What Does The Pain Feel Like?

[jamilea]

For me, it feels like waves of pain coming and going, like contractions of some sort. It feels as if something is constricting my stomach so tightly, feels like it's going to explode. My stomach blows up like a balloon. My pain is left, lower side. I have to scream and cry just to deal with it. It starts off with waves of pain coming and going; the episode time frames being further apart, and then develops into almost a constant coming and going. It's SO painful!!!! I get extremely nauseous and feel the need to pass out. It's the sharpest, searing pain I've ever felt in my life, like a knife going in me and being twisted in my guts.

When it's all over, after getting a pain shot and prescriptions for pred and hydrocodone at the ER, I usually have a bad bout of diarrhea, not bloody followed by soreness for days, joint pain and fatigue and slight pain for a week or more after.

Is that a relapse or a flair of some sort? What do you call it when that happens? I'm confused.

What's it like for everyone else? Just want to know I'm not alone.

 

[Jennifer]

Sounds like your current flare isn't quite under control. Even though we're taking medication and generally feel ok or good for a little while, every now and then things spiral out of control and it could be related to what you ate, how much you ate or maybe the disease itself has spread or gotten worse in one area. The only way to really tell why this happens is to have regular tests done that show what's going on on the inside. Blood work shows inflammation etc but doesn't show where or how bad really. When was the last time you had a scope or any other tests done? What were your results?

When I'm in a flare I can have random waves of pain here and there but it usually doesn't send me to the hospital. If this is a common occurrence then it sounds like the flare isn't under control and you may need another treatment option.

 

[soretum]

thats what my pain is like, crampy and down the left....I have chron's colitis so inflammation in the same sort of area

 

[AndiGirl]

I have different types of pain at different times. When I'm in an all out full-blown flare-up, I have a lot of nausea with painful cramping that comes in waves. Sometimes I'll get a stabbing or burning sensation as well. When I'm not in a flare-up I often have a low-key, dull ache on my lower right quadrant. It almost feels like a paper cut in my gut. It's not too painful, but it is annoying.

 

[David]

Keeping in mind that I have Chronic Lymphocytic Colitis, a different form of IBD:

My pain feels like I've eaten crushed glass. If you've ever stepped on a shard of glass, think of stepping on a whole bunch, with your gut.

 

[jamilea]

That's the thing. I don't get diarrhea except for last year, I had it for a week straight. Then, I alternated between that and constipation. Now, I only experience bad constipation which I try to help by taking soluable fiber powder which seems to do the trick most of the time. I only have diarrhea after a pain episode.

I haven't had any blood in my stool since late last year either. Last year, the only thing that showed was colon inflammation in a CT scan, inflammation throughout my rectum compatible with proctitis and something about eurythema, an internal hemmorhoid, and nothing else could be seen because I couldn't finish prep solution; my colonoscopy images were dark and murky so I'm sure they could've missed some things.

This year, I started making sure I stay away from foods high in fat, dairy unless non fat milk from time to time, no red meat period, stay away from spice, raw veggies, raw onions, etc you know the drill. The diet seemed to help for awhile, but I was still getting pain episodes once per month. I haven't been thrown in the hospital like this for almost a year so I don't know.

Not having a doctor definitely sucks but I'm working on it. I really don't know what it is. They say colitis; most think it could be UC, but I haven't gotten anything exactly definitive but a first cousin on my dad's side has UC; my mother has some kind of GI problem but she refuses to see a doc about it. She goes through the same thing as I do kind of.

Right now, I'm feeling much better. I'm able to eat again, back to constipation, but it's easing up a bit in the last day or so. I was finally able to get one out but it has been in pieces and I can't seem to empty all the way, some minor pain, but nothing like the past week and a half.

everything seems to be WAY worse around my menstrual cycle and the CT scan I got a week ago didn't show any inflammation, blood work was normal. I did see that my Monocyte level was 9 something. Usually, on a good blood drawn in the past, it is around 0.32. Anytime I've ever gone to the hospital for these episodes, my monocyte levels do go up to the 9-12 range. So, that has to mean something even though it's still in the normal range?

 

[Nyx]

Have you considered that it might be an OBGYN problem? You mentioned that it happens monthly....does it coincide with your period or ovulation? I'm not denigrating your thoughts so far, but it might be something to consider....

 

[jamilea]

Yes, I have considered OBGYN. Last year, I got a full checkup and I'm completely healthy OBGYN wise. I do have hereditary abnormal ovarian cysts since I was 14 years old that causes pain. I even had an open stomach surgery in 2009 for a rupture on my L ovary where it was bleeding and I almost died. It was an emergency surgery.

I know the pain from cysts VERY well since I've dealt with it for so long. Last ultra sound was clear too. I would try to tie the surgery with my bowel problems except my bowel problems started in 2007.

The episodes don't happen every single month, but just about. They don't occur at the same time every month so it can't be related to my menstrual cycle. I just notice worsening of some symptoms during when my period is coming, but I also have MS.

 

[ThingsHaveChanged]

the squeezy nailed hand works for me, as a norm, but sometimes there is special pain that feels like 2 parts of my insides are being torn apart, thats lay down and stay down pain, once had an attack like that and had to lay down in an alley way in the rain for 20 mins or so, oddly 2 people walked past without so much as a word, go people.

 

[sunflower]

I have been having the squeazy, crampy pain. I have a stricture that is trying to form, and every time I have to pass stool through that narrowed part, I am in agony. I almost pass out. Other times I feel like a dull ache. Sometimes I feel like there is a bunch of gravel in my gut, and just bouncing in the car can be agony. Sometimes the gravel begins to feel like glass, then I know I need to go to the hospital. I have a bunch of inflammation right now, and occasionally I feel like I have a large sausage stuck into my side - right where doc said the inflammation is.

At one time, before I was diagnosed, they blamed my Crohn's pain on endometriosis. And, when my Crohn's is flaring, my period HURTS. But they are NOT the same pain and not in the same spot.

It sounds like you really need to get busy and spend some time working with your doctor. You may want to keep a pain/symptom journal. My doctors have never used monocytes as inflammation markers. Usually it is the Sed rate or the C-Reactive Protein.

I don't always produce a big inflammatory response in my blood in relation to my disease. The first several years, I would tell Doc I was flaring. He would order bloodwork and tell me I wasn't. I would say, well it has been a while since I had a colo so let's look again. Sure enough, I would be having a flare. After that, my sed rate would go up. I feel like I have a bigger inflammatory response to the bowel prep than I do to the Crohn's sometimes.

Anyway - the colonoscopy is key to looking at large bowel disease. Perhaps it is time to try that prep again and give your doc a good look. He also needs to take biopsies, as sometimes that is the only way to differentiate from the different bowel diseases. Everyone's journey is different - just like with MS, no two of us have the same symptoms or manifestations. IBD just happens to have specific manifestations on the cellular level that the doctors can look at.

Good luck, I hope you get your disease in check soon. You HAVE to work with your doctor. I know it is tempting to try it on your own, but it is really not that easy. I know, I tried.

 

[Msselba]

wierd

I was told My crohns is in my illium lower right side of my body but all my pain is uper left side mainly dual , everyone Seems to have pain lower left or lower right. Anyone im lost?

 

[Nico85]

It sounds like a sorer version of the occasional pain i get. I get more of a dull wind pain (usually is trapped wind) which comes and goes, but its manageable and ive never been to hospital with it. I just take a laxitive or a peppermint tablet and it goes.

It sounds like you still have a bit of a flare up going on jamilea.

 

[ThingsHaveChanged]

It sounds like a sorer version of the occasional pain i get. I get more of a dull wind pain (usually is trapped wind) which comes and goes, but its manageable and ive never been to hospital with it. I just take a laxitive or a peppermint tablet and it goes.

It sounds like you still have a bit of a flare up going on jamilea.

quoting nico for truth, peppermint tea/capsules, capsules being more effective, do seem to have a use/

 

[SarahAnne]

Keeping in mind that I have Chronic Lymphocytic Colitis, a different form of IBD:

My pain feels like I've eaten crushed glass. If you've ever stepped on a shard of glass, think of stepping on a whole bunch, with your gut.

That is exactly how I describe my pain. Every time I go to the ER, and they ask what kind of pain it is, I tell them it's like I drank a shake of ground glass and razor blades that's ripping up my insides.

I am currently in a flare now, and it gets SO MUCH WORSE the week before my period. I am about to go on the Pill, in hopes that regulating my hormones will ease up the Crohn's. My diarrhea is is twice as bad the week before, and I don't have any OBGYN probs.

My pain is in lower left, I have lots of inflammation. I also just had pancreatitis and the pain from that is similar to the abdominal cramping from the CD.

Good luck with the pain. I find lying down curled up around the heating pad takes some of the edge off.

 

[Saintslsufan]

I feel your pain as well. I tell people it's a pain indescribable so bad . I had a softball size tumor between my colon and liver and had life threatening surgery , they removed the tumor and half of my large intestine and found out I have crohns disease at the age of 20 . After 30 staples down my stomach and months later the pain wasn't as bad so I thought I was going to feel relief. We'll nope , it's been 9 years now since the surgery and have flare ups all the time it is so extremely painful . Sometimes I have to take my clothes off and grab the sink next to me and wait sometimes 30 full minutes of extreme pain the feeling as if my stomach is about to burst . Kind of like the movie alien when the little alien pops out the stomach lol . I sweat so bad and after the pain subsides I'm completely worn out , my body feels so drained and I feel weak and feel like I can go to bed even if I just woke up from bed. I can tell you the pain is so bad it will make a grown man cry like a baby and you feel like just kill me or put me to sleep until it's over. So to people who want to know what the pain is like it's so bad you feel like your going to die. I wouldn't wish it on my worst enemy. I know people take medicines and pain killers for the pain but I don't take any medicine, even if I was prescribed the highest pain meds it wouldn't help the internal pain I have ,so unfortunately several times of months I just know a flare up is just around the corner and just have to deal with it . Its sucks because I'm 29 now and only been feeling like this for about 10 years and if I live to say a regular time like 70 years old I will have to deal with the pain for another 40 years which is so stressful. So to the people who have sever crohns I'm with you and support everyone and you have to think like I do and say there will be several flare ups a month but all the other days will be better. Don't let it get you down and take over your life because it is stressful . I hope I answered your question on what it feels like and what we go through so if you have people at your work that has this disease give them a little slack when they call sick into work and can't make it , it's not just a normal sick day it's far beyond that. Good luck to everyone.

 

[fuzzy butterfly]

Hi to all,omg your stories of pain sound so much like what I went through for about 2 yrs :-(.but one day I decided I'd had just about enough of this and took myself to hospital with a packed suitcase and told them I wasn't leaving till they sorted me out. Now I came home 10 days later with an
ileostomy, but I have never looked back, its been reversed now and all has been good so far for last 16/17 mths. Note I'm not saying go get your self an ostomy, I'm just telling my little tale... More power to you all and best wishes..

 

[InstantCoffee]

Depends what I eat. I haven't had any severe reactions for a long time, but peanuts were like digesting glass.

Potatoes gave me terrible cramps like my intestines were being rung out like a wet towel.

Canola oil made me feel like my gut was going to burst, like my small intestines were being blown up like a balloon.

Wheat gave me a fiery burning in my stomach and lower esophagus.

I can't remember what caused it, but I've had knife like pains. I remember laying on my bed one night in the fetal position, semi lucid, staring at the light and the light seemed to be getting darker and lighter, I think my eyes were dilating and undilating from the pain and sleep loss.

Recently if I eat something that causes me indigestion I might get a passing pinching pain in my far left or right gut just behind the area where the abs meet the obliques a little below the belly button and to either side, sometimes further down toward my hip bones.

MSM also causes a severe burning pain in my stomach like wheat. I'm not sure why it's recommended for Crohn's and why it works well for some people but makes me so sick.

 

[buttER]

Does anyone else have a doctor that says that there are no pain receptors in the intestines and therefore pain has to be due to something else, such as IBS? I'm not so, sure seeing as for me more pain=more passing blood.

My pain also feels like glass or a hedgehog in my lower left side, usually before a bm.

When my whole intestine seems to be involved then the only was to describe the pain is as if someone had punched me repeatedly in the stomach, and now it is 1 or 2 days after that, like a big bruise.

 

[fuzzy butterfly]

Hi king of orange, no iv never been told that!!, it may or may not be true but if it is the case,I sure wish Someone would tell our intestines that, so they might be less painful. How can an intestinal disease not cause pain in the intestines??? Baffled here now!!. Best wishes to you and all suffers on out forum..

 

[Ihurt]

There are pain receptors in the intestines as there are nerves that run through the whole digestive tract. I am not sure where your doctor got that info from(pretty scary a doctor is saying that, he should know better). There are loads of pain receptors all throughout the body. It is the bodies way of letting us know when something is Not right. It is true that sometimes these nerves can become hypersensitive and start sending the signal to the brain that something is wrong( even if it is not serious) and the brain will send out the pain signals nonetheless. So yes, there are pain receptors and nerves all throughout the digestive tract( the Vagus nerve being a huge one).