My story: Extraintestinal symptoms worse than the Crohn's itself

Hello everyone, I'm new to the forum so I'd like to introduce my story:

I'm a 40 year old male. I was first diagnosed with Crohn's disease at the age of 26 in 2003. Since then I've had 4 colonoscopies. Each scope, including the latest from last year, has shown scattered shallow erosions only in the terminal ileum and an otherwise healthy colon (though they did find diverticulosis). Luckily I've never needed any surgeries. One scope was so mild (this was after a run of Entocort) that my doctor said she thought it was unlikely that my irritable bowel symptoms -- average 5 loose stools per day and sometimes with urgency - could be attributed to the Crohn's.

Whether my Crohn's or irritable bowel is causing my loose stools and urgency is an open question. Irritable bowel, but not Crohn's, seems to run in my family, as both my father and sister have struggled with it. I have occasional cramps and urgency, and the 5 loose stools a day I understand is more than average (normal people have 1-2??). I get the BM usually shortly after a meal. It usually doesn't wake me up at night. I've also been lucky enough where what I eat doesn't seem to affect my condition, or at least I haven't noticed a correlation yet. I like to eat a lot of spicy foods.

I have been sick for a long time, but if you asked me to describe the worse symptoms, they wouldn't even be my GI issues. Going back to being a teenager, I've struggled with a whole syndrome of issues that vary in duration and intensity, going into remission and coming back later. During periods of remission in my life, I'm almost normal, with little health quirks here or there that are manageable. But during a flare, often not just one symptom but a cluster of symptoms will come back. In my most recent one, I have felt nauseous, with back pain and fatigue and cramping, all together. When I feel like this, it can be difficult to just get through the day.

One of my worse symptoms over the years which comes and goes has been a chest tightness. It feels like someone is grabbing me and squeezing me, the pressure is actually not in my abdomen but higher, where the two ribcages connect. It can be hard to get in a good breath, and it is usually accompanied by fatigue and irritability, and often back pain. I've had the workup of heart related issues (I also had palpitations so got that checked out), so I doubt it's related to the heart (though they did find a left bundle branch block). Again it will come and go mysteriously but it's quite uncomfortable, and it seems to get worse as the day goes on.

Other symptoms that I deal with include fatigue unalleviated by rest, back pain - sometimes intense - various joint pains (especially my wrists), eye pain and floaters (I had the eyes checked out but they were fine, but was diagnosed with irritation/inflammation of the eyelid and given steroid drops), low-grade chronic bronchitis (I have a steroid inhaler), hemorrhoids/anal fissures which I treat with hydrocortisone suppositories, nausea, and headaches. Sometimes I have just a general feeling of malaise and irritability accompanied by a light-headed feeling or "brain fog" and difficulty concentrating. I've had these symptoms going back to being a teenager, 6-8 years before I was diagnosed with Crohn's. They were the first presenting symptoms for me.

In terms of treating the Crohn's, I have been on Pentasa for the last 12 years, and on a few occasions, Entocort. I don't really notice much difference whether I take these drugs or not, in terms of my extra intestinal symptoms and even my bowel movements. Of course, you don't know how bad things would have been if you didn't take them. I stopped the Pentasa once and was fine for a few months, but then I had a weird episode of acute pain that might have been diverticulitis, I took antibiotics and it went away, but I went back on the Pentasa after that "just in case". Like others, I have read about the trials that have shown that Pentasa has little or maybe no efficacy for Crohn's and I wonder if it's really doing anything. At the very least it's definitely not helping with my chest pains or fatigue.

Over the years my medical syndrome has remained a mystery, and I continue to wonder how much can be explained by the Crohn's. Do I have an auto-immune disorder of which Crohn's is the symptom, or is Crohn's causing all thee other problems too? In the literature that I've read online, it seems many of my symptoms - fatigue, back pain, joint pain - can be caused by Crohn's. However, I've had a hard time getting my GI docs excited about it. For one thing they are used to treating the gut and are primarily concerned about that - and I appear to have a mild case of Crohn's. Another thing is that when they run the blood tests, my CRP markers (to check for inflammation) are always normal, showing no abnormal inflammation (although I've heard that's not always reliable?). My last GI doc told me that he doubts the other symptoms are related and I should check with my primary care doc -- why? Because if they were caused by crohn's, he says that I would have worse crohn's - my scope results would be worse, and inflammation markers would show a lot more activity. I've also been to 2 different rheumatologists and they've done a variety of blood work and found nothing unusual from the rheumatology perspective.

Because the Pentasa alone hasn't yielded a totally clean scope (they still see some active signs of Crohn's), several GI docs have floated the idea of stepping up and going on 6MP or Imuran, or even trying something like Humira with the new "top down approach" that some docs are trying these days. I have to be honest these drugs scare me. I don't like the idea of taking an expensive, heavy duty drug that requires injections, frequent blood monitoring, leaving myself more open to infections, and raising my chances of lymphoma or pancreatitis. However I'm sort of at my wits end, feeling crummy day after day, and at a point where I might want to try it, not so much for the Crohn's, but to see if it would help with all these other cluster of symptoms that I get from my mysterious syndrome.

I'm wondering if others in this forum have complained more about fatigue, back pain, chest tightness, light headedness, eye pain, joint pains, nausea, etc, than the bowel symptoms, and if they've have luck with helping these things by taking stronger Crohn's medications such as Humira or 6-MP? Or do you think it's likely that these things are unrelated and would not be helped by these medications? I suppose I could try and see, unfortunately it seems it's not that easy to "just try" a pill or 2, Humira requires 4 injections that last a month, and if you go off of it you might develop anti-bodies, and 6-MP could take 3 months to start working.

Any advice is much appreciated!

Thanks and hang in there everyone

-- sickincali

P.S. I also have anxiety and take klonopin for that as needed. It can make my condition worse but I don't believe it is the cause.

Welcome. I know there is s thread on here for those who have extreme fatigue. You might want to ask your doctor about a b12 or iron shots or supplements

The chest pain could be Gastroesophageal reflux disease, or GERD. It is a digestive disorder that affects the lower esophageal sphincter, the ring of muscle between the esophagus and stomach. I get acid reflux, and the heartburn can feel like a heart attack, I even get pain in my back between the shoulder blades.
I used to have fatigue, nausea, brain fog. That all improved on the heavier drugs, Azathioprine, Remicade. I'm now on Stelara because of side effects. It could be worth a try to see if they would make you feel better. I hated dragging myself around, you don't realize how sick you've been until you start to feel good again.

Extra intestinal manifestations of Crohns scan definitely affect the areas you speak of. My son doesn't have stomach or abdominal pain or frequent diarrhea or blood associated with his CD but he has spondyloarthropathy (joint disease) that is an extra intestinal manifestations of CD and affects his lower back (SI joints) and other joints. He has episcleritis(eye condition) that flares that is an extra intestinal manifestation of CD.

Her are some other members who are knowledgeable about EIMs of CD, maya142 and my little penguin.

Here's a credible link about the EIMs of CD

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127025/#__ffn_sectitle

fatigue unalleviated by rest, back pain - sometimes intense - various joint pains (especially my wrists), eye pain and floaters (I had the eyes checked out but they were fine, but was diagnosed with irritation/inflammation of the eyelid and given steroid drops),

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I would see a rheumatologist familiar with SpA. You could have Spondyloarthritis (SpA), a type of inflammatory arthritis that is associated with Crohn's Disease. It doesn't matter if your Crohn's is mild, you could still have SpA. With SpA, lower back pain is common and often the hips, knees and heels are involved too. But really any joint, including your wrists, could be involved.

Sometimes there is visible swelling and redness, sometimes not. Sometimes ESR and CRP are high with SpA, but for a good 40% of SpA patients, there are normal.

Pain that gets better with movement and worse with rest is a characteristic. So is morning stiffness. So is fatigue.

Uveitis and iritis (inflammation in the eyes) are also associated with SpA and Crohn's. That could account for the eye pain. Did you see an ophthalmologist or just an optometrist?

If you do have Spondyloarthritis, then usually a biologic would be used to treat it (usually Remicade or Humira).

But first, I'd recommend seeing a rheumatologist for a second opinion and figuring out what's going on. Usually they will do blood work (ESR and CRP, as well as for a gene HLA B27 associated with SpA), a clinical exam and imaging - either x-rays or an MRI or both.

X-rays don't show inflammation, just damage caused by inflammation and that can take 8-10 years to show up. So early in the disease, they are often negative. That is why an MRI is often needed.

Spondylitis.org has a lot of good info.

Hi sickincali,
Sorry to hear about your condition.
Reading through it some of your symptoms (chest pain, shortness of breath) made me think of two friends I have who had the same problems, and were diagnosed with sarcoidosis. One of them also have IBD symptoms with no diagnosis.
Did your ever do a Calcproctin test? (Stool sample) With active crohns this marker is sometimes elevated, and is used to positively diagnose CD.
Finally, you should try to change your diet to see if it helps. It takes a long time to see real improvment, at least a year, so a great deal of determination is required! The IBD-AID diet is a good place to start. Has helped me alot.
Most importantly, try to eliminate ALL dairy (also cheese, beef from dairy cows, and processed foods containing milk or cream). Recent research suggest the MAP bacteria can cause problems and dairy cows is a primary source of infection.
Also important is good sleep, a stress-free life and regular exercise. It helps the immune system.
Hope you will feel better.
/Ole

Second the rheumo who knows SpA

Ds has "mild" Crohns or early Crohns
But has far worse "extras"
His bloodwork is extremely normal
He does however have far worse JSpA

SpA can be an extra intestinal manifestation of Crohns with Crohns being the driving force
Or SpA can have an extra articular manifestation of Crohns where SpAis the driving force

Clinical, genetic, histopathologic and immunologic data suggest that SpA and CD probably should be considered as distinct phenotypes of a common immune-mediated inflammatory disease pathway rather than as separate disease entities[9].

Patients with peripheral arthritis and AS are often found to have endoscopic and histologic signs of small bowel inflammation, and a fraction of these patients go on to develop clinically overt CD. Moreover, some patients with SpA have a form of sub-clinical CD in which locomotor inflammation is the only clinical expression. In a prospective long-term study at first investigation about 6% of patients with SpA did not present any sign of CD, but demonstrated gut inflammation on biopsy. They developed CD 2 to 9 years later[32].

Ileal and colonic mucosal ulcerations in patients with SpA can be detected by endoscopy. Endoscopic lesions were found in 44% of patients with SpA versus 6% of patients with other inflammatory arthritis and the most common endoscopic diagnosis was early CD (26%)[5].

It has been highlighted that a capsule endoscopy can provide important information on upper gastrointestinal pathology in patients with SpA in which there is small bowel involvement. Eliakim et al[33] have compared the diagnostic yield of capsule endoscopy with that of ileo-colonoscopy in the finding of small bowel lesions in patients with SpA; significant small bowel findings (erythema, aphthous, erosions) were detected by capsule endoscopy in 30% and by ileo-colonoscopy in only 9% patients with SpA.

The association between SpA and clinical or subclinical intestinal association has rarely been described in children. Conti et al[34] investigated a group of 129 children for suspected IBD, 31 of whom had signs of axial and/or peripheral arthropathy, and after ileo-colonoscopy with biopsy, 7 children had classic IBD, 12 had indeterminate colitis, and 12 had lymphoid nodular hyperplasia of the distal ileum as the main feature. All were HLA-B27 negative. These patients may be a population at risk of developing a full IBD phenotype. SpA may be the initial manifestation of systemic disorders such as IBD.

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From

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686900/#!po=35.5769

Thanks everyone for the responses so far, I have read and appreciated all of them, it's nice to know that there is a community out there.

I'm trying to understand what would be the chances of a biologic like Humira or Remincade helping me, considering my CRP markers are always well within normal range. Why is is that some people can have active Crohn's and low CRP markers while others are through the roof? Is that just an unsolved mystery? And does Humira still help those people? Also, once my doctor gave me prednisone just to try - a short trial with a taper - but it didn't provide relief for my extraintestinal issues at the time, at least not right away. So given no CRP, mild Crohn's, and a failure on Prednisone, but still extraintestinal issues that severely affect quality of life, what are the chances of a biologic helping me?

Biologics are not a "catch all" right? e..g they don't help just everyone who has immunological-related problems. Specifically they help a certain kind of inflammation that is associated with a certain type of diseases, yes?

Thanks!

sickincali

There's no correlation between CRP levels and effectiveness of bioligics. CRP picks up inflammation all throughout the body so it can be elevated when the GI is fine. Many CD patients, on the other hand, can have high levels of inflammation in the GI yet a normal CRP.

A fecal calprotectin stool tests show if inflammation is present in the GI tract only. The inflammation can be caused by different things such as CD, over use of NSAIDs, bowel cancer. Bit this test is often used in CD patients after diagnosis if their CRP isn't a great indicator for the severity of active CD inflammation.

Biologics can treat different diseases but they are not a catch all. You would likely still need to see an ophthalmologist and rheumatologist regularly to determine if your issues were extra intestinal manifestations of CD and required more treatments than those offered for CD (some EIMs run concurrent with active CD inflammation while others run independent of CD flares).

It's best to see specialists in each area to determine what you are dealing with.

I think it is best to see a rheumatologist and ophthalmologist to figure out what is going on. If they are inflammatory issues (for example spondyloarthritis) then a biologic could help. But if it's muscular pain (not inflammatory), then you are right, a biologic won't help.

Some people have an elevated CRP and other people don't. Both my girls have SpA, but only one has an elevated CRP. The other one has had visible inflammation in her joints (pain, redness, swelling, inflammation visible on MRI) but a perfectly normal CRP.

Like Clash said, it varies. A Fecal Calprotectin is used to check if there is GI inflammation and for joint inflammation, the rheumatologist will examine your joints and may use imaging like MRIs/ultrasounds to pick up inflammation.

Maya142 said:

I think it is best to see a rheumatologist and ophthalmologist to figure out what is going on. If they are inflammatory issues (for example spondyloarthritis) then a biologic could help. But if it's muscular pain (not inflammatory), then you are right, a biologic won't help.

Some people have an elevated CRP and other people don't. Both my girls have SpA, but only one has an elevated CRP. The other one has had visible inflammation in her joints (pain, redness, swelling, inflammation visible on MRI) but a perfectly normal CRP.

Like Clash said, it varies. A Fecal Calprotectin is used to check if there is GI inflammation and for joint inflammation, the rheumatologist will examine your joints and may use imaging like MRIs/ultrasounds to pick up inflammation.

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Thanks Maya. I did see an opthamogolosit a few weeks ago. He checked the whole eye and only noticed irritation which he recommended hot compress for.

Last time I saw a rheumy was 3 years ago. At the time I was having bad back pain. They ran the whole work up and could find nothing wrong.

Also I have been tested for the genetic marker for spondylitis and it was negative.

You can have SpA without being HLA B27+. But if the rheumatologist has done a full work up, including imaging (MRIs), then it's possible these are unrelated issues.

One of your symptoms did catch my eye though:

One of my worse symptoms over the years which comes and goes has been a chest tightness. It feels like someone is grabbing me and squeezing me, the pressure is actually not in my abdomen but higher, where the two ribcages connect.

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Do you mean where your ribs connect to your sternum or where your ribs connect to the spine? Because that is a classic symptom of SpA - including the chest tightness and pain. Many people think it is a heart attack and often go to the ER to get checked out - it can be that painful.

If your scopes aren't clean, then you probably do need to step up to a stronger medication. You don't want inflammation to cause permanent damage to your bowel, requiring surgery. Whether that is Humira or 6MP is up to you and your GI.

Active Crohn's could certainly be causing the fatigue and joint pain. Arthralgia (joint pain without inflammation) can also be caused by Crohn's.

It might also be worth getting a second opinion from a different GI, if you are not sure what to do.

Normal Crp here
And Ds takes humira which controls his JSpA
Second seeing a rheumo to determine what may be going on

Hey I am a 52 year old female diagnosed 2013 however lived with symptoms for many years I have had three surgeries been and our the hospital over 20 times. crohns sucks! I am always fatigued, light headed, joint pain, itchiness basically same symptoms as you. I have tried to change my diet lactose, gluten, no soda, no high fructose switched from red meat to turkey and chicken but I still get flares anything can trigger. My doctor refuses to give me pain meds, so it really sucks when the pain kicks in, I am thinking of turning to marijuana for the pain.... any who that's my story living with crohns not easy at l





QUOTE=sickincali;978559]Hello everyone, I'm new to the forum so I'd like to introduce my story:

I'm a 40 year old male. I was first diagnosed with Crohn's disease at the age of 26 in 2003. Since then I've had 4 colonoscopies. Each scope, including the latest from last year, has shown scattered shallow erosions only in the terminal ileum and an otherwise healthy colon (though they did find diverticulosis). Luckily I've never needed any surgeries. One scope was so mild (this was after a run of Entocort) that my doctor said she thought it was unlikely that my irritable bowel symptoms -- average 5 loose stools per day and sometimes with urgency - could be attributed to the Crohn's.

Whether my Crohn's or irritable bowel is causing my loose stools and urgency is an open question. Irritable bowel, but not Crohn's, seems to run in my family, as both my father and sister have struggled with it. I have occasional cramps and urgency, and the 5 loose stools a day I understand is more than average (normal people have 1-2??). I get the BM usually shortly after a meal. It usually doesn't wake me up at night. I've also been lucky enough where what I eat doesn't seem to affect my condition, or at least I haven't noticed a correlation yet. I like to eat a lot of spicy foods.

I have been sick for a long time, but if you asked me to describe the worse symptoms, they wouldn't even be my GI issues. Going back to being a teenager, I've struggled with a whole syndrome of issues that vary in duration and intensity, going into remission and coming back later. During periods of remission in my life, I'm almost normal, with little health quirks here or there that are manageable. But during a flare, often not just one symptom but a cluster of symptoms will come back. In my most recent one, I have felt nauseous, with back pain and fatigue and cramping, all together. When I feel like this, it can be difficult to just get through the day.

One of my worse symptoms over the years which comes and goes has been a chest tightness. It feels like someone is grabbing me and squeezing me, the pressure is actually not in my abdomen but higher, where the two ribcages connect. It can be hard to get in a good breath, and it is usually accompanied by fatigue and irritability, and often back pain. I've had the workup of heart related issues (I also had palpitations so got that checked out), so I doubt it's related to the heart (though they did find a left bundle branch block). Again it will come and go mysteriously but it's quite uncomfortable, and it seems to get worse as the day goes on.

Other symptoms that I deal with include fatigue unalleviated by rest, back pain - sometimes intense - various joint pains (especially my wrists), eye pain and floaters (I had the eyes checked out but they were fine, but was diagnosed with irritation/inflammation of the eyelid and given steroid drops), low-grade chronic bronchitis (I have a steroid inhaler), hemorrhoids/anal fissures which I treat with hydrocortisone suppositories, nausea, and headaches. Sometimes I have just a general feeling of malaise and irritability accompanied by a light-headed feeling or "brain fog" and difficulty concentrating. I've had these symptoms going back to being a teenager, 6-8 years before I was diagnosed with Crohn's. They were the first presenting symptoms for me.

In terms of treating the Crohn's, I have been on Pentasa for the last 12 years, and on a few occasions, Entocort. I don't really notice much difference whether I take these drugs or not, in terms of my extra intestinal symptoms and even my bowel movements. Of course, you don't know how bad things would have been if you didn't take them. I stopped the Pentasa once and was fine for a few months, but then I had a weird episode of acute pain that might have been diverticulitis, I took antibiotics and it went away, but I went back on the Pentasa after that "just in case". Like others, I have read about the trials that have shown that Pentasa has little or maybe no efficacy for Crohn's and I wonder if it's really doing anything. At the very least it's definitely not helping with my chest pains or fatigue.

Over the years my medical syndrome has remained a mystery, and I continue to wonder how much can be explained by the Crohn's. Do I have an auto-immune disorder of which Crohn's is the symptom, or is Crohn's causing all thee other problems too? In the literature that I've read online, it seems many of my symptoms - fatigue, back pain, joint pain - can be caused by Crohn's. However, I've had a hard time getting my GI docs excited about it. For one thing they are used to treating the gut and are primarily concerned about that - and I appear to have a mild case of Crohn's. Another thing is that when they run the blood tests, my CRP markers (to check for inflammation) are always normal, showing no abnormal inflammation (although I've heard that's not always reliable?). My last GI doc told me that he doubts the other symptoms are related and I should check with my primary care doc -- why? Because if they were caused by crohn's, he says that I would have worse crohn's - my scope results would be worse, and inflammation markers would show a lot more activity. I've also been to 2 different rheumatologists and they've done a variety of blood work and found nothing unusual from the rheumatology perspective.

Because the Pentasa alone hasn't yielded a totally clean scope (they still see some active signs of Crohn's), several GI docs have floated the idea of stepping up and going on 6MP or Imuran, or even trying something like Humira with the new "top down approach" that some docs are trying these days. I have to be honest these drugs scare me. I don't like the idea of taking an expensive, heavy duty drug that requires injections, frequent blood monitoring, leaving myself more open to infections, and raising my chances of lymphoma or pancreatitis. However I'm sort of at my wits end, feeling crummy day after day, and at a point where I might want to try it, not so much for the Crohn's, but to see if it would help with all these other cluster of symptoms that I get from my mysterious syndrome.

I'm wondering if others in this forum have complained more about fatigue, back pain, chest tightness, light headedness, eye pain, joint pains, nausea, etc, than the bowel symptoms, and if they've have luck with helping these things by taking stronger Crohn's medications such as Humira or 6-MP? Or do you think it's likely that these things are unrelated and would not be helped by these medications? I suppose I could try and see, unfortunately it seems it's not that easy to "just try" a pill or 2, Humira requires 4 injections that last a month, and if you go off of it you might develop anti-bodies, and 6-MP could take 3 months to start working.

Any advice is much appreciated!

Thanks and hang in there everyone

-- sickincali

P.S. I also have anxiety and take klonopin for that as needed. It can make my condition worse but I don't believe it is the cause.[/QUOTE]

I am new to this forum, I was diagnosed 2013 but have been sick for far longer, I have had three surgeries I have been on remicade that didn't help, I was on humira but stopped because insurance issues so I couldn't continue now I had my first dose of stelera, how is it working for you?

=Tuff;978631]The chest pain could be Gastroesophageal reflux disease, or GERD. It is a digestive disorder that affects the lower esophageal sphincter, the ring of muscle between the esophagus and stomach. I get acid reflux, and the heartburn can feel like a heart attack, I even get pain in my back between the shoulder blades.
I used to have fatigue, nausea, brain fog. That all improved on the heavier drugs, Azathioprine, Remicade. I'm now on Stelara because of side effects. It could be worth a try to see if they would make you feel better. I hated dragging myself around, you don't realize how sick you've been until you start to feel good again.[/QUOTE]

I just started Stelara two weeks ago, and am tapering down from Prednisone, so can't tell if it is working yet or not. I suspect it will take a few weeks for it to take effect. Remicade worked great for three years, then I got peripheral neuropathy from it. I seem to react badly to all drugs, but so far no side effects from Stelara.

Could have written this myself. Aside from the shortness/tightness of breath I experience the exact same symptoms. I got diagnosed with cd at the age of 11 after multiple tests & 3 years of agony. Had surgery at 17 then had 20 years remission. 18 months ago I noticed my joints were starting to get real sore, hands, wrists, feet, knees, back. Saw rheumatologist who said I have fibromyalgia & sent me on my way with ibroprofen (I know with CD!). Well that didn't help so stuck me on morphine patches & oramorph. Then my tummy started hurting. Normal bloods (crp esr etc) but a slightly raised FC of around 130 so put me on steroids. Seemed to help then started imuran. Was going ok til got the norovirus at xmas & things just spiralled downhill from there. Gastro said I had bile salt malabsorption & put me on binders. They refused to start me on steroids again so between xmas & April i deteriorated tenfold, but still normal CRP. Colonoscopy in April was normal but come Easter was in agony with major D (15+ a day). So was admitted to hospital. FC was now over 600 but bloods normal except now imuran had damaged my liver so they had to stop that. Back on steroids again & on taper ended up in hospital yet again. Now down to 20mg & starting to struggle. I'm having a pill capsule tomorrow as Drs won't start me on anything else til they can find "proof" of CD & inflammation! Drives me mad as I'm so sick, but cos MRI was normal they won't have it (despite the FC being over 600 & reducing currently on the steroids to 420) I finish the pred in 3 wks & am dreading it as will then be off everything?!?! I've had steroid injections in multiple joints & now my eyes are sore & eye sight is getting worse. Really need to see an optician but right now it's picking my battles... This disease is vile & is never by the book & it sounds to me that all your other symptoms are all inter related & stronger meds should be considered.... Good luck