Just wondering if any fellow j-pouchers are as sore as I am now. I was an avid sports player before surgeries this year, with a bit of a sore knee. Now 3 months since reversal and I have never been so sore and stiff in my life. I am only 27. My hands, knees, neck, stiff and sore every morning. I workout and hit the hot tub everyday just to get moving. Wondering if I have arthritis due to having a j-pouch or I am getting arthritis cause I used to have an autoimmune disease or what ?
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IBD and arthritis seem to go hand in hand with a lot of people. It's just one of the lovely things on the side associated with UC or CD. I remember reading once that 1 in 5 people with IBD will have arthritis symptoms. On a side note, just because your colon is gone doesn't mean you won't continue to have UC related issues going on with your body like the arthritis for example. We still technically have an autoimmune disease.
Yes, the autoimmune disease is part of your DNA, even if the target organ is gone. Many of the extraintestinal manifestations go away with the colon, but some persist as a separate entity. Some forms of IBD related arthritis may persist.
However, if you were on long term or high dose steroids before surgery, joint pains can be part of the steroid withdrawal syndrome, and it should improve with time, as your body adjusts and "learns" to make enou of its own cortisol. This happened to me and things improved in about six months. But, the bad news for me was that I did actually have inflammatory arthritis that returned years later. But, this varies from person to person.
If this is really bothering you, you should contact your surgeon, so treatable issues can be ruled out. My early recovery period was highlighted by shoulder and hip pain that was serious enough to make the docs suspect damage from prednisone (avascular necrosis), but that was ruled out.
Jan
However, if you were on long term or high dose steroids before surgery, joint pains can be part of the steroid withdrawal syndrome, and it should improve with time, as your body adjusts and "learns" to make enou of its own cortisol. This happened to me and things improved in about six months. But, the bad news for me was that I did actually have inflammatory arthritis that returned years later. But, this varies from person to person.
If this is really bothering you, you should contact your surgeon, so treatable issues can be ruled out. My early recovery period was highlighted by shoulder and hip pain that was serious enough to make the docs suspect damage from prednisone (avascular necrosis), but that was ruled out.
Jan
Could just be a bout of pouchitis. See your GI first If not pouchities, see a rheumatologist.
To be an optimist here, it could also be dehydration...your pouch is very young and freshly minted so it may well be running food through you quicker than optimal...and you could very well be dehydrated without realising it...usually dehydration can cause the very same symptoms...joint pain, headaches, a general feeling of body discomfort...Even nausea in some circumstances...try upping your fluid intake, sodium and trace minerals and get your bloodwork done; have yourself tested for B's, iron etc...you never know...you could be lucky and it is nothing serious.
Sharon
Sharon
I often complain about this issue to my GI as I never had muscle soreness or joint pains ore surgery and now they are very disabling. In my case, I am also on cipro which can cause muscle aches but I agree with both Jan and Sharon in this in that when I don't drink enough fluids the pains are worse and I do believe just because the colon is gone does not mean the auto immune aspect if the disease has been completely wiped out. My GI also has indicated many patients have similar muscle and joint pain issues. On a positive note, I do notice a big difference in my pain level when I try to push myself to exercise and do strength training so hopefully more time and your workout routine will help you as well.
Exercise is key for me too. As a matter of fact, it is one of the major treatments for inflammatory arthritis. This type of arthritis pain improves with activity and worsens with inactivity (and this is why the pain and stiffness is worst in the morning or during the night, and improves during the day). Osteoarthritis and injury type pain does not improve with activity, and may worsen.
I guess I must not get dehydrated often, because I don't notice a difference if I increase my fluid intake (but it has been a looooong time since my colectomy- 18 years).
Jan
I guess I must not get dehydrated often, because I don't notice a difference if I increase my fluid intake (but it has been a looooong time since my colectomy- 18 years).
Jan
Research Vitamin D deficiency. It causes severe muscle and joint pain. I cramp in every part of my body with rolling charlie horses. I can't even carry my groceries lately and get out of breath. Almost all people with out a colon will need to supplement Vit D for life.
I never had an idiot doctor test me until I went to Neurology at CC last week. I am also low in Copper and Zinc but Vit D is the biggie for pain. Have to ask to get tested, most doctors don't do it on their own I have found out. They just care about Iron and Vit B.
I never had an idiot doctor test me until I went to Neurology at CC last week. I am also low in Copper and Zinc but Vit D is the biggie for pain. Have to ask to get tested, most doctors don't do it on their own I have found out. They just care about Iron and Vit B.
I had high hopes that vitamin D supplementation would help my joint pain. My doc began monitoring it a couple of years ago, and taking 4000 IU/day has brought me into normal range. But, alas, my joint pain persists
My husband was also similarly deficient and still has his colon. He has UC though and deficiency is associated with UC. He didn't have the same joint pain.
Hope supplements work for you Vanessa!
Jan
My husband was also similarly deficient and still has his colon. He has UC though and deficiency is associated with UC. He didn't have the same joint pain.
Hope supplements work for you Vanessa!
Jan
Here they do the 1xs or 2xs/yr vit D doses...Hubby has to do his 4xs/yr since the heart attack but mine is an annual thing...do they do it that way over there? Same with some other suppliments incluiding calcium mix for osteoperosis...they find it easier on the patient and the wallet (very cheap and nothing to remember...just 1xs after the annual visit).
Took my 1st one in April...didn't notice any difference in my pain level...my only relief is exercise on a daily basis. Sitting while working kills me. I need to get up and walk around for at least 10mins/hr or I suffer with both hips now. I found that climbing up and down the stairs in the house 3-5xs is the best punctual break because it gets the blood flowing and warms up the joints faster.
Sharon
Took my 1st one in April...didn't notice any difference in my pain level...my only relief is exercise on a daily basis. Sitting while working kills me. I need to get up and walk around for at least 10mins/hr or I suffer with both hips now. I found that climbing up and down the stairs in the house 3-5xs is the best punctual break because it gets the blood flowing and warms up the joints faster.
Sharon
A few years before my surgeries, when my UC was flaring, I was very low on D and my Internist had me take some mega doses. Prescription strength like 100,000 or 150,000 units several times a week apart. Subsequently when I consulted a nutritionist she said that just getting into the "normal" range of 40 is not the optimal range. I alternate between taking 10,000 and 5,000 a day and am trying to get up to the 80 reading range. I'm in the mid 60 range now. I've also been tested for metals as well.
My doctor doesn't think I need to take such large doses but likes the test results, go figure.
I also take E and CoQ10 and higher doses of magnesium for my fibromyalgia pain, sublingual vitamin B, a heavy duty multi vitamin and a super Omega 3 with a few other supplements for other problems. I also drink a PlanFusion protein drink daily that is an amino acid infused protein blend. It's taken a while but my blood work test good now. I still feel like crap but have felt worse.
I hope you find some answers and relief soon Vanessavy.
My doctor doesn't think I need to take such large doses but likes the test results, go figure.
I also take E and CoQ10 and higher doses of magnesium for my fibromyalgia pain, sublingual vitamin B, a heavy duty multi vitamin and a super Omega 3 with a few other supplements for other problems. I also drink a PlanFusion protein drink daily that is an amino acid infused protein blend. It's taken a while but my blood work test good now. I still feel like crap but have felt worse.
I hope you find some answers and relief soon Vanessavy.
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