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Crohn's Disease Forum » Your Story » May or may not be Crohn's


02-27-2016, 01:24 PM   #1
Jbliong
 
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May or may not be Crohn's

Hi! My name is Janet. I'm from the Philippines. I joined this forum on behalf of my Mom.

Two weeks ago she had gastrojejunostomy to bypass an inflamed/swollen duodenum. The biopsy tested negative for cancer. They also tested it for TB and it came back negative.

Her Gastro Doctor is now saying it could be crohns but they can't tell for sure.

So now they want to do a shotgun treatment for TB, even if it tested negative. Is this a good plan?

My mom was discharged from the hospital two days ago. She's still weak and vomits almost everyday. She's losing weight fast. We don't know what to do.


02-27-2016, 02:07 PM   #2
smt
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Janet,

Welcome. I agree that this is a tricky situation. In India, there are reports of Crohn's being misdiagnosed as TB. In some cases, TB medication helps; I have read journal articles to that effect. This is probably because one hypothesis is that MAP bacterium causes Crohn's - this is similar to TB bacterium.

The problem with TB is that it is very difficult to detect in testing alone; there has to be clinical symptoms. She seems to be having them, but there is an overlap with Crohn's. Also I think TB medication, once started has to be completed. This factor has to be taken into consideration.

Personally I was "detected" with TB on serological testing. They later conducted a TB PCR and gave an IBS diagnosis. My account is here: http://www.crohnsforum.com/showthread.php?t=69718

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02-27-2016, 03:18 PM   #3
ronroush7
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Welcome. Have they given her a fecal calprotectin? It is a stool sample test and it measures inflammation.
02-27-2016, 06:50 PM   #4
fuzzy butterfly
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Hi Janet and welcome.please see if the above mentioned test have or will be done. They can really help with a diagnosis.
Send best wishes n hugs to you and your mum. 💕
11-02-2016, 01:34 AM   #5
Simpsons06
 
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Hi Janet! I'm a Crohnie of 14 years here in the Philippines.

Very few of us here. Reason why doctors are having a hard time diagnosing. But there are more doctors now who knows and manage patients with IBD. You just have to find them. They are "IBD" specialists per se.

Also, TB and IBD presents symptoms almost the same way. I for one has been treated with TB meds before I was dx with Crohn's. Because Philippines has high incidence with TB, it comes automatic for doctors to consider that. Microscopically also, they appear very similar. But with great eye, in the biopsy and symptoms, clearly IBD or TB diagnosis can be made.

Let me know if you any help. Cheers!




Hi! My name is Janet. I'm from the Philippines. I joined this forum on behalf of my Mom.

Two weeks ago she had gastrojejunostomy to bypass an inflamed/swollen duodenum. The biopsy tested negative for cancer. They also tested it for TB and it came back negative.

Her Gastro Doctor is now saying it could be crohns but they can't tell for sure.

So now they want to do a shotgun treatment for TB, even if it tested negative. Is this a good plan?

My mom was discharged from the hospital two days ago. She's still weak and vomits almost everyday. She's losing weight fast. We don't know what to do.


11-03-2016, 06:00 PM   #6
Julia S
 
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Hi there! I can say from personal experience that it is *very* difficult to decide whether a patient with a positive skin tuberculin test or positive quantiferon test should be treated for an active TB infection. As a matter of fact, I've lived/been living through a very similar dilemma myself: I'm almost certainly a Crohns patient but because my Crohns is in an atypical location and I tested positive for TB via a skin and blood test, my doctors were stumped and did not know whether I should be given full TB regimen or just the latent TB treatment (prophylactic treatment).

Here are some pros and cons for you to consider (this is based on what was told to me).

Crohns isolated to the duodenum is rare. If your mom has a CT scan and a colonoscopy and other tests done and the only part of her body that is affected is the duodenum, that raises the question of whether she really has Crohns or not.

TB on the other hand usually affects the ileal-cecal valve or the duodemum/jejunum connection.

It is VERY hard to tell Crohns and TB apart in some cases and biopsies are notoriously bad at picking up TB.

If she tests positive for TB via a skin or blood test, that means she is carrying the bug (and yet does not mean she HAS AN ACTIVE TB INFECTION). A chest CT is usually orderd to make sure there isn´t signs of TB in her lungs. In my case I had a positive blood test and negative CT scan + an isolated stricturing lesion in my mid ileum and no sign of inflammation any where else at all (I even had a double balloon endoscopy where they ran through 1 meter of ileum and found nothing, not even at biopsy).

Even then, the infectologist and the GIs wanted me to take the TB drugs for the following reasons

1. If you test positive via skin test or blood test, you have to AT LEAST have the latent TB treatment (fewer or even just one antibiotic for 6 months) as prophylaxis. You have to do this because, if you do not and you take an immunosupressant, especially a biologic, you could THEN develop tuberculosis proper and it can be very bad. We don´t want that.

Now, since its virtually impossible to tell Crohns and TB apart in some cases, if you test positive, have some symptoms and your Crohns does not seem like the textbook Crohns case (ie: nothing in the ileum/colon at all), it might be smart to treat you for TB first before treating you for Crohns. After all, all Crohns treatments suppress your immune system and you do not want to do that if there is suspicion that you might actually have a TB infection. Your body would go haywire.

If the treatment works, hurray! You don´t have Crohns! If it doesn´t (in two months you´ll have an answer) then at least you are a good way in to having treated a latent infection (prophylaxis) and you´ll be ready to get your Crohns medication, even biologics, if needed.

So what are the downsides to treating TB? Why don´t we all just do it? (By all I mean all of us who have a positive tuberculin skin test or blood test) Well, 2 reasons.

The first reason is obvious: its a bunch of meds. And they wreak havoc on your liver and you can have unpleasant side effects. Mind you, not everyone has side-effects but it is a 4 antibiotic regimen for 2 months and then 2 antibiotics for 4 months after that. If you´re going to take that many antibiotics, its nice to know its for a good cause.

The second reason is actually my personal reason for opting to NOT take the full TB drug regimen and I'm not trying to persuade you or anyone that my logic's valid, I'm just sharing, so feel free to think its a load of crap, ok? But, basically, I'm very hopeful that we will find out at some point that at least some patients have Crohns caused by a MAP infection. My personal belief is that what we call Crohns now is actually a myriad of conditions that haven't yet been stratified properly. And I feel like at least some Crohnies are actually fighting a MAP infection. I would like to think that I am one of those if I truly have Crohns. Following that same logic, I would like to one day try AMAT (or anti-map treatment) if research proves it is effective in some cases. To the best of our knowledge, the best AMAP regimen is a combo of three antibiotics one of which is rifabutin. And therein lies the issue: if you take rifabutin as part of a TB regimen and you actually have MAP, you will be ineffectively treating MAP and might develop rifabutin resistant MAP.

In my particular case, since the evidence in favour of an ACTIVE TB infection were super tenuous (I had no enlarged lymph nodes and the location of my stricture is in the mid-ileum (also strange for TB as TB usually hits the ileal/cecal/jejunum/duodenum valves) I opted to only take Isoniazid (the latent TB treatment). I'm hedging my bets on NOT having TB and so far so good. But, mind you, if I'm wrong it will be a nightmare. So I might come to regret this decision later.

Summing up: my doctors also wanted me on a full TB regimen "just to be certain" although none of them really think I have TB and I chose to treat only latent TB for the reasons above. Only time will tell if I made a stupid choice or not. You could argue that I should have listened to my doctors and done what they told me to :P

Sorry for the humongous post, I just spent so much time going over this myself I thought I'd share my story.

P.S: A fecal calprotectin test would be positive in either case, Crohns or TB so it is not a good Dx test.

p.p.s.: Is she on a liquid diet to ease digestion and help her gain weight?
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