# What does an intestinal perforation feel like



## David

While perforations are reasonably rare, they are one of the most dangerous potential complications of having Inflammatory Bowel Disease.  I think it would be incredibly useful if those of you who have had a perforation can describe what it felt like so others might avoid "toughing it out".  For example, was anything different in the days leading up to the perforation?  What did it feel like as you were about to perforate?  Did it feel less painful after the perforation despite the fact your intestinal contests were spilling into your cavities and starting a massive infection?  The more details you're willing to provide, the better.  Thank you!

If you have had an intestinal blockage or obstruction, please share your account here.


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## robbo87

My perforation wasn't exactly caused by my crohns disease so it wasn't something that kind of happened slowly  so my experience may not exactly be much use to someone who may feel like its about to happen as I didnt go through that part. Mine caused by being assaulted and taking numerous blows to my abdomen. The hole was about 2 inches in diameter and the pain was like nothing I have ever felt before, Absolutely agonising pain, which came instantly from the minute I fell on the floor.  I literally couldn't move from being lied on my back without wanting to scream. I had fecal peritonitis and to say i was burning up would be an understatement, For 2 months after my original emergency op I couldnt really lift myself up without abdominal pain and i still have pain in a cavity in my back from where the intestinal contents had caused a lot of inflammation, The anastomosis didn't heal so this particular area ended up with an psoas abcess.

I wouldn't wish a perforation on anybody and if you have the slightest idea that something is wrong, im guessing a main symptom would be a high temp and sore stomach? then get it checked out.


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## chrisnsteph1022

This is a great idea. Can we do the same for what a blockage feels like? I've had neither, and always wondered.


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## Crohn's 35

Good thread David, would save alot of my fingers lol. If you want to know about full bowel or even partical bowel blockages I have had both.  Ain't pretty.


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## David

chrisnsteph1022 said:


> This is a great idea. Can we do the same for what a blockage feels like? I've had neither, and always wondered.


Great idea, I've created a thread for intestinal blockages.  Partial blockage accounts are welcome as well.


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## Becca1991

My Mum's friend in Texas had a bowel perforation in August 2011 at the age of 54, shes had one before apparently but that was when she was in her 20's. She had emergency surgery and a week later got to go home to her daugthers house only to be sent back with a intestinal blockage, had surgery again and put back into the ICU to again have a total of 4-5 surgeries out of 7 in one month due to infections and more perforations but ended up passing away in September 2011. Was very sad but from what she told my mum is that the pain hit her suddenly and couldnt move she had to crawl to get to the phone to ring her daugther who lived next door to take her to the hospital where she had her sigmod colon taken out and given a colostomy.
Miss her alot. She didn't have Inflammatory Bowel Disease.


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## DustyKat

When Sarah's bowel perforated, although ill at the time, her change of symptoms were noticeable...
Her pain intensified and nothing we had at home was able to relieve it...she was crying with the pain. 
The pain changed from being localised to generalised abdominal pain, no doubt from the peritonitis. 
She became febrile and continually spiked a fever from a constant temperature of about 38c (100.4). 
She started vomiting and was unable to hold anything down. 

I don't know if the above symptoms were as a result of a perforated bowel or a long standing perforated bowel with an abscess that burst. I had my suspicions of the the latter due to the amount of pus that was present but I am probably more convinced of the latter now because of Matt. 

It is possible to have a microperforation and not have the extreme symptoms Sarah did. Matt's symptoms were contained to localised pain, although that pain was intense, one vomit and no temperature (he was on Pred and Imuran and they most likely masked his symptoms) but his bloods showed a very different story. 

Dusty. xxx


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## littlemissh

I had a perforated duodenum and peritonitis from one of the ulcers I have in my duodenum a couple of weeks ago. 
I had had epigastric (mid just below rib cage) pain increasing over a few weeks but it was tolerable, I knew I had ulcers in my stomach and duodenum ( thought to be gastroduodenal crohn's) so just kept taking my meds. The day before it got really bad, my pain started increasing. I had a gastro appt and he did suggest admission but I was not keen...toughing it out..not always a good idea.
The following day in the morning I had increasingly severe spasms of pain where I couldn't talk, move or anything - rang gi who said would arrange a bed during that day.Then within a couple of hours these spasms turned into a continual relentless indescribable pain...at which point I asked by husband to take me to casualty (the ED as it is now known).
I couldn't stand up straight and at hospital couldn't walk,talk, breathe more than tiny breaths as it hurt my abdo too much. I can remember being taken to resus...next thing I'm on ITU.
It was plainly obvious to me that something very different and very bad was happening...but perhaps should have considered going in the day before. Apparently you could actually shine a light through the perforation due to its size and my intestines 'were swimming in intestinal contents' according to the surgeon.
Hope that doesn't happen again.


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## Norseman

I had a perforated ileum.

I had some pains in the days before. I was probably flaring badly, buty did not know I had chrons at the time. 

Then came enough pain to send me home from a social event. And at home i had a fever...when the worst of the fever shakes subsided I was hit by severe pain, much much worse than anything I had before. 

I was scared my appendix was rupturing as the pain was on that side. So I was taken to a nearby clinic that could do little but give me something for the intense pains that where hitting me in waves, but never really leaving.

I was treated for pain but the doctors did not belive it was my appendix and sent me home after a couple of days, as most of the pains had subsided.

Then they hit again, worse than before. So back to hospital This time they admitted me for observation as they called it, and while being prepped for a ultra sound scan, the mother of all pain hit me. It probably feels like that being stabbed in the guts.  And I was being rushed to the operating theatre...everyone still beliveing it was my appendix....woke up hours later with a scar from just above my navel and down to the top of my pubic hair, and one where the appendix is.

Released a week later, only to be admitted a week later after a hellish night where I was screaming with pain. This was out in the sticks in Thailand. We had no car, nobody had one, and there where no ambuilances.  Was taken to hospital in the morning when my wife finally manged to persuade neighbour to take me in.

Turned out the sutures in the ielum had ripped open...so now I was fighting peritonitis....for another month where they needed two drainage tubes in my guts to get out all the puss from the infection. . Lost about 30 kilos (they are back with avengeance....).


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## lari

Before I was diagnosed with crohns I was told I had IBS for a few years so I was used to belly pain and cramps.  One night about an hour after dinner I started getting a bad cramp on my left side that felt like a bad gas pain.  As an hour went by it became sooo painful I had my friend call 911 to go to the E.R.  there I begged for pain meds as it was as bad or worse than the kidney stone I had before.  I couldn't drink the stuff for the CT scan so the literally rammed the nose tube down and that's the last I remember til the surgeon woke me up.  I had to have emergency bowel reaection and colostomy.  I was septic and it was a close call on those antibiotics finally pulling me thru.  A perforation for me was extreme pain like nothing before or since.  Go straight to the hospital!


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## Mister_Hotspur

Mine, like Robbo's was due to blunt trauma (knee in the abs). Surgeon said it was about the size of a 50p and it's likely there was a large ulcer which had already weakened the bowel. I didn't think about it much at the time but during the few weeks before my bowel habits changed a bit, going during the night etc.

The perforation itself was the most pain I've ever felt and I have a high tolerance to pain, initially I thought I was winded or had punctured a lung as couldnt catch my breath. I also felt really nauseous at the time and not being able to find any way of pain relief, the pain just got worse. You'll know about it if you have a large perforation to be honest but if it's a micro perforation I think you have to watch for fever and nausea.


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## DJW

I had one last summer. Thankfully I was already in the hospital. I woke up in the morning running a fever and feeling lousy. I was in the OR before I felt any pain. I was in for a month after surgery and spent time in the ICU from a blood infection. A bit touch and go for a few days.


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## Josephine

Has anyone had dull sudden pain below ribs but pain so intense that take your breath way? then subside but then go away?


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## durwardian

Sometimes like a rubber band snapping. Last time I almost went to the ER. But I felt better. Doc was the next day. He mainly wanted me to watch what I pass after that, any fever, and ordered a CT scan.


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## durwardian

Scan came out ok


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## LemSat87

when I had crohns flares, it would be a come and go pain throughout the day.  So one day I was at work and I got this very sharp abdominal pain that wouldn't subside or go away at all, so I knew something was up.  

Went to the hospital and they wanted to do a CT scan.  From the time I started getting prepped for the scan to the time I got admitted my temp had gone up 3.5 degrees and started having issues with breathing.  Needless to say I was in surgery short time later. 

So for me extremely sharp pain and shortness of breath.  No good!


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## durwardian

The few that i have had were more noticeable from my eyes becoming scratchy, body aches...


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## Nancye50

I had a micro perforation with an abscess just starting. I had the slightly elevated temps, intermittent pain (severe cramps as well as dull aches along ribs and up my back) and most of my abdomen was very tender. Starting meds and going to liquids only brought relief in a few days into my hospital stay.


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## Ozark Hill Billy

My small intestine, in the ileum, perforated labor day weekend '98. I had been in moderate pain for a month or more prior. In that month, I had a colonoscopy and full barium tests that showed nothing conclusive. I was also about 2 to 3 weeks into a round of prednisone and continued a previous script of Pentasa & Questran. 

Things turned really bad about 5 days after the barium tests. I went home from work and found the only suitable position was sitting in a straight-back lawn chair on the deck. My daughter was visiting and recommended I call the doc again but I was stubborn and thought that if I sat real still, it might pass. So that's where I spent the night, sitting on the deck. The pain got so bad, abdomen wide, that I bent the arms on the lawn chair overnite. When the sun came up, I reached back to the deck door and started knocking. My daughter helped me walk hunched over to the car & drove me to the emergency room 15 miles away. Felt every crack in the road laying sideways in fetal position on a reclined seat. In the waiting area at the ER, a nurse who was rushing by stopped dead in her tracks when she got 3 feet past me, turned around and looked at me and said "your sick!". Apparently my color was gray / pale and I think she could see it in my face as I supported myself standing with one hand on the back of a couch. Really thought that if I tried to move, it was my last step. Because I waited so long I was going into septic shock from the contamination that entered my abdomen.

Moral of the story... There is no gain in waiting out pain. Watch for other signs as well such as fever, bloating and skin color change. If your tests come back inconclusive, yet you know there is a major change, insist that they look a lot closer. You know your body better than anyone, especially if there is a major turn of events. And if you can't convince your doc that you do, find a good doctor if you can and get a second opinion.


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## dizzi2684

Ozark 
This sounds exactly like what I'm going through right now. About a month ago I forced myself to go to the er after it took me 5 min to get up from the couch to get her chicken nuggets I was crying it hurt sooo much. She was crying to because she was scared. I had had moderate pain for about three weeks prior. I work midnight shift and was regularly vomiting. That night I was scared if I went to sleep I wouldn't wake up. My mom told me to go to the ER. So I finally did. Doc pressed on my stomach and the pain was so severe I instantly started crying in pain. They rushed me to get CT scan. Results showed gall stones, crohns inflammation in ilieum. Sent me on my way with prednisone and pain killers. I went to my GI the next day and he scheduled colonoscopy and increased prednisone. Colonoscopy was two weeks later pain was still intense. Results show scar tissue in ilieum and prednisone isn't helping with the inflammation. I'm still waiting for the pain to go away. And actually last couple days it's getting super intense again. It hurts to walk straight. Pain from right lower abdomen right down to pelvic area. Sorry it's just good to see someone with symptoms close to mine. This being my first flare up since I found out I had it in 2010 and I never have had this happen before. I'm just use to the diarrhea. But now it's just constipation.


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## Ozark Hill Billy

Dizzi, 
You do sound very similar to me now, and also back when I perforated. I may be wrong, but it seems that they have difficulty identifying the full extent of problems active in the ileum, where my scarring and inflammation is located as well now and back when I perforated. In my case the scope will not reach past the ileocecal valve and all evidence of problems in the ileum is from the small bowel follow through (sbft) imaging. And almost 16 years ago when I perforated, even the sbft didn't show "anything conclusive" as late as a week before perforating. I think imaging is a lot more refined now though. But certainly not perfect in our area of disease.

They kept throwing prednisone at me as well which helps with inflammation and maybe spasms, although does not help scarring. But that is the best they could do then, and it seems that is the same thing they are treating us with now. I'm having the same symptoms, tests, treatments, reactions ect. now as back then. And sounds the same as you. Prednisone did take away the 15 urgent trips to the john with D. Now it's just the opposite and have extreme constipation and going only every 4 - 5 days if lucky. And then it's like passing boulders some times. And like you, I can certainly feel the pain in the lower right quadrant and at times spiking out to the pelvic area.

From past experience, all I can tell you is watch your temperature along with all the other symptoms. If my temp gets anywhere around 101+, in a lot of pain, bloating and ill feeling, I will be heading for the ER. Of course though by that time it's possible it's already leaking into the abdomen. And believe my past experience, that is not good and it takes twice as long to recover after surgery. It can be life threatening if you wait too long and try to tough it out. When I finally went they told me afterwards that I was close to having organs shut down from the septic shock. I replied..."tried to tell you doc but remember, there was nothing conclusive!"...


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## dizzi2684

Yes I'm dealing with constipation now. I was unsure if it was from the prednisone or from the norco they have me taking for pain. I'll keep my temperature in mind in the future. I didn't have a temp when I went to the ER last. I wish they'd put me on medicine that works, but it's a waiting game to see what my insurance will approve. They are trying for cimzia. So we will see. Thank you for the reply.


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## F.u.Crohns

Perforate small intestine which was a quarter size hole. The pain was unreal, couldn't move and felt like something was poking against my rib cage area. Access form and I nhad surgery to remove a total of 6 inch of intestine.


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## sasz11

Perforation is so much worse to crohns. The pain was undescrible. Although having my first flare up while being diagnosed. A month later getting rushed back into hospital and two weeks later lead to a blockage. Because of the timing at the weekend which was a Friday I was due to have an op the Monday. The same night my perforation in my ileum came when I was sleeping I woke up in so much pain which had move and I was vomiting and sweating buckets. The on call doctors didn't know what to do. 8 hours later after my mum begging someone to help someone finally did. Well he saved my life because I was on shut down. I woke up three days later in intensive care. Thank god for the man who realised else I wouldn't be here. Although the scar is horrible. A year on and I lead a normal life. I had 44cm of my intestines removed due to scaring and I woke up without a bag.


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## D Bergy

I had a stricture which felt like my stomach would stop working. Food would sit there and make me nauseated and if it did not move the food down in a hour, I would puke it up. 

When I had fistulas the first indication I had was lower back pain.  The fistula attached itself to the soaz muscle and an infection took over. Thatay be different than a perforation but I would guess an infection would result either way of left untreated.  

Dan


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## hbrekkaas

My bowel perforated last May, less then 2 months after diagnosis and 4 days before I has a resection surgery scheduled. It was horrible. I knew we were going to be going to the ER that night - I'd been in repeatedly for abscesses they couldn't get under control and the pain was familiar. I went to bed around 10 and woke up at midnight, made it from my bed to the couch and couldn't move. I had to use the washroom and ended up sliding off the couch and crawling to the bathroom, then yelling for my husband to wake up. Every movement was excruciating. Front, sides, back, everywhere.  Everything hurt - moving, breathing....it didn't come and go, it was just a steady never ending pain. 

Ended up in ICU, and had the resection where they found 2 abscesses, the perforation, a fistula and a meckels diverticulum.


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## simonsmom

My Gastric Perforation was caused by a stomach ulcer. I didnt know I had an ulcer but looking back there were clues. I had been losing weight & didnt feel quite right. I occasionally had a slight growly/burning sensation in my abdomen but it only lasted maybe 15 seconds. I was in bed laying on my stomach & reading a book. I rolled over to go to sleep and that's when it happened. An instant internal pain somewhere sort of behind the belly button area. I fought it was terrible cramp and leaped out of bed. I couldnt stand up straight and the pain was so bad that I literally was crying out. I couldnt stand up straight and was pacing around the bed waiting for the pain to subside. It was constant & was a 10 on the pain scale. I looked in the mirror and realised that my entire mid section was clenched. I could see muscles Ive never seen before. That was when I realised it could be more serious than cramp. I think about 5 minutes went past (I have no concept of time that night) and the pain had radiated up from my abdomen to my chest and neck & I was finding it hard to breathe. I was taking very shallow breathes as breathing hurt. At that stage I thought maybe I was having a heart attack. The pain had increased to the point I was on my hands and knees. I called an ambulance. They arrived about 20 minutes later (again Im not sure). I have 2 dogs so I forced myself to move around and met the ambulance outside. In the ambulance they tried to make me lay down on my back but it was utterly impossible. I could sit up hunched over but standing hunched was most comfortable. At that stage I began to sweat and felt very clammy. They gave me morphine but it didnt do anything. The paramedic said my blood pressure was extremely low & I was starting to feel unsteady on my feet. With more morphine I was able to lay down but it was still excruciatingly painful. I would guess that it took about 30 minutes in the ambulance before I could lay down? The journey was short - maybe 10 minutes. By the time we arrived, the pain was under control and I was back to thinking it was just cramps. I dont remember too much about what happened at the hospital. I know that within a short time the pain meds were starting to wear off and I was once again unable to lay down. I was standing hunched over the bed. They tried to give me an oral med - not sure what it was but that was agony and the pain was right back to the initial pain. I had an ECG then a chest X Ray followed by a CT Scan. They knew there was a perforation as I had air under my diaphragm. But they werent sure if it was stomach or bowel. My stomach felt very hard when they pressed it. I could not tell which area hurt because it hurt everywhere in equal amount. From my chest to my pubic area was in pain. I had a long weight for surgery....there had been a serious multi car accident and the Theaters & surgeons were full. The perforation happened around 1am. At around 8am I woke up in Critical Care. I am not sure what time the operation had been but Im guessing around 6am? There was a period after the initial first few hours of pain where the pain subsided & I may have even slept? I'm not sure. It may have been that I was getting a lot of pain meds? I don't know. I was told I had an 8mm hole.


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## UnXmas

My small intestine perforated after becoming blocked. I'd been admitted to hospital with the blockage - which caused stomach pain and my stomach bloated, and my stoma stopped working, but they were aspirating my stomach with an NG tube and I had painkillers, so it wasn't unbearable. The surgeon was dithering on whether to operate and fix the blockage. When they x rayed me and it suggested perfortion, she decided to operate. I was very unwell afterwards, and only have snippets of memory from the days before and after the surgery, so I really don't remember what the perforation felt like. Which makes this a pretty useless thread given that David's post asks for details.  I'm just drawing blanks. I don't think I was told it had perforated until afterwards. I guess my lack of memory is the most significant thing here: it signifies that I was very unwell and had a lot of meds. The surgery fixed the perforation. I was in Intensive Care afterwards, and had complications in recovery. I don't remember much pain being involved. I never vomitted. I know I was hallucinating a lot and kept getting confused about where I was and what was going on.


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## Edwinsaldivar0228

I had the same thing happen but during a soccer game I got kneed in the stomach, it was the worst pain I had ever felt, like I was getting stabbed constantly while someone was lighting it on fire. I had 16 cm of intestine removed and was in the hospital for about a week. The surgeon said I was close to dying since my organs were starting to absorb the toxic fluids from my intestines.


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## eleanor_rigby

Does anyone know how often those of us with perforating Crohn's can expect to get a perforation?


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## littlemissh

I don't know the figures. I have had 2. One in Nov 2011 - duodenal, one in september 2015- jejunum.
Perhaps it is an autumnal phenomenon for me!

I really hope it doesn't happen again, so painful.


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## eleanor_rigby

Can we not have a support group for those who have experienced perforations?


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