Muscle and joint pain years after colectomy due to UC

I'm having frequent painful muscle and joint inflammation these past couple years. I never had this before. I am wondering if it is part of the same autoimmune syndrome that caused my UC. The pain responds well to NSAIDS but I am not supposed to take them due to a history of kidney cancer.

Is anyone else having this issue? Any recommendations?

I had a total colectomy with J-pouch 10 years ago due to UC.

Original Post

I have them and they get worse over time...Especially since I had a slip and fall that I cannot seem to come back from.

I don't recover like other people...my rhumey says that it is my normal...probably the disease that does this...every little ache and pain is exaggerated and multiplied. 

I have been on NSAIDs on and off for years... The last run, since the end of August, has pushed me into gastritis, horrible abdominal pains that feel like my gut has been hit with a log...But nothing else seems to work as well. 

So, I take omopral to be able to handle the NSAIDs...

Sports helps a lot...Exercise of any kind but particularly swimming, long walks, climbing or anything that gets the joints moving...inflammation loves exercise.

No, suggestions...just consult a rheumy for advice, meds and bloodwork.

Sharon

 

Thanks, Sharon. My rheumatologist also recommended NSAIDS but I refuse to use them due to my history of kidney cancer and the risks of gastritis/pouchitis associated with them. I use Tramadol (a mild, synthetic opiate) and acetaminophen (Tylenol) instead. They don't reduce the inflammation but they take the edge off the pain. I've also been using an ointment with Arnica in it (Topracin) with some relief.  I was just wondering if this kind of muscle and joint pain was common for people with a history of UC.

I refuse to stop exercising, even though it can impact my energy for the rest of the day. But I agree about activity - I feel much worse when I don't move around.

I am rather obsessive when it comes to exercise and usually go overboard on my days off...I need the intense movement to reduce (?) the inflammation and get my body to function without pain for a few hours...

I find that using the Pilates balls helps immensely...I roll around, stretch out the lower back, work my abs to help support my back and hips and crack back in whatever seems to have popped out over the previous days...it can give me up to 2-3 days of relief....worth the pain while I am doing it.

Hot water helps a lot too, on really bad days, I use both a very hot bath (no jacuzzi in my house) and the cherry-pit filled heating pad under my spine to get some relief...you find whatever works for you and go with it.

Yes, I think that a lot of us suffer from extreme inflammation...it seems to go hand in hand with whatever it is that we have got...in my case probably undiagnosed UC but in those days they called it a spastic colon, IBD, IBS or chronic, bleeding gastroenteritis (at least that was what they told me).

I am grateful to no longer have my colon but I wonder if removing it just displaced the inflammation to other places.

Sharon

If you were on prednisone I would suggest checking in with an orthopedist to see if you have osteonecrosis.  I was on prednisone for six months in 1988 for UC .  I started to have severe pain  in 2010 in my hips and shoulders.  My colon and rectal surgeon made the diagnosis of ON. 

Theresa

I had a lot of joint/muscle pain with my UC. My colectomy was 6 years ago and I still have bad joint pain. With my ostomy, it may be partly due to dehydration. I was recently tested for Lupus and Rheumatoid Arthritis and those were negative. Just because we are "cured" of the UC doesn't mean our body isn't still affected from my understanding.  I take tylenol or my MD gave me Celebrex and a muscle relaxer which also helps.  Don't take Advil!

Thanks to everyone who responded. I'm sticking with the Tramadol/Tylenol/Arnica ointment therapy for now.  I do some yoga and am thinking of looking into that furter. I also take a very occasional 1/2 of an Advil now and then when the pain is bad.  I'm really afraid of the NSAIDs (Advil, Celebrex, Mobic) because I'm pretty sure that the years and years of taking high-doses of sulfasalazine, which is an NSAID-like drug, contributed to my eventually developing kidney cancer. With only one kidney left, which was also deluged with nephro-toxic sulfasalazine for years, I'm really wary of blasting it with more NSAIDS at this point. Kidney failure would really put me over the edge.

Not to mention the risks that NSAIDS pose for what little is left of our guts.

I've been experimenting with high-CBD marijuana, which is legal here in Washington. Unfortunately, it hasn't been helpful so far. In fact, I feel substantially more painful after a toke or two. Why would that be, when it helps so many people with pain? My theory is that, like other psychoactive drugs, marijuana removes some of the mental inhibitions/repression we all use to cope. Perhaps I mentally deal with at least some of my pain by just not consciously recognizing it. That would be a good sort of repression for getting on with life.

Still, I'm considering seeing a naturopathic provider to discuss other forms of marijuana for pain - there are so many strains out there.

Has anyone had any success with marijuana for muscle and joint pain?

--Cate

Hi Cate,

I developed arthritis 20 years after i got my pouch. It started with sacroilitis and is now dx as Ankyolsing Spondilitis. This can effect all my joints,muscles,tendons, but there are specific joints such as right SI joint, right hip, third top right rib and stiff neck that stand out.

I have tried so many things to try and manage my joint pain. From my few years of research i'm absolutely convinced that the majority of arthritis develops from leaky gut and SIBO. Healing the gut, fixing the bacterial balance are the key objectives that will help you to manage your inflamed joints. There are also additional supplements and stretching exercises that are essential. 

I just want to state this as clearly as possible - do not take NSAID's, unless absolutely necessary. NSAIDs break down the gut lining and will make your joint pain impossible to manage. 

Avoid antibiotics unless absolutely necessary. They kill both good and bad bacteria and when you finally stop taking them the bad bacteria will almost always win the race to gain territory. If you have to take them you need heaps of good bacteria and probiotics otherwise you will just become dependant on anti-biotics and certain ones like (ie quinolines like cipro) breakdown your tendons and cartilage double attacking your joints.

I could literally talk about this subject forever, but here are the main things that i do, that really help.

1. Water - drink reverse osmosis purified water. This removes the chlorine which kills good bacteria and removes other harmful substances. It does remove some good trace minerals so you can either get a re-mineraliser or just drop a few crystals of celtic sea salt in a your glass.

2. Salt - dont eat white table salt. Get Celtic sea salt, himalyan pink salt or natural sea salt.

3. Paleo Diet - this is the hardest area to conquer but if you do make it up the mountain it is so rewarding you wont want to go back down. Basically you need to eat a modified Paleo diet. Eliminating starches is essential as the bad bacteria bloom through starch. The bad bacteria can survive off fat but they wont bloom and will be much better under control. Eliminating sugar is also essential and i personally include fruit in this category as the fructose kills me. Eliminating Dairy is another essential step, between lactose and casein intolerance its best to avoid. So eliminating Starch,Sugar,Dairy and going Paleo will put you in a much better position to have a healthier gut which will help your joints.

4. Oxygen - I'm going into a controversial area now, but this has helped me so much i just have to share it. Food grade hydrogen peroxide at 35% can be diluted down to 3% in distilled water. H2O2 will kill the bad bacteria but not the good bacteria. It tastes disgusting but it has amazing benefits and is also a great way to beat fatigue. Its hard to actually buy this, you have to search online for Food grade hydrogen peroxide at 35% (keep it in the freezer). Start really slowly like 1 drop 3x a day and slowly increase over weeks. 

5. Exercise - personally i only do stretching and light walking. I have a set of feldenkrais and yoga stretches that i do daily.

The steps above are a great way to get started, those same steps got me out of tremendous arthritic pain and exhausting fatigue. I'm still on this crazy journey and my next steps are trying to kill candida and then repair the gut lining. 

Good luck Cate!

-d

 

 

 

 

I have been going through this the past few years too--very frustrating too as my rheumatologist doesn't seem to think there is any connection to autoimmune issues and says she "guesses" i have regular arthritis , (right, every joint in my body  flares simultaneously with every muscle at the same time, with a fever and malaise! but it's not autoimmune....) I developed skin hives and psoriasis at the same time. Long story short, my dermatologist put me on Plaquenil for the skin stuff and indirectly this has completely fixed my joint/muscle pain. They usually give it to rheumatoid and lupus patients. I actually feel better than I have in years and didn't realize hw run down I was from my joints/muscles as it was my ""normal". I would rather take this DMARD then reg.ibuprofen or narcotics--it's relatively safe and treats the underlying immune problem-even if no one can say exactly what that is.........good luck--I think it's pretty common for us all to struggle with our joints whether there is physician consensus or not. 

Hello Cate,

I am not on the site very often since my coloectomy 8 years ago. I got on tonight looking for others suffering with joint pain due to UC. You had asked if any one was ever told of  connection between UC and arthritis, my gastro told me that there is. He said that although I tested off the charts for RA, it is the UC attacking my joints causing the problem. I was given Mobic, Sulfasulzide and another med that I quit taking and do not remember the name. I only take the other two when I am struggling to manage the pain in other ways. I think that exercise and diet really manage the pain well, but it takes very strict self control (which is difficult)

 I guess it is one more stage of the disease. I was curious about what next? After the colon, rectum and joints, what happens next?

Wishing you the best,

Dona

I had my colon removed almost 20 years ago and in the last month I found myself in emerg with a very swollen knee that came on quickly.  ER dr said it was osteoarthritis but my family Dr doesn't think so and has referred me to a Rheumatologist whom I see April 11th. I have had great fatigue and low appetite too.  Starting to feel better with lower pain on the Anti-inflammatory diet. 

Thanks again for the responses. I was on Cipro for a few weeks 8 or 9 years ago, when they thought I might have pouchitis. It didn't help, so I stopped. I actually tried Plaquenil for a short time too, without any benefit.

It's frustrating not to be able to use anti-inflammatory drugs, which work so well for this kind of pain. And yes, I'm also sure it's another manifestation of the underlying autoimmune disorder that caused the UC.

I've reduced carbs and increased fats and protein over the years because it helps to slow down my gut. But there are so many wonderful foods I can't eat anymore (wheat, corn, hot spices, most dairy products, legumes, nightshades...) that I'm reluctant to give up the hard cheeses and gluten-free bread to go totally "paleo".  How much can you banish from your life before it just isn't worth it?

Thanks again to everyone for taking the time to write.

I to have been "cured" from my UC 10 years and counting after my colectomy and j-pouch creation.  I have always had some joint pain, but recently have had joint pain that is keeping me from normal functions.  My rheumy says I have osteo with incidence of autoimmune problems.  No kidding?? 22 years on prednisone with multi years on NSAIDS.  I walk daily, watch my diet, have moved to a warmer climate.  Any thoughts?

Hi cate,

 

YES! I been using cannabis to relieve muscle and joint pain. I prefer a plant with much higher THC than cannabichromene or cannabidiol compounds.  There are different chemotypes to stage different affects. But if you're saying is true when smoking a few hits wont or does no little affect on your pain management, and the CBC-CBD receptors that have powerful anti-inflammatory affects .... that's a mystery?   xx

I am a 60 year old male who has been dealing with Ulcerative Colitis since 1997. After running out of drugs that work, I decided to have a Jpouch in 2014. I’m so glad I did! But lately I have been experiencing muscle and joint aches/pains (including my back) for most of this year. I am looking for some relief!

Any suggestions??

Depends on what the muscle and joint pain are from...I have continual and constant pain in both muscles and joints (think 99yr old woman rising from a seated position!)...but it sort of goes away the more I move. If I walk a long time or intensely then it is almost gone...that generally means inflammation.

Inflammation likes activity. It likes movement (think greasing the wheels)...the more you walk the more blood flows through the joints and liberates them...when you stop for long periods of time and sit or lay down, they sort of stiffen up.

If it is something else...arthritis or something similar then it may be different.

I also use a chiropractor weekly, a PT 2xs/week (I have had 2 nasty falls in 2yrs) so that things are where they belong and move better.

I hate drugs with a passion (personal opinion and experience with loved ones) so I am prejudiced against taking most of them but I did take massive doses of NSAIDs for inflammation (I would have never been able to go to work or get out of bed otherwise) and certain prescription pain meds like Tramadol (which does almost nothing for me except disconnect me from the pain (doesn't stop it) and make me drowsy). 

You need to find out what the pain is (autoimmune or something else) and then treat it accordingly. 

Sharon

 

I have had arthritis since. I was a teen. I had 4 knee surgeries. 2 rotator cuffs surgeries. And my back goes out a few times a year.

i go to the BEST rheumatologist. He finally liked a product. I’m on this 2 months and I’m amazed. I can walk and so much less pain.

its from Wynn pharmacy online  

Invigoflex AMPM. Glucosamine sulfate and chondroitin. Life changing.

Hopefully it helps 

Just wanted to update that I'm now on MTX and Humira. I just couldn't control the arthritis naturally and it was just too painful. I'm still quiet limited in what I can do physically but it's much more predictable and under control.

Considering trying some CBD oil would love to hear more feedback. Also wondering if there's any contraindications with MTX or Humira?

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