From 1992-2005 I had severe ulcerative Colitis the last few years there I was bad going to bathroom 30+ times a day i was never in remission and the only drug that helped me was Prednisone and lots of it... During this time i had lower back, hip, hands etc joint pain that came and went some days it was bad like having the flu... I tried Remicaide "spelling" for my UC and it didnt touch it but it 100% removed all joint pain for 3 months at a time, negative thing to this was i got upper respiratory, sinus, and various infections really easy had to take 2 rounds of antibiotics usually to get over it.... Since J-Pouch I have zero bathroom issues im normal for once but have other issues that haunt me and im interested in what you all have and can recommend... I am 36 years old now and my joint pains has come back its hit and miss but really bad when its here chills aches pains usually lower back hips hands i feel like i got flu and the only meds that even help are large dose's of Ibproprehen and might go week or two no issues... the other issue is i have been diagnosed with CFS This kills me cause i am a single father with 7 year old and putting a whole day together is so hard. I can actually sleep 18 hours a day if not working... When working i have to rely on caffeine, caffeine pills, even diet pills Phentermine to stay awake.... exercise doesnt help, sleep doesnt help, doctors here in oklahoma have no answer for CFS and its debilitating, im 36 there has to be an answer to CFS the more read sounds like UC-joint pain-CFS all are autoimmune disorders and no one has answers for them.....Thanks for the time to read and let me know what you think or feel i could do... have a Blessed Day! CD
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WOW been few days and no replies.... Guessing i asked the wrong questions???? Thanks....
Sorry I don't have answers, but happy you have had a great functioning pouch. I know several people on here do have problems with chronic fatigue, arthritis, and so forth. Have you see a doctor recently? Someone will chime in shortly I hope, that has a better insight than I
NYS
NYS
Autoimmune disorders such as joint pain/arthritis and chronic fatigue, etc are frequently associated with IBD. Perhaps a consult with a Rheumatologist if you havent already done so may be helpful?
I agree that a rheumatologist referral is in order. Not sure if you noticed, but there are a few threads with similar discussions going on. What is CFS? If it is chronic fatigue syndrome, I think that is pretty much a non-diagnosis, meaning a cop-out diagnosis, because there is no real treatment. I presume you have been tested to rule out common causes of chronic fatigue?
I did not respond earlier because I was not sure what you were asking specifically.
Jan
I did not respond earlier because I was not sure what you were asking specifically.
Jan
Jan....Do you consider Fibromyalgia to be in the same category as CFS? Just curious!
There do seem to be alot of joint pain threads going on as of late..i am experiencing it as well but i am thinking its the change in the weather..hoping to grow accustomed to it soon..this usually happens every year for me.
I am not sure what I think of fibromyalgia. For a long time it was considered another one of those "I-don't-know-what-it-is" catch-all diagnoses that basically tells the patient to go away because you're a hypochondriac or the doctor can't help you. Basically, you were diagnosed with fibromyalgia because they didn't have another diagnosis.
But, in recent years, the diagnostics have become more refined and specific, but I think it might still be over used as a diagnosis with some practitioners. The main problem I find with it is when the doctor does not do the work to rule out other causes before assuming it is fibromyalgia. At least they have some specific treatments for it now.
But chronic fatigue to me is not a diagnosis, but a group of symptoms. Actually, it is often associated with fibromyalgia and other causes of chronic pain. It is also associated with chronic viral infections, like Epstein-Barr and mononucleosis. There is ALWAYS a cause, even if it is depression and not your typical "physical" causes. Not treating the cause just promotes the chronicity of the whole mess.
Jan
But, in recent years, the diagnostics have become more refined and specific, but I think it might still be over used as a diagnosis with some practitioners. The main problem I find with it is when the doctor does not do the work to rule out other causes before assuming it is fibromyalgia. At least they have some specific treatments for it now.
But chronic fatigue to me is not a diagnosis, but a group of symptoms. Actually, it is often associated with fibromyalgia and other causes of chronic pain. It is also associated with chronic viral infections, like Epstein-Barr and mononucleosis. There is ALWAYS a cause, even if it is depression and not your typical "physical" causes. Not treating the cause just promotes the chronicity of the whole mess.
Jan
I'm going out on a limb here so please avoid any bashing.
I have several auto-immune disease which if you have UC, you know is common in our population. Fibromyalgia and osteoarthritis are two of them. I have not completely changed my life but improved it around 75-90% by changing my diet.
For years after my jpouch surgery (I am now 18 years out) I avoided salads, undercooked veggies and the like because I feared blockages. I have been hospitalized three times in the last 5 years with blockages.
I also have celiac, so no wheat, no grains at all. (very occasionally rice) I have started to add salads, and green juicing and so many of my symptoms have improved! So many things can irritate the pouch including NSAIDs (you mentioned ibuprophen, it's one of the worst---try tylenol arthritis strength)
Sugar, coffee, red wine, cold cuts, nuts, corn etc., xanathan gum, are all big offenders for us. I learned as I went through the celiac protocol, and each person may react differently. BTW, xanthan gum is used in laxatives and it's in all sorts of foods, read your labels.
And lack of exercise. It sounds counter-productive and with CFS I'm sure the last thing you want to do is exercise, but I have found (at least with Fibro) that exercise is the ONE thing that makes me feel better.
And sleep. Most of us in todays society pride ourselves on how busy we are, we forget that the body needs time to repair and grow new cells, preferably 8 hours of in the bed sleep a day! Do it!
In all my years of auto-immunes I have found I have to be my own advocate as the docs are mostly clueless. My own excellent Rheumy says that he learns more from his patients because we are the ones who are interested (in our own health) and e do the diligent research online and in real life.
Try new things. Find out what works for you, but the old adage you are what you eat is very very true. Get rid of artificial everything and see how it goes.
Namaste
I have several auto-immune disease which if you have UC, you know is common in our population. Fibromyalgia and osteoarthritis are two of them. I have not completely changed my life but improved it around 75-90% by changing my diet.
For years after my jpouch surgery (I am now 18 years out) I avoided salads, undercooked veggies and the like because I feared blockages. I have been hospitalized three times in the last 5 years with blockages.
I also have celiac, so no wheat, no grains at all. (very occasionally rice) I have started to add salads, and green juicing and so many of my symptoms have improved! So many things can irritate the pouch including NSAIDs (you mentioned ibuprophen, it's one of the worst---try tylenol arthritis strength)
Sugar, coffee, red wine, cold cuts, nuts, corn etc., xanathan gum, are all big offenders for us. I learned as I went through the celiac protocol, and each person may react differently. BTW, xanthan gum is used in laxatives and it's in all sorts of foods, read your labels.
And lack of exercise. It sounds counter-productive and with CFS I'm sure the last thing you want to do is exercise, but I have found (at least with Fibro) that exercise is the ONE thing that makes me feel better.
And sleep. Most of us in todays society pride ourselves on how busy we are, we forget that the body needs time to repair and grow new cells, preferably 8 hours of in the bed sleep a day! Do it!
In all my years of auto-immunes I have found I have to be my own advocate as the docs are mostly clueless. My own excellent Rheumy says that he learns more from his patients because we are the ones who are interested (in our own health) and e do the diligent research online and in real life.
Try new things. Find out what works for you, but the old adage you are what you eat is very very true. Get rid of artificial everything and see how it goes.
Namaste
Well put and I couldn't agree more! I know for my enteropathic arthritis, excercise and activity is a huge factor in how I feel. The meds can only take me so far.
I think the movement of "slow food" and eating natural foods pulls us away from a predominatly processed foods diet, and without even trying, you wind up improving your overall health. I am sure that having autoimmune disease puts you at a higher risk to be sensitive to all sorts of things. Naturally, food would be a big factor.
I know everybody hates the notion of experimenting and tailoring their diet to fit their own individual needs and tolerances, but that is what it really takes. You can't just look at a "how to" guide and follow it blindly. Makes sense during those early months, but over time you have to open up to new things. I have always found fresh fruit and vegetables a fine addition to my diet. Yeah, I get diarrhea from some, but I don't get "sick." a few minor obstructions here and there, but nothing major.
Jan
I think the movement of "slow food" and eating natural foods pulls us away from a predominatly processed foods diet, and without even trying, you wind up improving your overall health. I am sure that having autoimmune disease puts you at a higher risk to be sensitive to all sorts of things. Naturally, food would be a big factor.
I know everybody hates the notion of experimenting and tailoring their diet to fit their own individual needs and tolerances, but that is what it really takes. You can't just look at a "how to" guide and follow it blindly. Makes sense during those early months, but over time you have to open up to new things. I have always found fresh fruit and vegetables a fine addition to my diet. Yeah, I get diarrhea from some, but I don't get "sick." a few minor obstructions here and there, but nothing major.
Jan
I have the same joint pain with my UC but now that I have my J pouch it isnt as bad. The rheumatologists did not help, they will just put you on hmira or remicade. I wold try glucosimine and visit a pain management doctor.