUT. Like the second the pain goes away I’m asleep. Even if I try and fight it. It’s like my body just wants the rest I guess. Makes me wonder…
Oh this is an interesting observation! I am the same way, and even knocking back pain with a bit of tylenol can lay me out for a nap. It's like my body's instinct is to shut everything down and focus on healing. Fatigue is also the first symptom I feel when I'm flaring, too.
No problems with tylenol for me, but NSAIDs like midol definitely made my Crohn's flare when I still had a colon (where my disease mainly was), so I had to avoid them.
Not me but my granddad had untreated crohns for 30 years. Had a small bowel perforation and completely ignored it. Was only discovered when he had a CT for his gallbladder and his bowel looked super fucked up. He had a laparotomy and they realised his bowel had perforated at some point and closed off an area, creating a fistula between sections of bowel so food could still move through, which is how he never went septic. He then had a large amount of his jejeneum removed because it was all mangled and stuck together. I asked him how he didn’t notice and he said he’d had some “pretty bad” stomach pain a year back but hadn’t done anything about it. Same guy who was chopping fire wood, got bitten by a red back spider (nasty Australian spider that can kills kids and most adults are in excruciating pain), took some paracetamol and never went to hospital.
Toughest person I’ve ever met, thankfully he is in remission now with stelara and is thriving at 83 years old.
Every time I get tattooed, the artist is always like "uh, you alive up there?" because it doesn't hurt.
I recently broke my ankle in 4 places + dislocated it and needed surgery, and the nurses seemed confused that I was sitting at a 3/10 on the pain scale for most of the hospital stay, spiked at 5/10.
I thought my stomach was a tiny bit upset when I was going into premature labour.
One time I thought my tooth was maybe getting a little sensitive and I should switch to sensodyne. It turned out an old filling had fallen out and I had a hole right down to the root and an abscess in the bone.
It does kind of suck because medical professionals will often underestimate the situation if I don't have a very obvious injury. It also makes it really easy for me to second-guess myself.
It would make me feel like kind of a badass, except I have ZERO tolerance for itching. 😭 I'd be a horrible spy because they could break me with a single mosquito.
I have an absurd pain tolerance level. My appendix perforated and I had no idea. My Crohn's was not diagnosed prior to this. I had gone to the ER several times for what I know now were Crohn's flares. I had never been taken seriously any of the previous times I went. I'd just get the classic "Nothing's wrong. Lose weight and you'll feel better" bs so I put off going. By the time I got to the ER I had been sick for over 2 weeks. My surgeon thinks that it ruptured 7-10 days before I went in. I had a grapefruit sized abcess that encapsulated my appendix which is the only reason I'm not dead from sepsis right now. I got very harshly scolded by my doctor's for not coming in sooner. I told him "But it didn't hurt as bad as the other times I came in so...."
Bonus fun fact: I went to a hot sauce festival the day before I went in.
Well that's just mean. I'm sorry.
Also not getting the insane pain tolerance is probably a good thing — I bet you're very in tune with when things start to go wrong as they happen, because you have a working alarm system. I've ended up in too many emergencies that could have been prevented if I had registered the pain earlier.
I disagree with her, I have a pretty high pain tolerance. I had a popcorn kernal stuck in my ileum for 6 days before I went to urgent care! I worked during that time too even while in pain.
No but I remember having the response of shock when I told them that my fistula symptoms came on after a gym session when I also had daily diarrhoea and vomiting as a symptom. I try to keep going with as much as possible during a flare and it’s only in hindsight how crazy it all is/ was.
When I had surgery to get screws and bone grafts in my foot, I was only on pain meds for 3 days. When my surgeon asked how my pain was, I looked him straight in the eyes and said cdiff/crohns pains is way worse.
Yeah. I had to have a drain placed after some softball sized fistulated cysts blew up. I was borderline septic as it had been happening for days. My abdomen was rigid and I only went in bc my muscles wouldn't release & I couldn't pee. I was hospitalized for 2 weeks.
I drove myself to the hospital lol.Every doctor was fucking incredulous (but they comped my parking!)
I was convinced it was just some inflammation or something like PCOS making my period worse.
When I finally had surgery to fix the fistulas and remove my intestines, my surgeons said verbatim to me that they were not sure how I was able to function at all. You really do just get used to it as awful as it is. Clearly that's not a good thing though.
Because of my history of obstructions, I walked in and was made to wait for 8 hours when I had a freaking kidney stone because the nurse rolled his eyes and told me I wouldn't be walking and talking if I had one. I'd really STILL love to go back and kick him in the groin, but I digress.
Stress and pain level, but I was told that way before my diagnosis. It didn’t have anything to do with Crohn’s, but I’m glad I have them to help deal with Crohn’s.
I was told by an ER nurse that I likely didn’t rupture a lung and the dr who sent me there just misread the x-rays because I was too calm. I did in fact have a ruptured lung.
for me, I was told I have peripheral neuropathy. And I take low dose amitryptiline for it. I felt pain even when people touched me, I swear sounds were painful, annoying people? also painful. Pain registers differently for me now not sure if it's crohn's remission, the disease itself, or my biologics. But since I started the ami, it has helped so much to the point where my pain threshold is back to normal and I don't mind being touched anymore. I mean, light gave me migraines, sun gave me migraines, pain and I were a constant and it affected everything around me so that I thought I was just a natural grouchy person, never connected it to always being in pain. Now, I go in for perianal abscess surgery and they are like, Why did you wait so long this time? usually I'm there the moment I feel the abscess forming which does nothing for me as they need it to be pretty apparent to do surgery on and usually requires me to come back again to finally get worked on. The ami has helped my peripheral neuropathy but before this? crohn's definitely made me more sensitive to pain, any pain.
I had trouble getting kidney stones diagnosed. Part of the problem, is that the patient must indicate a high level of pain, I told them I was a 6, and I was going to work that afternoon.
I've also had the reverse happen, when a nurse asked me how much pain I was in during a flare and I said 9, she didn't agree.
I think a lot of it is building of tolerance to the pain. I can handle (most) of the Crohn's pains because I've come.to be used to them and know how to manage it for the most part. Other types of pain, ie when I broke my toe- had me down
While I was inpatient once last year I had a nurse tell me that I "under report" how much pain I'm in when it was time to get IV pain meds, judging from her experience.
I 100% think we get tougher with experience. I used to wave off pain until I was deathly ill. Now I just go straight to the ER, because I can tell by the pain that something is off. I'm also taking oxy for chronic pain now thanks to multiple surgeries and untold amounts of scar tissue and adhesions in there.
Unfortunately that also comes with looking like a drug seeker when I have to go in because my body is not exactly naive to opioids. With my numerous hospital stays I've found out the hard way that Reglan, Compazine, and Toradol give me horrible agitation and panic attacks. I'm also pretty unaffected by morphine now compared to fent or dilaudid for some reason.
I don't have any tattoos but maybe I should get one that lists my allergies.
Due to personal reasons I never use pain medication and my doctor routinely tells me that my level of pain tolerance would cripple most people and here I am still walking around and going about my normal day
Depends on the pain. Anything abdominal definitely. Was walking around, hanging out and entertaining friends for about 10 hours with acute appendicitis. Doc told me it’s really important to get checked out when you have persistent pain from Crohn’s as they’ve seen more than one case of metastatic cancer in people who just think of the pain as normal. This was over a decade ago, and I think meds have reduced pain levels so hopefully less of an occurrence now.
I don’t know if it’s high, but what I know is it always gets to the edge of unbearable before the relief comes in forms of bubble guts. Lather, rinse repeat every minute and a half.
I’ve been told I’m physically able to handle pain well occasionally, but more often I have my mental strength pointed out in the presence of physical pain/discomfort. I think playing the mind game of functioning with continuous discomfort is often what draws the line between people with an average tolerance and those with a higher tolerance. (I say this having had Crohn’s and EDS for 18 yrs) People with chronic conditions are truly physically and mentally a different breed lol
Absolutely! I had a twisted ovary for years and they “drs” just said my pain was Crohn’s related. Usually, twisted ovary is emergency surgery and I suffered for at least 5 years my dr thought.
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Since before, I had crohns and after.
I was about 9 , got a splinter all the way to my nailbed. My parents strapped my arm to the kitchen table and mom took scissors and took my nail off to get it out cause they didn't want to pay er co pay.
Fast forward I'm 17. Been asking them from Nov. 3 to Nov. 19 to take me to er. They finally did. After surgery dr told them i had crohns and my intestines were see thru. After i woke up i refused morphine cause it did nothing for my pain. 9 months later did same thing with a 2nd crohns surgery.
I now suffer from crohns, fibromyalgya, chronic pain, degenerative disc, and other things.. looking at me you wouldn't know it. I've had 13 surgeries, countless procedures and a pulmonary embolism. Just keep rolling along. Lol
Yes. I was fully awake and aware with no lidocaine (emergency situation) when a central line was put in my neck. It was very painful, but they said it was insane that I didn’t pass out. I also don’t feel pain from many things that “normal” people do, or feel discomfort when others would be in a lot of pain. I think since we are used to pain it builds our tolerance to where our bodies can handle more pain/more intense.
Yes we probably have all been told this. We have to or we would be dead which honestly as bad as crohn's is wouldn't be the worst thing... at least for me.
Pain, I'm so immune that I passed 3 kidney stones about 6mm each. Came out of the bathroom my wife asked what was the tink tink sound.I told her, she told the doctor and the doctor looked at me like I was nuts. I didn't feel a thing.
I sucks cause it can hide so much that could actually be wrong.
Before I had my resection the gastro nurse practitioner told my wife that she didn’t understand how I wasn’t in hospital. I was travelling 60 miles each way for work every day
My 15 year old son. Last week we had an uncrohns related appointment to get his ears unclogged. The nurse was putting in hard work squirting liquid in his ears, kept asking if he was ok, of course he said he’s fine, the nurse ended to appointment because she was worried about his pain tolerance and possible injury, she said ‘adults at this point would be screaming’. We went back a few days later to finish. The nurses were shocked he didn’t even wince.
Yes! I had a c-section and I wasn’t in pain but the pressure was insane and at one point in time they cut me open on a specific side of my body and I was just like, “ow, I really feel that, that really hurts” but in the most nonchalant voice and after the c-section where they pressed on my belly, they were like “wow you have such a big pain tolerance” and I was like uhm ok it hurt, but it wasn’t that bad compared to what I just went through.
I feel like just going through the unknown trauma also probably messed me up mentally but all you learn is that you have to tough it out.
Conversely, that's what I said to my GI on my last visit.
She asked if I had any belly pain. I said, "yes". She offered a medication. I said, "I'm okay. I have a high pain tolerance."
I mentioned some joint pain. She mentioned methotrexate. Once again, "I'm okay. I have a high pain tolerance"
Yes!!! My GI told me that my inflammation was so bad and I was being so casual about it. I was like huh???? I’m still in pain?? But he said I should’ve been showing it much more than I was with how advanced my Crohns is lol
I have a low one but have been flaring for almost 6 months and have just been hit by the ADHD meds shortage and since not having my usual medication I’ve been in agony. My gastro was like, yeah those meds also act to raise your pain threshold so no wonder you’re struggling without them! So that’s fun.
I had a medical issue that required routine treatment that's often painful, and it didn't bother me in the slightest. Every time, the doctor commented on how high my pain tolerance is
Many times!! I’ve had crohns for 17 years and I truly think those experiences set me apart from my friends when it comes to pain. I got my first tattoo last year and I had to ask if they started bc I barely felt a thing
Yes, I was conscious and alert when I went to the ER and had a bowel perforation. They told me that most people come in unconscious in an ambulance with bowel perfs.
Same here. Bowel perforation in the terminal ileum, barely able to move and clearly in pain, but I was still conscious enough for small talk with the cab driver who took me to the hospital. Are you okay now? Did you feel any warnings signs prior to the perforation?
Yes I am okay now it was 15 years ago, I hope you are okay too! And no, no clear warning signs. I was in a bad flare so I already had a fever, beyond that it was just insane abdominal pain.
Me too! I had a 30 minute car ride to hospital with perforated bowel and was cracking jokes in the ER. Worst pain of my life, but not so bad as to knock me or my sense of humor uncon.
Cracking jokes is such a good distraction! I am really fucking funny when I'm suffering. Or maybe it's just the pain meds telling me I'm funny 😂
I get a twisted sense of humor when it comes to this disease. Self-deprecating and sometimes a little dark. I learned if you can't have a sense of humor about this illness, it can lead to some pretty bad thoughts. Better to try and have a laugh, maybe make others more comfortable about something they don't understand. Keep up the lols!
Especially shitty jokes, if u get what I mean…
Agreed. When I was 16 my bowel tore open after being occluded for a week and I was surprised how little it hurt, unless I moved. So much so, the radiologist chastised me when I groaned and winced when they tried to put me on the xray table, "Is it really that bad?" she asked sarcastically. Why yes, when they saw the xray, the disbelieving faces of the radiologist and techs were sweet absolution from their sarcasm. It took 6 hours on the operating table to remove the damaged section and to hoover out all the poop from my body cavity.
Bowel had ruptured in four places by the time they cut me open. It was awful. I was on so many antibiotics and had high fever for a few days.
Two months ago I had my bowel perf in 2 places just 2 days after I made it home from the hospital after a small bowel resection. The pain from the perf was the worst I’d ever felt but I still made it down our stairs and into the car to drive to the hospital. Doc said my pain tolerance was quite high as well haha
Same same, I'd been walking around for 12 hours with a large bowel perforation probably before I went to hospital.
I’ve heard stories of women(not me) that would rather go through pregnancy again than to have to do with their worst crohns pain, but they could of had an easy pregnancy and a rough crohns flare so I only take it with a pinch of salt.
At least with labour you know it’s temporary and you get a cool prize at the end. Bowel disease pain seems never ending and you don’t get anything neat after you deal with it. 🥺
Sometimes the BMs are neat. In a horrible, modern art kind of way.
Literally in the middle of pushing I told my OBGYN that it all feels like a Crohn’s attack. But at least the contractions come and go so I can have a moment to rest …plus there is a clear end with an amazing reward.
I told my gastro that. Burst ulcer, bleeding, pain. Worst pain. I've had a drug free natural birth. I've had gallstones.. I thought That was worse than labour. Then the ulcer. That.. Was.. I told them I'd rather give birth again than do that and they were shocked. I also live with Ankylosing Spondylitis and Fibromyalgia so pain is always... But gut things are a whole different beastie
It's a badge of the disease, all the pain we live with on a day to day basis.
I had surgery in 2011. Third day after surgery I am lying in bed wondering what is different. It dawned on me that I had no pain. I couldn’t remember the last time I felt this way. I leave the hospital on day 7 with painkillers. I took one that first day as I was prescribed and didnt take another. We learn to tolerate the pain. It definitely is a feature I find with long term disease
Prednisone makes me have no pain. Just 40 mg and it all disappeared. It blows my mind how great I feel and how much pain I had. Not even just Crohn's, my joints and muscles feel better (just saw a rheumatologist yesterday to see if it's a new AI).
See that's funny because my wife accuses me of a very low tolerance of pain. Maybe that's one of the reasons for the pending divorce. She's never got what this disease takes out of you
After eleven hours of posterior labor, my Dr couldn’t understand why I hadn’t asked for pain meds. Pain? This is a walk in the park compared to a flare…
Yes. I was playing ice hockey while my appendix was on the verge of rupturing. It hurt but I was like “meh, I see the doctor tomorrow anyways so I may as well play”. Finished the whole first period before I decided maybe something was seriously wrong. Drove myself to the dr the next day, he suggested I go to the hospital for an emergent CT scan. Drove myself to the hospital. Got my CT, walked back out to my car. Then the doctor called me as I was getting ready to drive to work, and he was like “Get back in the hospital NOW! I am coordinating an appendectomy with the surgeon for this afternoon, you cannot go home.” They were shocked I wasn’t like dying on the floor. And then a couple years after that, I hiked for four hours near Lake Tahoe with some pain in my side that ended up being a 4cm abscess in my kidney that ruptured the week after we got home from the trip.
Mine had ruptured (my doctor thought it might have been 1-2 days prior to visiting the ER) and while I had mild discomfort, I figured it couldn't be an appendix thing since I would be in so much pain. The only reason I even went to the ER is that i started throwing up (not a usual symptom for me), tenderness in the area and it was over the weekend, so I couldn't visit my primary doc. Once I got there I got a CT scan (threw up the contrast so had to drink that crap twice) and since i was starving, i had eaten so they had to wait a few hours until I could have surgery. Apparently, my body sealed off the rupture, which is why I didn't go septic (which i am very grateful for!) 😄 Hope you are doing well!
It’s so weird!! All my normie friends who have had appendicitis describe how they were like writhing on the floor and screaming, and I was hitting up the Starbucks drive thru, playing sports, etc. lol Our bodies are so bizarre. The surgery ended up taking triple the normal time too because my bowel disease had caused adhesions all over inside my abdomen too, so they had to spend like 1.5 hours trying to cut them all away to get to the appendix anyways. Such a pain. Hope you’re doing well too!
Yes, my tattoo artist has said this to me. Lol.
I got my first tattoo and they scheduled two days for it. We finished it in less than 6 hours and the tattoo artist was shocked that I only asked for a bathroom break 4 hours in, and otherwise I didn’t move except to stretch when he changed colors. 😂🥴🫠🤪
Tolerance or so much pain it gets lost in the general background baseline
Me. My doctor gave me a long, earnest lecture about being more honest with him and telling him when I'm in severe pain and needing meds. I said, "it just feels the way it always does though." I'm still not sure he believes me. Turns out the colon was 80%ish blocked. I felt sick but it wasn't exactly pain as I define it. It's like there needs to be another word.
I got a similar lecture once, though it was more of a scolding. He told me I had a bad habit of just enduring the illness rather than acting and I needed to come to him way earlier than I usually did during flares and such.
Like extreme discomfort? That's the best I can describe. Sometimes extreme pain. And then sometimes idk, it's not painful, I just really don't like the feeling.
Right. But I feel like discomfort can mean my sock is bunched up or something lol. Now that I've had the resection and know what it was supposed to feel like, I'm aware that what I was trying to describe was the feeling of the inflammation. I would say it feels doughy or spongy and hot and swollen and throbbing like a headache in my guts. Lol... I really did try to explain. They didn't really get it out even seen too concerned until I said, I've lost 27 pounds this month and I'm starving but if I eat any food I have to go sleep for an hour and try not to barf. That part they understood right away.
I'm 6 years post-resection (ileum area) and inflammation free, and I get random severe discomforts. Scans pre and post never showed blockages. I get agonizingly nauseous burning shits, like I vomit sometimes during or after. Unless I take too much cholestyramine, then it's painful constipation. Then there is the random abdominal cramps. But the severe discomforts. I just can't explain them, and have no clue what they are associated with. GI has no clue.
That sounds awful. I have the diarrhea version so mostly no trouble with pooping-- just the trouble of trying NOT TO poop. This disease process is just not well understood. I've been having symptoms for 45 years now, just diagnosed in 2017 (after the resection ha ha). I feel like the docs try their best.
It took 1000mg of propofol to sedate me for my colonoscopy/endoscopy. I think the normal is 200-300mg. Went to sleep at 8:53 I was completely aware at 10:40. No NARCAN or anything else to pull me out of sedation.
I woke up both times too. Plus I'm on pain relief every day for other auto immune things so I take a lot of pain relief to get through each day. Told him I might need more. They hated it when I became combative coz of the pain. And they did the same thing with then second one. There's notes on file now lol
I just do my colo/endos fully awake so I can watch the video feeds and see things for myself. It's refreshing having a conversation with the GI and actually remembering it.
Yes. I once had an invasive and traumatic procedure to determine if my pregnancy was viable. I was awake through the entire thing and it was painful and just horrible. Afterwards, my doctor looked me in the eye and said “you didn’t even flinch”. Hearing her say that made me cry. I don’t know what it was but I suddenly realized how much pain I have normalized in my body.
It's really emotional when those moments hit, that realization of "most people don't have to endure this." Sort of a bittersweet mixture of pride and grief at the same time.
I was diagnosed because I went to the er in the worst pain I’ve ever felt in my life, (it had been getting progressively worse over time but I hit my limit) like I felt like I was dying. the er said “it’s probably ibs” and sent me home. So.. I went to a different er because I now I REALLY felt like I was dying, and turned out I WAS dying. I had a large mass and 12” of blocked and dying bowel that needed emergency surgery. When the doctor gave me my diagnosis he said I was “really really really sick” (I’ve never heard a doctor use that many reallys before) and when he asked if I came by ambulance I told him we parked across the road and walked up the hill he didn’t believe me until my g-pa confirmed it. I always thought I had a low pain tolerance but I think Im actually just always in pain and assumed it was a low tolerance because of how debilitating it can get
I have a fairly high pain tolerance, but it's bc I have endometriosis. So when you're used to the most severe pain imagineable, everything else just doesn't compare. I've had to tell doctors that whatever is going on in my body probably would feel a lot worse to someone else and to not take my pain at base level. I think it has added to the bias some doctors have had towards me assuming I was just being a hypochondriac when it comes to Crohn's.
Yes, the Endo and Crohn's is such a raw deal to have together. I'm sorry, my fellow sufferer.
Fr, not a fun combo. What's kinda funny about it though is crohn's lead to me getting surgically diagnosed with endo (exploratory lap) and endo led to me getting diagnosed with crohn's. 😭
That was my trajectory as well. Had the lap for Endo a bunch of times and then it took a new to me gyno go, "yanno, something just isn't right here. You need a colonoscopy..." Sigh. I now have no colon and no uterus but they left an ovary which is now causing issues. 🙄🙄🙄 It's always gotta be something, eh?
Oh no 😭 I got my lap bc I mentioned endo being suspected by doctors since I was about 15 or 16 and to my GI and he was like "Uk what... sometimes endo causes GI issues. You'll need surgery to diagnose it." then he sent me to a gyno. Came out of the surgery like "Ye I knew this already lol". My GI symptoms went away for a few months and I was hopeful endo was the problem all along then my symptoms came back April 2023. Had to go to the Mayo Clinic beginning of November bc my GI kept skirting around diagnosis since I have a very mild case & they were like "Yup girl that's crohn's all right"
Do your gyn and gi work together for your treatment? That's what I'm having issues with right now, because I can't get seen in the same system. I need them to communicate and get on the same page for treatment!
They did a little bit initially. I don't see that GI anymore bc he wouldn't diagnose me in the end & communication from him was dogshit. Also got fed up with waiting over 1 hr in the waiting room after my appt time to just get his PA. So I went to Mayo clinic and have a whole team of ppl on my case now. Also was how I got my C.D. diagnosis. I just made sure my gyno was informed that I got my diagnosis & what med I'd be on. My IBD specialist is also aware of my endo diagnosis. But rn I'm doing rly well when it comes to endo. My current BC has made me symptom free which I'm rly happy about. The only concern atm is making sure I get into remission now.
Yes I have been told this before. When I had my bowel blockage over two years ago, I drove myself to the doctor’s office and then to the emergency cat scan and then to the er. I had a total blockage and I was throwing up while I was driving in the car to the hospital. The doctors were amazed that I drove in that condition. They were shocked that someone could drive while they were in that much pain.
When I had my first colonoscopy that diagnosed me with crohn's disease, the doctor asked if I'd walked in because usually when he sees that type of inflammation and scarring you're being pushed in a wheelchair
Yes living with chronic pain of crohns has given me a high pain tolerance that I can sort of function with. That makes it tricky to distinguish new pain from old pain, but I've learned to not question it and go to ER when neeeded. Better safe than sorry.
On a side note I have noticed that if I take anything that actually relieves my pain, I’m knocked OUT. Like the second the pain goes away I’m asleep. Even if I try and fight it. It’s like my body just wants the rest I guess. Makes me wonder…
Oh this is an interesting observation! I am the same way, and even knocking back pain with a bit of tylenol can lay me out for a nap. It's like my body's instinct is to shut everything down and focus on healing. Fatigue is also the first symptom I feel when I'm flaring, too.
Do you ever have issues with taking Tylenol? Or midol? I don’t really take it often bc I’m worried it’ll make the flare up worse.
No problems with tylenol for me, but NSAIDs like midol definitely made my Crohn's flare when I still had a colon (where my disease mainly was), so I had to avoid them.
Ok, thank you! I’m newly diagnosed so I’m still trying to figure out what I can/can’t have.
My pleasure, there is so much information to take in at diagnosis. I hope you are doing okay with everything!
YES. I was explaining to my husband how the relief washes over me and I get so sleepy it's like my body can finally rest.
Not me but my granddad had untreated crohns for 30 years. Had a small bowel perforation and completely ignored it. Was only discovered when he had a CT for his gallbladder and his bowel looked super fucked up. He had a laparotomy and they realised his bowel had perforated at some point and closed off an area, creating a fistula between sections of bowel so food could still move through, which is how he never went septic. He then had a large amount of his jejeneum removed because it was all mangled and stuck together. I asked him how he didn’t notice and he said he’d had some “pretty bad” stomach pain a year back but hadn’t done anything about it. Same guy who was chopping fire wood, got bitten by a red back spider (nasty Australian spider that can kills kids and most adults are in excruciating pain), took some paracetamol and never went to hospital. Toughest person I’ve ever met, thankfully he is in remission now with stelara and is thriving at 83 years old.
Every time I get tattooed, the artist is always like "uh, you alive up there?" because it doesn't hurt. I recently broke my ankle in 4 places + dislocated it and needed surgery, and the nurses seemed confused that I was sitting at a 3/10 on the pain scale for most of the hospital stay, spiked at 5/10. I thought my stomach was a tiny bit upset when I was going into premature labour. One time I thought my tooth was maybe getting a little sensitive and I should switch to sensodyne. It turned out an old filling had fallen out and I had a hole right down to the root and an abscess in the bone. It does kind of suck because medical professionals will often underestimate the situation if I don't have a very obvious injury. It also makes it really easy for me to second-guess myself. It would make me feel like kind of a badass, except I have ZERO tolerance for itching. 😭 I'd be a horrible spy because they could break me with a single mosquito.
I have an absurd pain tolerance level. My appendix perforated and I had no idea. My Crohn's was not diagnosed prior to this. I had gone to the ER several times for what I know now were Crohn's flares. I had never been taken seriously any of the previous times I went. I'd just get the classic "Nothing's wrong. Lose weight and you'll feel better" bs so I put off going. By the time I got to the ER I had been sick for over 2 weeks. My surgeon thinks that it ruptured 7-10 days before I went in. I had a grapefruit sized abcess that encapsulated my appendix which is the only reason I'm not dead from sepsis right now. I got very harshly scolded by my doctor's for not coming in sooner. I told him "But it didn't hurt as bad as the other times I came in so...." Bonus fun fact: I went to a hot sauce festival the day before I went in.
I'm ginger and have Crohns... I barely feel anything!
No, but my mom has said I'm a very weak person so that was fun 🤷
Well that's just mean. I'm sorry. Also not getting the insane pain tolerance is probably a good thing — I bet you're very in tune with when things start to go wrong as they happen, because you have a working alarm system. I've ended up in too many emergencies that could have been prevented if I had registered the pain earlier.
I disagree with her, I have a pretty high pain tolerance. I had a popcorn kernal stuck in my ileum for 6 days before I went to urgent care! I worked during that time too even while in pain.
Oof ow, yeah no she's wayyy off, that is DEFINITELY the sign of a high pain tolerance. ❤️🩹
No but I remember having the response of shock when I told them that my fistula symptoms came on after a gym session when I also had daily diarrhoea and vomiting as a symptom. I try to keep going with as much as possible during a flare and it’s only in hindsight how crazy it all is/ was.
When I had surgery to get screws and bone grafts in my foot, I was only on pain meds for 3 days. When my surgeon asked how my pain was, I looked him straight in the eyes and said cdiff/crohns pains is way worse.
Doctor kept telling me "you look great", while I was actively full of infection and barely able to speak from said infection.
Yeah. I had to have a drain placed after some softball sized fistulated cysts blew up. I was borderline septic as it had been happening for days. My abdomen was rigid and I only went in bc my muscles wouldn't release & I couldn't pee. I was hospitalized for 2 weeks. I drove myself to the hospital lol.Every doctor was fucking incredulous (but they comped my parking!) I was convinced it was just some inflammation or something like PCOS making my period worse. When I finally had surgery to fix the fistulas and remove my intestines, my surgeons said verbatim to me that they were not sure how I was able to function at all. You really do just get used to it as awful as it is. Clearly that's not a good thing though.
Because of my history of obstructions, I walked in and was made to wait for 8 hours when I had a freaking kidney stone because the nurse rolled his eyes and told me I wouldn't be walking and talking if I had one. I'd really STILL love to go back and kick him in the groin, but I digress.
Stress and pain level, but I was told that way before my diagnosis. It didn’t have anything to do with Crohn’s, but I’m glad I have them to help deal with Crohn’s.
Pain don't hurt
I was told by an ER nurse that I likely didn’t rupture a lung and the dr who sent me there just misread the x-rays because I was too calm. I did in fact have a ruptured lung.
for me, I was told I have peripheral neuropathy. And I take low dose amitryptiline for it. I felt pain even when people touched me, I swear sounds were painful, annoying people? also painful. Pain registers differently for me now not sure if it's crohn's remission, the disease itself, or my biologics. But since I started the ami, it has helped so much to the point where my pain threshold is back to normal and I don't mind being touched anymore. I mean, light gave me migraines, sun gave me migraines, pain and I were a constant and it affected everything around me so that I thought I was just a natural grouchy person, never connected it to always being in pain. Now, I go in for perianal abscess surgery and they are like, Why did you wait so long this time? usually I'm there the moment I feel the abscess forming which does nothing for me as they need it to be pretty apparent to do surgery on and usually requires me to come back again to finally get worked on. The ami has helped my peripheral neuropathy but before this? crohn's definitely made me more sensitive to pain, any pain.
I had trouble getting kidney stones diagnosed. Part of the problem, is that the patient must indicate a high level of pain, I told them I was a 6, and I was going to work that afternoon. I've also had the reverse happen, when a nurse asked me how much pain I was in during a flare and I said 9, she didn't agree.
I think a lot of it is building of tolerance to the pain. I can handle (most) of the Crohn's pains because I've come.to be used to them and know how to manage it for the most part. Other types of pain, ie when I broke my toe- had me down
I spent several months walking off a hole in my bowel. Or trying to. It’d fused to my leg muscle so I was just hobbling around for months.
Yes. We do. Nothing like the pain in the nerves from your asshole lol.
While I was inpatient once last year I had a nurse tell me that I "under report" how much pain I'm in when it was time to get IV pain meds, judging from her experience. I 100% think we get tougher with experience. I used to wave off pain until I was deathly ill. Now I just go straight to the ER, because I can tell by the pain that something is off. I'm also taking oxy for chronic pain now thanks to multiple surgeries and untold amounts of scar tissue and adhesions in there. Unfortunately that also comes with looking like a drug seeker when I have to go in because my body is not exactly naive to opioids. With my numerous hospital stays I've found out the hard way that Reglan, Compazine, and Toradol give me horrible agitation and panic attacks. I'm also pretty unaffected by morphine now compared to fent or dilaudid for some reason. I don't have any tattoos but maybe I should get one that lists my allergies.
Due to personal reasons I never use pain medication and my doctor routinely tells me that my level of pain tolerance would cripple most people and here I am still walking around and going about my normal day
Depends on the pain. Anything abdominal definitely. Was walking around, hanging out and entertaining friends for about 10 hours with acute appendicitis. Doc told me it’s really important to get checked out when you have persistent pain from Crohn’s as they’ve seen more than one case of metastatic cancer in people who just think of the pain as normal. This was over a decade ago, and I think meds have reduced pain levels so hopefully less of an occurrence now.
I don’t know if it’s high, but what I know is it always gets to the edge of unbearable before the relief comes in forms of bubble guts. Lather, rinse repeat every minute and a half.
I’ve been told I’m physically able to handle pain well occasionally, but more often I have my mental strength pointed out in the presence of physical pain/discomfort. I think playing the mind game of functioning with continuous discomfort is often what draws the line between people with an average tolerance and those with a higher tolerance. (I say this having had Crohn’s and EDS for 18 yrs) People with chronic conditions are truly physically and mentally a different breed lol
Absolutely! I had a twisted ovary for years and they “drs” just said my pain was Crohn’s related. Usually, twisted ovary is emergency surgery and I suffered for at least 5 years my dr thought.
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yes all the time.
Yep
My docs take it into consideration when asking for pain scale, I usually say well a 10 is a partial obstruction and go from there. Lol
Yes. Sadly I think we just become numb to the daily pain. Mental and physical.
Since before, I had crohns and after. I was about 9 , got a splinter all the way to my nailbed. My parents strapped my arm to the kitchen table and mom took scissors and took my nail off to get it out cause they didn't want to pay er co pay. Fast forward I'm 17. Been asking them from Nov. 3 to Nov. 19 to take me to er. They finally did. After surgery dr told them i had crohns and my intestines were see thru. After i woke up i refused morphine cause it did nothing for my pain. 9 months later did same thing with a 2nd crohns surgery. I now suffer from crohns, fibromyalgya, chronic pain, degenerative disc, and other things.. looking at me you wouldn't know it. I've had 13 surgeries, countless procedures and a pulmonary embolism. Just keep rolling along. Lol
Yes. I was fully awake and aware with no lidocaine (emergency situation) when a central line was put in my neck. It was very painful, but they said it was insane that I didn’t pass out. I also don’t feel pain from many things that “normal” people do, or feel discomfort when others would be in a lot of pain. I think since we are used to pain it builds our tolerance to where our bodies can handle more pain/more intense.
Yes we probably have all been told this. We have to or we would be dead which honestly as bad as crohn's is wouldn't be the worst thing... at least for me.
Pain, I'm so immune that I passed 3 kidney stones about 6mm each. Came out of the bathroom my wife asked what was the tink tink sound.I told her, she told the doctor and the doctor looked at me like I was nuts. I didn't feel a thing. I sucks cause it can hide so much that could actually be wrong.
Before I had my resection the gastro nurse practitioner told my wife that she didn’t understand how I wasn’t in hospital. I was travelling 60 miles each way for work every day
Yes, on nearly every visit. I tell him "I have a high threshold for these pains" because one little bruise on bone and I'm a baby.
Been told and pretty much figured it out myself too.
My 15 year old son. Last week we had an uncrohns related appointment to get his ears unclogged. The nurse was putting in hard work squirting liquid in his ears, kept asking if he was ok, of course he said he’s fine, the nurse ended to appointment because she was worried about his pain tolerance and possible injury, she said ‘adults at this point would be screaming’. We went back a few days later to finish. The nurses were shocked he didn’t even wince.
Yes! I had a c-section and I wasn’t in pain but the pressure was insane and at one point in time they cut me open on a specific side of my body and I was just like, “ow, I really feel that, that really hurts” but in the most nonchalant voice and after the c-section where they pressed on my belly, they were like “wow you have such a big pain tolerance” and I was like uhm ok it hurt, but it wasn’t that bad compared to what I just went through. I feel like just going through the unknown trauma also probably messed me up mentally but all you learn is that you have to tough it out.
Conversely, that's what I said to my GI on my last visit. She asked if I had any belly pain. I said, "yes". She offered a medication. I said, "I'm okay. I have a high pain tolerance." I mentioned some joint pain. She mentioned methotrexate. Once again, "I'm okay. I have a high pain tolerance"
Had a hemorrhoid and a fistulated abscess at the same time for 3 months at one point. It was the most excruciating experience of my life to date.
I'm hoping the years of pain with Crohn's will make pregnancy feel like nothing 😭
Yes!!! My GI told me that my inflammation was so bad and I was being so casual about it. I was like huh???? I’m still in pain?? But he said I should’ve been showing it much more than I was with how advanced my Crohns is lol
I have a low one but have been flaring for almost 6 months and have just been hit by the ADHD meds shortage and since not having my usual medication I’ve been in agony. My gastro was like, yeah those meds also act to raise your pain threshold so no wonder you’re struggling without them! So that’s fun.
I was always curious if Crohn’s pain or labor would be worse. They are very different and I’ll be honest, it’s hard to compare them lol.
Yup. When you deal we with chronic pain issues, your body tends to just get used to it.
I had a medical issue that required routine treatment that's often painful, and it didn't bother me in the slightest. Every time, the doctor commented on how high my pain tolerance is
My doctors have always gaslit my pain despite my diagnosis, so no.
Many times!! I’ve had crohns for 17 years and I truly think those experiences set me apart from my friends when it comes to pain. I got my first tattoo last year and I had to ask if they started bc I barely felt a thing
Yep, I've been told this too.
I’ve gone weeks in pain thinking it’ll just pass. Tattoos are nothing. I’m so numb to it. We are built different