So I actually do have Crohns!

[nycguy101]

So, I'm 24 and just was diagnosed by capsule endoscopy last week. This all started basically because I was getting morbid hangovers from drinking. I would feel fine the next day until mid afternoon, only to be hit with a high fever, vomiting everything including water, and extreme fatigue for the next 24-48 hours. One day, the abdominal discomfort didnt go away and I got stuck with chronic constipation that cleared itself up after a month. Fast forward a year later, and suddenly the constipation returns and doesn't go away, and I'm left with constant bloating and general discomfort, so I went to a doctor and started this whole process.


I passed every single test except a capsule endoscopy without a hint of problems:

Total blood test
Crohns anti bodies
Colonoscopy
Upper Endoscopy
Sonogram
Barium x-ray
CT Enterography

All came up negative. No signs of inflammation, lesions, nothing.

Until the capsule endoscopy came back showing lesions in my jejunum. I'll be going for a biopsy asap to make sure nothing is cancerous.

I actually managed to take care of about 60% of the symptoms with a daily morning dose of Miralax, citrucel, and a probiotic (align).

So, now I'm on Pentasa (2g per day) for my second day and I actually feel worse. Some of the bloating and slow digestion seems to have returned because of these pills. Also, I dont like the kind of hazy feeling I get form it like I'm taking a big dose of tylenol or something.

Im hoping that level of severity I have would be a perfect candidate for being resolved with pentasa (No bleeding, no obstruction, heck, it didnt even show on a CT enterography)

Any idea when these things are going to kick in and I can actually look forward to having no symptoms at all?

 

[Dexky]

Hi nycguy, there are others on here who also deal with constipation rather than diarrhea. Depending on the severity, I would imagine either could be very problematic. I don't know anything about pentasa but someone will be here soon with advice for you. Glad you are here and welcome.

 

[Rebecca85]

Mark- pentasa is the same medicine as ej's asacol, it just targets a different area of the bowel.

Nycguy- the makers of pentasa claim it can take up to 6 weeks to fully work, but you should start noticing a difference within 3 days to 3 weeks. So hang in there and you should start noticing improvements soon. As for the hazy feeling, I have never experienced this with pentasa. Are you taking your tablets with food? I find there are usually less side effects if you take tablets with food.

 

[Astra]

Hiya nycguy

as we know inflammation causes strictures (scarring) and these cause narrowing in the bowel which can result in constipation. conflicting advice tells us to eat a high fibre diet to combat the big C, not so with Crohns! A low residue diet can help with this, by giving your bowels a rest.
Pentasa is my maintenance med and I've been taking it for 5 years now with no problems. I've had nearly 5 years of remission too!
give it time to kick in, all meds give us a disorientated side effect til the body adjusts.
hang on in there bud
xxx

 

[nycguy101]

Thanks for the support everyone!

Hiya nycguy

as we know inflammation causes strictures (scarring) and these cause narrowing in the bowel which can result in constipation. conflicting advice tells us to eat a high fibre diet to combat the big C, not so with Crohns! A low residue diet can help with this, by giving your bowels a rest.

This is actually something I've been wondering about. If the CT enterography showed no signs of inflammation or stricture, and the capsule endoscopy only showed about 4-5 lesions in the wall of the jejunum, wouldnt that mean that there is no narrowing of the small intestine? If there's no narrowing then why do I have constipation? This is all very confusing.

 

[Rebecca85]

If you have no narrowing or strictures, maybe you can slowly increase the amount of fibre to try to ease your constipation (though check with your doctor first!). Maybe you are constipated because things are moving slower, thus more water is lost from your stool making it harder and slower moving, so it's a vicious circle.

How much fluid do you drink in a day? I know people on here have said drinking more than normal gives them d- maybe you could get a normal stool by drinking more.

 

[nycguy101]

If you have no narrowing or strictures, maybe you can slowly increase the amount of fibre to try to ease your constipation (though check with your doctor first!). Maybe you are constipated because things are moving slower, thus more water is lost from your stool making it harder and slower moving, so it's a vicious circle.

How much fluid do you drink in a day? I know people on here have said drinking more than normal gives them d- maybe you could get a normal stool by drinking more.

I actually drink about twice the normal amount of water per day. When I was a fat kid, I started drinking alot of water as an appetite management tool and I've kept up the habit. Hopefully, taking care of the lesions with pentasa will speed things back up. btw. Does 40$ a month seem like the right price for Pentasa?

 

[Rebecca85]

Not a clue! I am in England so we pay a standard price for prescription items, regardless of how much the medicine costs. Try google shopping and see what comes up!

 

[sunflower]

My Pentasa costs over $700 a month, but I only pay a copay, thank goodness, or I couldn't afford it. I never had any weird side effects from it, but every one is different.

I was diagnosed in 1992 with Crohn's colitis, then I was seeing a doctor last summer that undiagnosed me because I didn't have the antibodies. I sought another opinion, and he agreed - still have Crohn's! Just don't have the markers. And my main symptom for the last several years has been constipation. It is a weird disease.

 

[nycguy101]

Update!

So, I went to see a different GI to get the double balloon endoscopy scheduled and he had some interesting thoughts. He said he hasn't seen anyone with crohns with exactly my symptoms, and wonders whether its actually crohns at all or something else causing the lesions. I spoke to my "other" GI, the one who I've been using to get a second opinion on all of this, and he said it doesn't look like Crohns and he thinks that its probably something else. The lesions are all in one part of my intestine and do not affect the ileum, large intestine, or duodenum at all. They know I dont have any strictures from the results of the CT (the one where they fill up your intestines with liquid to see if there are any parts that dont expand properly) and the barium x-ray. Apparently, almost all Crohns patients have pain, of which I have none when I take miralax to soften things up in my intestines. Ive since stopped the Pentasa because it made the constipation unbearable even with the Miralax and didn't provide any help whatsoever (except maybe reducing the feeling of fullness when I lay on my side). Also, if I take use about 2-3 packs of chewing tobacco, it causes my to instantly go to the bathroom if anything is in my large intestine. So, they sent me for additional blood tests to check my Thyroid and stool tests to check for parasites. Has anyone heard of parasites causing this kind of long term constipation? They also put me on adderall for the fatigue and it solved the fatigue issue completely (on a pretty low dose too, 10mg twice a day)! The only thing that worries me is that it took 7 hours for the pillcam to get to my large intestine (and I was told it should take about half the time) and eating vegetables makes things much worse. Maybe this is all a result of slow peristalsis and the lesion is from alcohol/stool sitting in my small intestine for so long? So, I'm holding out hope that it isn't Crohns! Any thoughts would be appreciated. Has anyone known someone with Crohns and no pain at all when the constipation is managed with Miralax?

Something else I've been wondering; All my life, I've gotten little white clear blisters in the back of my throat. They're completely painless, and when they're popped, they dont bleed, and they heal in about a day with no residual damage. Could this be happening in my intestines? Causing lesions without pain or bleeding?

See for yourself; maybe someone here has seen something like this before.


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I understand what the docs are saying. Its not the "divot" thats normally seen and persists in early crohns like here, they're not bleeding, and each lesion is solitary; not clustered.

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