Hi All! I'm new to this site, so please forgive me for not yet figuring out all the in's and out's of the site.

I had my surgeries (total proctocolectomy (colon and rectum removed) and j-pouch construction) in 2007. I have been pretty asymptomatic except for the occasional flare up of pouchitis which was easily controlled with a Flagyl regimen. About a year and a half ago I began having extreme muscle and joint pain. It has been consistent and even gotten worse since then. It is so bad that I can barely move in the mornings. My husband sometimes has to help me up because of the pain and stiffness. I at times need help showering and getting dressed because it hurts so bad to lift my arms above my head or bend over. I have areas of my back and neck that literally feel like they are going to break in half when I move.

I have had a ton of bloodwork done and it keeps coming back as follows:

- Elevated SED rate
- Positive P-ANCA
- Negative ANA
- Elevated White Blood Count (WBC)
- Elevated Platelet Count
- Elevated C-Reactive Protein
- Low Vitamin D
- High Ionized Calcium

Doctors say that all of these are indicative of inflammation but none of them alone can allow them to determine a cause. And, even though some of these show the existence of an autoimmune disorder, they aren't sure of it's from the UC antibodies or if it's a new autoimmune disease completely.

Everytime I am put on prednisone all of my symptoms COMPLETELY DISAPPEAR!! But, the problem is that I can't be on it for long periods of time and since the doctors don't have a specific cause of my problems yet they will not concede to letting me stay on it, for obvious reasons, and I agree with them.

I have been on prescription anti-inflammatories but they do nothing at all for my pain. I have to take large doses of narcotic pain relievers to get any kind of relief! But, now my doctor wants to take me off of even the pain relievers because she doesnt want me to take them long term either.

My rheumatologist has thrown around the idea that even though I have had my colon out for 5 years now, I still have the autoimmune antibodies in my blood and instead of having a flare up of colitis the inflammation has moved into my muscles and joints. The only other possibility is another, completely separate and new autoimmune inflammatory disease, however, everything I have been tested for specifically (rheumatoid arthritis, lupus, lyme disease, etc.) has all come back negative.

I had active UC for 8 years before I had surgery and I never, ever had any arthritis symptoms that I know can be common in some people with IBD. And, I have never had any arthritic symptoms after my surgery until last year.

Im at my wits end and I am desperate to figure out what is wrong with me. I'm just wondering if anyone else has had these symptoms following a j-pouch surgery, or if anyone has any thoughts, suggestions, etc. ANYTHING would be greatly appreciated at this point!!!

Thanks everyone for your help!!

Have you had your magnesium levels checked? Maybe you are low on magnesium.

Since jpouchers typically have lots of watery stools, perhaps you are losing too many electrolytes.

Good luck!

Solomin

I had the same symptoms. Diagnosis: enteropathic arthritis. Azulfidine helped a little. Humira helped more. I'm on Simponi now.

Check out this link:
Spondylitis

Jan

Have they checked out fibromialgia?
Could have the same causes and symptoms.
Sharon

Funny you should mention that, Sharon. I remember telling my rheumy that I felt like I had fibromyalgia. She said there was a component of inflammatory arthritis that has overlapping symptoms with fibromyalgia.

When I am in a flare I feel like I am walking through molasses. Morning pain and stiffness lasted an hour or more before I was diagnosed. With my anti-TNF injection treatment, the morning stiffness is more like 30 minutes or less, and my flares are a few times a year, instead of constant.

A hallmark of enteropathic arthritis related spondyloarthropathy is sacroiliitis. The primary symptom of that is upper buttock pain and low back stiffness lasting over 3 months. The axial (spine) related enteropathic arthritis does not follow the course of the IBD like the more common peripheral arthritis form. It can preceed onset of IBD or occur years after colectomy. For me, it was more than a decade post colectomy. However, in retrospect, I recall numerous occasions of tendinopathies that now appear to have been early indicators. The first line of treatment is NSAIDs, which I can tolerate for shrt term use, but chronic use led to pouchitis.

For me, proper diagnosis and treatment meant the difference between constant pain and being functional.

Good luck,

Jan

Have they tested you to see if you are HLA-B27 positive (blood test)? It may help steer the diagnosis. Jan is right about the radiographic (xray) evidence in enteropathic arthritis, serronegative spondylarthropathy, ankylosing spondylitis and the like. Simple, inexpensive test yet oft overlooked. However, you do need a knowledgeable eye to interpret films.

Also, if you are to undergo proper testing for lyme it should be done through a lab like IGeneX. One of the large national testing laboratories, for example, removed some of the protein bands on their Western Blot test and may miss cases. Additionally, lyme is much more a clinical diagnosis. The test is there to guide the doctor. You also don't need to be CDC positive to be positive for lyme. Testing CDC positive is just that. It is useless to you as a patient in my opinion. Unfortunately lyme is a highly political disease. Should you have any overwhelming evidence, it is time to find a lyme literate medical doctor.

I am obviously not a doctor but I thought elevated white blood cell counts signified an infection of some sort.

Magnesium may help with muscle pain. Be choosy about the form of magnesium you use. Should it run to quickly through you, you are not absorbing it and need to find another form. Personally, I like Mag-Tab SR. It is slow release. It works for me as I have slowed my bowels down mainly through incremental dietary changes. It, however, may not work for you if things pass too rapidly. You will have to experiment.

Lastly, a diagnosis of fibromyalgia, in my opinion, means it is time to find a new doctor.

Thank you all soooo much for the replies!!

Solomin - I have not had my Magnesium checked. I know I have low Vit D and high Calcium as previously stated. My calcium was previously low and my parathyroid hormone (which regulates Vit D absorption and subsequently Calcium which is dependent upon Vit D levels) is one point into the normal range. Low calcium and vit D have many of the symptoms im experiencing but ive been on supplements for both for the last 2 months with no improvement. I have an endocrinology appt this Friday to find out if its a parathyroid issue.

Jan - I've taken Azulfidine and Celebrex both with little to no improvement....at the very least it was short lived. Only lasted about 2 weeks and then all symptoms came back full force! I have an appt with my rheumatologist at the end of Feb and I can mention enteropathic arthritis to her and see what she thinks. I have not tried Humira or Symponi at all. In fact, the only anti-inflammatory i've been given that has had any effect is 800 mg ibuprofen. But even that I have to take 4-6 per day (much more than the recommended dose) to get relief!

My thought is this: if this is in fact a flare up of colitis in my muscles and joints, would the typical prednisone, imuran, and asacol work to treat it maybe? And also, I will definitely look into the enteropathic arthritis however, 90% of my pain is in my muscles and tendons and only a very small small amount in my joints. So, could that still be considered arthritis? Maybe these are questions I need to ask my rheumatologist but at the very least I need to vent my frustrations! LOL.

Thanks again for all the wonderful responses

Fibromyalgia has been thrown around a few times. But that is not a diagnosis that I am willing to accept either. To me it means essentially that I have pain and other symptoms but they just dont know why, and while that is at this moment the exact outlook of my situation, I feel strongly that there is a specific reason for this and there has to be someone out there somewhere that can find it!

And, with a diagnosis of fibromyalgia, the only pain management facility within 2 hours of where I live will not see me

Navy wife, Jan,
I have had chronic lower back pain, sacroillitis, sciatica, joint pain (knee, hip, shoulder, ankle) and tendonitis for the last decade.
They have been treating me with occasional physio therapy, anti-inflamatory gel for massages and NSAIDs. I take 2 Advil 400mg a day or I cannot move. I am reluctant to take anything stornger if I am not in a flare. When I flare they put me on prescription anti-inflamatories for 2-12 weeks until the worst is over and then I am back to NSAIDs.
No one wants to diagonsis anything here. They just say that is what happens to people who have lost their colons. My rhumy said that it was probably related to why I lost my colon in the first palce but other than an occasional x ray he won't go any further with it.
Exercise helps a lot, so does chiropractic when done right and swimming.
I use heat when it gets really bad. I am not so sure that they even recognise Fibromialgia as a real disease here (my mother has it) so there is no way to get a real diagnosis.
I figure that as long as it doesn't get much worse for now and I can control it reasonably well, then I should be ok for now.
Sharon

quote:

90% of my pain is in my muscles and tendons and only a very small small amount in my joints

One of the most interesting things I've learned about enteropathic arthritis associated spondylitis is the fact that tendinitis is very common, and one of the more hallmark type symptoms. In my youth, I had bouts of tennis/golf elbow, inflamed knees, etc. Then came Achilles tendinitis that sent me to the podiatrist and months in a CAM walker. My rheumy took all of this and simply "connected the dots" to my current diagnosis. These symptoms are known is enthesitis, where there is inflammation of the tendon or ligament insertion into the bone. It is quite painful, but not much to see on x-rays, except for some spurring, and maybe calcification of the tendons after long term disease. My sacroiliac joint x-rays were pretty good looking, but the pain and stiffness in my low back/upper buttocks was killer, particularly in the morning or after sitting an hour or more. The thing is, radiographic evidence is little to none early in the disease. My rheumy is proactive and feels that treating it before there is irreversible damage is the way to go, and I am with her on that. The most recent data indicates that drugs like Remicade, Humira, and Simponi can delay or arrest development of the disease. Sure, there are risks, but there are risks of not treating too.

With NSAIDs, you need high doses to achieve an anti-inflammatory effect- that would be a minimum of 1800mg of ibuprofen per day. That is why there is a high risk of GI effects, especially if you have IBD. It worked great for me, until I couldn't take them anymore due to pouchitis and liver inflammation. After NSAIDs, there really isn't much else than the biologics. Plus, biologics don't work for everyone, and they can take 3 months to see the full effect. My doc went straight for the injectables (that way I didn't have to come in for Remicade IV infusions). Enbrel only worked minimally. Humira was pretty good, but I needed it every week. Simponi is only once a month. I like that about it. On top of that, my pouch has not looked better, according to my GI!

Another hallmark of inflammatory arthritis as compared to osteo is the fact that exercise improves symptoms, while rest improves osteo (to a point). For those of us with inflammatory arthritis, it is tough to get that balance of movement and rest. One of my biggest challenges is getting a full night's sleep, since pain awakens me when I have been in one position too long.

I also have vitamin D deficiency. But, so does my husband. Vitamin D deficiency is common in IBD and apparently in the general population too. I now take 2000IU of D3 twice a day (for about a year now) and my level is within the normal level (low normal), but it did not affect my pain in any significant way.

Jan

I have fibromyalgia and nothing helps it but plenty of rest, exercise, massage and accupuncture. I also go to the chiropractor for another problem and think it helps the fibro too. I have been taking anti-depressants every since I was diagnosed for it.

My Vit D was low and now is in the normal. I take my D with with magnesium and calcium supplements. I also take it at a different time of day than my other vitamins.

Do you feel chronically fatiqued as that's a fibro symptom? Fibromyalgia is pretty easy to diagnose by the pressure points. You can look them up. The best description I've ever heard is it's like when you are taking the skin off of a chicken there's the clear stuff that holds the skin and muscle together. Fibro is like the inflamation of that clear stuff. I forget the proper medical term. Therefore it's felt in the muscles.

It sounds like you've been to a rheumy so I'm guessing they ruled it out. The reason why I went into so much detail is you can have polymyalgia (not exactly sure of the name) or others with that ending. I know a lady that has this and is treated for it with prednisone when she has flares. She gets to where she can not lift her arms very far. She is treated by an Orthopedist. I'd suggest you try seeing an Orthopedist and a good Chiropractor.

My pain medication (hydrocodone/tylenol) for pouch pain does nothing for my fibro pain. So if your pain medicine helps I'd say that would help rule out fibro too.

Unfortunately, chronic fatigue is a component of many diseases, so does not help narrow diagnosis. Fatigue is a common symptom of inflammatory arthritis too (the chemicals secreted from inflammation cause fatigue). I guess that is a big part of the problem with these syndromes- lots of overlapping symptoms and no definitive tests. Plus, I suppose you can have both arthritis AND fibromyalgia, just like you can have both IBD and IBS.

For example, while most patients with ankylosing spondylitis and related diseases are positive for HLA-B27 antigen, being negative does not rule it out, particularly with enteropathic arthritis, where 30% or more are negative. Plus, not all rheumatologists are that great in diagnosing these things. That's why some patients go decades before being diagnosed.

Jan

I'll just add that testing for Lyme disease is both notoriously unreliable at the technical level and often incorrectly interpreted. Many physicians incorrectly use the CDC reporting criteria of six positive bands as the measure of a positive test. If you had a western blot, you might try to get the results and see if there were any positive bands. Of course, if you do have positive bands that leaves you with the problem of being caught in the middle of the Lyme war being waged within the medical profession.

Hi Navy Wife,

I have the same symptoms that you describe. They started after approx. 15 yrs with my pouch. The pain in my joints/muscles has slowly gotten worse over the last 5 yrs.
Medications do not get rid of the pain (Celebrex, Hydromorphone). I have spent the last 20+ yrs exploring vitamins, herbs, etc. but nothing has worked. The biggest improvement I have seen has come from not working. If I stay at home, and do things at my own pace, it seems to help.

I really don't know what to do.

Markus

Hello Navy Wife!

I am exactly 5 years out and am starting to experience the same thing. I had an issue with my neck, where I couldn't move it at all a few weeks ago. I have been experiencing really bad pain in my wrists and fingers off and on for the past year as well. This morning I woke up and every joint in my body (my wrists and neck were the worst) was in horrific pain. It is only my 3rd day at my new job (moved from FL to Maine last week) so there was no way I could call out or anything. In some weird way, us pouchers are lucky(?) that we are well versed in dealing with pain.

My fiance had to actually hold my coffee cup for me, brush my teeth and get me ready for work.

So the very first thing I did when I got here was to log on this site. I basically have copied and pasted all these posts into a Word document and set about to find a rheumatologist. It is such a bad time for this to happen as I don't have any of my doctors set up (luckily I stayed in contact with my GI)as I haven't been living here in Maine for 2 years.

Jan, I was thinking about you at 6am because I knew you had some sort of arthritis, but I couldn't remember the exact sort.

I posted a Rant and someone suggested getting tested for Lyme disease, which I will do again.

Markus, I also remembered you suffered from pain post pouch and that you hadn't found anything really suitable.

In the hospital, they suggested AS. But, the pain isn't confined solely to my spine and hips, so that makes me think it isn't AS... Am I wrong to think this?

Fibromyalgia does seem like a disease that doctors give when they cannot figure out anything else. Like chronic fatgue syndrome. I don't blame you, Navy Wife, for not settling for that vague diagnosis, although fibromyalgia is a very real and painful problem.

I am so glad we all have each other. It was the only way I could calm myself down this morning-was knowing I had a place that I could ask questions and get answers from people whose bodies are similar to mine (albeit we all have different responses) and not just from people or doctors who stare at me with a deer in the headlights look that I know means they think I must be some sort of genetic mutant.