44 Responses to 99 Person Colitis Joint Pains Survey

  1. berria January 27, 2012 at 2:19 am #

    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!

    peace,
    b

    • Jerry August 9, 2012 at 8:04 am #

      Glucosomine MSM was recommended by a trainer and it works well for me as it clears up the pain sin my knees and elbows.

    • Cathy December 21, 2012 at 1:41 pm #

      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.

      • Adam
        Adam December 21, 2012 at 4:03 pm #

        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

        • Hayley December 24, 2013 at 6:35 am #

          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.

    • Peachtree February 1, 2013 at 9:45 am #

      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!!!!!

    • Marsha January 26, 2014 at 8:24 pm #

      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

  2. Ashley January 27, 2012 at 2:07 pm #

    sweet rap at the end!

  3. Tony (UK) January 27, 2012 at 4:43 pm #

    Wow, that’s some survey and I like the film clip.

    • Adam
      Adam January 27, 2012 at 5:00 pm #

      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,
      adam

      • dawn May 13, 2012 at 7:41 pm #

        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…
        Dawn

        • dawn May 13, 2012 at 7:46 pm #

          correction- Rubin. Great books by him also…

  4. Bev January 27, 2012 at 5:25 pm #

    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…

    Bev:)

    • Adam
      Adam January 27, 2012 at 5:40 pm #

      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,
      Adam

    • dawn May 13, 2012 at 7:45 pm #

      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..
      Dawn

  5. Patti January 27, 2012 at 6:08 pm #

    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!!

    • Jamie May 10, 2013 at 5:21 am #

      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 :)

      • Caroline Merkel December 1, 2017 at 5:47 pm #

        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.

  6. George February 6, 2012 at 4:22 pm #

    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!

    • Leon Angel February 23, 2012 at 1:39 am #

      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.

  7. Kathleen March 20, 2012 at 8:26 am #

    I have been diagnosed with UC two yrs ago.I’ve had IBS for 21 yrs and Pancreas malabsortion I have a lot of joint pain I can’t hardly walk.Help

    • Adam
      Adam March 20, 2012 at 8:55 am #

      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.

  8. Shirl March 28, 2012 at 12:07 pm #

    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!

  9. cindy June 5, 2012 at 1:29 pm #

    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.

    • Adam
      Adam June 5, 2012 at 4:35 pm #

      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,
      -Adam

  10. Connie July 11, 2012 at 1:49 pm #

    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!

  11. Robert August 14, 2012 at 2:10 pm #

    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 ;-)

    Robert

  12. Lane September 22, 2012 at 2:40 pm #

    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.

  13. k.colney October 2, 2012 at 9:16 am #

    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 ibd.here 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

  14. john g gerrish. October 5, 2012 at 5:16 pm #

    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.

  15. Autumn November 1, 2012 at 12:14 pm #

    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.

  16. Stefan February 14, 2013 at 4:34 am #

    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!

  17. Diane Kenny September 8, 2013 at 9:48 am #

    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?????

    • Adam
      Adam September 8, 2013 at 6:02 pm #

      Hi Diane,
      Unfortunately it’s possible, but you’ve got a great point. Crazy that that was not mentioned right?

  18. alibee January 4, 2014 at 1:09 pm #

    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.

  19. alibee January 4, 2014 at 1:19 pm #

    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?

  20. Rick August 31, 2014 at 6:17 am #

    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.

  21. Cody H October 21, 2014 at 1:00 pm #

    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!

  22. irene December 12, 2014 at 10:23 am #

    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.

  23. Jaci July 4, 2015 at 4:22 pm #

    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!

  24. Tess July 15, 2015 at 2:08 pm #

    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

    • Adam
      Adam July 15, 2015 at 2:44 pm #

      thx so much Tess:)

  25. Jon May 21, 2016 at 3:41 pm #

    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.

  26. Nolan November 22, 2016 at 2:26 am #

    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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