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Extraintestinal Manifestations Reported in IBD

David

Co-Founder
Staff member
Location
Naples, Florida
The following are a list of Extraintestinal Manifestations that have been reported with Crohn's Disease, Ulcerative Colitis, and other forms of IBD. Some might suggest it's better to let your doctor think about these things so you may want to simply hit back on your browser and stop reading here. I think I contracted 20% of these just listing them. If you're aware of other manifestations, please respond to the thread. My goal is to provide information on each, in time.

Musculoskeletal
Peripheral Arthritis
Granulomatous Arthritis and Synovitis
Rheumatoid Arthritis
Sacroiliitis
Ankylosing Spondylitis
Clubbing
Osteoporosis and Osteomalacia
Rhabdomyolysis
Relapsing Polychondritis

Skin and Mucous Membranes
Oral Ulceration
Cheilitis
Pyostomatitis Vegetans
Erthema Nodosum
Sweet's Syndrome
Metastatic CD
Psoriasis
Epidermolysis Bullosa Acquisita
Perianal Skin Tags
Polyartheritis Nodosa
Cutaneous Vasculitis
Raynaud's Syndrome

Neurologic
Peripheral Neuropathy
Meningitis
Vestibular Dysfunction
Pseudotumour Cerebri
Meniere's Disease

Ocular
Conjunctivitis
Uveitis
Iritis
Episcleritis
Scleritis
Retrobulbar Neuritis
Crohn's Keratopathy

Bronchopulmonary
Chronic Bronchitis with Bronchiectasis
Fibrosing Alveolitis
Pulmonary Vasculitis
Interstitial Lung Disease
Sarcoidosis
Tracheal Obstruction

Cardiac
Pleuropericarditis
Cardiomyopathy
Endocarditis
Myocarditis
Pericarditis

Endocrine and Metabolic
Growth failure
Thyroiditis
Osteoporosis

Hematologic
Anemia - Iron Deficiency
Vitamin B12 Deficiency
Anemia of Chronic Disease
Autoimmune Hemolytic Anemia
Hyposplenism
Anticardiolipin Antibody
Takayasu's Arteritis
Wegener's Arteritis

Renal and Genitourinary
Nephrolithiasis
Retroperitoneal Fibrosis
Fistula formation
Glomerulonephritis
Renal Amyloidosis
Dreg-related Nephrotoxicity
Hydronephrosis

Hepatopancreatobiliary
Primary Sclerosing Cholangitis (PSC)
Small Duct PSC
Cholangiocarcinoma
Cholelithiasis
Autoimmune Hepatitis
Primary Biliary Cirrhosis
Pancreatitis
Ampullary CD
Granulomatous Pancreatitis
 
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Every time that my eye is caught by this heading, I read it as "Extraterrestrial Manifestations Reported in IBD" and my crazy, literal, pictorial mind has a field day. :ybiggrin:

Perhaps that's what's causing the problems in my gut - little green men!:yfaint:
 
I had clubbing for awhile but outgrew it when I got married, had kids and then old as I found the music WAY too loud!!
 

DustyKat

Super Moderator
Ahahahaha, love it guys! :)

Not sure is this will be of interest to anyone but over time I have read on numerous occasions that EIM's of IBD more frequently affect those that have large bowel involvement. This is one study (abstract) that discusses this relationship...

The records of a series of 700 patients with inflammatory bowel disease, 498 with Crohn's disease and 202 with ulcerative colitis, have been analyzed to determine the relative incidence and characteristic features of their extra-intestinal manifestations. The group with Crohn's disease included 62 with colitis, 223 with ileocolitis, and 213 with regional enteritis. A consideration of the clinical patterns and an understanding of their pathophysiology suggested a subdivision into two main groups: one "colitis related" and one related to the pathophysiology of the small nonspecific third group. Group A, colitis related, comprises joint, skin, mouth, and eye disease. The complications might be immunologically determined, were closely associated with active inflammation, and often responded to medical or surgical treatment of the underlying bowel disease. They occurred in 36% of the entire series of patients: joints were involved in 23%, skin in 15%, and mouth and eye each in 4%. Pyoderma gangrenosum was observed most often in ulcerative colitis and erythema nodosum most often in granulomatous colitis. The incidence of Group A complications was higher in disease involving the colon (42%) than in disease restricted exclusively to the small bowel (23%). There were interrelationships among the various members of Group A, with multiple manifestations occurring in a third of affected patients. Group B, related to small bowel pathophysiology, includes malabsorption, gallstones, kidney stones, and non-calculous hydronephrosis and hydroureter. Disorders in this group were generally related to the severity of the disease in the small bowel and tended to persist even in the absence of active inflammation. In contrast to Group A, this group occurred most frequently in small bowel disease, and least in colonic disease. Malabsorption was virtually confined to the patients with small bowel disease (10% incidence), while gallstones and renal stones were also both more frequent in Crohn's disease (11% and 9% respectively), the latter usually in association with small bowel resection or ileostomy. Group C, found in a small percentage of patients, consists of nonspecific complications, including osteoporosis (3%), liver disease (5%), peptic ulcer (10%), and amyloidosis (1%).

http://ukpmc.ac.uk/abstract/MED/957999/reload=0;jsessionid=B2tL5zO1EI00UGJuTIJv.0
 
I, Myself have Crohn's Disease, and multiply other illnesses, 2 of them being Osteopenia, and Hypothyroidism. Now no dr. has ever mentioned the possiblility of the hypothyroidism being a result or side effect of my CD, but the Osteopenia (the beginning of Osteoprosis) they said was probably due to all the prednisone I was on for so long trying to get my CD under some kind of control. I was on it for 3-4 yrs strait, which sucked. I am also kind of short, 4'9, and they also said CD can cause growth development problems, so...
Anyway good info for us to be more aware of, thank you!! =0)
 
My Vit. D lvls have been checked, though I do not know what the lvls were, my dr. has me on 50,000 UI a week and on Calcium tabs 2x a day, oh and 701mg of Fosamax once a week for the osteopenia.
 
This is interesting. I had erythema nodosum which I knew was linked to Crohn's but I also had recurring conjunctivitis during this bad flare, which I had no idea about.
 

DustyKat

Super Moderator
Does CD has any link with prostate pain ??
Hey sid,

Where is your Crohn's located?

My son had an issue with his urinary system last year and one point the GP was querying Prostatitis. As it was the problem resolved and his PSA was normal so Prostatitis was ruled out but I did research it at the time and I did find at least one study that found there was a link between Ileal Crohn's and Prostatitis and I would imagine it has something to do with the ileum laying close to the prostate gland and coming into contact with it when inflamed. For the life of me I can't find that study again.

If you have pain in this area the other thing to consider may be not Prostatitis specifically but pelvic pain in general caused by the inflamed bowel affecting adjacent structures.

Dusty. xxx
 
Hey sid,

Where is your Crohn's located?

My son had an issue with his urinary system last year and one point the GP was querying Prostatitis. As it was the problem resolved and his PSA was normal so Prostatitis was ruled out but I did research it at the time and I did find at least one study that found there was a link between Ileal Crohn's and Prostatitis and I would imagine it has something to do with the ileum laying close to the prostate gland and coming into contact with it when inflamed. For the life of me I can't find that study again.

If you have pain in this area the other thing to consider may be not Prostatitis specifically but pelvic pain in general caused by the inflamed bowel affecting adjacent structures.

Dusty. xxx
its located in ileum. But its very mild and at the moment I am in remission. But sometimes I feel pain in the right side of groin area.(the right of the base of my penis). I am confused as it might be prostate or maybe lymph nodes. BUt no swellings.thus I guess its not the lymph nodes.
 
I have had Uvieitis flare ups and also Arthitis. I just had surgery on June 26th and was hopeful that since I do not have active Crohn's for now, the bad stuff all 14 inches was removed, that my joint pain would not resurface but it has. Trying to understand how the extra manifestations can be active when the Crohn's isn't?
 

Jennifer

Adminstrator
Location
SLO
Wanted to share this image I came across on Extraintestinal Manifestations.

"Crohn’s disease is associated with extraintestinal manifestations that may be more problematic than the bowel disease. Colitic arthritis is a migratory arthritis that affects knees, ankles, hips, wrists, and elbows that may accompany Crohn’s disease (although it is uncommon when Crohn’s is confined to the small intestine). Often, joint pain, swelling, and stiffness parallel the course of the bowel disease. Successful treatment of the bowel disease results in improvement in the arthritic symptoms. Pericholangitis, usually associated with primary sclerosing cholangitis (PSC), is the most common hepatic complication of inflammatory bowel disease. PSC is demonstrable by endoscopic retrograde cholangiopancreatography (ERCP) or hepatic magnetic resonance imaging (MRI). Pericholangitis is characterized by inflammation of the portal tracts with lymphocyte and eosinophil infiltrates. Degenerative changes in the bile ductules are also characteristic. Kidney stones (calcium oxalate stones) are seen in patients with small-intestine Crohn’s disease. Inflammation from the bowel can result in urinary tract complications. Occlusion of the ureters, leading to obstruction and hydronephrosis, usually involves the right ureter in Crohn’s patients. Fistula can form between inflamed bowel and the urinary bladder leading to infection (Figure 8)."
http://www.hopkinsmedicine.org/gastroenterology_hepatology/_pdfs/small_large_intestine/crohns_disease.pdf
That image and the link itself gives a great overview on Crohn's.
 

Attachments

C-Diff, it whole name is too much, but if you google it you will find it quite overwelming both symptom and prevalency.
 
All I can say is, Aren't we all brave? We may not have all this but I'm guessing that many of us are suffering suff without even considering it to be related. I have trouble peeing sometimes and I find that it's nearly always when I'm having a bad time with D, so perhaps dehydation plays a part....
This is a rotten condition and wish there was more ways to get help...
 

Jennifer

Adminstrator
Location
SLO
Hi bookchick. Just did a quick search and found that Thromboembolism may be an EIM of Crohn's yet is listed as rare.

"Rarer extra-intestinal manifestations of inflammatory bowel disease include: lung conditions, such as bronchiectasis and bronchitis; hyperhomocysteinemia; pancreatitis; renal stones; and venous thromboembolism." http://www.cks.nhs.uk/crohns_disease/background_information/extra_intestinal_manifestations

"The three organ systems most commonly associated with EIM of Crohn’s disease are musculoskeletal, ocular, and mucocutaneous [6]. More recently described are associations of Crohn’s disease with pulmonary disease, psychological syndromes, osteoporosis, and thromboembolism [7]." http://www.siumed.edu/surgery/clerkship/colorectal_pdfs/extraintestinal manifectation of CD.pdf

Further reading: http://www.ncbi.nlm.nih.gov/pubmed/6643010
 
Warts? I am prone to them. Had lots of them on fingers during my late teens/early twenties but not really since. Had the odd one on my face as well, but nobody ever related them to Crohn's.

Going back some 4 years ago, I developped about six large purple red blotches on my legs, primarily on the shins. The doctor I saw on that occasion suggested they were insect bites (despite tmy protests that I NEVER get bitten and these were much bigger than any insect bite I have ever seen) and that my wife should change the bed sheets more often. Well, by the time I had my next Rheumatology appointment a few weeks later they were gone. The doctor there suggested that they were likely Erythema Nodosum and also ran an ACE test. The levels were high and Sarcoidosis was indeed suspected. This was confirmed a few weeks later after I ended up in hospital due hypercalcaemia and kidney impairment.

I can't help thinking though that had the general practitioner bothered to investigate properly and take me seriously, the Erythema Nodosum which is clearly connected with Sarcoidosis might have contributed to a positive diagnosis much sooner and me saved weeks of waiting and suffering.

My Crohns was first identified as affecting the colon (crohn's-colitis) and especially the area near the appendix and close to where the little intestines start, but since I get inexplicably low on Iron, B12 and now, it seems vit D as well, I have been told that the Crohn's is likely affecting the ileum where these are absorbed. This would mean that my Crohn's is in both the large and small intestine. Does this put me in BOTH categories?

One GP told me that it can affect anywhere in the GI tract, which, she said, might also explain my occasional tooth/jaw pains which periodically come and go with no obvious signs of teeth trouble. Anyone else experience this?
 

723crossroads

Banned
Location
USA
Warts? I am prone to them. Had lots of them on fingers during my late teens/early twenties but not really since. Had the odd one on my face as well, but nobody ever related them to Crohn's.

Going back some 4 years ago, I developped about six large purple red blotches on my legs, primarily on the shins. The doctor I saw on that occasion suggested they were insect bites (despite tmy protests that I NEVER get bitten and these were much bigger than any insect bite I have ever seen) and that my wife should change the bed sheets more often. Well, by the time I had my next Rheumatology appointment a few weeks later they were gone. The doctor there suggested that they were likely Erythema Nodosum and also ran an ACE test. The levels were high and Sarcoidosis was indeed suspected. This was confirmed a few weeks later after I ended up in hospital due hypercalcaemia and kidney impairment.

I can't help thinking though that had the general practitioner bothered to investigate properly and take me seriously, the Erythema Nodosum which is clearly connected with Sarcoidosis might have contributed to a positive diagnosis much sooner and me saved weeks of waiting and suffering.

My Crohns was first identified as affecting the colon (crohn's-colitis) and especially the area near the appendix and close to where the little intestines start, but since I get inexplicably low on Iron, B12 and now, it seems vit D as well, I have been told that the Crohn's is likely affecting the ileum where these are absorbed. This would mean that my Crohn's is in both the large and small intestine. Does this put me in BOTH categories?

One GP told me that it can affect anywhere in the GI tract, which, she said, might also explain my occasional tooth/jaw pains which periodically come and go with no obvious signs of teeth trouble. Anyone else experience this?
Yes, I get the tooth and jaw pain from time to time and it lasts a long time. I use sensitive teeth toothpaste now and is helping. But the jawpain, I always chalked up to my neck. Had no idea crohn's could cause it!
Colitis is just in the colon and crohn's can be anywhere. They just wrote on my report when diagnosed had some colitis too.Because there were 2 ulcers in the colon and the ileum area was inflamed too.
 

Jennifer

Adminstrator
Location
SLO
My Crohns was first identified as affecting the colon (crohn's-colitis) and especially the area near the appendix and close to where the little intestines start, but since I get inexplicably low on Iron, B12 and now, it seems vit D as well, I have been told that the Crohn's is likely affecting the ileum where these are absorbed. This would mean that my Crohn's is in both the large and small intestine. Does this put me in BOTH categories?

One GP told me that it can affect anywhere in the GI tract, which, she said, might also explain my occasional tooth/jaw pains which periodically come and go with no obvious signs of teeth trouble. Anyone else experience this?
Would mean that you basically have Crohn's. Mine also affects me in the ileum and the beginning of the large intestine.

As for the tooth and jaw pain you may have bruxism/teeth grinding which you may be doing in your sleep and not know about it. http://www.mayoclinic.com/health/bruxism/DS00337
 

DustyKat

Super Moderator
My Crohns was first identified as affecting the colon (crohn's-colitis) and especially the area near the appendix and close to where the little intestines start, but since I get inexplicably low on Iron, B12 and now, it seems vit D as well, I have been told that the Crohn's is likely affecting the ileum where these are absorbed. This would mean that my Crohn's is in both the large and small intestine. Does this put me in BOTH categories?
There are 5 types of Crohn's disease that relate to the area of bowel affected. Crohn's can affect a person anywhere from the mouth to the anus and it is possible to have overlap of types:

The five types of Crohn's disease with their symptoms are:

*Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.

*Ileitis: This type of Crohn's disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.

*Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn's disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.

*Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhea, and abdominal pain that can become intense.

*Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.

There can be overlap between these types of Crohn's disease. Some people have more than one area of the digestive tract affected.

http://www.webmd.com/ibd-crohns-disease/crohns-disease/5-types-crohns-disease
When you have involvement of the ileum and the large bowel it is ileocolitis which, as stated above, is the most common type of Crohn's.

Have you ever had any studies done of the small bowel?

I would have to wonder too with the involvement of your Crohn's being so close to the ileocaecal valve that there isn't also involvement of the ileum. Your doctor is right to suspect that your B12 issues would point to ileal involvement as the terminal ileum is the only area of the bowel that it is absorbed.

Dusty. xxx
 
Jenifer, my doctor and dentist suspected teeth grinding during sleep in my teens, although it did not require any treatment. I'm not sure whether I suffer from it now but I used to get a lot of nightmares about teeth falling out then which I don't get now!

Dusty, thanks for that interesting info which helps me undrestand why there can be overlap. I read though that Iron is absorbed in the duodenum and upper jejunum so does my occasional Iron deficiency mean that the Crohns is affecting other parts of the GI tract sometimes or might this be due to other factors?

In answer to your question about studies, about a couple of years ago, because I was suffering reflux, I did have an ultrasound to check for swelling in the small intestine area but no specific isssues were reported. I also had a gastroscopy which picked up inflamation in the esophagus and some milder inflamation in the duodenum. This was put down to the medication I was on at the time (for another issue) which included Aspirin. They also did a check for Heliobacter Pylori but this was negative. It was treated with Lanzoprazole which did improve things but it only really improved when I was taken off the Aspirin some weeks later.

I do experience the symptoms of ilecolitis, wth occasional cramps and pain in the lower to middle right but no significant weight loss, but I also get many of the symptoms of Colitis from time to time.

Also, on a rather weird note, on very rare occasions I have also had sharp pain immediately after consuming breakfast. I remember quite a few of these in my childhood as the pain was - and still is when I get it - excruciating and causes me to double over in pain, but only lasts for several seconds. I get a further 2 or 3 waves of pain less intense than the previous maybe 2 or 3 mins apart and then it subsides. Never did figure out what causes it and doctors have always dimissed it. It only ever happens after the first meal of the day and only once in a while, although when it does happen, it might recurr two or three times within that week. It then doesn't happen again for months. Perhaps something triggering a cramping action somewhere?
 
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DustyKat

Super Moderator
Interesting about your endoscopy results. I can see why ceasing the Aspirin would have helped.

Now when was this scope done in relation to your Crohn's diagnosis?

Your Iron deficiency could be due to you actually having disease in the duodenum/jejunum as reflected in the endoscopy or it may be down to bleeding. If this ties back to you being on Aspirin then that will cause bleeding but so does your Crohn's if it is active. Bleeding doesn't have to be obvious, it can be slow and insidious leading to the same end result...iron deficiency.

Are you female? If so your periods can place extra burden on the system which then puts your iron needs under pressure especially if you are flaring.

Dusty. xxx
 
Hi all! I'm going to the Mayo Clinic tomorrow. My Crohn's has only appeared in my ascending Colon, but I get internal bleeds to the point of hospitalization and blood transfusions. The latest visit, I had 2 Colonoscopies, and I saw the images. My Crohn's was very minimal-not enough to show how I could be losing so much blood. My appointment tomorrow is with the Gynecologist to see if possibly I have Endometriosis attacking my colon from the outside! If so, I will have surgery to remove it. I pray that is what it is, since my Crohn's doesn't normally bother me, but has been painful and unusually active since July 2013. I'm not on any medications (Thank GOD I got off Pred 2 days ago). I'm wondering if that might be included in this list?
 
Hi and welcome. We took our daughter to Mayo and had a very good experience.

I'm going to tag in DustyKat
I "think" her daughter when dx had her Crohn's more of the outside of the bowel....I think. :)

She'll be along when she can.

HUGS
 
I don't see mention of it, so I figured I'd add mine. I don't know if it has a name, but my periodontist found "cobble stoning" on my gums that was determined to be related to my Crohn's.
 
Inflamed eye, small sore that got bigger and then had bad reactions to bandaids of several different types. The eye freaks me out as I have had 2 very lengthy, nose on my knees recovery times from detached retinas.. The little sore that could is now bandaged with an ace bandage. Because of its location it looks like I tried to slit my wrist. What Jolly fun!
 
I also had osteopenia @ 33 & had never been on steroids prior to that bone scan.....did receive IV steroids just prior to my first dexascan......could it be malabsorption? Possibly due to low vitamin D/ & CD????
 
On a side note I have CD of terminal ileum..... my extra intestinal manifestations include: kidney stones, migraines, arthritic pain since my 30's, uveitis, low Vitamin D.....osteopenia in my 30's as well... very interesting!!!
 
Epilepsy.

I'd offer a link, but I don't have the ability to post links until I have posted 10 times since I just joined today. Just google "Crohn's and Epilepsy"
 
Location
San Diego
The following are a list of Extraintestinal Manifestations that have been reported with Crohn's Disease, Ulcerative Colitis, and other forms of IBD. Some might suggest it's better to let your doctor think about these things so you may want to simply hit back on your browser and stop reading here. I think I contracted 20% of these just listing them. If you're aware of other manifestations, please respond to the thread. My goal is to provide information on each, in time.


Cardiac
Pleuropericarditis
Cardiomyopathy
Endocarditis
Myocarditis
Add pericarditis to the cardiac section. It's a rare extra intestinal manifestation - only about 9 or 10 cases reported in the medical literature, but I came down with it in 2017. It stiffened the pericardium making it inflexible and thus inducing heart failure, because the constricted heart could not fully expand to fill with blood. I ended up having open-chest heart surgery (pericardiectomy) to remove the front half of the inflamed pericardium, and I got put on Stelara to knock down Crohn's and prevent any sort of relapse. So far it's working. The Crohn's is in remission and no further extra-intestinal manifestations.
 
Add pericarditis to the cardiac section. It's a rare extra intestinal manifestation - only about 9 or 10 cases reported in the medical literature, but I came down with it in 2017. It stiffened the pericardium making it inflexible and thus inducing heart failure, because the constricted heart could not fully expand to fill with blood. I ended up having open-chest heart surgery (pericardiectomy) to remove the front half of the inflamed pericardium, and I got put on Stelara to knock down Crohn's and prevent any sort of relapse. So far it's working. The Crohn's is in remission and no further extra-intestinal manifestations.
May I ask what your symptoms were? I've been experiencing twinges of chest pain and occasional breathlessness for the last few months, it was worse and quite scary on remicade, less intense on entyvio but still there, I also get dizzy when I stand up. Seeing the consultant at the start of September.
 
Location
San Diego
My main symptoms were the symptoms of heart failure - shortness of breath, especially upon exertion. My chest/heart felt sort of "uncomfortable" but not sharply painful. Climbing stairs or walking fast or walking uphill became very difficult without stopping to rest a lot. Running was out of the question. When it got really bad I even felt short of breath while lying down. I could breath air in and out just fine but it still felt like I was slowly smothering.

The surgery cured this. Now I'm back to normal heart and lung-wise.
 
My main symptoms were the symptoms of heart failure - shortness of breath, especially upon exertion. My chest/heart felt sort of "uncomfortable" but not sharply painful. Climbing stairs or walking fast or walking uphill became very difficult without stopping to rest a lot. Running was out of the question. When it got really bad I even felt short of breath while lying down. I could breath air in and out just fine but it still felt like I was slowly smothering.

The surgery cured this. Now I'm back to normal heart and lung-wise.
Thanks for the information. I'm glad you're better and that the stelara is helping.
 
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