Colitis Joint Pains

 Adam from ihaveucDo you have joint pains and colitis?

I sure had that.  It’s been about six months now since it was really bad, but when those joint pains started, you’re not sure what to do.   If you are having joint pains with your colitis, you are definitely not the only one.  There are tons of us who have this symptoms of the colitis.  But yeah, its horrible.  I even thought that if I had to choose between one or the other for the rest of time, I would take the colitis at times.  The joint pains can be really bad, and they can totally effect your life in bad ways.  But, there is light at the end of the tunnel, the joint pains don’t have to last forever.

Did you have joint pains prior to having colitis?
Some people say yes, others no.  For me, I think the answer would be no.  I was in pretty good shape my whole life prior to my colitis symptoms stopping me in my tracks.  Biking, water skiing, that type of stuff without any pains.  But, what I do remember is for several years before being diagnosed, having lower back pains that wouldn’t go away.  I started thinking I pulled a muscle in my back, or screwed up a disk or something.  I even was going to this holistic back Chinese medicine place and doing all types of stretching etc…  Did not help the back pain much at all.  Back then (4-5 years ago), I was getting more and more bowel movements per day.  And the blood was starting to flow.  This was prior to being diagnosed with the colonoscopy, and yes I was in severe denial.

Why do the joint pains happen?
On the technical side, I have no idea what is going on here. I have seen Rheumatologists, the doctors who specialize in arthritis, osteoperosis, joint pain, and auto immune stuff. Well, most of them had seen colitis patients with similar joint problems, but getting a full on answer as to why this is happening was rather difficult. So, this whole colitis joint pain thing to me is something that each one of us can make up our own theory on why its happening. Here is my theory, the body is out of wack, the immune system is attacking, stuff is getting inflamed, including joints. I try to compare it to a car’s engine. If you put a whole bunch of sand in the engine, all of the moving parts are going to have a bunch of grinding going on. I think that is similar to what happens to colitis people who suffer joint problems. There is too much junk going in the body(for me food I had no business eating) and it was messing up the joints and causing them to be inflamed. And in the end, nerves were being irritated from the inflammation causing the brain to say “OUCH”.

A Double Wammy for Colitis People
As though going to the bathroom ten times a day and bleeding out the back end wasn’t enough. Now some of us have this joint issue to deal with too. And it kreeps up bigtime during sleep. Making the hope of sleeping darn hard. And also, many people are dealing with the joint pain in the lower back making us think we must have pulled a muscle! Let’s get the VICODIN out. Don’t feel ashamed if you need to pop some vicodin to get past these pains. I sure did. And I like it alot. But, that is a temporary fix. Let’s figure a long term plan to get rid of the joint pains that colitis brings on.

Fix the Joints Please
For me, once I implemented the diet I follow, joints were not my problem anymore. Now, I am a normal person again. I don’t need to be pushed out of bed like before when my arms were useless since it hurt to much to move them. I was really pissed off for months knowing that my colitis had potential to ruin my joints forever. But, now I am not worried about that at all.
If you too are having joint pain, and have UC, give it a serious try changing your diet. If you are currently eating breads, grains, dairy, refined sugars and the other illegal stuff, DEFINITELY give it a try. You surely won’t be the first to get rid of the joint pains by changing your diet. Here is a link again for the diet book from Amazon- HERE. Well worth reading at least once.  And when you’re through with that book.  You can jump in and get started reading the two ebooks I wrote which detail my whole experience with UC and there’s also a cookbook that is included in the package which lists the meals my wife and I make up.(Mostly real simple stuff so no complicated cooking here.  Here’s that link:  my ebooks )

Tags: colitis, diet, inflammation, joint, pains, symptoms, Ulcerative





83 Responses to “Colitis Joint Pains”

  1. mikeMay 30, 2010 at 7:21 pm #

    Hey,

    I just read your reply to joint pain related to colitis. You had left a link for a book from amazon but I cannot see it. Can you tell me what the book is? Thanks!

    • AdamMay 31, 2010 at 6:16 am #

      Hey Mike,
      It’s here: diet book

      • SusieJuly 8, 2012 at 4:09 pm #

        Hi there, just been reading all the stuff on your site as I’ve been real scared this last month as I’ve had UC for about a year now and taking suppositries that have been working really well but these last two months my back and hips have been so sore. I’ve been terrified that I’ve got arthritis but reading all the stuff about UC and joint pain it’s actually made me feel a lot better. I hate having the pain and I’m praying that it won’t get any worse but the thought of arthritis was so scary. I’m going for blood tests to see exactly. If it turns out it is because of the UC, what is the best thing I can do to reduce the pain or to keep it at bay. Thanks so much.

        • RobertMay 5, 2014 at 2:30 pm #

          Well, I finally have had some light shed on the reasons I feel so bad! I am going in tomorrow for a colonoscopy, the preliminary diagnosis was diverticulitis, then colitis, until the Dr realized I could not lay still because my back and hips were hurting so bad. To add insult to injury I am 3 weeks out from the worst kidney stone surgery I have EVER had. Seems to be no end in sight! I need that diet! There is no way I am succumbing to this pain…..

  2. PaulNovember 22, 2010 at 2:32 am #

    I was just diagnosed with uc three days ago and have been having horrible knee and back pain along with bathroom visits upwards of 20 times a day. Other than now being on pills three times a day and dieting, what is some of the first things I can do to help

    • AdamNovember 22, 2010 at 5:54 pm #

      Hi Paul, welcome to the site. I found that my sole treatment of the scd diet has helped all of my symptoms alot. Have you read the SCD pages kn the site? Which diet are you following currently? All the best-Adam

  3. StephanieMay 14, 2011 at 8:31 pm #

    I have had UC symptoms for over 25 years (since I was about 8) and had my first colonoscopy in 4th grade. For some reason I didn’t get diagnosed with UC until a year and a half ago even though I bleed for all those years. I think it took so long because i have horrible constipation issies and never had diarhea. Crazy because when i was diagnosed my whole colon was ulcerated, bleeding, and infected. Even though it was supposedly bad my joint pain causes me more pain and aggravation. The joint pain started about 10 years ago and gets worse each year. It started with my ankles and is now in my knees, hands, elbows, and hips. Sometimes my joints get really swollen, red, and painful to touch. For me pain killers don’t help a bit so my drs give me ambien just to sleep. The rest of the time I just suffer and do my best to get through the day. It’s nice to know others have joint pain and some of you finally have relief. I’ve seen numerous specialists (one who calls it IBD arthritis) and have tried many arthritis meds but unfortunately nothing has worked. I am going to look more into foods I shouldn’t eat in hopes I will get some relief. Where can I find a list of foods to avoid? Any help is greatly appreciated. Good luck to everyone :)

    • AidaJanuary 4, 2012 at 11:01 pm #

      I have searched a lot through Google about Natural Progesterone Cream developed by Dr. John Lee (2003 he passed away)
      My sister’s Acupuncturist prescribed it to help her with her UC symptoms since progesterone has an antiflammatory effect.
      Women need only 20 mg. daily and men only 10 mg. You apply it directly on the skin where it is thinner (neck, inner forearms, inner legs, behind knees and rotating the application place everyday)
      It helped my sister. So you could search and try it. Since is a natural product you should find it in Natural Products Stores or over the Internet.
      In fertile phase you apply it from day 11 to 27 of a cycle counting as day 1 when the flow starts.
      In menopause phase you apply it for 25 consecutive days then make a 5 day break and start again with the cycle.
      If you look over the internet you will find that it helps with joint imnflammation apart from helping reversing osteoporosis by increasing bone density and many other benefits related with unbalanced progesterone in women as headaches, irregular periods, cramps, menopause sympthoms, migraine and also with arthritis.

  4. TomJune 12, 2011 at 5:23 pm #

    Hello everyone, I was diagnosed 10 years ago with UC. My doctor said it was the worst case he has ever seen when he first saw me. I was into bodybulding and have struggled to workout without a flair up since I got diagnosed. Probiotics and the Specific Carb Diet (SCD) Made a HUGE differnce. SCD basically involves eating NO bread. I ate a ton of banannas and peanut butter and fruits and vegatables. I would get a frozen bread made of almond flour that was good with peanut butter. I would eat meats and take multi vitimin/mineral. I have tried many many things. I am not able to workout on a full routine, but it is probably better because it lets my body rest. I am now on a quest to end my joint pain. I never 100% related it to uc, and have a rheumatologist apt being scheduled by my physician now. Last week He took bood for tests and gave me a shot. I have been so beaten down by this pain I really dont know what kind of steroid it was, he just said he has something that could help and I jumped right at the chance. I also have been 100% medicine free with no asacol or ever over the counter stuff up intill a couple weeks ago when I made the decision to get this fixed because my life has really sucked becasue of this. This shot MADE ME FEEL GREAT!!! Looking back, the last 4 days of my life have been the best days of my life in the last 8-10 years! Today my symptoms are comming back. But the break from the pain I know will make dealing with the pain again easier. I am now on a quest to find long term treatment for my pain. The doctor thinks it may be targeted inflamation on the tendons of the muscles, so its not the joints so much but the muscles around the joints, which makes sence to me. Good luck to you all… But if you have intestine flair ups I stuck to a hardcore scd diet with tons of yougart and now I can eat almost ANYTHING and I get no intestinal flair up. It is like my intestine fixed itself. I found out I am lactose interolant…some people may have this and not even know. Kefir is a yougart smootie that has tons of probiotics and is Great. I did all of these things and now do nothing and was 100% medicine free, untill now. Im now on a quest to fix my joint pain.

    • AdamJune 12, 2011 at 7:20 pm #

      Hey Tom, congrats to you for deciding to go on a quest to fix your joint pains. When you find the solution, please please post it here, as I’m still in and out of some joint/tendon tenderness every once in a while. I can’t seem to figure it out completely, but it sure is odd. Most best of luck to you with your current health mission, its crazy how some colitis people can live with moderate or mild colitis “intestinal” issues, but the joint stuff can actually stop us in our tracks at times too….? Hang in there, you found a way out of the colon issues, you’ll do the same with the joints.
      -Adam

      • NicolaMarch 23, 2013 at 10:09 am #

        Adam,
        How is your joint pain now? I guess I was having some symptoms before I was diagnosed however it was the severe crippling joint pain and taking Advil everyday to deal with the pain that got in a GI mess! At least I feel that the Advil made it worse, GI doc not completely sold (I’m an RN so I tend to question A LOT). My pain was severe for about 2.5 months STRAIGHT, at about 1.5 months in bowel movements were becoming constant it seemed and I was losing weight tremendously fast. Colonoscopy pictures made me cry, but the joint pain is the worst for sure. So far I am pain now, was taking Lialda but like a bad nurse I stopped it side effects were not for me I was still having to go to the bathroom all the time but because of urinary urgency instead! I even tried to focus on holding it in one day just to feel even worse when I couldn’t :( I too changed my diet and added probiotics, aloe vera juice and fish oil (started that before MD Rx & was feeling better should have never taken the Lialda). But how is your joint pain, how often has it come and gone for you and how long does it normally last? Getting married in May and so worried I could possibly be in pain like that again.
        ~Nicola

        • AdamMarch 23, 2013 at 12:29 pm #

          Hi Nicola,

          Congrats on your upcoming wedding!!!! Way way cool, and I hope this joint crap doesn’t bother you at all.

          As for me, the joint pain has never been as severe as it was several years ago. Right now for example I have none of it. But, I have still had some much more minor bouts of it in the past several years. It seems to correspond to times when UC flare ups have crept back into the mix. But in terms of treating it, I have not needed to take any vicodin at all or any other pain meds since it simply has not been very debilitating. But I know and will for sure remember how nasty it can be. The joint pain has pretty much always come in waves when its presented itself. By that I mean it comes sometimes for an hour or less and then is gone for hours and then again comes back unexpectedly. And sometimes its been like that for several days or maybe even a few weeks. Its real weird how it can come and go, and many others have mentioned the same type of deal.

          I wish you the very best,
          -Adam

    • RichieApril 13, 2013 at 3:30 pm #

      How did this turn out?

  5. ElizabethJune 16, 2011 at 8:17 pm #

    I just randomly found this while searching UC and joint pain. I thought I would join in. It can’t hurt…considering I hurt all over..I was diagnosed with UC in 2007. I started having bad migrating joint pain 1 1/2 years ago. My UC flared some, but compared to the joint pain, was tolerable. The joint pain is completely debilitating at times. It hurts to type this now. I have been tested for everything under the sun and while on clarithromycin for a sinus infection, my joint pain went away. This led my docs to think I possibly had lyme disease! After 2 months of clarithro, the joint pain came back and with a vengence. I am interested in the SCD and will give it a try. I am only 30 years old and cannot take this! Any advice is welcomed. Or just the fact I had this spot to vent helps. Thank you for listening.

    • AdamJune 16, 2011 at 9:11 pm #

      Hey Elizabeth,
      I’m so happy you found the site. When I started the site several months ago to write about my UC and how SCD has helped me, I never thought thousands of others would be wondering the same stuff as me, and FOR SURE I had no idea how many others(thousands too) have the joint pain stuff which totally SUCKS. But its true, the joint pain almost goes hand in hand with UC for so many of us. And just like you said, its often worse to live with than the “gastro UC stuff/symptoms” so I totally hear you on that too. I think that its a great idea if you decide to give SCD a try. Also, feel free to write your full story to get the most exposure to others here, as it will go on the top of the homepage of the site. there are new stories submitted everyday, and from what others tell me, the biggest benefit is pretty much just venting the whole things out and hearing back from others. thx again for joining us, and you’re perfectly normal I assure you for having joint pains with your UC. -Adam

  6. ElizabethJune 22, 2011 at 12:32 pm #

    Thanks, Adam, for your reply! It is so reassuring to hear a group of people with similar issues and possible solutions through SCD. I am easing into the SCD by starting gluten free. I have read recently that celiacs disease and gluten allergies can also be connected to joint pain and UC. That goes hand in hand with the scd diet so it kind of makes sense.
    So far it has been going pretty well. I will post my story and how things go on SCD.
    Thanks again for the site!

  7. AmyJuly 13, 2011 at 11:40 pm #

    Hey ‘all, I’ve been a UC sufferer for the past 16 yrs but I have had a GREAT deal of help thru the Crohn’s & Colitis Foundation of America!! http://www.ccfa.org is anyone else familiar with them, their constant studies, webinars/conference calls quarterly AND, thanks to them, I wasn’t stuck with an external iliostomy bag from age 23 up! :) Take care of yourselves everyone.
    Amy

  8. MelissaAugust 14, 2011 at 9:29 am #

    Hi! I suffered with UC for 19 years and have now had an ileostomy for 20 years. Before my surgery my back hurt so bad I couldn’t even sleep. The surgery took that pain away but beginning just a couple years after surgery I started having severe joint pain. For a couple of years it would flare in my hip and I literally could not walk during a flare. My joint pain seems to stay in an area for several months to several years then migrates somewhere else. The pain is currently in my lower limbs, especially my toes. Sometimes I can’t sleep because my toes hurt so bad. I am on mobic twice a day. It seems to take the edge off the worst of the pain but some days are better than others! Does anyone else have joint pain and an ileostomy? My theory is that although I no longer have a colon, the UC manifests itself through this joint pain. I also still get erythema nodosum on my lower legs every now and then.
    Thanks for listening!
    Melissa

    • MissyJanuary 4, 2013 at 12:19 pm #

      Hi Melissa,
      Just read your message about your joint pain, I am 41 yrs old, have had chronic UC for 20 years, and the joint pain is really bad especially in my toes, back spine area and SI joints in low back and fingers. I have my colon but have not responded well to med’s even prednisone but even though I suffer daily I wasn’t ready to have my colon removed, my GI Dr.’s told me it there was no guarantees. I have a horrible time trying to sleep with the joint pain, I know what you are experiencing. Good Luck and let me know how your doing. My names Melissa too!

      • Melissa FandlJuly 29, 2013 at 9:39 pm #

        Hi Melissa,
        I hope you are still using this ihaveuc site. My name is Melissa also, I just turned 42 this June have had chronic UC since I was 19. My story is exactly like yours, I read what you wrote and it sounded like I wrote it. I have terrible joint pain just like you, my SI joints and spine hurt so bad I can’t get proper sleep and my the joints in my fingers and toes hurt horribly. I’ve seen a long list of GI specialists and no one seems to know a thing about the joint pain other than the UC patients like us. I just wanted to share this with you because you have the exact same experience as I do. Sending you well wishes. Take Care, Melissa also

        • toniAugust 3, 2013 at 11:37 am #

          Yes I still when I’m flaring have terrible joint pain. I was actually in remission when I went on vacation and was hoping it would last. I had 6 weeks feeling great until now. Feeling exhausted and my back and fingers hurt!

          • Catherine EdwardsSeptember 8, 2013 at 12:40 am #

            Hi, glad to see this years dates as I have just found this page. The joint pain is the biggest problem of my UC, there are times I can’t take a step due to pain in my hips. Sleep is very difficult. The inflammation in my toe joints has caused my toes to separate out of place but yet my gi doctor doesn’t see it as linked to UC, why is this? It is obvious to all of us that it is directly linked to flare ups and when the disease developed but they refuse to acknowledge it? I have been flaring all year and it is really affecting my life and my children’s, I really would like to find a solution that didn’t involve steroids.

        • KristinaSeptember 8, 2013 at 5:54 pm #

          I am currently going through the same thing, however I am lucky, and my doctors do seem to know what is going on (more or less…)

          They say I have spondyloarthritis, it is a form of arthritis that is yet another issue us with UC may get.

          You guys need to add a rhumatologist to your medical team.

          Also, if you don’t feel your GI docs are caring or informed enough, get a new one of those.

          I have built a team of docs that care, and it really helps. They also listen.

          I may have to go on Remicade (really don’t want to), but there is a diagnosis for joint pain in the hips.

          Also, joint pain in the legs and arms can be directly linked to flare ups, at least according to my GI and my rhumatologist.

          On a side note, one thing I have been doing that my primary doc really likes is trying the anti-inflammatory diet. It does seem to help, but it is a very strict diet, at least the one I was on. If I stray, the pain comes back in full force.

          • KristinaSeptember 8, 2013 at 5:56 pm #

            *aren’t caring or informed enough

  9. ElizabethNovember 7, 2011 at 2:50 am #

    Hi Everybody,

    I posted above a couple of times- the posts from Elizabeth in June. I can’t sleep due to being so angry my doctors and was thinking how much I hope other people aren’t falling victim to trusting too much, so I thought I would inform this group of an issue that may end up being helpful information for some. Here it is:
    For the past 2 1/2 years I suffered from extremely debilitating joint pain and swelling. My UC was not in remission either, but I could get through daily life okay. As the joint pain increased in frequency and intensity last summer, I went back to my Mayo doctors, seeking answers in the fall of 2010. (I had a three month wait to even get in.) Long story short- once I got in to see the GI, I had a colonoscopy, was sent to rheumy and had x-rays, MRIs and CTs in addition to hundreds of blood tests. I ended up having an endoscopy, a sigmoidoscopy and even swallowing a camera pill. I went alcohol free, dairy free, gluten free, vegan, then switched and tried high protein. I did EVERYTHING. The doctors – all of them- even infectious – could not find anything wrong with me other than proctitis. In addition to severe joint pain and UC, I as sick for eight months with a horrible upper respiratory infection. I was laid off from my job in this time frame due loss of sleep from the pain from toes, fingers and wrists swollen to three times their normal size, shoulders that could not help me roll over in the night due to such excrutiating pain and the still unflagging urgency to go to the bathroom all day and all night. My new husband (married last July) had to spend the first year of our marriage caring for me, trying to keep me optimistic when I was losing all hope of finding an answer. I was ready to have my colon removed because of this joint pain. Thank god at least the doctors didn’t look to that.
    I stopped taking the last medication I was on at the beginning of September. Immediately my joint pain became less frequent and less severe. The last I had of it was a sore finger joint in the second week of September.

    It turns out the drug Doc prescribed for me three years ago, Lialda, can cause numerous degrees of allergic reactions in different people. I went back to him this past Friday to discuss this recent news and he confirmed, yes, I am likely part of the 2-4% of people who have a bad reaction to the drug.

    I am so incredibly angry that they continued me on this drug when I went repeatedly for help and guidance to figure out what was wrong with me. They all knew I was on Lialda as I had to confirm all drugs taken at the beginning of every appointment. Why did no one consider this? Why didn’t I consider this?

    My point is, for some of you – I recognize, a very small percentage- but some may be having arthralgias related to drug reactions. I took lialda fine for almost one year so it apparently can have an insidious, mysterious affect on one’s body. I am taking the Canasa mesalamine now which is okay. Since it does not go into the stomach or small intestine, it may not cause the same effects as Lialda.

    Good luck to everyone! I hope you are all feeling better soon!
    Thank you for having this site. It helped me get through the lowest time of my life to just be able to post and have a response. Thank you from the bottom of my gut. ☺
    Oh and my bill – the part the insurance won’t have anything to do with is over $8,000. (after I’ve already paid $3,000).

  10. Janet DammDecember 16, 2011 at 9:13 pm #

    My husband was diagnosed with UC about 2 years ago. He tried many drugs. Prednisone always worked but he couldn’t be on that forever. A new Dr. got him on Remicade and Asacol. He has had 3 infusions since August 2011 and takes 4 Asacol per day. So the UC is in remission. He called his GI Dr. complaining about his hand pain 6-8 weeks ago and was told it was not the medicine by his nurse. He called again saying that his hands are now swollen and the joint pain is up both arms to his neck. They have been trying to get him into a RA Dr. but no appt. available till June! We hear nothing more from this GI Dr. so he has gone to our local Urgent Care twice and his GP to get anybody to listen to him. He is sleeping less and less because of the pain and over the counter pain relief is just not cutting it. Finally today the Nurse Pract. at our local medical office has ordered a whole series of blood tests. We are also working on another RA Clinic to get an appt. in January. What are you thinking about this Dr. from the Spokane Digestive Disease Center for missing the correlation between UC and joint pain???? Do other Drs. know about this connection? Our friend found your website and called me this evening with your relevant info.
    Thanks for any info.
    Janet, UC wife

    • AdamDecember 16, 2011 at 10:12 pm #

      Hey Janet,

      I’m SO SO SORRY your husbands dealing with this joint pain stuff right now. I know exactly what you’re talking about. I had the same deal. For me, it became really bad after I started taking Humira, another immune suppressant as you might know.

      If you go and read through the “Survey” section of the website(second navigation bar towards top of site), there is a survey of UC patients who took Remicade, and it might be interesting to read about the side effects people metioned afterwards.

      Anyways, yeah, I would hope that doctors who practice GI stuff would know by now that joint pains are pretty darn common with UC and other IBD patients. But, the reality is that’s just not the case yet.

      ON THE GOOD NEWS SIDE OF THINGS, it’s been just about 1 1/2 years since i stopped the Humira and almost 2 years since I stoppped remicade(i’m now medication free) and my joint pains have gone down considerably. I’ll have weeks where I don’t even think of them or notice them, and then maybre a day or two of some pains in my right elbow upper arm area. BUT even that “pain” is significantly less, maybe 10% compared to the days where I needed vicodin to sleep through the night.

      I went out to the Mayo Clinic in Arizona, and met with several RA doctors from Stanford Medical Center, and none of them had any quick fix news for me other than trying some other medications like methotrexate, or 6MP to help with the UC. (i personally didn’t want any more of the medications so I opted for plan B which was ride the storm and hope things get better)

      sorry for my ramble, but I know how bad the joint pains really stink, your husband probably thinks they are even worse than the GI isssues, or at least that’s what i was thinking.
      feel free to email me if you like adam@ihaveuc.com

      take care,
      adam

  11. Lillian AdamourDecember 17, 2011 at 11:41 am #

    My joints are painful in front of both ankles and behind both knees! It never seems to leave, but after what I went through with loosing my colon battle, it pails in comparison. I’m post Ileo-anal Anastomosis and I was on Remicade for a year to try and save my colon. It obviosly did not work, but I know it doe’s help many others, God bless them. Nice to meet you Adam and others like me! I’m your comrade in this battle we all carry within our own bodies! Eight sureries and 3 almost dead experiences, my life was saved at The Mayo Clinic in Arizona. Much love…Lillian Adamour!

    • AdamDecember 17, 2011 at 12:22 pm #

      Lillian,

      It’s so so nice to meet you. We sure are in this together, and and we’re all going to survive together. Just when you think that you are alone with some strange mental issues, we get to meet others who are going through the same stuff, and in a weird but awesome way….IT’s GREAT! Have a great day Lillian!! and much love right back at you!
      Adam

  12. Sick and TiredDecember 19, 2011 at 4:27 am #

    I have joint pain as well. In fact, I’m going to have injections in my right knee starting this week. It’s only in my right knee. I’m taking Lialda and also use Hydrocortisone enemas for my colitis which my doctor says is mild to moderate ulcerative colitis. I was wondering if this is related to the colitis as my knee pain just started recently. The doctor took x-rays and says my right knee has arthritis.

    • AdamDecember 19, 2011 at 9:37 am #

      Hey Sick and Tired,
      It’s so hard to say, but since so many people complain of joint pains after being diagnosed(myself included) I think there must be some type of connection.

  13. KarenJanuary 13, 2012 at 10:26 pm #

    I have been diagnosed with UC about 6 years ago now & have recently been to the drs about pains in my right knee. She didnt want to give me anything for it (which Im pleased) she did however say that she thinks it wear & tear under my knee cap. She gave me exercises but dont know if thats working either. I hate not being able to kneel on the floor with the kids as the pain is too much. I also feel it in the hips on the odd occasion. Man it would be nice to be pain free for 5 minutes!

  14. DaveJanuary 26, 2012 at 1:41 am #

    Hi all, I have had UC for pushing six years now and have had an absolute nightmare with it. I was told it wasnt that bad but I have had lower back problems for years and suffer with random joint pains at least once a week lasting for anything upto a week. I bleed all the time now and the docs really arent prepared to help it seems as they keep cancelling appointments and I havent seen my “regular” consultant in nearly two years due to this. I dont have a regular GP either as every time I have been to the doc I always see a “new” doctor and have to explain the whole story again. I am nearing the point of giving up with doctors and the NHS and just trying to cope on my own, I have had no advise on foods apart from the obvious, “avoid spicy or hot foods”. I am still working out what my body can cope with and keep finding that what was once tollerable I now have trouble with.
    Anyone else having no help? I am sick of hurting all the time, be it gut, back joints and generally feeling unwell.
    I am having alot of problems doing my job and am really tired all the time, I need some sort of help and dont know where to turn anymore, depressed doesnt really sum it up!
    Take care all and I apologise for sounding so miserable but I feel like this everyday.

    • AdamJanuary 26, 2012 at 8:36 am #

      Hey Dave,

      I’m sorry you’re feeling so terrible right now. I want to let you know though, we just finished the “Colitis Joint Pains Survey” and I’m in the middle of getting all the results ready to be published. After quickly looking at what others filled out, there are some ideas on how to deal with it within the survey results. So check back with the site in a few more days, and by then I should have that story published on the homepage.
      -Adam

    • chrisMay 18, 2012 at 6:56 am #

      Dave, sorry to here how UC has gotten the best of you,so far. I was diagnosed 2 years ago. I was missed for awhile about the diagnosis until I had to be taken by ambulance to the hospital. Since my wife is a nurse she did all kinds of research to see what would help, apart from regular medicine. I have one of those systems that does not respond to them good. So she put me on the SCD diet! It was very hard to do at first but the more I did it the easier it became. It did help, even if I didn’t stick to it 100%. The best advice you can get is from people who have the disease, then see if medicine can add to the mix with the appropriate help and medicine. One or two doctors cannot even come close to all the experience of the people who have the disease and who already gone through all the hoops. Many doctors are not up to speed on all the issues concerning our plight. I moved to a different state to get the “apprppriate” help from medicine. One of my PTS has Crohns and understands much moer than many doctors do. Don’t give up because there are a lot of us out there that can help in many many ways, including the right doctors. Ypu have to be diligent eat good and laugh as much as possible and get the love from these and many other sites. Good luck, and hang in there.

  15. ChristinaFebruary 14, 2012 at 10:23 pm #

    I have ulcerative colitis and my joints in my knees, hips and shoulders kill me. For pain I would take B.C. Powder. Well I can tell you this, DO NOT do this because I have to have half of my stomach removed now because of a ulcer that will not heal.

  16. ArnieFebruary 19, 2012 at 4:03 pm #

    I have had UC for over 2 years. I suffered for 3 months with bleeding and 10-15 trips to the toilet per day. I had never been so sick in all my life. No fun. I have been suffering with joint pain, from what I remember since i was diagnosed with UC. I have pain in the Hips and shoulders. If I lift my Arm to high, I fall to the floor in un-bearable pain. I didn’t associate it to UC ubtil I searched it on Google today. Sounds like lots of people have similart symptoms. Diet is difficult for me because I am also Diabetic on an Insulin Pump. Anyway its nice to vent with people with similar issues.

  17. JenMarch 30, 2012 at 6:51 pm #

    So great to find this site!!! I was diagnosed with Pancolitis about 5 years ago, and put on Asacol, then Asacol HD. about 2 yrs later the joint pains started. Always seemed worse at night. After seeing many doctors, finaly a Rheumy put me on an old med. of Sulfasalazine. It took a few mths to work, but did the trick for awhile. But, the joint pains have come back, always worse at night, and always varies from different joints:shoulders, ankles, feet, hands, fingers, knees, hips…. uck!! I am willing to try anything, might have to get this book, very interested , but man I love my bread..lol!!! Great to find out im not the only one, I swear my husband thinks im crazy with these odd joint pains :D

    • AdamMarch 30, 2012 at 7:12 pm #

      Jen,

      I konw the feeling, I think some friends of mine were thinkng I was full of you know what, but sure enough, quite a few people have the joint pains too If you haven’t already, go to the survey section of the site, and you can read the colitis joint pains survey reports.

  18. MichelleApril 7, 2012 at 4:19 am #

    I was diagnosed with ulcerative colitis almost 6 years ago. I am now is some what of remission. I take Imuran, asacol, vitamin d, topic acid, and magnesium. I still have a lot of pain when I go to the bathroom. Which I hate more then anything. The GI doctor said it is only IBS not my UC. Yesterday I woke up and two fingers on each hand could not bend because of the pain. I have had this pain before but not tis bad. Now the pain is in both elbows, both shoulders my left hip, both knees and in my right foot. It came on so fast I could. Of believe it. Does this happen a lot to you guys? This is the first time I have had pain this bad everywhere. I can barley move and my husband thinks I am crazy. Any suggestions?

    • AdamApril 7, 2012 at 7:04 am #

      Hey Michelle,

      I myself never had problems in my fingers or hands, but my elbows and shoulders got hit pretty bad when my symptoms were bad. It would kinda come and go, and sometimes it would be really bad for hours and then all of a sudden within 20 minutes it would be gone for a few days.
      Hang in there, it’s gonna get better, but most definitely what you are talking about seems to be really common with people with UC.

      • kaileyMarch 29, 2013 at 1:14 pm #

        Hi I am glad I found this site as now I know I’m not alone. I have suffered from UC for over 4 years. Last year I started getting pains in my hands and my doctor basically ignored it. Now I am in so much pain. At first I though I had siatica but I’ve had this pain for 8months now. The pain is in my lower back, hip, thigh, calfs and feet. I’ve been living on pain killers sleeping tablets and heat gel just to get a good nights sleep. It sounds the same as what other UC sufferes are describing. I feel like my doctor doesn’t know much about this condition as she should.

        • KristinaApril 14, 2013 at 6:14 pm #

          I have found it is important to have not only a good primary care doctor and a good gastroenterologist, but if you are having joint pain, a good rheumatologist is important too. It is also important that they all communicate with each other. A rheumatologist will know more about this condition, since it is their specialty to know about these things. But they need to talk to the gastroenterologist to figure out your treatment plan. Although I haven’t been lucky enough to find a solution yet, I do have a great team dedicated to figuring out a solution. If you don’t like a doctor, or you don’t feel they take you seriously, find a new doctor.

          People with UC have enough problems to deal with, a bad or non-dedicated doctor shouldn’t be one of them.

          I wish you good health and luck. I am going through the same thing right now with severe joint pain, the doctor tells me it is spondylarthritis. (http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/spondyloarthritis.asp).

  19. JessicaApril 28, 2012 at 12:48 am #

    I have been suffering joint pain, mouth sores and a bad case of the poopy butt (lol) for a while now. I have been to many doctors and they all said that it was nothing or I just have sore muscles or I’m depressed (!). Thank god for web md. I looked up my symptoms and up popped UC. I mde an appointment with a new doctor and I demanded that he do a blood panel and a colonoscopy to diagnose me. Sure enough it was UC. The mess he prescribed I will not take. The first was prednisone. I have an allergic to life shar pei who was on that and it made him a fat angry beast of a dog. I can only imagine myself on that. The next was some methy-blah blah named stuff that would cost $160 a bottle!
    I have two kids so spending that amount of cash is not an option. So I looked for something natural and effective. I heard about marinol and how it helps but Its a synthetic chemical that is basically all thc and no CBS or cbns. So I decided to get on medical marijuana. I figure if it is such a great natural medicine that big pharma tried to copy it, then it must do something right. After being on cannabis for a week now I feel my life is coming back. I drink a infused drink called a Dixie elixer and wow, it takes away my tummy pain and I don’t feel like crapping my pants. I also use a pill called a canna tab and it it’s a sublingual tablet that dissolves right under toung. Cannabis has been my saving grace. I don’t feel like vommiting. I can sleep and eat. I’m less bloated and I can play at the park with my boys and not be chained to the bathroom door. I’m not a stoner I’m a patient. I’m a mom. I was sick and going up hope when I found my cure. I encourage anyone who has UC to look up cannabis and it’s beneficial components that aid in inflammation nausea and lack of appetite.

  20. ChelleMay 2, 2012 at 11:46 am #

    Hey there! I have had UC for over 20 years but only officially diagnosed for just under 20 (won’t get into that mess). For the last 6 years I have been in remission while on a daily dose of 6mp (I am allergic to the standard medication of sulfazalazide). This was heaven for me as prior to remission I could barely leave my house to meet my kids at the bus stop on the corner. I have occasional light flares (maybe a day of loose stool) but given that I can go several days without ever having a bowel movement I’m cool with how things stand.

    However, over the last year I have begun to have swollen fingers. This last month or so my fingers and toes have begun to hurt so bad they feel like their broken. My mom has Rheumatoid Arthritis, which the symptoms fit exactly to what I am experiencing. So I finally got in to see a rheumatologist last week and she said she thinks it’s due to my UC. This was a shock to me since I have been in remission for so long. When I got online and read about it I notice that the joint pain is described as elbows and knees mostly. I do not have this problem. Mine, right now, is my fingers and toes. I’m curious to know what joint pain others are experiencing. I got a call today saying that my labs came back fine, meaning I show no indicators of RA. She said that the joint pain caused by UC is treated the same as RA, so I am now on plaquenil to see if that works.

    God bless those of you who can do the gluten free diet. I’m simply not strong enough to keep away from bread, LOL. As long as my medication works I’m happy not having to worry about food.

  21. scott mantyMay 15, 2012 at 2:04 pm #

    hey everybody, i was diagnosed with colitis about 10 yrs ago and 6 yrs ago i had the J pouch surgery, i have had every symptom know to man involving colitis but i just started to get the joint pain, Some days my wrists hurt so bad i dont want to even get out of bed, my wrists have been swollen now for a month and very very painful, i hope they stop hurting soon, it is very hard for me to work but i keep plugging along, bless everybody with this terrible disease

  22. AnnieJune 3, 2012 at 9:38 pm #

    Hello Everyone,
    I have had UC for over 20 years in and out of remission, the past 3 years have been hell, the past 6 months I can’t sleep because of joint pain. I am now on the waiting list for Remicade! But the joint pain “apparently” is not the same others suffer from.. who have UC. My joint pain gets worse with exercise, I do not have any swelling….I don’t think. My knees throb at night and my hips keep me awake, meaning, I sleep on one side wake with pain and then roll over…yes I do this on going night after night! I will try anything, after all I have been through every drug regime possible. I’m also exhausted! exhausted! I have two active boys and a single parent, I hate letting them watch tv but it’s the only time I get a nap in …. only to wake exhausted!
    I’m so glad I’m not alone…I sure feel alone! Yes the remicade is a life long treatment, will it help with the joints!

  23. RobJune 13, 2012 at 5:19 am #

    Hi Adam. Many thanks for your site. I think it’s about time that someone connected mouth ulcers, joint pains and skin rashes with UC. I have had UC for probably 30 years and was diagnosed in 2001. In South Africa there is very little expertise in this condition. Nowhere along my trip with this disease have the medical “EXPERTS” explained what the disease is and what side effects there are along with it. No one ever suggested that I take some form of cramp prevention meds. The major problems are the symptoms of the disease, cramping, loo-dashing and bloating. I found out by myself that these are the things that all all included in the UC package. I am at the stage now where joint pains are affecting my everyday life and things are getting quite difficult for me. I have been checked out for arthritis and the doctors just “assumed” that this is the problem with my legs. I have only just figured out that it is part and parcel of UC. Please keep up the good work you are doing in keeping folks advised as to what we suffer from. Kind regards and have a happy day. Rob S South Africa

    • AdamJune 13, 2012 at 6:40 am #

      Welcome Rob to the site, and I’m very sorry that you’re dealing with some of the toughest parts UC has to offer right now. Specifically with the joint pains, they can most definitely be a horrible nigthmare unfolding. Now for sure you know you’re not alone, and there’s a ton of others who have felt/ are feeling the exact same pains.

      On the bright side, you’ve got to realize that those joint pains don’t last forever, and its not something that you’re gonna be dealing with every single day moving forward. I wish you the very best, and thanks again for your comment.

      -Adam

  24. KimberlyJune 23, 2012 at 10:07 am #

    Hi Adam,

    I just came across your site while looking up “joint pain and colitis”. I had colitis to badly that it turned into colon cancer, and I had to have my entire colon out. I now wear an ileostomy bag, but I still have awful joint pains. When I wake up in the morning I am in horrible pain and freezing cold. I get up to use the restroom, take a vicodin and muscle relaxant, and then get back into bed until it kicks in so I can get up and function. I have a two-year old son, and the joint pain and fatigue get in the way of me enjoying the best years of my son’s childhood. I am a good mom on the outside, but on the inside I am pushed to my limit and feel like collapsing and being in bed 24/7. The pain is worst when I do housework, and on top of that I am a full-time student. My husband helps, but is never home enough because of work to do that much. I tried an anti-inflammatory diet I found online, but didn’t see great results. I ate nothing but veggies, green salads, chicken, fruit, pomegranete juice, and a glass of red wine at night. Last week I fell off the bandwagon because I have hypoglycemia, and this diet lacked the carbs to keep my blood sugar up. I need some serious help! Thank you.

    • AdamJune 23, 2012 at 9:20 pm #

      Hi Kimberly,

      Geez, I’m terribly sorry to learn that you’re dealing with the joint pains still, even after all you’ve been through. I think it’s fair to say that the joint pains are pretty must the nastiest, creepiest, and must pain in the butt things in almost the whole world. Espeically when everything else is working well, and all of sudden you feel like you can’t even move your limbs…. ARGGG…

      I’m a bit surprised though that you didn’t see any good long-termish results from the diet change. The foods you mentioned sound pretty darn close to the type of stuff I eat minus the red wine(but that sure does sound tasty).

      I’m not sure if you’ve already looked into this, but there’s quite a few people I know who swear by the results they’ve received from getting an allergy test. Who knows, maybe that might be something worth a shot for you too.

      No matter what, please stay strong, you obviously are a serious fighter, and you’ve already gotten past some really tough times. You’ll get past the joint pains too, even they come back again and again. If you can think of ways to control the stress that’s in your life, that really might help out as well. Sounds like you’ve got a serious full plate with the school/kid and family stuff, but maybe there are some things you can gain better control of to reduce stress. Stress triggers the immune system, and many docs & scientists believe the joint pains is partially/fully due to over-active immune responses. So some changes there might help out too.

      best of luck, and keep us posted,

      -Adam

  25. Mrs. HudsonJune 24, 2012 at 3:51 pm #

    Ok guys. I’m in a bind here. If this site were a support group, I’d have signed my husband up. He has the joint pain, the colitis, the mouth ulcers, the unimaginable weight loss. The job loss, the frustration. The small child the concerned/scared wife. He was diagnosed in 2008 and with uc and has had no real long term relief. We’ve seen the specialist, the family doc, the gastro doc. Changed the diet, changed the scenery… What can I do from the outside looking in? He’s young, but feels like an old man. How can I help him get better when he can’t eat or retain what he eats?

    • AdamJune 24, 2012 at 9:15 pm #

      Dear Mrs Hudson,

      It’s very tough. Obviously life is super tough for your husband, but maybe even harder for you. You’re not alone though in your feelings. I’m pretty sure my wife was feeling those exact same things you listed when I was at my worst about 3 years ago. I definitely don’t have a silver bullet to tell you about, I’ve had great success with getting past the symptoms with diet, but other people have success with all sorts of different approaches too. I know its real hard to even consider, but surgery has been a great option for many people as well. The point is, there are always options for your husband.

      As a UC patient myself, I’d say that you probably are doing a really great job of being supportive. That’s probably the most important thing. Don’t beat yourself up for not being able to quickly turn things around on your own. Sometimes quick fixes happen, other times they don’t. But just keep being supportive, that’s super important and I think you’ve already mastered that. so big congrats and pat on the back to you!

      -Adam

  26. laurieJuly 1, 2012 at 9:09 am #

    Thank God for this site! I am a Uc sufferer, diagnosed 11 years ago. I had been taking Canasa for 10 years when I asked my Dr. If there were a cheaper med. I could take, o one that would allow me to take fewer pills per day. I take Lialda now(for about a year and a half) and have started to experience the joint pain/swelling in my right knee and left ankle. I went to see an orthopedic who said I have arthritis in my knee and wants me to do a regime of fluid injections. I am scheduled to have my gall bladder removed Tuesday, and I am hoping that I will get “back to normal” (whatever normalis for us) and hopefully the joint swelling will ease. I too have been taking the vicodan for pain, and while it works, I cant do this forever. I just want to be pain free, I cantake the colitis, but the joint pain is horrible and very painful. I will have to try the diet book if the gall bladder surgery doesnt put my UC back to “unflare” mode, because the pain seems to be worse as I flare. God Bless us all who suffer from this!

  27. AnnieJuly 18, 2012 at 10:10 am #

    Is anyone using Remicade? I would love to know if it will help my joint pain, I have to wait another month before starting. Would love some feedback from others on it.
    Cheers,

  28. AmandaJuly 23, 2012 at 7:47 am #

    I was glad to read all of the posts that have been left on this site, it makes me feel less crazy. When you go to multiple doctors and talk to them about increasing joint and swelling pain that can switch areas of the body at any time they look at you like you are a hypochondriac. I was especially interested in Elizabeth and Laurie’s posts about being on Lialda and after a year or so feeling increasing joint pain, because I am also on Lialda for about 2 years now and in the past few months have begun to have random horrible joint pain in my knees, ankles, and now in past month very swollen finger joints and wrist pain. It feels like someone took a hammer to my knuckles, where even carrying a light grocery bag hurts. I am unable to get a solid nights sleep due to the throbbing I feel throughout the night and the pain in my hips and shoulders as though I have been hit with a baseball bat. I also have tender fingertips where they have become swollen as if I have a blister (like when you burn it on a oven or something) that become red and inflamed. I am beyond frustrated since I am usually very active in tennis but haven’t played in almost 3 months due to pain and feeling exhausted all the time.

    Here is a bit of my backstory. I was diagnosed with UC when I was 23 years old. Throughout college and high school I had always needed to use the restroom not long after food that was spicy, dairy, or raw/salad veggies. It wasn’t until I was 23 that bleeding became an issue and I began to loose weight dramatically. I was newly married and while I tried to stay a bit in denial, my dear husband was having none of that and we scheduled me a GI appointment within weeks of symptoms. Two doctors later, I finally felt I was being treated by a knowledgable doc. I tried steroids (put me in remission but caused 20 lb. weight gain every time), medical trials (waste of my time, actually got worse), other drugs like Asacol, flexsigs, suppositories, etc. if there has been a treatment type I have tried it. At the age of 27 I got pregnant with our first child, I was so sick the first trimester I swore there was no way my son was getting enough nutrition. Everyone kept telling me how great I looked with all the weight loss (as I am superstitous and didn’t want to tell anyone until 3 months) and I would cry each night with worry. By the second and third trimesters I felt the best I had in years. After he was born I spent almost every waking and breastfeeding moment in the bathroom, like an automatic trigger. While I tried to hide the extent of my sickness, my husband saw right through the smiles. By the time I agreed I needed help and had to stop breastfeeding I had lost a ton of weight and was so sick I actually begged my GI Doc to take out my colon. He suggested that we take a step back and try a large dose of steroids to kick me in remission b/c this medicine called Remicade had just been approved for UC (but had been on market for years for Crohns and RA). Within weeks of Remicade I was like a new woman, I could take my child out in public without wearing an adult diaper, sad reality but that had been the case at the age of 28. My husband and I always wanted more children but my husband said he would only agree if I promised to confide in him the second any symptoms came on this go around, it wasn’t worth it if I was going to let myself get so sick before seeking help. I agreed, so after 1 year of Remicade and being in remission we, along with my GI Doc agreed we would do a trial run of getting off Remicade and seeing if I could stay in remission (still staying on Asacol) so I could try to get pregnant (wanted me off Remicade for 3 months to avoid risks of birth defects). We were given the all clear and were able to succeed in getting pregnant. My second pregnancy was perfect, I practically forgot I even had UC. Then after our daughter was born I remained in remission for almost a year. When the symptoms came back they came back in full force. Back to Remicade I went running. I have now been on Remicade for 3 years this round and started at every 8 weeks, then went to every 6 weeks and after my father passed away in January the symptoms increased so now I am getting a double dose every 6 weeks. Basically my boby built up antibodies to the Remicade the second go around. In hopes to get a little extra boost, my GI Doc also switched me from Asacol to Lialda. Originally the only Lialda symptom I had was slight acne which I was put on daily Cephelexin for. I had done my online research when I began to get joint pain but it wasn’t until this site that the possible link to Lialda was mentioned. I will DEFINITELY talk to my GI Doc about that possibly being a cause for the pain.

    Thank you for letting me tell my story, was kind of like therapy to me. I will also check out the SCD diet to see if it may help my joint pain.

    I wish you all the strength that I fight to find daily.

  29. KristinaOctober 7, 2012 at 9:37 pm #

    I have UC, and besides a recent mild flare up requiring a month of prednisome, my medication seems to have kept my UC under control for the last couple years.

    However, for the last couple months I have been having debilitating hip and knee pain. My doctor did a million tests, and ruling almost everything else out, he thinks it is related to my UC.

    Since I can’t take NSAIDs, I have been living on opiods to get by (tramadol during the day, percocet at night). I am about to have some MRI’s done, but he is thinking I need to start immunosuppresant therapy. I am currently on mesalamine (I get anaphylexia from sulfa drugs).

    The pain is awful. I can hardly walk at times.

    I am really scared of immunosuppresant drugs. Does anyone have experience with them?

    • toniOctober 10, 2012 at 4:14 pm #

      I have Uc which has been terrible for the past 4 months but I think the joint pain is far worse. Also my abdomin has been disstended like I’m 9 months pregnant

  30. SocratesOctober 24, 2012 at 7:26 pm #

    I suffer from UC. Diagnosed in 2003. First flare in Feb 2012 and second one about two weeks ago (October 2012). The second time came with a surprise: joint pain. I was limping for two weeks.Saw my GI doc and recommended 6MP. I read about this drug and found it it horrifying. Luckily, I found your website and read about the book you suggested: How to break the vicious cycle. I ordered it right away and it is in the mail. But I also found out that this book has info available online for those who want to start the diet early. So I started it early and that was this morning. To my disbelief, my ankels are a lot better. Is it even possible for a diet to take effect in a day?? Was it placebo effect? Unbelievable!

  31. LizJanuary 19, 2013 at 3:14 pm #

    well I was diagnosed in 1971 when I was six; i cannot remember much detail, but I was in the hospital for 4 months, and was considered too sick for surgery. I was on TPN for a long time, and prednisone, but nothing worked. Antibiotics (chloramphenicol) actually turned it around in 48 hrs, and I was discharged home. I was on prednisone and 5ASA much of my childhood, with some hospitalizations scattered, but mostly I tried to hide my symptoms, and jusy pretend I wasn’t sick. Lots of accidents at elementary and middle school, I don’t remember having many friends at school until I was in 6th grade, but actually, I just don’t remember much detail at all. Perhaps a defense mechanism? I had a subtotal colectomy right after college, and then almost immediately started having partial bowel obstructions from scar tissue. About 3 years later I had a total colectomy and the pouch with anastamosis. Immediate complications (a hole in my small intestine) within 24 hours brought me back to the OR to have another piece of bowel removed, and with all the scar tissue due to bowel-contents spillage and peritonitis, I ended up with scar tissue blocking the fallopian tubes, and couldn’t get pregnant. I did ok with the pouch for a good number of years. I had a lot of obstructions and finally had a surgery 5 years later to take out scar tissue (for a total of 5 abdominal surgeries) which did seem to help; I usually only get partial obstructions once a year on average. I will do almost anything to avoid another surgery, as I hear it will not be wise. But then around age 36 I got diagnosed with a lymphoma (CTCL-mysocis fungoides) which invovles the CD8 cells, the same cells that get revved up from the autoimmune IBD condition. I have been very lucky to be alive and be able to work and function but I am definitely sick a lot again — pouchitis which was initially episodic but has gradually become almost constant — I am on antibiotiics almost 50% of the time to control it — right now I am on rifaximin which seems to help. But I am going to try VSL3 some time soon. And I am thinking about the SCD — it has helped me in the past, although I am not sure I ever was 100% faithful. And in the past six months I have started to get bad joint pains — both knees, my lower back, my left elbow, and my hands. It is worst in the morning, and my knees and back are bad everytime I get up to walk — other people definitely can tell something is wrong. None of the joints seem red or hot or swollen. They just hurt. I am thinking about buying a Vitamix blender and starting to use it to help me stay more faithful on the SCD — Does anyone have advice about: (a) recurrent/stubborn pouchitis; (b) joint pains; (c) using the Vitamix blender to help my UC/health; (d) using VSL3 or other probiotics. HELP!? I am lucky I have had 41 years of living with UC, since they did expect me to die back in 1972…. also does anyone else out there have a lymphoma related to UC? I am unable to try remicade or ANY of the immunomodulating drugs, because it would be too dangerous for me with the CTCL. My oncologist has told me that I have done remarkably well (almost 11 years now) with the CTCL, because some of the markers just were not that favorable. They kidn of celebrated when I hit the 10 year mark…

    • AdamJanuary 20, 2013 at 9:50 am #

      Hi Liz,

      Thanks for joining the discussion, and I really hope that you can find some peace and quiet with regards to the UC complications in 2013!

      I think the blender idea is a great one in terms of getting a helping hand with the SCD. I myself have a blender (it was the best wedding gift by far!) and when at home, it gets used at least once per day. Sometimes two or three times. I crank out smoothies in it with frozen fruit and some orange juice and it is a lifesaver.

      One thing that you might want to consider reading are the details from the “probiotics survey” we ran here on the site a few months ago. here is the link to the survey which included feedback from 129 different people with ulcerative colitis who use the site and use/used probiotics:

      http://www.ihaveuc.com/129-person-ulcerative-colitis-and-probiotics-survey-results/

      I wish you the best with managing your health in the future, and so happy to hear from you,

      -Adam

  32. FredFebruary 20, 2013 at 9:45 pm #

    This site is really interesting and helpful for me — thanks, founder and posters.

    My elderly father developed UC after antibiotics (it wasn’t C. Diff. — antibiotic use triggered his autoimmune UC). By the second time he had serious antibiotics, he also had autoimmune thyroid issues. When the UC got under control (Prednisone, then Lialda), he was good for a couple of years with the UC — remission. Last winter (2012) he had swelling in his knee, but no pain. A rheumatologist gave him a topical NSAID cream. It’s a chicken and egg story, but that either triggered a UC flare, or the flare happened because of all the autoimmune mess that was showing in the form of the joint inflammation.

    Once that got under control with Prednisone, then Purinethol (he’s still taking Purinethol and Lialda — plus Synthroid for his thyroid), he was good for summer and fall 2012. The thing is, again this winter he’s had bone issues. This is weirder, as there isn’t a lot of inflammation. Instead, he’s had two episodes of the most severe pain that he’s ever had — once wrist, once shoulder/arm. I’m trying to work this out (and avoid a UC flare which he can’t afford health-wise). But apart from anemia, there’s nothing else showing unusual.

    Thought I’d share this if people have experience with sudden, intense bone/joint pain — that then pretty much subsides…

    Thanks, and good health to everyone involved. I’m 42 and ok, but everyone related to my father has autoimmune issues, so I’m a big alternative med person. I take Zyflamend and have been working toward a gluten-free/dairy-free diet. Unfortunately my father isn’t able to go in that direction, which would help him I’m sure. Because of me he does take a probiotic (Florastor), digestive enzymes (Similase) and L-Glutamine for his UC, and curcumin which helped a lot in the past year for his arthritis pain (even if it might contribute to the anemia a bit — just FYI for users of curcuminoids/turmeric.

  33. DebApril 14, 2013 at 6:37 pm #

    I had severe joint pain for a year before being diagnosed…it was a red meat allergy! They thought I had lupus & told me to eat red meat at most once a week. When I would, I wouldn’t be able to walk the next day! They told me its the acid found in red meat that causes inflammation. No red meat = joint pain free unless I’m on 60 mg of pred, but that’s the only time it has come back in 2 years.

  34. helenApril 23, 2013 at 9:03 am #

    Hi, thanks for all the valuable insight. My daughter was diagnosed with UC about 4 years ago and was on all the traditional medicine. Anyway they made her sick, the doctors seem not to care, and so we went natural. She takes quite a few natural products, but a great one is made by metagenics called inflame x 360. Also use curamed and a really good probiotic. The swelling of the ankles and joint pain seems to rear its ugly head about every 6 months. Doc is confused, they don’t seem to be able to see that patients with UC have can have this issue. Wee seem to get the most relief from the swelling by using “Terry Naturally” brand curamed. unfortunately its about $85 per bottle. Protandim helps too.

  35. Don
    DonMay 21, 2013 at 7:58 am #

    Hey. My name is Don and I was diagnosed with UC in 2007 right after I released my CD. Needless to say I couldn’t tour to support the disc and actually ended up in the hospital for 5 days. I was on the SCD diet for 2 years and thought I was healed so I went off the diet and got really sick again. That was about a year and a half ago and I am still suffering even though I went right back on the diet. I found this site when I searched joint pain and UC. I have had a lot of achiness in my knees, hips, & elbows. It makes me feel like an old man (I’m 56). I have always been active and exercise daily, walk and ride my bike but the joint pain seems to be getting worse. I recently started taking some supplements, Freeda SCD vitamins, calcium, B vitamin but it’s not helping. I also take fish oil daily. I really need to find an answer to this joint pain problem. I am starting to moan every time I move. Ay Yi Yi!

  36. ItchJuly 8, 2013 at 7:24 am #

    Hello Adam,

    I am also exp. Ridiculous joint pains in both ankles and both knees. Dr prescribed me with the Sulfasalazine, that seemed to take some of the edge off and help. Somas ? Muscle relaxers seem to work better then any pain relievers so far. Something also strange along with the pains have also been happening. I’ve been drinking plenty of water, but it appears that i’m getting a lot of muscle twitches. Lil pops or mis fires in the muscles around my knees and in the bottom of my foot as well. Sometimes both knee muscles will twitch in the same place at the same time. I find this odd but strangely entertaining since for that split second it takes my mind off the pain. Im 29 years old yet i can hardly walk, let alone stand and hold my own weight, until my muscles become excessively fatigued. I have to say to be in my prime age i’m a pretty pathetic sight to see. No job no money yada yada. I hate to think that i may need to be on disability for something like that, but i cant make a living on hopes of good intentions. You hear of any extreme cases where this may be a loosing battle? I use to be really athletic, martial arts, high strung and always on the move. Now it seems the best way to entertain myself and keep my mind off the pain is to beat my head agents the wall. Is there any good news? Or should i start to think about early retirement ? :(

    • AdamJuly 9, 2013 at 2:47 am #

      Hey Itch,

      I’m super sorry times are so tuff for you right now with the pain. I’d suggest you give a read to the “Joint Pains” survey where you’ll get a really idea as to how this has affected a ton of others (not just me for example) and how people are coping with it.

      Here’s the link to that:

      http://www.ihaveuc.com/99-person-colitis-joint-pains-survey/

      As for me, I’ve 99% recovered from the joint pain issues. For example, I’m currently working on an organic farm, lifting 50 pound sacks of feed all day, and wrestling 300 pound hogs and 800 pound cows(well not completely wrestling them), but my point is that things went from really ugly where I couldn’t operate at all in terms of mobility to being able to do what I want again.

      I wish you the best,
      -Adam

  37. jessicaJuly 15, 2013 at 1:30 am #

    Hey Paul, I plan on purchasing your book this next week. I can’t wait to read it. I was told at 23 i have u.c. now I’m 29
    Just the past year I’ve had to deal with joint pain. Today would be my second horrible episode
    W/joint pain. I couldnt move, not my thumbs, elbows my legs wouldn’t bend w/out me screaming. I had no choice but to dial 911 there was
    Other option I’ve never felt this kind of pain. So my gi & pcp doctor says I can’t have pain med because it will cause a flareup w/u.c.
    So I am hoping and praying what is in this book helps me bec so far remicade, humira and other meds have failed and I just lost my job for the second time in seven years because I’m always sick.

    • KristinaJuly 16, 2013 at 7:03 pm #

      Hi Jessica,
      Have they ruled out opiods for pain management? Normal meds for arthritis are usually NSAIDs, but we can’t take them. Opiods shouldn’t cause a flareup unless you have had problems in the past.

      • jessicaAugust 2, 2013 at 11:30 pm #

        Thank you for responding. They gave me med for arthritis but nothing for pain. I’m on steriods now too but not sure what’s going to happen in a few weeks when I’m off the steriods. I’m honestly afraid the med they gave me for the arthritis will hurt my tummy just because most meds do. Its called sulfasalazine

        • SharonAugust 3, 2013 at 7:30 pm #

          Unless you are allergic to sulfur you should not have problems with sulfasalizine. This is actually one of the first drugs used to treat UC. I was on it for years as needed and through 2 pregnancies(I used asacol for the other 2).

    • lizMarch 14, 2014 at 8:08 am #

      please make sure you try the sulfasalzine that was already recommended. Methotrexate also may help and its risks are not so terrible actually. if you have disabling pains in the joints, you should try it out.

  38. KristinaJuly 16, 2013 at 7:00 pm #

    I posted here a while back, as I have been having severe joint pain as well. One thing that seems to be helping is the anti-inflammatory diet. The diet they have me on is kind of complex, but I am doing it because the only other option at this point is Remicade or Humira.

    They are giving me 3 months, then I get my blood drawn and my CRP measured. I will let you all know what happens!

  39. DeniseAugust 20, 2013 at 8:06 pm #

    Hi,
    My name is Denise, I was diagnosed with UC March 2006. Since then I am usually hospitalized with a flare at least twice a year, and the flares can last up to 6 months. I started getting the joint pain, in my hands, wrists and knees. I have had xrays and bloodwork done but they came back ok. I was told maybe tendinitis, carpal tunnel syndrome, sports injury on knees (I dont play sports). Last year around this time and again in December I have had this extreme painful and burning feelings in my fingers, hands, wrists. Then about a few weeks of that pain I had the flares which I get hospitalized for.My GI Dr. And my pain management mentioned the link. This is the first time I am seeing so many responses like my own. Right now I can barely move my fingers. Both thumbs are completely numb. The pain started 2 days ago. This morning I woke up crying because my right hand felt like it was burning. I could not shake the feeling. It took about 3 hours to be able to move my fingers. They were swollen and yet the tips cold. I have a pain management appt, on Friday. I don’t know what to ask for. I just got off of oxycodone and oxycontin for the UC flare. Now this pain. It has spread to the other hand and my knees. I have that sense of dread another flare is coming on. I just cant believe the sudden and extreme onset of burning, numbness/tingling in my hands, I feel useless since they are used for everything. I have splint/braces I have been wearing that alleviate some pressure. I t has become more frequent and staying much longer this past year. I take Pentasa to keep me in remission. I took some advil and prednisone today. I hoping for some relief on friday.

    • lizMarch 14, 2014 at 8:06 am #

      you need to try Tramadol and especially consider Gabapentin or Lyrica for the burning type pain you are having… sounds a bit like nerve entrapment, which can happen near the spine but can also happen around the elbows! My mom who had UC since she was a teen, had bilateral nerve entrapment – which I think is not in any way related to UC, but maybe we just know how it is connected — causing numbness and burning pain at the hands/fingers, then actual weakness and clumsiness. A surgeon fixed the problems for her and with rehab, she got he use of her hands and fingers back.

  40. Adam McSeptember 26, 2013 at 8:02 am #

    Just stumbled on your website, glad I’m not the only one with joint pains! I count myself extremely lucky that my UC is usually easy to control, but with each flare-up comes aching knees. It’s not the worst pain in the world, but it’s certainly annoying!

    I’ve never taken time to find out whether it’s a common symptom, or just me. Now I know, it’s one more thing for me to look for if I think I’m in the early stages of a flare up. Thanks!

  41. Tricia sandersOctober 9, 2013 at 4:55 pm #

    Hi, my name is Tricia and I had my colon removed 15 yrs ago when I was 27, and it was the best thing I’ve ever decided to do. I’m not sure why dr’ s would rather give medicine for years and years instead of just fixing the problem. I’m not going to lie, it was the worst thing I’ve ever gone through afterwards, but that part only lasted a short time. My dr said why keep masking the symptoms when you can fix it once and for all. Since the surgery I haven’t taken one single pill or had a single problem. Nothing to do with uc anyway. I have a friend who had the same surgery and he’s had the same results as me. Why not just end all the ups and downs and be done with it all?

  42. Alan R
    Alan RossiterMarch 7, 2014 at 4:51 am #

    Hi Folks,
    I’ve only recently been diagnosed with UC – hindsight tells me I’ve had it for a few years but in a mild form. But the elbow pain is the funniest symptom to explain to people. “Yeah, I poop a lot and it hurts my elbows”.
    As Adam said the best fix is diet. My irregularity is now down to 2-3 times a day – still bloody but less traumatic, still unpredictable but I’m accepting it. If I eat potatoes it hits quite hard the following day. Personally I like the look of the SCD diet but I’ve modified it to suit what I now know hits me. No wheat or gluten at all! No fresh dairy (cheese & yogurt is OK), no sugar, no potatoes, no fibrous foods, max 1 egg/day, max 1 banana over 2 days. But I find rice and rice cakes are a great nibble food and I more than nibble.
    OK – my elbows still ache and try putting a bottle of water to your mouth can be difficult on occasions. But it’s mild by looking at others symptoms.
    As I saw on another support site – stay on the diet – if you have a bad day don’t analyse why, don’t wonder was it the red apple that you ate that you normally eat green. You’re going to have a bad day over and over…because of no reason more than the direction of the wind.

  43. helen stirlingMarch 7, 2014 at 6:19 am #

    Alan, glad to hear that the diet is working. stay away from all gluten. We have had great relief using a number of anti inflammatory products. Look into the ORAC value of foods and try to have a least 25,000 per day (sounds like a lot but its very doable). Also we have used two products and i dont sell them so while i mention them i do not profit from them. Terry Naturally curamed 750mg take 3 per day then when go go to 1, and also from them Bos- cur, Using those two products alone, has diminished the need for prescription drugs. That will also help with the elbow pain. Good health to you

  44. TriciaMarch 8, 2014 at 3:37 pm #

    I honestly don’t understand why more people won’t even consider surgery as an option. You go through the surgery…and it sucks!…but after that it’s all over. No more medicine, no more pain, no more going to the dr all the time and you can eat whatever you want for the rest of your life. It doesn’t really seem like that hard of a decision to me. Jmo

  45. lizMarch 14, 2014 at 8:03 am #

    just be realistic about the surgery – it can solve many problems – especially the risk of colon cancer and the localized colitis. But it does not solve extra-intestinal manifestations of UC. And it does lead to other problems in the gut/abdomen – pouchitis is fairly common, and adhesions with obstruction are not uncommon. I have had all three of these issues since my colon was removed almost 25 years ago.
    and perhaps for women, the most important thing is to be aware that the surgery generally leads to infertility!!! My GI doc was shocked that I had not been told this before I had my surgery; if I had known these realities, I would have waited longer before having my surgery. Or I would have tried all these dietary things!!!!! They do work MUCH better than the surgery works in the long run. The first 10 years after the surgery felt great, but by year 15-18, there were LOTS of issues coming up. So please factor that in to your own decision. I was in my 20s when I had the surgery, and now am in my 50s; I hope to have another 30+ years… wish I had waited to have the surgery, because it DOES NOT SOLVE EVERYTHING — you just trade one set of problems for another set of problems… I think that’s just life…

  46. Veronica MartinApril 3, 2014 at 8:17 am #

    OMG Thank you. I have suffered from Colitis for 21 year and in Sept 2013 was diagnosed with Multiple Myeloma Cancer. Since mid-January I have been experienced horrific joint pain that would mysteriously come and go and move about my joints. Pain so intense (and I can take pain!) that I could not use my hands, or arms or ankles. Wherever the pain struck, that joint was useless. Doctors put me on steroids and caused Glaucoma!!! So I just had that surgery. Nothing has helped the pain and I have seen the Rheumatologist, Neurologist and my Family Practicioner. I see my Oncologist in a couple weeks and I was afraid she would say my cancer was progressing but now I have hope. OMG I’m not alone!!! I am changing my diet completely and pray it helps. Thank you!!!!!!

  47. RickAugust 1, 2014 at 4:57 am #

    Here’s the irony – my gut problems have all but gone away but my fingers have swollen up like sausages. I also have arthritis in my neck (out of the blue) which is like having a headache 24/7.

    UC is a nasty disease, that’s for sure.

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