Crohn's Disease pain

We all know the "on a scale of 1-10, what would you rate your pain" scale. I'm curious about your Crohns Disease pain. On that scale, what would you rate it? And are you taking any pain killers for the pain that you're feeling?

I personally would rate my usual pain about a 3-4. It's very annoying and I get frustrated on occasion, but it's not absolutely terrible. Of course, once in awhile that pain spikes to remind me how nice it is just to be a 3-4. I'm personally not taking any pain killers but this prescription for lortab sitting on my desk calls to me on occasion.

I think I've felt the whole rainbow of pain from meh, to doubling over and vomiting on the spot cause the pain is so bad. Generally its around a 4-5 though and I don't normally take pain pills for that. I've actually never taken pain medication for my crohns pain because if it was ever so bad to need it, I'd be in the hospital getting the good stuff, which I've had to do a few times.

My crohn's pain can be anywhere from 1 - over 11+ (which is usually a bowel obstruction) where I'd be heading to the ER for help from the doctors and my surgeon. I'd be getting the STAT labs, CT scans, and IV pain medication.

Yep, stinks to have Crohn's.

Oh, and if it's 11+, I'm usually in the bathroom worshipping the porcelain god yacking and doubled over in extreme pain wanting to be put out of my misery.

I wouldn't wish this kind of hurt even on my worst enemy it's that bad.

GutlessWonder86 said:

My crohn's pain can be anywhere from 1 - over 11+ (which is usually a bowel obstruction) where I'd be heading to the ER for help from the doctors and my surgeon. I'd be getting the STAT labs, CT scans, and IV pain medication.

Yep, stinks to have Crohn's.

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Same.

Mine is similar to other posters. When I am flaring, I generally have 2 (a 1 or 2 on the scale) good days a week, 3 uncomfortable days (a 4-6), and 2 miserable days (8-10). When it gets really bad, I might have 3 or 4 miserable days in a row. Just recently started taking Ultram for the pain, but can't plan to do anything when I take it, as I get very dizzy and weak.

This summer it's been about a 2-4 most of the time. This week it's been about a 6 with repeat episodes, several times daily (lasting minutes to hours) of 9, ouch, 9.5, 9, ouch ouch ouch. Got Buscopan on Monday at the walk-in clinic and going to see family doctor tomorrow morning. GI out of town until end of August.

For the most part I find my pain manageable. I do have the buscopan and colifax and when it gets real bad I have tramal. The pain spikes during digestion of food and when I am on the loo. My chrons is active in my rectum as well as terminal ileum, so it really is a pain up the arse (te he he).

On a good day it's about a 4, gassy day 5-6, Diarrhea day can be anywhere from 7-10. I've had the big D for several days now, so I've been taking a lot of Acetaminophen (Tylenol).

I swear Crohn's bites big time doesn't it??

When not flaring.. just a niggly 2-4 level

At the mo..flare.. 9-10 ..doubled up all day at work, up to the eyeballs in cocodomal... think thats pretty typical though!

Long as I dont try to eat..I can settle around 7 and use painkillers/heat to get comfy

On a good day, around a 2. If I eat something that's not on the low res diet, it can go up to 4 or 5 and I take paracetamol (acetominophen). I have had one real bad day, where it was 7 or 8, and I had to take codeine. On the whole, I think I am lucky with how mild my symptoms are!

It depends on how ppl rate 1-10. id say 1 is no pain, 10 passing out

Before i had any drugs id go for 3-4 where if i walked for more than 10mins i'd need to sit down cos of the pain, now 1-2. have had to spend a couple of days in bed cos of it so 2tops id go for 6-7 there

Rebecca85 said:

...I had to take codeine.

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I can't take that crap. It always makes me extremely nauseous and puke all day long. So I take Vicoden or Hydrocodone, but I'm out at the moment. That's why I'm taking the Acetaminophen (6 at a time).

Codeine (and morphine) have the opposite effect on me. Generally if I'm nauseus or sick it's because the pain is so bad so the painkillers stop me puking! Rygon, I guess our 1 to 10 is similar, a 2 is like 'oh my stomach hurts', if I have a 4 walking is difficult, by about 6 it is impossible to stand up straight (I can stand but only hunched over) by 8 I am puking from the pain, and I have never had a 10.

I'm the same Rebecca.. the Codeine helps, esp with anti sickness. It means I am only doubled over a few times during the working day and can get in to work etc

Now trying the higer dose of codeine, wonder if theres anything that works better.. it masks but only to a degree!

rygon said:

It depends on how ppl rate 1-10. id say 1 is no pain, 10 passing out

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That's a good scale. The one I was told is that 10 is the "worst pain you can imagine" -- but sometimes you'll be instructed that 10 is the "worst pain you have ever experienced before." Both are tricky because we're highly motivated to forget pain (thank you, smart bodies for forgetting past pain!) and we have difficult imagining worse when we're in a lot of pain. So I like yours because it gives something measurable to compare to. It matches up with what I've been using, too. When I'm at a 9.5 I am woozy, seeing stars, can't stand up, and on my way to fainting.

Dancer- I was given oramorph (liquid morphine) when I was discharged from hospital, but only 5 doses to use in extreme emergencies, and at that time codeine wasn't enough to touch the pain. Since being on steroids, I have only needed to take codeine on one occasion, and 60mg plus 1g of paracetamol completely got rid of the pain (i was told to always take it with para as it enhances the effect). What are you on to treat your Crohn's? If codeine doesn't kill the pain, maybe you need stronger treatment rather than stronger painkillers as that can make it worse by masking damage.

I have had 5 weeks of steroids now tapered off, now using codeine 30/500 - 2 of these 4 times a day. Been back to GP, is happy to dish out 100 a week for pain relief for the time being.

Hmm.. guess we are all used to such high levels of pain its hard to judge!!! passing out or doubling over is "tolerable" for us!!

My pain is usually mid-range... waking up with a 5-6, some days reaches up to an 8 or 9, but my doc. is very compassionate. I have hydromorphone (dilaudid) to keep the pain at bay. I've noticed that just a bit of pain killers throughout the day makes your day much more managable. Not high doses... just enough to keep me off the loo all day and keep me mobile.
FYI - be careful not to take too much acetaminaphine (Tylenol), etc. because your liver can't take it. Had a close call with that not too long ago so be careful. If you are on something with Tylenol in it, make sure to get regular blood tests to check your liver!!!

Colette the Crohny
________________

Prednisone for flares only
Tried sulfasalazine, tried Asecol,
nothing worked. Diet is important though!!!

Does anyone else not have any pain? I have never had the abdominal pain with my Crohn's. I'm thankful for that, however, since I didn't stop flaring unitl I had my ileostomy, my bms were always off...the other symptoms (ie fatigue, loss of appetite, dehydration, etc.) happened so gradually that I never knew things were really bad until I started passing large amounts of blood. Anyone else?

Thanks!
Julie

i have no pain, never had any pain at all.

maxibear said:

i have no pain, never had any pain at all.

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Same; but only a small portion of my jejunum is affected by only a few skipped lesions with healthy tissue in between, and I've never had D or blood. Only C and bloating.