i have always had joint pain even way before i started showing UC symptoms, today i woke up, felt fine around 6:30, come 10:00 i feel like i can hardly lift my left leg it hurts so bad, forget about trying to turn a corner or even going from a standing position to sitting. the pain is so bad and excruciating. does anyone else suffer from this and mind me asking what your taking for it?
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Does it feel like arthritis pain that you had before? Extra-intestinal symptoms sometimes return intermittently even post pouch. Sorry -- this sucks. Call your GI? I am reading this like you feel like its in your joint.
best way i can describe it is to say that it feels like the spot where my leg and hip attach feels like its just bone against bone with a nerve trapped in the middle.
If you feel it in your groin (front)-- and you had arthritis before you need to call your doctor. Do you still take UC type meds? I guess there are a lot of things it could be if you didn't over do it with a work out. If you had arthritis before that would be my concern. If I get hip pain (flare-ish related) it is burning and it burns like the dickens in my hips. Nerve pain would potentially shoot down your leg, so if it is localized to a specific area its what it makes me think of. I had bilateral hip pain 2 months after my TPC and it went away on its own but boy did it hurt. Maybe someone else will weight in. I am more conservative, so if it is something similar or seems in the joint I would call the doctor sooner rather than later. Hope it is improving through the day.
DG,
You are describing my life.
In my case I had a mild to intermittent pain that would calm after long walks and other physical activity (inflamation likes execise...it works better than pain meds on me)
Then one day about 2 yrs ago I walked up the hill to work carrying a ton of school books, lunch, purse etc (I was carrying everything unevenly off of my sides) and the next day it felt like the hip was on fire. I couldn't get up, sit down, turn over in bed, raise my leg up, bend etc...hell.
I tried massage, cortison shots, anti-inflamatories, pain meds etc...heat, hot baths...you name it.
It's been 30 months and I have never found steady relief. I get adjustments that help a lot and combined with PT massage and exercise I feel better but it has never goes away.
You need to address this quickly and see your doctor...maybe get x-rays to see if it isn't sciatica. (a huge problem with us)
My official diagnosis was sacroilitis.
I live with it but don't like it. No cure, just treatments..
Sharon
any long term steroid use? can cause severe joint issues all the way to necrosis, which my sister had
My hands are shot. I've been evaluated a half dozen times for RA, which my mother has. I APPEAR to have it but I don't. Every joint in both hands are ruined. My hands hurt all day and the pain wakes me at night. I can not take NSAIDS due to the J Pouch. Are you serious about the over use of steroids?!! That was Chico's answer for my troubles. At one point you couldn't even recognize me due to the weight gain, or whatever it was called. I couldn't even wear shoes. One of my doctors in San Francisco told me I'd never be put on steroids ever again.
I am absolutely serious about steroid use. I had UC and my sister has Crohn's. She was on steroids for four years and had to have her hip replaced at age 40. I am not trying to be alarmist, but I believe in honesty and being informed. Here's a decent article:
I'm 5 weeks post take down, and I've had some connective tissue/muscle pain, but nothing major. It feels like an injury (strain or a sprain), but I haven't done anything to cause an injury. It usually only lasts about 24 hrs. It seems to be decreasing though. Right ankle was first, then left ankle, then right wrist, then left wrist, then right shoulder, then left shoulder. No pain at all right now, so I hope whatever it is has played out.
I've had hip pain, along with other joint pain, for well over a decade. I have enteropathic arthritis (a related disease of ankylosing spondylitis). A hallmark symptom is low back/upper buttock pain that persists for 3 months or more (sacroiliitis). The only thing that helped make it manageable was treatment with biologics, and exercise.
But, since your pain is not long term, it is probably too soon to think it is inflammatory. Still, if this does not improve soon, you need to have it checked out. My inflammatory arthritis caused accellerated osteoarthritis and I mow also have spinal stenosis and get nerve root compression easily.
Jan
I will throw his out there .. when I had a "leak" in my pouch, it appeared as if the fluids settled to the lowest part of my body. When I walked I had severe pain right at my ass, but it was inside the pouch. When I laid down it felt better, seemingly, the offending fluid moved.
Just a thought, wondering if it is an internal abscess leak of some sort that could have settled in your hip area? I hope this is not the case, hope it is something simpler and you're doing better!
Never.. Ever had hip pain before my surgery.
I have no idea what it is and neither does my surgeon. I'm not going to see anyone about it. Tired of Dr's. Only way I will go is if it immobilizes me!
I sure can understand not wanting to get it evaluated, especially since it is intermittent. I waited through more than 6 months of constant and increasing pain before contcting my doctor. I was trying to wish it away or assume I was just being a big baby.
Jan
I pretended for a long time that it was getting better or would get better soon...it did not.
Now I live off of nsaids, 1000mg/day with something to protect the stomach just in case.
As long as I can take them I will and will change to something else when I need to (and my rhumatologist agrees)...
Here they do not seem to like or know about biologics so I am on standby.
Never ignore pain. Get a consult and find out where you stand (no pun intended).
Sharon
Richard.
Hi branchy when I had my illeostomy it did not stop me going for my massage can't get by without having remedial massage once a month, the guy I went to had a toilet handy so I would empty it just as I went in,my guy was really understanding made me feel comfortable no embarrassing moments. Massage really helps to keep me moving.
Theresa
Left hip, feet, hands, and lower back hurt badly. 12 years since j-pouch and have had some recent stress. Is there anything medical professionals can do to help? I don't ever want to take steroids again. Have not taken them formany years,but I clearly remember that experience.
Kevin, without a diagnosis you can't get a useful answer to the question of whether medicine can help. Has a doctor examined you, or done imaging studies?
Dx of Enteropathic Arthritis. Thanks, Scott. I do need to see my GI, etc. Going through the tests and evaluations are, however, things I try to avoid. I need to change my attitude toward treatment. Again, thank you for your reply.
I have enteropathic arthritis. I take Cimzia injections (previously Enbrel, Humira and Simponi). I also take sulfasalazine. I use tramadol and Robaxin for pain and spasms. For flares I use NSAIDs (Relafen for up to two weeks). If that does not work, then a fast prednisone taper. If only a few joints are bothering me, I get a steroid joint injection. But, the biggest thing I do that helps maintain my function is daily walking and stretching.
Not a perfect solution, but gets me through the day.
Jan
Thanks, Jan! I had success 5-6 years ago with sulfasalazine when I last had this joint pain with a flare. I don't want prednisone because of previous experience with that. I appreciate you and others in this group. Thank you.
Jan, you are so right about the exercise. Walking and riding my bicycle are things I need to start doing everyday---did for years and just got in a difficult place with my life and have not done those things since summer.
dgtracy posted:i have always had joint pain even way before i started showing UC symptoms, today i woke up, felt fine around 6:30, come 10:00 i feel like i can hardly lift my left leg it hurts so bad, forget about trying to turn a corner or even going from a standing position to sitting. the pain is so bad and excruciating. does anyone else suffer from this and mind me asking what your taking for it?
I started to get extreme joint pains about 2 yrs after my j pouch surgery. Especialy knee and ankle pain, but also nerve like extreme pain from my hip down to my heel, omg, that isnt permanant thank god but when i get it the pain is so bad it makes me feel sick. I was prescribed the obvious narcotic pain killers but very quickly became addicted to those, that addiction was worse than the original pain so try and not go down that road if at all possible. I was prescribed what was basically a pharma version of heroin! It seems a common side effect of j pouch surgery to experience these types of pain sadly...
ironic to have seen this thread revived, i had a doc appt with my Rheumy the other day, i was told this was all Enteropathic Artheritis around last year sometime, been seeing the rheumy for a bit, shes talking about putting me on cimzia. last week i went to get out of bed and just fell, i tried to walk a bit more to see what happened and soon as i took another step, down i went. it took a good few hours for the pain to loosen and i could walk better and better, but i have been taking Tumeric with Bioprene and i havent been this pain free in over a year, it took a month to see anything come from taking it but i was doing great, then that fall happened and 3 days after that im back to doing great, i feel like i could run a marathon if my pouch wasnt so angry the past two days.
This may be met with scepticism, but i can honestly say for my debilitating aggressive sacroilitis the only thing that makes it go away is to avoid all starch. I had some success with curcumin (life extension brand) and feet up the wall yoga pose but it was all temporary the only thing that made it go away was the no starch diet.
You can learn more about it here http://www.kickas.org/londondiet.shtml
There are a number of folks with ankylosing spondylitis and related disorders that see improvement by drastic elimination of starches.
Jan