I have had a left shoulder injury that just progressed after a tough upper body workout. As time has gone on a joint in my right shoulder has a similar pain. I have read about people with j pouches later on getting arthritis. Do any of you have arthritis ? 

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Lots of us have arthritis, because osteoarthritis is incredibly common. Fewer of us have enteropathic arthritis, which is the kind of arthritis that is specific to folks with inflammatory bowel disease. Your shoulder pain could easily be neither kind of arthritis, though. Maybe you just aggravated the old injury?

Taylor, I had my take down almost 2 years ago. Last spring, my joint pains started in my right knee and right shoulder and spread to both wrists. Over the next four months an orthopedic surgeon did x-rays of my knee, an MRI of my shoulder and said I had some osteoarthritis, but was more likely related to UC. Over the summer, I had cortisone shots in my knee and eventually arthroscopic acromioplasty on my shoulder that also revealed inflammation. I was referred to a Rheumatologist who ran blood labs and more x-rays, and confirmed enteropathic arthritis resulting from UC. I have been on sulfasalazine for more than a month and there is finally improvement, including current PT for my shoulder. I feel like I’m falling apart but I’ve got good docs and optimism. 

Taylor, now that you’ve revealed your age I’d be less inclined to consider osteoarthritis very strongly. It’s still more likely to be an injury than enteropathic arthritis, but I wouldn’t count on a physical therapist to make the diagnosis.

I have 'creaky old lady arthritis'...meaning every single spot that I have hurt or injured aches and creaks and cracks and pops with every movement...I am a walking weather vein...which arthritis is it? Do not think that it matters...it hurts...I take what I can and do what I can to keep the joints active and things moving...it is worse in the winter or when it rains...

Advice? Whenever you have an injury, treat it kindly, get physio and stop hurting yourself!

Sharon

I have psoriatic arthritis, even tho there is no skin condition that’s showed itself associated with the arthritis yet. It mainly showed itself after my takedown - within a month or two. My knees and joints were so inflamed and it hurt to just walk, go up and down the stairs and sit for long periods of time. It just felt like joints were big inflamed balls of Fire. 

I tried sulfazalazine but that didn’t work. I have a feeling I might have had this longer but having been on Entyvio, prednisone, remicade, etc, I think it might have masked my symptoms and now that I was off of everything, it was reading it’s ugly head.

Anyhow, I went on Cimzia and that worked really well, and it was safe when I was pregnant. It stopped working that well a year later (now) and I’m just in the process of switching to Humeria. I start that this week. 

it’s no fun, especially since I’m only 39. I have osteopenia and I feel like the body of a 50 year old. It is what it is though. I guess I’m just glad that medication helps. I have an 8 month old so I don’t have as much time as I’d like to be able to work out or be active. But do I think it is related to my ulcerative colitis? Yep. 

I am 61 and started having a lot of joint pain recently.. mostly in my hands. My doctor tested me for Lyme and a few other things.. all negative so he sent me to a rheumatoid arthritis specialist. LUCKILY I do not have rheumatoid arthritis. I was so worried about that being that I was diagnosed with Ulcerative Colitis and then Chrohns over the years (Have had a j pouch for about 14 years.)

 

 She put me on a prescription medicine with helped the aches and pains but for almost two months I felt sick to my stomach, went to the bathroom EVEN MORE than my "normal with the j-pouch" and skipped many fun activities due to feeling horrible. So I stopped the medicine!!! She then suggested other medicine but they also have side effects so I said no thanks.

 

I found out that my insurance covers me 100% for unlimited acupuncture treatments.. with a $30 co-payment and I am going to start with that right after the new year.

 

My knees don't bother me as much as she thought they should, based on swelling because I dance all the time. One would think my hands would be getting excercise from typing but I don't think so.

 

I am going to get an hour and a half massage next Thursday.  I have my medical marajuana liscense and am putting CDB/THC cream on my hands and elsewhere.. that seems to help. So does hot showers. So does getting more sleep and just feeling generally more well rested. I think taking the time to stretch every day would help me too... and doing gentle stretches in bed... I used to do this all time when I was younger.

 

Good luck. Maybe some of these suggestions will help you!!!

 

I am also having arthritis in my hands after 17 years with a pouch. I am taking 4 Tylenol when I wake up and I use Voltaren cream. I have my medical marijuana card also—does your cbd cream have thC? I was told it takes a month for the cream to work. Do you know how many mg of cbd is in your cream. I have seen anywhere from 500-1000 mg in the cream. I tried a small sample of cbd cream, but it was only for 3 days. I didn’t notice any difference.

i am unable to get to see a rheumatologist for 9 months!! But the GI doc said the treatment is basically the same for rheumatoid arthritis and other kinds.

i think I will try the cbd cream again.

Yes, my cremes contain an even mix of CBD/THC. One has 100mg THC and 100MG CBD. It's made by Verano and called Avexia. There's also another made by Curio Wellness... /DIXIE Synergy. I originally bought their Synergy Relief... it has 50 MG of CBD and 50 MG of THC and liked it fine.. but then tried Synergy Cool and it has the same amount of CBD and THC and I liked that better. They also have a HEAT warming balm (same amount of of stuff) that I want to try. I buy things based on what is on sale, stores I can get to etc. etc. I really do think it helps... I don't know what Voltaren cream is. WOW. 4 tylenol??? that would eat up my stomach and give me nausea. Also, taking tylenol every day is NOT good for a person. I went to an apothecary where the do compounding and make up a BUTT CREAM that is prescribed by my COLO RECTAL surgeon that is a miracle cream for my anal area and I picked up a rather expensive supplement that is supposed to help with arthritis. Right now I am taking one a day plus two Glucosamine tablets.. I just started the supplement and am interested to see if that help.  I don't think that is AT ALL CORRECT that Rheumatoid arthrits and other kinds of arthritis is treated the same.. I mean, it's not at all the same disease.  I am going to start acupuncture after the new year and next week I am going for a 90 minute massage which is always helpful. I want to try and go swimming once a week too...   BUT YES< get the CBD/THC cream. And on the subject of CBD.. I am not convinced it's the be all end all that most people say but you never know...

Marz, I strongly caution you against Tylenol overdosing. It’s an incredibly safe drug when used according to the directions (unless combined with alcohol or liver disease), but it’s an incredibly dangerous drug in overdose. You can safely combine it with Aspirin or NSAIDs, but please don’t take four at a time.

I had j pouch surgery as a teen and now in my early 30s I am already developing arthritis nodules on my fingers. They are becoming noticeably more crooked every month. I know we have all been through worse but it’s genuinely very upsetting.

If arthritis starts early in life I would assume it progresses faster & inevitably causes suffering for a significant portion of life. Nobody else in my family has this therefore I would suggest it is related to IBD/autoimmune disorder.

When a doctor says “arthritis” that usually just means “osteoarthritis.” If there’s a legitimate question of rheumatoid arthritis (not just because it has “arthritis” in the name) then a consultation with a rheumatologist is a very good idea. There are a variety of tests to help pin down the diagnosis, and they are trickier to interpret in someone who already has one autoimmune disease. 

I am on longterm maintenance doses of Robaxin for severe spinal/hip pain...it helps a lot. They had used tramadol on me but I hate the side effects and fear addiction (here they prefer to give you tramadol rather than NSAIDs).

I use a heating pad filled with cherry pits that I heat up in the mic for 2-3mins...it is about 2 feet x 6inches. I place it on my bed so as when I lay down my spine is aligned on it. It gives off a moist heat and does wonders. Depending on what hurts most that day I use it on my shoulder, hips, neck or back. Although it is not a cure, it does give me hours of relief and helps me to fall asleep almost pain-free. Intensive physiotherapy helps a lot too. 

As Scott says, certain forms of arthritis are linked to our diseases...autoimmune...and when we have one (even if they removed our offending colons) we often end up with the other.

Without biologics, we cannot slow or stop the progression (and biologics are not for everyone) but we can do our best to fight the pain anyway that we can.

I do hand exercises with a handball sized silicon ball (bought at Walmart or the dollar store)...it has bumps and prickles on it so when I squeeze it it stimulates the nerve endings too...it helps to keep the muscles in my hands strong although the joints are still swollen and red the movements are a bit more fluid and easier.

The rheumy said to keep them all moving so I do...there is an argument for using cold/heat alternately but I find that heat helps me the most.

Sharon

 

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