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Crohn's Disease Forum » Extra Intestinal Manifestations » Anyone else have more pain OUTSIDE their bowels?


09-08-2015, 05:15 PM   #1
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Anyone else have more pain OUTSIDE their bowels?

Hey everyone, I'm new here and have been posting a lot but mostly because I'm trying to get to the bottom of this. Does anyone else have pain primarily manifested OUTSIDE the gut? I have gas, intestinal bleeding, diarrhea and constipation flux and the fatigue associated with Crohn's BUT I rarely have strong pain in my abdomen. I have occasional light pain and more rarely strong pain in my abdomen but where I REALLY get hurt is in my joints and muscles. Anyone else only have really intense pain in elbows, knees, and hands? Also, during what I would describe as a "flare" I will get a fever every day that lasts for maybe half an hour. Maybe I don't have Crohn's??? The main thing I lack is the pain in my gut. Anyone think it might be another autoimmune issue? I'm seeing a gastroenterologist soon to work on a diagnosis. Eeep.
09-09-2015, 06:14 AM   #2
DEmberton
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Since surgery I've on had minor abdominal pain, but my joints and bones ache seemingly all the time. Even before that I think the arthritis was more frequent than the abdominal pain.

So not just you. Everything you describe sounds like Crohn's to me.
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09-09-2015, 06:48 AM   #3
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hi, yep i have constant joint pain, but apparntley not arthritis as i dont have any inflamatory markers for it.. go figure !! but ye i feel it could be crohn's, best wishes..
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09-09-2015, 06:48 AM   #4
Charlotte.
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For me, both is equally strong I would say but the joint pain due to arthritis sometimes knocks me out even harder than my abdominal pain because nearly all joints are inflamed, especially right hip, right knee, right ankle but also fingers, wrists, elbows. I have short term fever as well, maybe for a couple of hours, then it normally disappears but I also had low grade fever for a month every night, so that depends for me.
I know someone who had severe inflammation in the small and large intestine but did not have any abdominal pain but had high fever and flu-like symptoms for months, so it seems as if Crohn's can have many faces.
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
09-09-2015, 09:16 AM   #5
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Thank you everyone for replying...it certainly seems to play out differently for all of us! DEmberton, I'm glad it sounds more like Crohn's and not something else...I'm always worried about those rare and deadly autoimmune things mandyk, I hope I'm like you and it's not arthritis! Charlotte, glad I'm not the only one who gets fevers. I'm so new to all this but it's so great to have other people who understand. I'm so glad I found this site! I tend to overthink and worry a lot.
09-09-2015, 09:30 AM   #6
fuzzy butterfly
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your welcome bbunny, lets hope gastro app sheds some light, and you can start treatment to get you better, wishing you the best of luck ..
09-09-2015, 09:48 AM   #7
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Thank you mandyk!
09-10-2015, 04:49 AM   #8
my little penguin
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Also consult a Rheumo
Spondylarthritis tends to occur in 30% of crohns patients
The joint inflame when the gut is inflamed
Other types have independent flares of the joint even when the gut is fine.
Ds has the independent juvenile kind
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09-10-2015, 04:50 AM   #9
my little penguin
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http://www.spondylitis.org/Learn-Abo...s#.VfFSP1L3anM

There is also ankylosing spondyloarthritis
Tagging maya142
09-10-2015, 08:45 AM   #10
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Thank you, my little penguin. c: Looking more into things!
09-10-2015, 10:06 AM   #11
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I know I read that Crohn's can cause some fatigue, but I'm wondering if that's why I stay so exhausted all the time? I'm even tired when I get up in the mornings, and I'm getting the right amount of rest for me. I'd rather lie down most of the time than do the things I used to do. Is this normal for Crohn's?
09-10-2015, 10:10 AM   #12
fuzzy butterfly
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some fatigue ye right.. im tired from getting up to going to bed , would probably be tired in my sleep if i knew about lol
09-10-2015, 10:12 AM   #13
DEmberton
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I wish I had "some fatigue".
09-10-2015, 10:14 AM   #14
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Jimmy Lee, I feel the same way. Recently though I'm a lot more energetic...I think it's because I've been taking a lot of probiotics but I'm not sure. It's the only thing I changed recently and I feel really good on it.
09-10-2015, 10:17 AM   #15
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@mandyk you made me ☺. Thanks. That's why I think this forum is so good.
09-10-2015, 10:20 AM   #16
Jimmy Lee
 
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Thanks BBunny. I know my eating habits have been terrible. I'm FINALLY off of prednisone. No more eating four Klondike bars "Just because. " I need to try probiotics. I also wonder if the Humira makes me tired?
09-10-2015, 10:27 AM   #17
fuzzy butterfly
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@mandyk you made me ☺. Thanks. That's why I think this forum is so good.
your welcome ... laughters the best medicine or so they say

why not join last one wins thread that can be fun, but be aware some can have a very dry sense of humour
09-23-2015, 08:42 PM   #18
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Tired? Yes! All the time... with crohn's you are malnourished and your body needs fuel to keep going... your GI tract simply does not absorb the nourishment in the limited foods you do consume... the meds prescribed ALL further kill your ability to absorb, mess with the blood counts, and cause all sorts of ailments.... since we have Crohn's we have no choice but to try and find a med which actually helps us OR the surgical knife...

Steroids can kill while improving Crohn's, Mercaptopurine [6MP] kills your immune system so you can die from infections/colds/etc while your Crohn's gets better....Humira kills you at the drug store with bill for lots of $$$$$$$$$$$$$$$$.... us seniors on Medicare Part D can't even get near some drugs [Humira at $700 per dose.... Uceris at $10/pill

These are real pains outside the bowels....

Bodily pains are the worst in the abdomen and the back... cramps dues to gas and/or partial obstruction can radiate pains throughout the body....

Meds can generate pains anywhere from toes to top of head....

Good luck to all of us :all right:
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10-09-2015, 01:06 PM   #19
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You made me truly laugh out loud!!! Thank you for the post. I haven't been on in a while, but am fixing (yeah, I'm definitely from South Carolina, lol) to get on and seek advice...more doctor frustration.
12-18-2015, 12:17 PM   #20
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An update: I found out that I tapered (or forgot to) off of prednisone too quickly and have what's knows as drug induced Addison's disease. The adrenal glands normally produce 7.5 mg of cortisone, which is necessary for the body's normal function (to keep arthritis at bay and aches and pains away). I was literally having to roll out of bed it was so bad. Since I've been on the 7.5mg it has cleared up!!! I got a referral to Duke University from my internist. My GI MD refused to refer me because "they're really picky about why you've referred patients. And since I couldn't find anything wrong with you as far as a fissure goes, I have no reason to refer you." Bear in mind this is the same physician who writes me 40 7.5 Norco tabs at a time for my anal pain. Neither he nor the surgeon who told me "there's nothing I can do for you" could see a fissure. Duke University is fabulous. Their gastroenterologist is the one who adjusted my Apriso and started me back on the prednisone because my adrenal glands hadn't kicked in. My surgeon at Duke did an exam with the analscope and within a minute declared "yep, there it is. It goes all the way to the sphincter." I asked him if this would have been seen during entry and exit of the colonoscopy scope. His response: "Only if they were not looking." Wow! I wanted to cry. It validated what I had been feeling for so long. I wanted to take the report to the surgeon in my hometown and rub it in his face. I'm still so angry about this. Anyway, this is my good news.
12-18-2015, 03:50 PM   #21
fuzzy butterfly
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Hey jimmy glad u are getting better n better care. So pleased for you. Hope things keep well for you. I would have rubbed it in his face , calls himself a doctor....Hugs 💕
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