Possible Crohn's? Or something else?

[Lemon]

Hi all,

I've been lurking around on this forum for the past couple of months and figured I may as well put myself out there and see if any of the symptoms I have sound familiar to anyone. I'll go through it as quickly as I can but it's lonnnnnnnnnng...I'll put the most important stuff in bold for anyone skimming:

Quick vitals/info:
- 32 years old, male
- dairy allergy since I was born (no need to worry about removing that from my diet)
- terrible terrible immune system (see above, plus I tend to be very susceptible to growths like lipomas, canker sores, and warts)
- three courses of Accutane (the last one was quite large back in 2003-4)

Okay, so I've been dealing with various issues ever since a trip I took to China in May 2011. Over the trip, I got sick (pretty sure it was allergic reaction to the air) and then did something really stupid and took various medications I bought in stores over there, including a version of a antibiotic "Z-pack". My symptoms went away around the time I came back to the US.

Then around 1.5 months later in July, I started having horrible abdominal bloating + urgency/tenesmus, etc... especially after eating. Also there would be periods where I wouldn't be able to go for 2-3 days. GP had me do a cat scan to check for appendicitis or something and ended up seeing some mild inflammation of the rectosigmoid colon. Saw a GI (and also a colorectal doc who I was seeing occasionally for periodic other, wonderful reasons involving HPV in 2009-2010 which we won't get into here) and after suspecting that maybe some kind of bug got into my system when all the good and bad bacteria were killed by the Chinese Z-pack, they put me on some heavy stuff (I believe levaquin and metronidazole). Not sure if it helped, but I can say for sure that the metronidazole destroyed me (panic attacks, shortness of breath) and it was the first medication I've ever had to stop because the side effects were too bad.

As August wore on, GI had me do a colonoscopy and again saw the mild inflammation in rectosigmoid region and ALSO some mild inflammation in terminal illium. My symptoms were starting to get a bit better, and I thought maybe it was just some kind of nasty infection I had but that would be the end of it? :shifty-t:

It finally subsided almost entirely by end of August, and I was back on my merry way until around I started getting itching/pain in rectal area. Go back in to CR surgeon, and I have an anal fissure. Tried conservative treatment (analpram, then this other compound cream) for months. Finally schedule surgery for January but at the last minute get another check and it had healed on it's own. (Some background info...I have also had 3 internal hemorrhoid bandings plus condoloma removals over 2010-2011...so the inside of my butt is already a warzone)

Finally...even though the fissure healed on it's own, as of late October, I started getting some symptoms again: the urgency to go even with nothing there (and the "fullness" that comes with it), pressure/tightness around the rectum but also on either side of the anus (it's hard to explain...it's in the perenium and also each buttock on both sides, but inside...feels like bloating maybe?), gurgling like it's digesting but in my bottom, and then just general exhaustion. I did not and still have not had any diarrhea at all, maybe very occasional constipation like the 2-3 day thing which happens sometimes. But no blood in stool (maybe a tiny bit of mucus?), no diarrhea (mostly normal BMs overall in fact), and (unlike last time) not really too much abdominal bloating. Went back into the GI in January, he had me do a CT Endography, saw the same inflammation as before (still "mild", he says), and as of 2 weeks ago he put me on Asacol (3 pills, twice a day) to see what happens.

If anything, it seems like things are getting worse over the past couple of weeks. From November - now, I would go through this for 3-5 days and it would subside for a week or sometimes two, but recently it's only kinda gone away for a couple days max before returning with a vengeance. I don't think it's related to any certain foods, since I ate a meal one night for dinner, was fine, and then had leftovers of the exact same meal for lunch, and was in bad shape 20 minutes later. The only way I've found to make things calm down is to just not eat at all.

So questions for everyone: :sign0085:
- Does this sound like Chron's? I think GI may suspect it, even though he said terminal illium inflammation was mild...he said it could be in early stages. Is starting out with this dose of Asacol the best way to go and how long until I know if it's working at all?
- Could it maybe be the post-infectious IBS as described here? That is, could IBS lead to mild inflammation in the colon?
- I'm wondering if my history (bad immune system, Accutane when I was in college and grad school) make me a "good" candidate for Chron's?
- Do any of these symptoms sound familiar to anyone?


Thanks in advance to everyone...this forum is a great resource for us confused newbies.

 

[Angrybird]

Hello Lemon and welcome to the forum :bigwave: It certainly could be crohns, I have seen mention of a some of your symptoms mentioned by others here (not all crohnies get diahrroea). I would say though that you perhaps need to go back to the doc if you are actually feeling worse as perhaps the Asacol dosage needs to be increased, I do not have any experience with this drug personally so check out our treatment forum as there should be some more info about this.

I hope you feel better soon and are able to get a definative diagnosis.

 

[mikeyarmo]

Welcome to the forum Lemon!

Thanks for the sharing your story with us and I am glad the forum has been helpful for you so far.

As Angrybird said, your symptoms sound like they could be Crohn's. Constipation occurs in some sufferers (including me) and actual evidence of inflammation is more common in an IBD diagnosis than IBS.

Your repeated use of Accutane is also a risk factor. There have been lawsuits against Accutane by people who have been diagnosed with Crohn's Disease and Ulcerative Colitis as taking the drug seemed to increase the risk of being diagnosed with either forms of IBD. You can find some more information on the forum about the link between Accutane and increased risk of IBD.

 

[Lemon]

Thanks for the replies!

Re: Accutane, yeah, I'd heard about the lawsuits, though I didn't know if taking it way back in 2004 (though it was a major course of it, and my 3rd time on the drug) would qualify as a direct link to Crohn's if it was so long ago? It did clear up my acne at least, but ugh what a price to pay.

Re: Constipation w/Crohn's , I'm currently going through a nasty one of those 2-3 day things I mentioned where it feels like a 20-car pileup in my bottom, but nothing comes out. Last time this happened (around a month ago), I took some Milk of Magnesia and that led to some D but didn't really do much for the feeling overall. It's like things are getting stuck somewhere in my intestines, but when it finally lets loose, it's not really big or hard like I would think C would be...it just took its sweet time. I'll take this + the Asacol questions to the treatment forum...I may be spending a lot of time on there over the next year...

 

[dannysmom]

Hi and welcome. You story sounds a little similar to my son's. He also had a prophalyctic antobiotic (his brother had meningitis) just a few months before getting ill and I wonder if that sort of laid the ground work for what was to come. Danny also was sick a lot as a young child, has asthma & dairy allergy. My son is still undiagnosed as his inflammation is non-specific and mostly mild. Good luck. I hope the asacol helps somewhat.

 

[Lemon]

Hello again. Still dealing with the issue, though it wanes and waxes (currently on the upswing, unfortunately). Saw GI #2 and he thinks it's IBS PI due to the China trip, and a.) put me on a small dose of tricyclic antidepressants for the tenesmus/pain in my bottom (he says it will serve a "nerve block" & b.) is having me do some kind of hydrogen breath test to look for bacterial overgrowth in my small intestine. He dismissed the minor inflammation/irritation on my colonoscopy/CT scans as not being conclusive enough for something like Crohn's. I'm going to keep the Asacol going just in case, but also try to hone closely to the low-FODMAP diet and just see what happens.

 

[Angrybird]

Thanks for the update Lemon. Sorry that you are no further forward with a diagnosis I do wonder if the test they are now doing also looks at bile salt absorbtion, if not perhaps ask about this. I do know if you have an issue with this the symptoms can be similar to what you experience with IBS/IBD.

Let us know how you get on xx

 

[David]

Greetings and welcome.

When the colonoscopy was performed, were biopsies taken? If so, what were the results?

What sorts of blood tests have you had done and were any abnormal? Any tests like fecal calprotectin?

I wish you well, please keep us updated.

 

[Lemon]

Greetings and welcome.

When the colonoscopy was performed, were biopsies taken? If so, what were the results?

What sorts of blood tests have you had done and were any abnormal? Any tests like fecal calprotectin?

I wish you well, please keep us updated.

It was back in July 2011, but IIRC yes they did a biopsy and didn't find anything. The only other tests I remember having were for celiac's disease (negative) and some kind of "IBD" test on a stool sample (I should ask the first GI). Could that be the fecal calprotectin test?

The more and more I deal with this, I'm thinking it is indeed IBS PI/SIBO, especially as my mother was diagnosed with it a couple years back, though her symptoms were just D (which I have none of). Originally they thought she had Crohn's as well... I wonder if this runs in families?

 

[Mark74]

Does not sound like ibs does sound like crohns.
Accutane. I took in 2001 was dx nov 2002 with crohns in the illum. Had colonscopy and upper scope in 2002 with no signs of anything. Dx was ibs.
I was told you don't have inflammation our bandage to digestive system in ibs only ibd.
If gi keeps saying ibs would seek another opinion.
What does colon doctorsay

 

[David]

That's good that the biopsy was negative. I am covered in lipomas and have lymphocytic colitis and I've read of anecdotal correlation so I'm glad you don't have that.

Yes, that was probably the fecal calprotectin test.

Was your mom diagnosed via a hydrogen breath test? You may want to point her in the direction of the Specific Carbohydrate Diet if she has SIBO. It's perfect for it.

If you end up getting another colonoscopy, I'd ask them to stain for mast cells to rule out Mastocytic Enterocolitis. Or they could just start you on a couple antihistamines to see if that helps your symptoms.

 

[Catherine]

Ibs runs in my family. My 16 year old was dx with crohn's in January. I have dx of ibs. We did the FODMAP diet, I improved and Sarah got worse.

 

[Lemon]

Mark: Well, the second GI said IBS/SIBO based on symptoms, and I'm certainly willing to believe that if my symptoms are primarily urgency + bloating & pain (though in bottom more than abdomen) caused by "visceral hypersensitivity", and not really any D at all. I read here that there is sometimes inflammation seen with IBS PI, and if I think back to it, I've had some minor bloating issues for the past few years ever since a horrible bout of food poisoning in Peru in 2007 (nothing like now, but even so...) Maybe things just got worse and worse as the bacteria built up? And there is the Accutane thing, but who knows... The colonoscopy doc (GI #1) didn't necessarily think it was Crohn's and only put me on Asacol months later when symptoms flared up again and he couldn't think of anything else.

David: Yes, mom was diagnosed via HBT. Right now she's actually doing pretty well now because she's on a regular dose of something called domperidone, which has an "off-label" side effect of increasing motility. Before that she would go on antibiotics, get better for a while, and then relapse so that every time she ate there'd be D. Not sure if that's the route I'll go on but I guess we'll see what the test says.

Catherine: Makes sense, yeah. So do you still do the FODMAP diet regularly? I read that one possible "solution" is to do strict FODMAP for a couple weeks and if symptoms go away, continue for another 4 weeks or so (to let bad bacteria go away), and then slowly introduce the "bad" foods back in one at a time to see if you can handle them (or some of them at least, that's my hope). Of course, if my symptoms don't go away in the first couple weeks it may be back to the drawing board.

 

[Catherine]

Lemon, l do some of diet, I don't have milk anymore it gives me heartburn. I'm not feeling best but I think a lot of that is cause by worry over my daughter.

Main things to avoid with this diet are lactose, wheat, rye, onion, garlic,apple and pear.

The one thing sarah found was milk makes her sick.

What are the names of the breath tests you are having?

Catherine

 

[Lemon]

Lemon, l do some of diet, I don't have milk anymore it gives me heartburn. I'm not feeling best but I think a lot of that is cause by worry over my daughter.

Main things to avoid with this diet are lactose, wheat, rye, onion, garlic,apple and pear.

The one thing sarah found was milk makes her sick.

What are the names of the breath tests you are having?

Catherine

I'm guessing it will either be the Hydrogen Breath Test with lactulose or maybe with glucose, whatever the standard is now. Something like what is described in http://en.wikipedia.org/wiki/Hydrogen_breath_test

Before I read about FODMAP over the past week, I had spaghetti w/garlic bread (what in both pasta and bread, and onions and garlic in sauce and garlic on bread!! aaaa) and suffered mightly afterwards. Giving up wheat would be really hard for me (on a permanent basis anyway), since I am already straight up allergic to all dairy products (diagnosed back in 1979 when I was born, so I'm used to it at least). But I'm willing to at least give it a try in the meantime.

Hope everything goes well with your daughter. As nasty as I feel now, I think it would be even worse to know that someone I cared about was feeling this way.

 

[Catherine]

The FODMAP diet is not a no wheat diet, just a very low wheat diet. So mainly no normal pasta or bread. Traces of wheat are ok.

But they advice no onion at all for 3-6 months, this includes traces on onion.

There are five breath tests done in Australia. Lactulose (control test), Fructose, Lactose, Glucose and Sortibol.

Sarah has lactulose, fructose and lactose.

She was only boardline for fructose but test higher on lactose than on the control test (lactulose).

Catherine.

 

[GFinDC]

Hi Lemon,

I saw you were tested for celiac and the results were negative? I hang out on a celiac forum mostly and our standard advice to people is to go ahead and try the gluten free diet, even if the tests are negative. We say that because the tests they have now are not 100% perfect, black and white answers. Positive results are pretty darn always accurate, but negative results are less reliable. So the best option is to go ahead and do the GF diet for about 3 months and see if your body responds. Your body is a better test instrument is some ways and will let you know if gluten is a problem. Gluten is in wheat, rye and barley but oats bother some celiacs also.

If your GI did an endoscopy he should have taken biopsies and checked them for villi damage. But in early celiac there isn't a lot to see on biopsies either.

 

[Lemon]

GFinDC - I've heard that the celiac tests are pretty notoriously unreliable about false negatives, yes. I've been on the FODMAP diet (which is basically GF among other things) for the past few days and haven't really noticed much of a difference (except for the horrible pains after the onions/garlic a few days back). Mainly it seems to get worse (the tightness/bloating) when I eat more than a very small amount, but of anything. That would seem to fit with the IBS/SIBO diagnosis, but the silly docs couldn't get their act together so I won't have the HB test until next week (and I'll find out which kind of variety of test they end up doing). In the meantime I'll try to eat small amounts on the FODMAP diet.

I wonder if you can test positive for SIBO and also have early signs of Crohn's? My guess is probably yes (though I'm not saying that's my situation...just thinking out loud).