My Story - Crohn's vs. TB - Humira making it worse

I am a 37 year old Male diagnosed with Inflammatory Bowel Disease (specifically Crohn’s). There are some (including me) who also think that it might be intestinal TB as I am originally from India and often travel to India. Back in Nov 2011, I had some mild symptoms like bloating, gas, anemia, slight weight loss, and occasional fever. I never had diarrhea, vomiting, blood in stool, or abdominal pain. During a physical exam my GI doctor was able to feel a palpable mass in my lower right quadrant. He ordered a CT scan and colonoscopy. CT scan showed abnormal appearance of the Cecum and ascending colon and extensive thickening of the terminal ileum. There were no fistulas or abscess. During colonoscopy the doctor was not able to enter the terminal ileum due to structuring. He did a PPD skin test and Quantiferon gold blood test to rule out TB. Based on the findings my GI doctor put me on Mesalamine (Apriso) and Prednisone (30 mg). Things didn’t improve much so he moved me on biologics (Humira). A week or two after starting Humira my condition worsened and I started feeling a lot of pain in the lower right quadrant. I was in so much pain that I could not even stand straight. Another CT scan done in the beginning of April showed that the inflammation had progressed since what it was back in Nov 2011. The GI doctor ordered vicodine and that along with a liquid/low residue diet has helped reducing the pain to some extent. I also got a small bowel series done this week which showed emergence of fistulas in the terminal ileum. There were no skip lesions or cobblestone type patterns identified in the barium X-ray.

My GI doctor recommended surgical consultation. He said that the Prednisone and Humira not doing much (making my symptoms worse) so the only way left is to resect the inflamed terminal ileum along with Cecum and part of ascending colon. I met the surgeon today and he is also recommending surgery as soon as possible. The surgeon has told me to stop Humira.

Long story short, my condition has changed so much in the last 4-5 months that it hurts. I was just fine before. I wish I had never started these dreadful meds.

Has anyone in this forum has any experience with intestinal tuberculosis? The Crohn’s meds have made my symptoms worse so I am just wondering (you can call it wishful thinking) if the initial diagnosis was wrong and maybe I have something else.

Thank you for reading and I look forward to your feedback and comments.

Hi ABC and welcome

I haven't read of anyone here testing positive for intestinal TB but it's of course a potential differential diagnosis. Is it possible that they were wrong and you have TB? Yes. But that you had two TB tests done and they were both negative suggests that, statistically speaking, you do not have TB. I can certainly understand your thoughts though and would probably be having the same exact ones if the situation was reversed.

That your doctor wasn't able to enter the terminal ileum via colonoscope due to stricturing tells me that you may have had those fistulae all along, but they just couldn't be viewed. Stricturing can often increase the likelihood of fistulae due to the increase pressure on the proximal side of the stricture.

As for the surgery, what I'd ask them is:

1. Is the stricture inflammation or fibrotic (scar tissue). If it's just inflammation, then trying another drug like Remicade in conjunction with something like enteral nutrition MAY be something to discuss with your doctor. If it's scar tissue, then surgery is probably the best option.

2. Ask if they can rebuild your [wiki]ileocecal valve[/wiki] for you. Some surgeons are able to do this which can help you down the line.

We're here for you.

Hello and welcome to the forum, sorry to hear that you are not doing well at the moment I can only second that David has said and I really hope that you can be feeling better soon.

AB
xx

David and AB, thanks for your replies.

I will make sure to check with the surgeon if he can resurrect the ileocecal valve. From what he told me was a snip in the TI and a snip in the Ascending Colon and then just joining the two together. I believe stricturing is a combination of inflammation and scar tissue. I am not sure how much of each. But the doctor did say that he doesn't want to put me on Remicade and would prefer surgery instead.

Regarding the TB tests, there are extensive studies stating that most of these tests come out -ve for latent (intestinal) TB. In UK and India, if doctors are not sure then they do start with a 2 month TB treatment before putting you on biologics. But here in US no one is ready to do that as they don't have much (if any) experience with TB. Most doctors prefer the top down approach with preds, biologics, followed by surgery.

Both approaches have their pros and cons. I think I am just fighting right now in order to avoid surgery. I know I will ultimately surrender.

Is it common in Crohn's to not get any skip lesions or cobblestone type patterns in the small bowel series X-rays?

ABC, I wasn't aware of that regarding TB, thank you for educating me. If you have any good websites or studies on intestinal TB, I'd love to educate myself more so I can maybe help others in the future.

Regarding the skip lesions and cobblestone patterns, this article may be of use to you in that regard.

David, there are numerous articles on the web on abdominal/intestinal TB (sorry, I am not able to post URLs since I am a new member).

Intestinal tuberculosis is a diagnostic challenge, especially when active pulmonary infection is absent and since it mimics the inflammation and granulomas associated with Crohn’s disease. The major risk comes during treatment as the treatment for TB is exactly opposite to the treatment for crohn’s. TB requires treatment with antibiotics to kill the bacteria, whereas Crohn’s requires immuno suppressants which can create havoc if a person with TB is misdiagnosed.

Since the Crohn’s meds (Prednisone and Humira) are making my symptoms worse, I am trying my best to do some research to ensure that the diagnosis is correct.

Like Crohn’s, for TB also the ileum is the most commonly effected site, either in isolation or with the involvement of the adjacent bowel segments, especially the cecum. The main presentations for intestinal TB are: abdominal pain, palpable abdominal mass in the right lower quadrant, stricturing/obstruction, a swollen ileocecal valve and cone shaped cecum.

I was just reading this paper and thought of you. Search for "TB" in it if you want to get to the highly pertinent aspects.

Hello. I know this is an old post but just wondering how things have progressed here or if anyone else has experience with TB and Crohn's with main reference to immunosuppression? My understanding is that granulomas can look very similar until they are dyed and examined. Crohn's will always be non-caseating granulomas whereas TB will present with caseating and nectrotizing granulomas. I have some experience with this myself and came across this thread through a search.

David said:

Hi ABC and welcome

I haven't read of anyone here testing positive for intestinal TB but it's of course a potential differential diagnosis. Is it possible that they were wrong and you have TB? Yes. But that you had two TB tests done and they were both negative suggests that, statistically speaking, you do not have TB. I can certainly understand your thoughts though and would probably be having the same exact ones if the situation was reversed.

That your doctor wasn't able to enter the terminal ileum via colonoscope due to stricturing tells me that you may have had those fistulae all along, but they just couldn't be viewed. Stricturing can often increase the likelihood of fistulae due to the increase pressure on the proximal side of the stricture.

As for the surgery, what I'd ask them is:

1. Is the stricture inflammation or fibrotic (scar tissue). If it's just inflammation, then trying another drug like Remicade in conjunction with something like enteral nutrition MAY be something to discuss with your doctor. If it's scar tissue, then surgery is probably the best option.

2. Ask if they can rebuild your [wiki]ileocecal valve[/wiki] for you. Some surgeons are able to do this which can help you down the line.

We're here for you.

Click to expand...

Hey David,

Any idea what became of ABCs Crohns case? I'm currently going through the same thing with Humira. My condition worsened. I now have explosive diarrhea, terrible abdominal pain, high fevers, wheezing in my chest, blood in my mucus (had this for a year). My intestines and body hurt badly and I'm not sure what to make of all this. I didn't do the QuBiologics trial bc I desperately needed treatment.