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99 Person Colitis Joint Pains Survey

Adam from ihaveuc The “Colitis Joint Pains” Survey data is complete,

and you can read all of it below.  (There’s even a few poems at the bottom!)

This survey was a total of 8 questions, and it had our biggest turnout to date with 100 people responding.  Because 1 of the respondents answered “No” to question #1, that person’s response was removed from the rest of the data.  On behalf of everybody who finds the data valuable and helpful, I would like to thank all of the participants from 13 different countries who completed the survey.  These 99 participants, kindly donated over 18 hours of time filling out answers to the following questions:

  1. Confirm that you are diagnosed with UC and that you have experienced “joint pains”
  2. Did your joint pains start BEFORE or AFTER your UC diagnosis?
  3. How would you describe your joints pains to someone who has never experienced “joint pains” before?
  4. Do you think your joint pains are related to your UC?
  5. Have you talked with a doctor about your joint pains?
  6. What have you been doing to treat your joint pains?
  7. When at its worst, how painful is your joint pain?
  8. IF you have any advice, thoughts, or POEMS you’d like to share about Colitis Joint Pains, feel free!


Question 1:


Confirm that you are diagnosed with UC and that you have experienced “joint pains”

Yes:  99 people

No:    1  person (this persons answers were removed from all the data below)


Question #2:

Did your joint pains start BEFORE or AFTER your UC diagnosis?

Before:  38%

After:     62%


Question #3

How would you describe your joints pains to someone who has never experienced “joint pains” before?

  •  I get pains in my right knee when lying in bed. The pains can be severe and keep me awake.
  • Pain, mostly tenderness and mostly in my knees. Most noticeable when exercising and going up and down stairs. If I run on a treadmill, I have a difficult time stepping down off the treadmill.
  • An aching heavy feeling
  • After sitting or kneeling for a short time my knees, hips, back and shoulders feel kinda like a rusty hinge sounds like. (creeky and stiff)
  • Hits me suddenly, without warning. From fingers to ankles. Can be a quick sharp pain that lasts only a day to dull aching that will last a few days
  • I had it in both ankles. Basically they swelled up overnight. Think of it as something in between a really bad sprain to a broken bone. I could hardly walk for weeks. I would literally cry if I had to get up & walk somewhere because the pain was unbearable.
  • a deep migraine type pain that can be isolated to a particular region or it can be spread across the whole back
  • Niggling at times
  • somedays like you want to curl up and die. It hurts to walk, to lay in bed and sit
  • It feels like I had bumped my knee & was subsequently swollen, or had done too much exercise & was suffering muscle strain.
  • They vary. Sometimes they feel like a constant throbbing pain, sometimes a constant dull ache.
  • Feels like a stabbing pain going from your hip right down you leg. Then there is the joint pains feels like it is grinding on something.
  • My knees felt like they had just been stabbed and i couldn’t walk on them.
  • a general feeling of weakness in the my joints – particularly wrist, elbow, shoulder, knee, and ankle. a general feeling of discomfort…dull pain like growing pains and tendinitis
  • I have random instances. It is a burning sensation that happens in one or two joints of my body at a time. It hurts to even barely flex the joint. It also migrates….meaning it will start in say my finger then move to my elbow then move to my knees.
  • very painful where I would sometimes need a cane to walk or would have to be in bed because my right hip would “lock” into one position. (limited range of motion of my femur in my hip)
  • Constant ache, then certain movements will induce a sharp pain right in the middle of the joint.
  • I feel the most pain in my hands, usually. My fingers more or less freeze and curl up a bit. I can not move them at all, it is a bit scary! And a serious pain runs up my arm also. The pain is like a sharp, burning feeling. It ranges from a quick one minute pain to a lingering all day affair. I feel so sore after, then before I know it it starts again. My last major flare up was Aug/Sept 2011 and I still feel so sore and increase in joint pain since then.
  • I wouldn’t say it’s painful as much as it’s fragile or weak and I have the feeling that they’re not as strong and healthy as they used to be. And I feel like as time goes by, they’ll get worse and worse.
  • very painful and effects more than one joint at a time, at the moment my back, knee’s hands and elbows are very painful. stop me doing daily tasks
  • I feel very achy all over and very tired and worn out !
  • stiff,sore.
  • Unable to bend fingers,lower back pain so bad that I’m unable to bend at the waist and pains in shoulders and elbows so severe that I’m unable to fall asleep.
  • I ache, sometimes all over. Sometimes it is confined to my knees or shoulder. It makes it painful to walk up and down stairs or any normal activity.
  • My knees have a cracking sound when i have to bend or kneel down and the pain feels like i am in extreme cold all the time. Climbing the stairs there is intense pain also.
  • Hip and knee pain. Thought it was from getting older.
  • Im not actually sure if they are the joint pains you are referring to….but what i do experience is a generalized aching -and it feels the worst in the part of my legs between the knew and the ankle…i can’t quite tell if it’s coming/radiating pain from the knee or the ankle. But i can say that the back of my legs feel sore.
  • It hurts to stand up after sitting and my 2 pinky fingers have the top joint thats swollen and painful.
  • Pain in my joints, at random times.
  • a throbbing pain , where it hurts to cross your legs or bend your arms.
  • Bad pain in my knees and lower back, aches and I feel I have to click my knees to feel comfortable.
  • Sort of like growing pains, but also an all-over aches and pains, like I’m getting the flu.
  • Achy, inflamed, burning , limiting, tender
  • My hips and my knees were very sore, kind of very intensive pain. Sometimes similar to spams.
  • Terribly painful, like all tied up in knots.
  • Just that they ache. No pain if I don’t move so it’s really hard to get up in the morning.
  • Like a pain from over exertion in the joints
  • My elbows were really stiff in the morning especially, also my knees and ankles. But I would say mild pain.
  • My ankles swell up. Eventually, I am unable to walk. This happens during a severe flair.
  • Aching, sore…
  • aching pain that throbs sometimes
  • I have pain in both ankles–the best way to describe it to someone would be that they feel extremely stiff and brittle.
  • It immobilizes you, everything I to do is associated with some form of pain.
  • At its worst it was hard to stand up straight in the mornings til i got moving and I’d have to take steps “two feet”at a time.Still is bad if i sit for a long time but its getting better.
  • Sore, painful and causes stiffness and sometimes makes it hard to move.
  • hurts
  • Dull ache
  • Starts with a sharp pain in the area and then after you experience it for a while the muscles around the area tighten.
  • You feel like you’re 100 years old. You sit down and aren’t sure you’re going to be able to get back up. Arthritis. Waking up with ridiculous pain at 3 am… and then again at 5 am…Takes 20 min to put a shirt on. Have to resort to using one hand when the other is out of commission. Sometimes can’t walk.
  • feet and ankles was almost debilitating–gout liked—stiffness thru out body
  • burning sensation. have first notice could not put pressure on knee when kneeling. very sensitive. spread to elbows burning and then became very painful. A few days ago felt like someone was stabbing my ankle
  • pain comes and goes depending if I am flaring.
  • I mostly have the pain either in my hip or strange cramping in my toes. I was told by my doctor to watch my potassium levels because that is what put me in the hospital when I found out I had U.C. I also suffer from migraines now for 25 years so the pain in my neck is sometimes tied in.
  • A general ache like when you have the flu. I had a lot of heel pain when I got out of bed in the morning, hobbled to the bathroom. Walking and hiking are my favorite form of exercise, but sometimes I get a tingling sensation in my knees when I do, and sometimes I wake up at night with aching knees and ankles. Once in a while the joint where my thumb attaches to my hand aches and feels hot, but so far it only lasts a few hours to a day. I recently started having pretty severe neck and shoulder pain. The newest pain my tailbone. I’ve also had migraines.
  • There is no regular pain in the same joints, one day it can be in my shoulder the next in my wrist, then in my knee,and so on. If I didnt know any better I think it was travelling around my body waiting to strike wherever it happens to be, The pain can generally be daily in different areas as shown, very rarely do I go a day without some joint pain, but dont get me wrong its not debilitating (yet) so its something that is tolerable. UC was diagnosed 3 and half years ago and looking back I can honestly say that I never really completely came out of Flare mode, just had weeks or months of varying degrees of inflammation.
  • I first experienced this pain in my knees. I bent down to clean something off the floor and the next thing you know, it was hurting for me to stand back up. I’m 21 years old, been a runner my entire life. I have never felt this kind of pain before.
  • Feels like arthritis, stiff and painful
  • Although rare, my joint pains usually occur as I am trying to fall asleep, or when I wake up in the morning. I recall one occasion when I woke up, and it felt as if both of my elbows and both of my knees were swollen; this was months ago, and my right elbow (but none of the others) still bothers me to this day. There have been other occasions where my lower back will be constantly tight. Both of these cases, while not extremely painful, are still bothersome and can be pretty achy.
  • There is just an achiness in my finger and toes, similar to an arthritic person. When you go to clench you fingers or toes together they almost seem stuck and achy. When I bend my knees I have a very difficult time getting up. I excercise daily and this does not seem to diminish the achiness.
  • When the pain is in my knees, it feels like you can’t bend your knees; they feel like they weigh a lot and you can’t lift your legs. Joint pain in my hands is an achey throbbing pain, unable to bend fingers, unable to open jars or hold anything heavy. Even had joint pain under my feet – thats the weird one- feels swollen and like you are stepping on your own toes.
  • sometimes hurts to move. maybe a salt imbalance??
  • 9 yr old girl with UC – described as growing pains, or sore joints (knees and ankles mostly)
  • My knees ache after to much exercise
  • Extremely sore, I usually suffer from pain in my upper back/shoulders, fingers, wrists and knees. When I have pain in my fingers, I usually get ‘claw-hands’ and I am unable to write/type. When suffering from knee pain, I am unable to walk and I’m only 22 years old!
  • constant aching, mainly in my hips, lower back, shoulders, chest, all my joints seem to be affected. the pain varies, some days i can hardly walk. other days it will be less painful but it is always there 24 hours a day
  • like growing pains.
  • It reminds me of when I was training for long running events, after long runs it felt like my bones hurt… that is sort of similar to this, but in different places.
  • Neck and lower back hurts…
  • Cold and piercing.
  • Every joint muscle in my body ached so bad I couldn’t get out of bed some mornings. It simply hurt to move.
  • Swelling similar to gout, achy like arthritis, bone crushing fluid (toe bones), felt like a torn ligament.
  • Recurring in the same few joints. They tend to occur in my neck and shoulder and right wrist.
  • Moderate to severe pain.
  • Uncomfortable and achy most of the time. Not intense, just enough to be annoying to live with. I also find that it moves around my body and that somedays different joints hurt more.
  • dull pain in lower back. hurts when stand up and have to stay double over for a minute before standing straight. Hips ache. When I hurt a joint they take a long time to get better. some never get better but orthopedist can’t find anything wrong. Knee was twisted 2 years ago and never full healed. rolled ankle years ago ortho said nothing in the x-ray, MRI showed fluid but don’t know where coming from.
  • Every part of your body hurts but mostly in the areas of the spine, the lower back, the arms, wrists, knees, and feet. To best describe this pain, imagine that you have the flu and you have that pins and needles you get associated with flu symptoms. Now, imagine having that every day from the time you wake up to the time you go to sleep. Each step you take hurts, going up and down the stairs is taken with care as your knee may give way.  There are times too when you feel a sharp pain when the humidity rises or its cold out. Days before its about to rain, the joints tighten and barometric pressure presses onto the pain making it feel sharp and intense. You just want to lay in bed all day, covered in blankets with pillows all around you to alleviate the pain. Aside from taking Prednisone, being warm all day and asleep seems to be your only refuge.
  • Aching that just doesn’t let up, at times pain that catches you bye surprise also deep and penetrating. The kind of pain that doesn’t let you sleep and that can make you yell out unexpectedly when you least expect it.
  • stiffness and pain with some days very uncomfortable and others bearable…my joint pain varies among my joints…it is not in just one area
  • It’s like my bones want to rip through my flesh.
  • Soreness extending to crippling
  • It hurts the joints in my hands feet and knees. The joints get swollen and red. They feel stiff and hurt.
  • stiffness in the knees and arms
  • The pain seems to come out of nowhere, a lot of times I notice it when I wake up. It then gets more intense over the next few days, and my range of motion becomes extremely limited in the affected area, like something is clogging the area. I usually load up on pain killers and sometimes heat will help to increase the movement. When the pain eases it kind of feels like a dam breaking that allows the built up, clogged feeling to start working again. So both the onset and dissipation are relatively quick, but the period in between can be debilitating pain.
  • How would I describe my joint pains…that’s hard. Some days, it feels like every joint in my body is sore, like a really bad flu. Other days, it’s just maybe my shoulders. Then, my hips another day. Maybe like an overused muscle, but it isn’t, it’s my UC. I didn’t have these pains before I had UC.  I hope that sort of explains it…  Bev:)
  • soreness, feel warm, swollen (sometimes)
  • For me the joint pain feels like constant nagging ,gnawing & not being able to extend, bend or grasp at certain times.It could be in the elbow area, knees, feet, hands. Like having the flu 100 x’s over
  • like someone beating me with a baseball bat
  • Sore and aching back, knees and hips
  • It is just an achy pain – what I would imagine arthritis might feel like?
  • painful achy knees, hip and toes.
  • Mine is in my knees and feels like my knee caps want to blow off then the pain permeates to leg bones and feels like someone is twisting them
  • Every joint in my body hurts with the exception of my elbows. When I move I feel like I need oiled and when I’m still it feels like someone is trying to pry my joints apart with a sharp tool.
  • Slight “heaviness” when walking around knee joints
  • Sharp, intense pain that occurs in your joints. If you haven’t been moving around for a long time & keep your joints stiff, the worst pain comes from trying to move.
  • Dull, achy pain down deep inside my joints. Some days my joints feel warm & tender. The more I move, the more it hurts, but if I don’t keep moving, my joints get stiff.
  • For me, I often feel like gravity is working double time on me and my knees and hips have a “deep soreness” and sometimes radiating pain. I’ve also been experiencing this in my elbows and hands although less commonly. Usually, when it moves into my elbow(s), it is worse at night and I can wake up extremely uncomfortable and have to move my arm just so that I can go back to sleep again.
  • I have had both joint pain and what I call “bone aches”. For me its like Ive over done it, stiff and sore like a black n blue mark. The worst part is I dont have to be moving or doing anything to be in pain.
  • Like you’ve been working out really really hard, even though you haven’t been
  • Varies from constant annoyance to full-on stabbing pain.


Question #4:


Do you think your joint pains are related to your UC?

Yes:           70%

No:            30%

Not Sure:    0%

Question #5:

Have you talked with a doctor about your joint pains?

Yes:         72%

No:          28%

Question #6:

What have you been doing to treat your joint pains?

  • Nothing – have just dealt with it.
  • Aspercreme, and I now take fish oil and plan on beginning to take glucosamine and chondroitin. Wish I could take Advil or Aleve, but afraid that would send me in to a UC flare.
  • Used Tylenol but it don’t work very well
  • Well….I dont feel amazing, and trust me, I am far from it, but I have not done anything for the joint pain. I think its probably my brain rebelling against taking any more meds.
  • Keeping UC under control usually keeps pain under control
  • I took over the counter medicines for a while. They didn’t seem to help. I tried ice & heat to no avail. I tried soaking my feet in hot water with Epsom salt, which was a waste. Wrapping my ankles in an ace bandage was pointless. So I basically gave up & just dealt with it for several months.
  • physio for my fusion but it was an anterior approach so the deep tissue work through my stomach really flared things up – the only thing I find works is rest – i take glucosamine, chondroitin, MSM tablets but am about to stop them – more for the placebo than anything else
  • Nothing
  • Can’t take anti-inflamitories. Just panadol. I use Metsal Heat rub, and salonpas patches. Go to physio and rest
  • it’s only happened a few times & usually goes away within a couple of days.
  • Nothing, just get on with it
  • Nothing. Medications and tests are to expensive and very few doctors know or has treated the decease.
  • Nothing.
  • my main source of pain is my wrist and forearm. Granted, i probably do have tendinitis from working at a computer during the day and playing piano and guitar regularly….but i can’t seem to get it under control and wonder if my uc is related.
  • Nothing, I bare through it.
  • SCD diet = colitis relief and arthritis relief consequently
  • Omega 3,6 & 9 ( but not with fish oil, it makes me gag!) and I have a magnet strap I wear but I don’t know if either make any difference.
  • I have not done anything, curious as to how others treat joint pain. I do not like to take a lot of medicines, but feel that I might be on the breaking point for the pain.
  • I haven’t done anything to treat it but I feel the need to maybe start taking multivitamins, as it seems to me that it’s some kind of a vitamin deficiency that’s causing this problem and specifically vitamin d.
  • painkillers and more painkillers, waiting for results from hospital so can find out what right treatment to use
  • I’ve switched medicines and also just deal with it :(
  • nothing other than taking more omega 3 .
  • Even though Asprin acts as a blood thinner and I’m bleeding already, I still take Extra Strength Excedrin when the pain gets strong. Other wise I use Topical Rubs such as Aspercreme,Active On and Ben Gay. All only offer some temporary relief.
  • tylenol
  • You know to be honest i am not taking anything for the joint pain as i feel i take enough medication already for my uc and i was never a person that would take medication for anything as i used to be so healthy and right now i just hate the idea of putting so many drugs into my body.
  • Taking Aleve or advill. Works ok.
  • It happens when I’m sick or flaring.. so my advice is control the flare to reduce the joint pain.
  • Nothing,,,,,,,,
  • Yoga
  • Brufen.
  • Nothing
  • Advil
  • Medication from my rheumatologist, steroids, etc
  • Reiki treatments
  • I haven’t done anything differently. I have increased my dosage of Vitamin D and Magnesium. The magnesium has helped somewhat.
  • Just got a prescription filled today for T3s. Have not experimented yet. The T3 were to cover abdominal pain too.
  • nothing
  • See above, plus Epsom salt baths, and yoga and massage whenI can afford it!
  • Control flare with Rowassa. Cortisone shot.
  • Ibuprofen and a heating pad have helped.
  • pain meds or tylenol
  • heat
  • My regular doctor gave me a shot of an anti inflammatory of some kind that is supposed to last 6 months-so far, so good.
  • Prescription strength Tylenol on really bad days but normally just deal with it.
  • It’s slowly going away the longer i’m off steroids.Occasionally take doctor prescribed pain pills but not often.
  • I just deal with it. Can’t ale anything for because of my uc.
  • it comes then goes. if real bad i will take an ibprofen as this is the only over the counter drug that helps. great for pain but can induce the always fun flare-up.
  • Osteo and pilates to strengthen my core
  • Keep moving – gym weight training with an emphasis on core workouts. Don’t over do it, make sure not to strain the area. Make sure to sleep on a comfortable firm bed and stretch a lot when sitting for periods of time.
  • Prednisone was amazing for join pains, until the heart palpitations started and the lower dosage didn’t do it for the joint pain (10-15 mg would work, down to 5 mg would not). Other side effects of the prednisone also was not worth it. Have lost bone mass and am considered osteopenic. Then was just on some arthritic prescription pain killers, only worsened my colin and helped for an hour or two, tried some percosat too, that was nice. Then got a second opinion from a different rheumatologist and finally was convinced to go on Humira. Was a miracle drug for me, the join pain disappeared within 5 days, was on Humira from Aug till end of Dec, I had to stop because I was starting to get crazy allergic reactions , seemed to get worse each time, was getting hives constantly and eczema. Am starting on Cimzia next week in the hopes that it will not provoke the same allergic reaction.
  • am on remicade and it really helps–more for the joint pain than the colon
  • aleve
  • If I take the right vitamins it gets better. I also noticed near my menstrual cycle my joints get almost like a stiff feeling.
  • I use bed buddies (microwavable/freezable bean sacks) and ice paks. Heat seems to work best for my feet/ankles and ice for my neck/shoulder. I’ve also started doing neck exercises several times a day. I think my posture is better and the pain and migraines have subsided. And I have had days where I counted the minutes until I could take the next dose of Tylenol. I started eating more anti-inflammatory foods that are also SCD approved, like tart cherries. When my UC is under control, the pain generally goes away. Rest works wonders. I notice a big boost in my tolerance when I’m well rested and an increase in pain levels when I’m tired.
  • I just deal with it as its not too debilitating and I don’t want to take any more drugs if I can avoid it.
  • been careful about how i handle myself
  • I usually just take Tylenol for the pain, and hot baths help with stiffness
  • I’ve just dealt with it.
  • Trying to stay away from any more meds! So only take the celebrex when absolutely necessary. Sort of just suffer through it. The pain is not so intense that I’m not able to do things – it is just a constant – a constant reminder that it is there and is annoying!!!
  • Tylenol, arthritis strength Tylenol (so it releases during the night). At one point I tried NSAIDs like Bextra (recalled from the market) and Celebrex but these are not good for us UCers. Hot tub helps! Exercise as much as I can.
  • physiotherapy massage, increase in salt in diet, use of dioralyte.
  • Since starting anti-inflammtory medication to treat the UC, the joint pains have eased a lot.
  • Take Advil
  • I take calcium tablets daily, drink Alpro Soya milk as I am on a dairy-free diet (due to UC). I have also recently changed my mattress to a memory foam mattress which also helps to relieve the pain.
  • he tried to put me on amytriptyline, but it made me suicidal so i came off it, nothing now just suffering
  • Heat
  • I just deal with it, as I don’t know what to do.
  • Nothing except resting…
  • Exercise, that is all.
  • Calcium helped me get mobile…but GHRP-6 was the wonder peptide that allowed me to compete in Jiu Jitsu without pain!
  • Been different each time. The last round, I cut out CAFO meat. But that helped make me anemic. Previous bouts I did the usual predisone. Also try riding it out with a few Tylenol.
  • I take Tylenol or ibuprofen.
  • Sometimes oxycodone or dilaudid but a lot of stretching excercises.
  • Tylenol
  • yogo, not really help pain but helped mentally.
  • Prednisone injections and pills help. For immediate but temporary relief, Ben Gay or ointments help.
  • Hot showers and pain med.
  • Tylenol /arthritis….ultram…lidocaine patches..nothing really has worked yet. I have started drinking Nopalea saw an ad that it might help with inflammation, it hasn’t yet
  • Massages and Oxycodone.
  • I had done nothing in thr past apart from hot baths or hot pads. I recently found that stretching my bck muscles relieved my pain. Was I stretching back muscles or stomach/colon??
  • Boswelia is good.
  • green tea works i feel sure of that ,,,,,,,but no good uc ,just stopped green tea so i would say joint pain is on its way back
  • Dealing with it. Trying to stay active
  • just living with it…not much i think can be done
  • I started on the Specific Carb Diet a couple of weeks ago and it seems to be helping with my bowel issues, so I am hoping it might help with the joint pain, but it is way too early to tell.
  • Nothing. Just grin and bear it. I don’t want to take any more drugs than I already am on!
  • massage or just try to put up with it, tylenol
  • When I’m at my worst I take hot showers, heating pads and use prescription Lidocain patches they really help and I’m on Cimzia injections every other week, Imuran every day, the list goes on for auto immune suppresant drugs but bed rest for me is also they key. It is very hard to just ignore the pain and not do anything, but I also believe if certain foods irritate your colitis try to stray from eating them. When I’m in a flare I have at least 60% joint pain. Never mind the other 2 diseases. They are in a different catagory all together with the joint pain.
  • try to stay active. the more I keep moving the better it is
  • Tried exercise, massgae and shiatsu is the best (probably because it “treats” the whole body).
  • I take Ultram pain meds for some upper abdominal pain i’ve had for about 7 years now that no one can figure out so it helps take the edge off the joint pain.
  • tylenol
  • Advil sometimes helps, but mostly just heating pads wrapped around my knees to alleviate pain.
  • I am on mobic twice a day. Most days this will take the edge off. Before darvocet went off the market, I could go a year on 60 pills. I don’t need, nor do I want, to be reliant on heavy pain meds but several times a year the pain gets really intense. Since the demise of darvocet my doctor and I have tried several different pain meds but nothing is working for me so far.
  • Nothing, since the joint pain is very very mild and not even pain really, just heaviness around the knee area as described above.
  • I try and stay loose. If I know I am going to be still for a long time, like going to sleep I will stretch myself out first so when I wake up I won’t be as stiff. Other than that, just take the pain as it comes, some days are worse than others.
  • I use Advil, Tylenol arthritis or Vicodin when it gets bad. I also soak in an Epsom salt bath & use a hearing pad or ice pack. Sometimes I use icy heat.
  • I try to make myself walk more (even though it is counter-intuitive) as well as sometimes try to find a comfortable spot/position. Tylenol doesn’t seem to help – NSAIDs do, but last time I took one it made me bleed – doc says they could send me into full flare so I’m trying to avoid them. I do try to keep a little pot on hand when the pain is at its worst so that I can take a few hits at night – usually helps a LOT.
  • I was given Ultram- and used tylenol
  • Just been taking Motrin


Question #7:

When at its worst, how painful is your joint pain?

Pretty BAD pain:     38%

There’s pain              37%

THE WORST PAIN EVER (I’d rather smash my finger with a hammer)   11%

A little pain        10%

I barely notice the pain ( I can think of all sorts of things that are worse)  3%


Question #8:

IF you have any advice, thoughts, or POEMS you’d like to share about Colitis Joint Pains, feel free!

  • All I can say is… the reseachers…..please, for the love of god, find a cure.
  • if you have UC and you get joint pains, or cancr sores in your mouth, this should be your sign that your body is gona go through a flare up soon.
  • knowing this, you should start strictlyyyyyyyyy doing the SCD and taking BIO K and / or VSL#3 all together before your immune system motors run out of control and you flare up so bad you end up in hospital. i speak from experience. peace to all. Anthony in Toronto
  • I have found talking about what I was going through made things not so bad, better than trying to hide the symptoms.
  • I am looking forward to these results, thanks, Adam!
  • Advice on how to deal with Joint Pain !
  • Sometimes an alchol rub does the trick for a short period.
  • As i dont take any pain relief for the joint pain the only advice i can offer you is that i try to keep heat on the areas with the joint pain…it helps a bit for me.
  • Love love love what this disease can do to you :)
  • Ouch ouch ouch, ouch ouch ouch, Ouch ouch ouch, ouch ouch (sung to the tune of Jingle Bells!) ;)
  • Go see your regular docter–they seem to be more open about discussing treatment options than the gastros.
  • be aware that UC is very often accompanied by spondylitis–it is all about controlling the inflamation—for years i was being treated for gout which i have not had since starting the remicade and no flour/sugar diet
  • I just hope that people know they are not alone. This web site proves that a lot of people share the same fears questions and stories of U.C. When I was first diagnosed no one spoke about this now I can find wonderful websites like this. I think chewable vitamins help with absorbing nutrients and help protect you immune system. And I know a lot of people are either against or worried about the flu vaccine , but I get it every year to avoid a trip to the hospital. When there is a tummy flu going around that is the monster that hides under your bed waiting to get you. I am currently looking into yoga to help my joints and muscles and sometimes you must pamper yourself stop ignoring your body. Take a hot bath or a day to yourself. I just wish there were support group meetings to help vent and connect with people on a one to one basis. And one more big issue…Work…how do you talk about it there? lol baaaa.
  • Keep trying. Don’t give up. Be gentle with yourself.
  • To all UC ers out there, hang on in, hard tho it is remain positive, look after your support system you may need them more from time to time. Dont be too hard on yourself and give yourself goals that are hard to achieve, make them small and celebrate when they work, but always remember it can come back and kick you when youre down, so make the most of the OK days. Good luck to everyone in there chosen path but dont forget BE REALISTIC !
  • Treat your body good. Exercise and eat healthy, and your symptoms will most likely be less severe. I haven’t had any major joint pains for a few months!
  • I have sent emails and not received replies…so I HOPE you actually READ THIS! 24 yrs experience talking…#1) Stretching exercises daily #2) Calcium Supplements (Did you know anti-inflammatory drugs suck it out of you? Especially Prednisone! #3) Gelatine is amazing to repair joints (Chemist talking here) #4) If you are over 30 Growth Hormone Releasing Hexa-peptide is worth looking into!
  • Joint pain, it sucks, but then so does colitis.
  • The best advice I can give is the acceptance of these pains in our life. We don’t have to like it. We don’t even have to be nice about it but knowing it is a part of UC and we will experience it whether periodically or chronically; it’s there. Don’t fight the pain or you will only tire yourself down. Instead, just do whatever you need to do to alleviate the pain and of course, keep living life. ACceptance means learning to add this as a part of your everyday life until a cure is found.
  • Keep moving. Joint pain only will get worse if you don’t stretch things out. Drink plenty of water and get lots of rest.
  • You’re not crazy. The pain is there. UC is a hell of a disease & I hate it. I cry everyday.
  • Try Boswelia without a doubt
  • For me eating the right diet helped incredibly
  • I cut out dairy, pretty much follow the FODMAP diet. I drink loads of peppermint tea
  • Following Adam’s site and listening to all the good support stories and information has outweighed any medical advice.Having said all that I still get flare ups an going through a pretty bad one since New Years BUT my back is not painful.
  • Thank you Adam for helping the way that you do. You were the first source of information I found the very morning I got diagnosed. Ants
  • if green tea does not make you flare up drink plenty
  • Its not the worst part of uc :)
  • Its a shitty disease (no pun intened) but lets hope for the best those that have it
  • I guess the only positive thing I can say is it makes me appreciate my pain free periods more.
  • LOL…that’s funny…POEMS? I don’t think so!
  • I always will say to myself mind over matter. I have pain no matter what everyday. I try not to complain a lot to others. I sometimes feel people including family understand to a point. They have to be in your shoes to feel what you feel everyday. It is easy to get down and discouraged especially when your at your worst. But not everyday is the same some days good some day s bad. Even if you have the slightest improvement take it and run with it!!! My license plate says (live for today) and thats exactly what I do.
  • The side effects of steroid use and the accompanying problems of UC do not go away once the colon is removed. I lead a much better quality of life with my ileostomy but still suffer the side effects.
  • Stretch yourself as much as you can. Focus on stretching the joints that bother you the most. Moving around and lubricating your joints can help with movement( or lack there of i,e., stiffness) and some of the pain!
  • Just to tell your GI everything. I think that auto immune diseases are connected & unless you tell your GI, they won’t be able to determine the connection.

Poops and bleeding under control?    
Colitis joint pains can still take their toll.

Having Colitis ain’t shits and giggles

But rather than freeze ya gotta still wiggle.
Walk it out and shake your thang
Cuz you’re more than poop and blood and pain!


 Read the other Survey results in the SURVEY SECTION – CLICK HERE

44 thoughts on “99 Person Colitis Joint Pains Survey”

  1. You all put how I often feel into words for me – I no longer feel alone.

    Thank you Adam and these 99 folks who nailed it!


    1. Would this pain also be side effect of
      extended use–over time–of steroidal
      drugs? Would be interesting also to look
      at literature and determine how this type
      of pain is most frequently diagnosed in UC
      patients, if such literature exists.
      I am currently studying the use of fecal
      implant therapies and recently learned FDA
      has banned treatment except in clinical trial,
      tho is is still being offered online by
      practitioners–at high cost.

      1. I don’t know how much research there is on the steroid use/ joint pains correlation, but anecdotally, there has been an awful lot of mention of just that, so seems quite possible. -Adam

        1. I was just diagnosed with UC in October 2013 …in the very beginning of Nov 2013 had my first full on flare, as up to then had just been bleeding, and ended up on prednisone @ 40mg once a day with a taper to start after 2weeks by 5mgs per week. After about a week on the prednisone I started having excruciating pain in my quads just above my knees that also spread occasionally up my thigh to my hip; 9 out of 10 on a pain scale. In addition my tongue became numb like I’d been eating sucrets and I had some pain/swelling in my left wrist and right thumb. My GI stopped the Mezzevant (started that with the pred) right away and is tapering me a little faster off the pred taking me down to 20mgs from 30mgs(I had been on 30mgs for a week before he finally recognized the pred was causing my pain). Since I started the 20mgs the pain has subsided. I can’t imagine taking pred ever again and wonder what was happening in my body
          to make me feel like that! I started working with a naturopath and following SCD. Noticed some people mentioned Boswella Complex. I am taking that plus Rehmanna plus Slippery Elm and have seen significant improvement in the last 2 weeks (while I’ve been on 20mgs of pred-oh and was still flaring seeing blood and looser bowls and was already following SCD on the pred.) After starting the herbs I noticed improvement about 4-5 days later. Solid poops! Very little blood.

          So in my opinion if you are taking pred even for only a week it can cause severe joint pain. The don’t call it the Devil’s Drug for no reason.

    2. I was working at home, suffering from bad joint pain at the base of my thumb and ever-present in my ankles and at the bottom of my left foot, and feeling upset and all alone because of this, when I happened to check my email. There was the survey on UC and joint pain! Reading this cheered me up enormously. Right now, I no longer feel so alone. I feel comforted and can go on with my day as if the sun just came out. Thank you Adam!!!!!

    3. I am so thankful for this site! I thought all the joint pain/muscle was in my head. So nice to know I’m not crazy and alone with this. Thank you

    1. What up Tony!!
      Great to hear from you, and HAPPY NEW YEARS!
      It’s been too long.

      Yeah, the survey information that everyone filled out is pretty incredible, and although its very unfortunate that so many of us deal with these types of pains, it’s at least comforting to know we’re not alone.

      I’m glad you liked the clip, have you seen that movie yet called “Friday”?

      Take care,

      1. Great site, I had no idea! and have dealt with joint pain progressivley getting worse. Thought it was age and arthritis! Dozens of tests. Wow so this could be why hmmmmmmm. Will let my new Dr. know/ I never talk to my Colonoscopy Doc cuz Iam under etc, but have many questions now. Altho Iam the one whom takes Garden of Life products and they do work-Jordan Reubin left to die by Doctors because they could do no more altho he had Chrones. I have to stay on FYI and Primal Defense or it flares constant. I also take natural remedies that help to heal the cell walls in the stomache and digestive system..In remission for the most part, once in awhile have to take prednisone, but have found a new homeopathic for spasms, works well and I eat/chew super papaya enzymes..Thanks again…

  2. Thanks for doing surveys, Adam. There were some spot on comments and advice. I know, as a person with UC, we feel like we sometimes complain, but it’s our reality. Yeah, there are alot of people with worse diseases, but this is ours, and it’s what we live with.

    Why there hasn’t been a cure found for this is beyond me. It seems like it should be so easy. We need good bacteria back into our colons, I believe. Somehow, we’ve lost the good bacteria, whether by another illness, antibiotic use, stress, or whatever. Why not replace the good bacteria? What about these fecal enemas that cure everybody who has C-Diff? Why can’t the researchers do more of that research on UC people? It just might be the answer…and it was so easy…and CHEAP…I just don’t understand why nothing is progressing…just try having and living with this disease, researchers…you’d find a cure pretty damn quick, I think….you’d try anything, especially natural things, like these fecal enemas…


    1. Hey Bev,
      You got some great points!
      There is actually a fecal transplant study going on right now I believe somewhere on the east coast of the US. Someone wrote me a few days ago about participating in that, but I’m not sure of exactly where. Hopefully we’ll have some good news from the research side that wipes this whole thing out soon! would be great.
      take care,

    2. The Garden of Life products by Jordan Rubin work well. His book The Maker’s Diet and other’s r exc. reads. Iam on Primal Defense and FYI and it keeps me at bay. There r many more natural products that do help.Take care..

  3. I can’t tell you how relieved I am after reading this survey. My 9 year old was diagnosed with severe UC in April of last year 2011 and after months of trying absolutely everything has his colon removed in Spetember of 2011. He complains all the time of leg pain to the point where he has to take an elevator at school to avoid the stairs. The pain at night at times is horrible. I assumed it was somehow related to the UC….this has helped calm my fears that there is not something else going on!!

    1. As far as your 9 year old. Remember he is growing. As a parent I remember my brother and my child having sever joint pain and it just turned out to be growing pains. Just a thought :)

      1. I had these “growing pains” which actually turned out to be Osgood Schlatter’s disease. Where the front of the tibia, big bone in lower leg, gets pulled away from itself at the growth plate. I was very active, played soccer, lots of running and after school play as well. Heating pad, or blanket and baby aspirin and massage worked by my mom. This was in the 70’s. So, no blood thinners, think Tylenol when really bad. I would be crying in pain. I also, now have mixed connective tissue diseases and severe arthritis in most of my joints from these growing pains. Most people k ow this is not normal, or all children would wake up with these “cramps, or Charlie Horse” as we called them then. Watch and maybe get genetic testing for him and do Hypermobility test “Briaghton score test” google EDS Ehlers Danlos Syndrome.

  4. I’ve said it before and I’ll say it again…Peptides folks…GHRP-6 is an intramuscular injection of a combo of 6 amino acids (Hexa peptide) and is simply a short protein strand. I’ve had colitis for over 20 yrs., fight in MMA and Train Brailian Jiu Jitsu…all of which are very stressful on my formerly painful joints. Pushing 40, never felt stronger in my life …GHRP-6!

    1. Hi George are you saying that using GHRP6 helps you with the symptoms of UC if so what about the combination of GHRP6 and CJC1295. I am a dedicated bodybuilder and have concerns that the peptides will aggrivate my UC.

    1. Kathleen,

      the joint pains are so very common for people with UC, especially if there is active colitis, but sometimes even when the “normal” UC symptoms are not there, the joint pain can still come and go.

      Have you been able to talk with your doctors about this? If not, that might be a good idea, as there might be some new ideas on how to get over this that they could share with you. I hope that you can start to get some relief from it soon, it is truly awful to go through for extended amounts of time. but from my own experience with it, I have definitely been able to see some huge improvements with the joint pains once I brought my symptoms under control through diet.

  5. Thank you Adam!

    I recently was referred from my GI doc (who confirmed the UC while I was in the hospital by colonoscopy) to a Rheumatologist. I was switched from Asacol to Sulfalazine. This created a big flare in doing so, then had a terrible reaction to the Sulfasalazine. I am now back on Asacol 2 pills 3x a day. It felt like the Sulfasalazine might have worked well on the joint pain, but the other side effects were debilitating. I understand it does work for some patients.

    I came down with what I’ll call severe joint pain after the diagnosis of UC in early August last year. It kept me awake at night, spread through multiple joints, and of course if I had a flare it was just terrible to manage. I tried Fish Oil, the typical condroitin joint capsules on the market. Nothing helped.

    I am now taking Recovery Extra Strength Capsules by Purica Labs. (I had purchased the form for equines several years ago, when my daughter’s horse struggled with stiffness & arthritis and watched it work wonders for him). I thought why not try it for myself with the human form. I am not endorsing, nor am I paid by this company. It is working for me, and my joint pain is much reduced. It does NOT work for the UC (intestines) however. I must stay on my Asacol and in no way to I want to suggest people stop their meds. I use it for joint pain only.

    If anyone is interested, I would be glad to share more info on it. Everyone is different with UC, what works for some may not for others. I do want to extend some hope to those struggling with joint pain.

    Thanks again for this site, and info on the SCD diet- I have learned a great deal from everyone here & no longer feel so alone in this battle for health!

  6. So glad to receive email on joint pain… I thought.I was losing my mind… I have days where I hurt like I have the flu.. I hate others have this problem…but so glad to know I’m not alone… I kept thinking……how can this be related to UC… But knew it was.. never felt this way until 2 months before my first flair up. I kept telling my friends I didn’t feel right.. had no other symptoms at this time. Then UC symptoms started and so did the joint and muscle pain…. My UC is in remission… On remicade and Lialda… Gut feels better but body pain still there.

    1. Heck no you’re not alone with the joint pains Cindy:) no-sir-e!

      I think that with time, you should start to notice some decrease in the joint pains, they may come and go for no apparent reason, but so many people get control of them, and I think you will too. Hang in there,

  7. I have had UC since May of 2007. Have gone through trying many medications…. some didn’t work… some caused me to have pancreatitis. Finally went into remission about a year ago. Now I am having joint pain… terrible. My GP prescribed steroids and then referred me to a rheumatologist after several weeks of pain and hardly being able to walk at times. He thinks it’s either related to the UC or thinks I may have fibromyalgia. I don’t think it’s fibromyalgia. But it is strange… like one day this week I woke up with my left hand and wrist hurting and so weak… I couldn’t hardly use it that whole day. I slept in one of those carpal tunnel braces and the next day it was pain free but now my knee hurts. Some days it’s one of my knees or my hands or my lower back…. just randomly switches around and sometimes it’s everywhere. The rheumatologist says if it was from arthritis caused by UC that I would have swelling…and I have had my ankles and feet swell but he said that was just fluid… Grrrr… He wants me to come back in a month and he’ll see how I’m doing. He prescribed tramadol for the pain but it’s like taking nothing and I hate to take pain meds since I already take 4 asacol a day for the UC. Anyone else have the joint pain without the UC flared up and without any joint swelling? Thanks for letting me vent. Love this website. I so needed to read others experiences with this horrible disease. May God Bless you all!

  8. Great stuff… I remember when I was diagnosed with UC 15 years ago. The joint pain I experienced before the diagnosis was the worst. I would have it in one knee for a few days and then it would move to the other. It would move from my ankles, shoulders, wrists, and knees. SUCKED…

    After my diagnosis I haven’t had any problems with my joints. That’s right, 15 years and my joints haven’t bothered me once. Don’t get me wrong I still deal with flares, but if I had a choice I’d take the joint pain any day…

    This is one weird pain in butt disease. It affects people so differently. I hope one day a magic pill will cure this for all of us. As hard as it is, I remain optimistic ;-)


  9. I had joint pain in my right knee. It was so bad that I couldn’t even walk so I went to my primary care doctor and she recommended an orthopedist. I had 3 injections of Orthovisc and it seemed to help. I no longer have the pain anymore. I’m not sure if it is related to the UC but it’s possible that there is a connection. It could be arthritis too.

  10. phew relief for me i know i sound over excited but realy the thought of no surgery,n thr might b sm alternate cure or that m not d only one feeln crappy:-)and most of al m symptom m join problem are far lesser then sm so i guess i should not evn complain:-)thank u so much Adam coz nobody realy understand n want to hear m i just write anything n i feel better.coz this flareup is not m worst but emotionaly m worst till last nite when m sister isist i go for surgery i feel like running away from the hospital.but now happily m doctor made me promise to b more careful n see him every two months without fail.thnx wt regards k.colney

  11. dear adam,, how did i miss this survey,,would have liked to contribute,, Anyway,,in my case i suffer extreme joint pain when my “flare” is at it,s worse ,,i.e Liquid /explosive diaorea for a few days,, i know that could be down to dehydration,, but my wrists hurt so bad i am unable to move them ,also i have muscle pain ,which becomes sore/tender to touch.. 6 months ago ,about 1 month after coming out of a 10 day hospitalisation for U.C. i was experiencing pain deep in my left shoulder joint,, had this for about 2/3 weeks,, then one day i lifted an empty beer barrel in my pub and heard a loud noise and great pain ,, i could not move my arm for a day ,,.the next day looking in mirror with my shirt off, i noticed my bicep had detached from my deltiod insertion. I now got a “golf ball” like bicep ,when contracted 3inches away from where my normal bicep was/should be. Again many thanks for your advice, yours john g gerrish.

  12. Wow!! This was kind of amazing to read. I am really happy to know that I’m not the only one that gets like that. My hands hurt, knees ache like crazy, head aches, and my lower back always seems to hurt. I sound like a very old woman even though I’m only 18 now. Lol Oh well. I’m very glad to hear I’m not alone, but kind of upset at the same time. No one should have to go through this. Such is life.

  13. I was diagnosed with UC 3 years ago in May and only experienced joint pains once before last week, which was not long after my initial diagnosis. I was on steroids at the time and the night before I took something to combat some of the side effects of the steroids and the Dr at the time thought I might have had a reaction to that medication.
    The pain was that severe, I woke up in the middle of the night thinking that someone had hit both my knee caps with a sledge hammer.
    As I mentioned I hadn’t felt this pain again since this week. I am currently in hospital due to my UC, however, I’ve responded really well to Cicisporin and my bowls are feeling better than every, but for the last week have been waking up at 2/3am each morning with the same constant pain until 9/10am. Codeine and paracetamol don’t do anything, I even had a small dose of morphine last night which didn’t take any of the pain away either.
    Very interested to learn more about how diet may be leading to cause the pains as what I’m eating at the moment (a lot of fish and mash) has really helped with my UC and BMs.
    Any suggestions or tips would be very welcome as I’m fearful of only getting 2 hours sleep again tonight!

  14. I have read all of the above statements. I have UC now for 5 months and I am taking Delzicol400MG. I never had any joint problems. Now 5 months in and Meds this just occurs out of the blue. I think it may be the drug I am on now for 5 months -9 pills a day (Delzicol). Not one person above suggest its the Med’s? Can that possible be?????

  15. I just about joint pain. when I was diagnosed 10 years ago I had severe pancolitis and was taking imuran prednisone and mesalamine tablets.
    The doc CHANGED the MESALAMINE to SULFASALAZINE and the joint pain almost totally ceased.
    Something in sulfur’s molecular structure addresses the joints.

    I used to be a pharmaceutical sales rep so I know a bit about GI doc’s rx habits. Now they push Asacol HD. Does NOTHING for joint pain. Sux.

  16. Someone mentioned spondylitis as a common uc sidekick.
    my lower spine has been really hurting for at least 2 years and my doctor hasn’t brought it up. How do I bring it up without looking like a hypochondriac? (My doc -who i trust-Errs on the conservative side and is either stumped by my case or doesn’t seem to take me seriously. after spending the past 6 months in bed because of the flare that was only in the lower region what was causing me as much symptomatic discomfort as severe colitis, and after prednisone and AsacolHD titrations I finally convinced him to readminister Remicade. I just got my 2nd infusion yesterday, helping minimally- i digress. )
    Does anybody has spondylitis know about the symptoms, tests, treatments?

  17. My UC has manifested in arthritis in my hands, ankles and neck. My gut issues, which one would expect to be a UC problem, are virtually nonexistent (controlled, I think by diet and lifestyle). The arthritis, however, has become debilitating. I’ll be starting Humira in less than week. Nothing else has worked and while I’m not young (60), I’m not ready for a walker and a La-Z-Boy just yet. Yes, I understand the risks of Humira, but I also understand the potential benefits. The life I have now is not one I imagined for myself and when faced with the current and worsening restrictions, I’ll gladly go big pharm.

  18. Hi folks!
    First off, I’m so glad I found this site. Thanks so much to everyone for sharing their valuable information and experiences. I have struggled with UC symptoms for about 4 years now, have definitely had proctitis for a while longer than that, and have recently been seeing a doctor about it as it has gotten worse over the years. Even though I haven’t had a colonoscopy yet, my doc seems pretty sure that I have UC, and sadly the more I educate myself the more it seems to be the case. My joints and muscles started becoming stiff and sore several years ago when my gut was getting worse, in a way that seemed like nothing I do seems to alleviate the stiffness. Yoga, diet, and fresh air all help a lot, as well as turmeric, and cannabis works very well for me too.
    Fortunately, even though I have lived with this disease (or something quite like it) for years before being diagnosed, I have already intuitively made many of the dietary changes that people with UC seem to do well with.

    Thanks again! I’ll be lurking until I get my colonoscopy results, for sure!

  19. this the first time I every had joint pain in my hand my thumb and two other fingers got stiff and I could not move them, I schedule a appt. with my doctor. my uc is getting better I am on prednisone I still bleeding but not very little.

  20. I found the survey results interesting. My 5 year old was diagnosed with UC 5 months ago so I am still learning so much! The book The Autoimmune Solution by Amy Myers MD talks about how joint pain is common in most autoimmune disorders. It’s a great read!

  21. Hi Adam,

    Thank you!! This was a gem!
    I just started my SCDiet and one of the things I noticed was just how good my WHOLE body felt — joints included.

    I can’t tell you how much I appreciate your work on this – it reaches so many, providing normalising solace and thoughts of other helpful options.

    Cheers, tess

  22. Does anyone else run a low grade temp (99.2-100) when joint pain is,present? Mine seem pretty good in the morning, but progresses throughout the day. As the joint pain gets more intense, my temp also goes up. Ibuprofen helps, but I try to minimize as much as possible. No GI symptoms, seem to be staying in remission.

  23. I’ve taken so much crap trying to get to remission I can’t believe it. I’m almost there now. 2 BM’s a day sometimes only 1. Started at 8+. Back still hurts. Took a year so far. VSL #3DS did the most good but was expensive. I had lots of blood in beginning not to mention prednisone. God what a terrible drug. And the damned enemas. I still take 1/2 packet of VSL a day and sauerkraut at night. I could list what all I take but everyone is different so I won’t. Acacia powder worked really good for me too. Stopped the liquid poop right away. Good luck everyone. Oh, and yes, Leaky Gut is REAL and is probably the cause of some UC cases cause I have visible signs of it after I eat. Enzymes helped but no cure.

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