So is it CROHN'S?!????

[David in Seattle]

I am a 51 year old male. Although my general health has not been good since my early 20's (I was diagnosed with "fibromyalgia" when I was 25), I have never really had any chronic GI troubles until recently. Approximately 14 months ago, quite suddenly, I developed chronic digestive pain. Although there is some variability to the symptoms, 3 stand out: pain centered around the navel, generally beginning 2.5 hours after eating a meal, variable pain in the lower right hand side of the abdomen which feels a bit like the "catch" you may have gotten in your side as a kid when you ran on the playground too much, which can be intensified with pressure like an internal sore spot, and a feeling in the rectum after defecating which feels a bit like the area has been moderately traumatized or distended, and which sometimes is made worse by sitting. I also have GERD, and have been on acid blockers for about 9 years, Omeprazole for the 1st 8 of them, Ranitidine since. I am not overweight. I have been to 3 gastroenterologists and have had extensive testing, including a colonoscopy, esophageal endoscopy (both "normal"), numerous blood tests, and a capsule endoscopy. Long story short, the only abnormal results have been mild steatorrhea (fat in the stool), and from the capsule endoscopy "multiple areas of erosion and erythema were seen in the proximal small bowel, with a few scattered in the mid and distal small bowel. A small ileal ulcer was also noted". No firm diagnosis, but the last doc (this past Thursday) is leaning toward some variation of IBD & has put me on Pentasa, 1000 mg 2x/day, which so far has only managed to give me headaches & ringing in the ears. I also take codeine from a previous GI doc. Bowel movements went suddenly from a normal 1 each morning, to 2 or 3 a day. They are not really diarrhea, the codeine may be keeping that at bay. Stools are very light in color, about like cookie dough for lack of a better description, and about half of them float. For the last 2 months, I've tried eliminating all gluten, there has been no real improvement. This condition has just about destroyed my life. 5 months ago, my lovely wife abandoned me as a result of it. She actually just called me from the airport saying she was leaving. If anyone can give me ANY helpful input after reading the above, I would very much appreciate it.

Here's a list of recent test results, but again the only ones which are abnormal so far is fecal fat slightly elevated & the capsule endoscopy.

Complete blood count (normal)
Complete metabolic panel (normal)
Sedimentation rate (normal twice)
Thyroid stimulating hormone (normal)
Cyclospora (negative twice)
Crytosporidium (negative)
Ova & parasite (negative twice)
Hepatic function panel (normal)
C Reactive protein (normal)
CT scan of abdomen and pelvis w/contrast medium (normal)
Creatinine (normal twice)
Tissue transglutaminase antibody, iga (Normal)
Fecal fat stain (increased twice)
Fecal fat quatitative (increase, 5.4g in 24 hours w/a normal max of 5.0)
Colonoscopy/esophageal endoscopy (normal, including one small bowel biopsy w/no sign of villious blunting)
C. difficle (negative)
Giardia antigen (negative)
Stool salmonella shigella campylobacter (negative)
CBD w/platlet differentiation (normal)
BUN (normal)
Electrolytes (normal)
IBD Serology:

Component Your Value Standard Range Flag
IBD PREDICTION Pattern Not Consistent with IBD
ASCA IGA ELISA LESS THAN 12.0 0-20.0 EU/ml
ASCA IGG ELISA LESS THAN 12.0 0-40.0 EU/ml
ANTI-OMPC IGA ELISA 2.2 0-16.5 EU/ml
ANTI-CBIR1 ELISA 5.1 0-21.0 EU/ML
NEUTROPHIL AUTOANTIBODY ELISA LESS THAN 12.1 0-12.1 EU/ml
IFA PERINUCLEAR PATTERN Not Detected
DNASE SENSITIVITY Not Detected



Sorry for the long post, and thanks group for your time.


David

 

[GoJohnnyGo]

Hey David, I'm about your age and can relate. Sorry to hear all this is happening to you.

I really can't give you a medical opinion, but thought I'd let you know this a great forum to vent in until you get your issues sorted out.

In the meantime, welcome.

 

[mwb3779]

Hey David. I'm not sure what you have other than a problem. When they did the colonoscopy did they take any biopsies? If so, what were the results of them. I will tell you this, it took me 7 doctors to get my dx. And I didn't even know what it was when they told me. Good luck to you and welcome to the forum.

 

[Crohn's 35]

Hi David, welcome to the forum and I am so sorry your wife has decided to go her own way. I can't even fathom what you are going through and my heart goes out to you. You do have alot of issues, health wise and it is frustrating for each and everyone of us, let alone someone who is thinking in their heads "what is wrong with him/her now". I had to fight for a year of diagnosis and it was because I was out of the norm for "IBD" and all in my head. I would seek another opinion if it is possible. Or exploratory surgery, or the Endoscopy from mouth (nose actually) to the bowels with a barium follow thru. It was my diagnosis but I had to go to a different specialist and hospital. I lost 40 lbs and was so sick. Sorry we can't help too much there are others here that may help more. Sorry are going through this at such a later time in your life. Keep us posted.

 

[RogerDoger]

I've got symptoms similar to yours and am playing the waiting game as well. Besides the gluten-free diet, you might want to avoid foods which are known to trigger Crohn's flareups. That's what I've done and I'm feeling somewhat better. I started quality multivitamins (I use New Chapter), good cod liver oil, Vitamin D, and juicing too. Something seems to be working.

Sorry about you wife; you're more generous with the word 'lovely' than I would be. You might want to look into a local support group of some kind; it's a great way to meet people!

If you have the money, I would go organic as much as possible in order to avoid genetically modified foods. I don't mind paying twice as much for local free range meats because they're more nutritious!
I'm a bit of a rebel, so it pleases me to pay more for food if it sticks it to "the man". Cattle fed grass, their God-intended food, instead of corn, are much healthier and happier. We need to get back to basics, foodwise. Processed corporate foods are killing us. I can't believe the people who have digestive disorders and continue to eat badly.

Learning to cook from scratch is good, too. Less manmade food from a box or can or fast food joint!

My mind is also open to MJ therapy!

 

[InkyStinky]

Hi David,

Wow, I'm sorry you are going through all of this. Like others have said, IBD tends to take a long time to diagnose. I don't remember exactly how I got my diagnosis - I was 8 and really sick. Anyway, I do remember I was in the hospital and it was a travelling physician who recognized that I had IBD.

The pain you are experiencing on your lower right side sounds a lot like what I have when my Crohn's is flaring. Like mwb3779, I'd be interested to know if you had any biopsies of your colon. Also, does your most recent GI specialize in IBD?

 

[phdezra]

This is my first posting, and I have yet to properly introduce myself (which I will do shortly in a different post), but I will add my quick two cents:

From all I have read online and offline, it sounds like you have "some kind of Crohn's/IBD". Perhaps that sounds kinda of vague, but from my research, it seems clear that none of this is, uhm, so clear. Meaning, different foods affect us all in different ways, and we might feel the pain differently. Some of us have very obvious CRohn's and the condition is markedly worse, but in many of us (though not the majority on here) the condition comes and goes, and it's not *SO* bad, yet it's more than normal.

As InkyStinky commented though, and I will add too, I also have pain in my lower right hand side during a flare up. Whether or not I have full blown Crohn's as diagnosed by an MD doesn't really matter to me yet, but the fact that certain foods trigger this lower righthand side discomfort is a clear warning bell. My GI MD commented that lower right hand side is very often a sign of some kind of Crohn's.

That said, bear in mind that while your various tests look normal (mostly), there could be a few 'trigger' foods that your specific gut HATES.

HTH.

Ezra

 

[wolfem]

Hey David. Sounds like you might have crohn's. I had similar symptoms and had previously been on ranitidine for stomach and duodenal ulcers for 5 months. Later I started having pain and distention in the lower right area. I didn't have diahrrea but my stools were fatty and yellow. Fatty and yellow usually indicates a malabsorption problem.

Mary

 

[wolfem]

David, I forgot to mention that I was having pain around the navel area when I was put on ranitidine. The pain would last but maybe 10 seconds and it felt like someone punched me. It was always after I ate. I was diagnosed with gastritis.
However, as I mentioned before, 5 months later is when the vomiting, stabbing pain, and fever occurred. Then I was diagnosed with crohn's.

Mary

 

[Crohn's 35]

This is my first posting, and I have yet to properly introduce myself (which I will do shortly in a different post), but I will add my quick two cents:

From all I have read online and offline, it sounds like you have "some kind of Crohn's/IBD". Perhaps that sounds kinda of vague, but from my research, it seems clear that none of this is, uhm, so clear. Meaning, different foods affect us all in different ways, and we might feel the pain differently. Some of us have very obvious CRohn's and the condition is markedly worse, but in many of us (though not the majority on here) the condition comes and goes, and it's not *SO* bad, yet it's more than normal.

As InkyStinky commented though, and I will add too, I also have pain in my lower right hand side during a flare up. Whether or not I have full blown Crohn's as diagnosed by an MD doesn't really matter to me yet, but the fact that certain foods trigger this lower righthand side discomfort is a clear warning bell. My GI MD commented that lower right hand side is very often a sign of some kind of Crohn's.

That said, bear in mind that while your various tests look normal (mostly), there could be a few 'trigger' foods that your specific gut HATES.

HTH.



Ezra

Welcome, I would think perhaps you should post your story.

 

[David in Seattle]

Thanks all for your supportive replies. This seems like a very nice group, I appreciate the welcome & I'm glad I found you guys.

David

 

[imisspopcorn]

:welcome: David.....Have you had any gallbladder studies done? The fat in the stool is what made me suggest having such a test.....I am really sorry to hear about your wife leaving. I really hope you can get things sorted out.

 

[David in Seattle]

:welcome: David.....Have you had any gallbladder studies done? The fat in the stool is what made me suggest having such a test.....I am really sorry to hear about your wife leaving. I really hope you can get things sorted out.

No, I think they've skipped the gallbladder because the pain isn't up that high, though it may be worth looking into. Thanks for the reply and I MISS POPCORN TOO!!! Used to make it with a special butter I made with parmesan cheese, tobasco sauce & curry powder. That would KILL ME now!!!

 

[fenway1971]

Hi David -
Was reading your IBD study posts and thought I'd give you an official welcome. First, appreciate all the new info you posted. Like you, I immersed myself in studying this disease. It's fascinating stuff and a good coping mechanism.

This forum has outstanding info whether or not you have Crohns. Great diet tips (cutting out corn-related products and back on wheat/sugar helped me) and alternative treatments (vitamin D and turmeric supps have helped me too).

Really sorry about your wife. Candidly, I went through sort of the same thing when I was first diagnosed. Thought not immediate, I'm sure my diagnosis and fatigue, etc. led to the end of my marriage. It sucks...but you'll pull through.

 

[pb4]

Seems you have enough small intestinal stuff going on to indicate CD over ulcerative colitis (which affects the colon/rectom area only)...a colonoscopy would show the type of inflammation you have, with CD there is skipped patterns of inflammation (healthy tissues in between inflamed) with UC the entire area is inflammed with no skipped patterns (or patches of inflammation).

My CD was DX very easily, many are harder to DX but often that may be due to a less competent GI, and when the signs aren't completely clear that can make for a harder DX as well. Pentasa aids with CD (for those that can tolerate it, unlike myself) since it helps both the small and large bowels (CD can affect the entire GI tract from mouth to anus).

Sorry about how horrible your wife was leaving you that way, the way she did it was really cold on her part and pretty nasty, hate to say it but if that's how she handled it, then she's not worth keeping around and you're clearly better off without someone like that in your life, if that's how she is, if she'd have stuck around she probably would have caused you more stress.

I hope you're able to get a confirmed DX soon, makes it a little easier to deal with when you know for sure what you're dealing with right.

Do lots of research, knowledge is power.

 

[mussen]

Hi david,
Sorry to hear you are going thru some tough times!

I wonder if there are links between IBD and fibromyalgia?
Reading your post reminded me of a friend of my mother. She had been struggling with a lot of different symptoms (sorry don't have details) including a lot of pain in the lower right side. A few years later after all the usual tests and trying to get some answers and she was told she had an IBD.
I not sure of all the details in between like treatment she had etc, but she was refered to a pain management clinic where they diagnosed her with fibromyalgia not IBD. She underwent some pain treatment and is doing better, her gastro symptoms have improved.

I hope you get some answers soon!!
Stay strong

 

[MacJr]

I'm on my fourth doc through all this. whoop! going to the new one tomorrow. i was originally told a year ago that all the symptoms was stress, IBS, and just being a woman. Did the docs ever think that being sick and getting worse can cause stress? haha. Blood, fevers and vomiting do not consitute as IBS, so I'm giving it another try with a different doc. Fingers are crossed.

 

[David in Seattle]

Did the docs ever think that being sick and getting worse can cause stress? haha.

Yes, that old Chicken/Egg logic always seems to escape them. "You're sick because you're DEPRESSED". Noooooo, IT'S THE OTHER WAY AROOOOOOOUNNNND!!!!!

OBVIOUSLY!!!!!!!!!!!!!!!

 

[Astra]

Hi David

Not had chance to give you a big hello and welcome
hope you are ok?

 

[David in Seattle]

Hi David

Not had chance to give you a big hello and welcome
hope you are ok?

Thanks for the welcome. Good days and bad, you know. If I only had the condition (which in my case so far is WAY less than a lot of you guys are dealing with) it would be a lot easier. Oh well. Good to have someplace to whine, anyway!

 

[Phartologist]

Sorry for your pains!

Your condition is interesting in that the Docs have not done a CD biopsy which is very definitive. The SBFT test will pinpoint the CD if it is there. Also interesting is the very low dose of Pentasa you are on. I take 4500mg daily and 3 doses of 1500mg each. Also, 6MP [mercaptapurine] is a standard starting point along with Pentasa... also, have your doc check your testosterone levels....good luck

 

[D Bergy]

Hello David,

I am curious as to what your symptoms were prior to your GI problems? Specifically from the Fibromyalgia.

Dan

 

[David in Seattle]

Hello David,

I am curious as to what your symptoms were prior to your GI problems? Specifically from the Fibromyalgia.

Dan

Dan - The best way I have ever found to describe it to someone who has never experienced it is to say I basically feel like I have the flu all the time. Not the respiratory part, just the "aching all over" portion. I first went to a rheumatologist and got the FMS diagnosis when I was about 26, after having the condition for around 4 years. I had it "confirmed" by another rheumo about 2 weeks ago, the 1st time I'd been to see anyone about it in several decades. Still no treatment, of course. I guess there must not be enough profit potential in it. I mean, it afflicts a lot of people, but it's NO VIAGRA in terms of marketability, after all. I'm not sure if there even is one finite disorder under this title, or if it's just another of those wastebasket diagnoses they like for anything they don't totally understand, a bit like IBS. Suffice it to say I feel pretty lousy just about all the time, and other than opioids, nothing really eliminates it to any real degree.

 

[David in Seattle]

Your condition is interesting in that the Docs have not done a CD biopsy which is very definitive. The SBFT test will pinpoint the CD if it is there. Also interesting is the very low dose of Pentasa you are on. I take 4500mg daily and 3 doses of 1500mg each. Also, 6MP [mercaptapurine] is a standard starting point along with Pentasa... also, have your doc check your testosterone levels....good luck

Well the 1st GI guy did a colonoscopy & an esophageal endoscopy with a biopsy. He found nothing in the colon, no sprue in the .01% of the small bowel that was biopsied, & ascribed it to that "irritable bowel syndrome" red herring. 2nd & 3rd guy are leaning towards CD, but both admit without any real basis.

I only took the Pentasa 3 times. It just made me too sick. Taking a very low dose of Pred now, 10mg, seems to help, but of course, it's just delivers another list of less obvious adverse effects.

 

[Phartologist]

CD Biopsies

Since CD is a localized disease which forms in either a continuous inflamed area or discrete pockets the doc should take a series of biopsies along small and large bowel. The biopsies will yield CD inflammation if in fact CD is present. The Pentasa should be continued and built up gradually. Pentasa is a form to topical anti inflammatory and is not really absorbed into the blood stream **** the typical NSAID. While my doc does not agree with me, when I had my testosterone checked it was quite low. Testosterone injections put my CD almost into remission!:voodoo:oo::ylol2: