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Crohn's Fatigue and Joint Pain


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Old 09-13-2013, 04:21 PM   #1
Isotope
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Crohn's Fatigue and Joint Pain

Greetings Sufferers,

Long time Inflammatory Bowel Disease, J-Pouch.

New to Crohn's last year. Fatigue and Joint Pain so bad I can hardly drag myself through the day. My productivity is close to zero due to these symptoms.

What drugs or therapies will help?


Iso~

Currently:
Humira
Imuran

Last edited by Isotope; 09-15-2013 at 06:33 PM. Reason: misc

 
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Old 10-05-2013, 02:35 PM   #2
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Re: Crohn's Fatigue and Joint Pain

Hmmm.... No Crohn's sufferers out there with extreme Fatigue and Joint Pain? Yikes, am I the only one?

Iso~

 
Old 10-05-2013, 03:53 PM   #3
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Re: Crohn's Fatigue and Joint Pain

Have you been tested for nutritional deficiencies? When the small intestine is affected in Crohn´s there is a risk of nutritional deficiencies. To name a few, iron deficiency (which can also cause anemia), or vitamin B12 deficiency. With long-running inflammatory bowel disease there may be also be a risk of bone problems (low bone density) due to low absorption of vitamin D or calcium. If you have a nutritional deficiency, supplementation should help.

On the other hand, the inflammation associated with Crohn´s may also directly cause fatigue and Crohn´s can be associated with a RA (rheumatoid arthritis)-like syndrome causing joint inflammation. If you have an RA-like syndrome, treatment may be different so I would certainly consult a doctor/specialist.

In any case, it seems likely that your symptoms can be improved with the right treatment.

(I haven´t been diagnosed with Crohn´s but have had some GI complaints and have had nutritional deficiencies).

 
Old 10-29-2013, 06:37 PM   #4
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Re: Crohn's Fatigue and Joint Pain

isotope, what is your diet. have you ever tried irrigation with wáter or suppositories.

Last edited by sabicas; 10-29-2013 at 06:39 PM.

 
Old 10-29-2013, 07:06 PM   #5
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Re: Crohn's Fatigue and Joint Pain

Hello Friends,

Thank you for writing.

Since I first posted above my symptoms have spiraled into a myriad of issues. My hair is falling out, my skin is red and flaking on my face. Every joint aches and my bones hurt. And of course the fatigue is just unreal.

I'm very surprised by all of this. I've been battling these diseases, first Ulcerative Colitis in the 80's, then J-Pouch surgery in the 90's, and now Crohn's. I'm very accustomed to feeling bad nearly every day but my coping ability has really been tested over the last year or so.

In total contrast to how I feel, my monthly labs always come back normal. I take 2,000mg Vit-D, a Multi, B-Complex, Fish Oil, Aspirin, and Pro-Biotics.

My diet could definitely be improved, nothing too awful but I should probably be Gluten free, or Paleo or both or something.

My Doctor lays no blame on Humira or Imuran and is of no help otherwise. I'm suspicious of these drugs. I had a very minor toe surgery last year to address a cyst. I'm still limping today, 14 months after this surgery. I finally sought treatment this week. The toe is blown up, red, swollen, and the bone has remodeled and doubled in size. The Podiatrist now wants to remove the bone entirely, suspecting a bone tumor!

I'm worried that any further surgery will aggravate something else and cause some other issue. My immune system is completely wrecked.

It feels like I'm playing in a different ball game now, the stakes keep getting higher, and my condition continues to deteriorate. Very discouraging.

Iso~

 
Old 11-14-2013, 09:58 PM   #6
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Re: Crohn's Fatigue and Joint Pain

Isotpe,

I'm new to the boards hope your still checking this. Ive had crohns for 22 years had resection 15 yrs ago disease came right back and at the same time joint pain started, burning, aching like a fire in joints especially with flares no doc quite figured it out since there was no inflammation in the joint. I have been on daily pain meds since. 2 yrs ago my knee filled with fluid, had to drain now it hurts worse gets red hot and puffy after exercises. From what docs said it can all be caused by the crohns disease. So sorry you have to go thru this. Talk to the docs about pain management but don't let them give steriod shots unless absolutely necessary. Made mine worse. Double check meds some can cause these symptoms and fatigue, hair loss, delayed healing or make you more prone to infections. If doc won't listen find a better one who will. They are not just treating a disease, they're treating a person. Sometimes they forget that. Good luck best wish.

 
Old 11-14-2013, 10:35 PM   #7
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Re: Crohn's Fatigue and Joint Pain

Thanks for writing. Yes, I hear you. I'm a PT smoker, was told to quit. I was taking Narcotics for pain, I was told to quit. Man oh man, just no relief in this disease at all. I'm taking Humira and Imuran. I feel toxic. I think we need fecal transplants. I hear some are not waiting for big pharma -they are merely asking healthy friends to fill empty capsules with stool. I know, it sounds horrid but what can we do?

Iso~

 
Old 11-15-2013, 07:08 AM   #8
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Re: Crohn's Fatigue and Joint Pain

I've done a bit of research on the fecal transplant heard it is more effective for problems stemming from bacterial infection. Don't know how well it would do for crohns because your immune system is attacking you not really bacterial. Plus wouldn't want capsule to dissolve in stomach might make it worse. With joint pain even though it hurts try to keep stretching them. Also try warm or cool packs sometimes it helps a bit. Some docs are bad about helping with pain they don't get it. Once had doc tell me he only helps with pain if patient iz terminal. Like you only deserve to be comfortable in your own body if your dying. Find one with more compassion. Either way its hard. Do what's best for you. Why are you on immuran and humira? They're both immune suppressant. I would think humira would be enough.

 
Old 11-15-2013, 11:19 AM   #9
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Re: Crohn's Fatigue and Joint Pain

Well,

My previous UC and J-Pouch surgery complicate everything. So I'm now Crohn's with these other issues. Some percentage apparently lose their J-Pouch and require permanent Ileostomy, so my Dr's med plan is geared to saving the Pouch -hence the Humira + Imuran + Cipro. The guy is all about stats, maybe a good thing, maybe not, I can hardly think straight from doing this dance for so many years. I've always been able to push through many of the GI symptoms and get a few things done in life but these non-GI symptoms are in many ways more debilitating than I ever thought possible.

Yes, many theories out there. One is that the immune system is under performing which is counter to the accepted immune suppression therapy. Another cellular theory is that there are genetic flaws that don't allow the cells to eliminate waste products or pathogens. The Gel-Cap I was speaking of would survive the stomach and release in the small bowel. I have no first hand accounts of anyone actually doing this with any success but there are studies and a few c-diff patients who were brought back from the brink with the procedure...

As for Narcotics, the patient should be the boss of their pain. I feel like if I can't cope with the discomfort then I should allowed to make that call -if it means a Fentanyl patch for life, then so be it. Unfortunately, a high Narcotic load causes mechanical bowel issues and other problems so the decision is always a balance. I'm currently on a trickle dose of Dilaudid, nearly in withdrawal, then on really bad days I blast it with a good dose and I seem to get the full benefit for at least a few hours. That seems the best I can hope for since I've tried them all and had very high daily doses in an effort to function and get relief but tolerance would ramp up too quickly and my GI tract would begin to melt down from it...

Best efforts that work somewhat, walking, hot baths or hot tubs, sleep, small meals, Probiotics, and Klonopin.

Iso~

 
Old 11-15-2013, 01:17 PM   #10
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Smile Re: Crohn's Fatigue and Joint Pain

Isotope,

Well I hope they can keep your j pouch and not do the iliostomy. I've talked to another who went through that w/UC and cancerous cells. She now has a bag and its not been healing well. I've been lucky to stay out of surgery these past years. My disease is now mostly in jejunum and at the resection area where small meets large intestine.

I tend to think crohns could have different types for people. Some could be bacterial but for myself I tend to think my immune system is crazy attacking itself. Rounds of cipro and flagyl have never helped me and I have other health issues immune related. My CD is mainly inflammation and ulcers. It seems each person has different symptoms and degrees of illness. Some take better to the meds than others and some are mild cases, while others are moderate or severe.

Also, if you haven't already check you vit d, b12 and magnesium levels. Being low on those can worsen and even cause some of those other symptoms. Check out low magnesium especially you might be surprised how many symptoms it can cause.

Its been nice talking with someone else with these problems. I don't know anyone else with crohns and as much as they might try to understand friends and family don't always get how bad it can be. Thank you.

 
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