Undiagnosed

Hi all,

I've had bowel problems for basically as long as I can remember. I finally saw a GI after things got worse this spring.

I had a colonoscopy 2 weeks ago that showed inflammation in my terminal ileum, and my doctor told me right afterwards that he thought it was probably Crohn's. But the biopsy came back nonspecific inflammation. He put me on Cipro, Flagyl, and Asacol and said he was diagnosing Crohn's even though the biopsy wasn't definitive.

Well, I did not tolerate the meds well at all and I just talked to him on the phone about discontinuing the antibiotics. He said the blood work he did (A-SCA and ANCA) were also not indicative of Crohn's, but if it were an infection the abx should have made me better, not worse. So basically... he doesn't know what's wrong, and at my appointment this week we will talk about a CT or further testing.

Has anyone else had Crohn's symptoms and inflammation, but not tested positive on blood work or biopsy? What else could this be? Celiac blood test and biopsy were negative. I am iron deficient/anemic and haven't had CRP or ESR tested.

Between major diarrhea from the meds and what I suspect is worsening anemia (because I can't tolerate oral iron either), I feel really, really crappy and not knowing what is wrong just makes it even worse.

Sorry to hear what you're dealing with. I have some questions and comments about what you posted.

1. Do you ever take NSAIDs (aspirin, ibuprofen, other such medications)? Even an occasional aspirin or ibuprofen can cause inflammation in the terminal ileum. If you ever do take these meds, stop them (unless they are prescribed by a doctor, in which case talk to your doctor before stopping them). See if that helps at all with your symptoms, and if needed, do another colonoscopy after you've gone a while without taking ANY NSAIDs (if you have been taking them).

2. Have you had stool tests/cultures done to test for infectious agents? That should be done pronto. Your doctors comments that if it is an infection, flagyl/cipro will take care of it is really poor medical practice. Just lazy.

3. You might also get tested for cytomegalovirus just to make sure that's not what is going on.

4. Do you have any "extra-intestinal" symptoms, such as joing aches, arthritis, eye inflammation, skin problems, etc? Any signs of other "auto-immune diseases", like, say Rheumatoid Arthritis? The reason I ask is that Crohn's can cause symptoms of other auto immune diseases, like joint pain/arthritis; and other auto immune diseases like Rheumatoid Arthritis can cause inflammation of the terminal ileum that looks and behaves like Crohn's but isn't quite the real thing.

5. When you say you've had symptoms for years, what kind of symptoms? Ever had blood in stools? Weight loss? Low grade fevers?

6. Ever been tested for TB? You can have TB in the small bowel that looks and behaves like crohn's sometimes.

7. If it is Crohn's, or heck, even if it isn't, the meds your doctor prescribed are 'old-school' thinking and are not up-to-date with modern treatment of Crohn's disease. Asacol is a drug approved for UC (ulcerative colitis), not Crohn's, but for years doctors prescribed it for Crohn's due to wishful thinking that it *might* work. Recent studies have shown it does not. Flagyl and cipro are appropriate for abscesses, but not for mild/moderate inflammation in the terminal ileum. The appropriate medication would likely be Entocort (budesonide EC), which is a steroid formulated to target the terminal ileum area specifically. It's pricey but effective for mild to moderate (not for severe) inflammation in that area.

Do you happen to know what the inflammation looks like? If it's patchy that's indicative of Crohn's (also the fact that it's affecting your small bowel) have you been tested for Celiacs? That also affects the small intestines.

You're definitely going to need all the tests done, including the stool sample and blood test for Celiacs if that hasn't been done yet.

Meds prescribed for IBD that aren't effective doesn't necessarily mean that you don't have IBD, many, myself included, are not responsive to the meds, especially the oral meds...or we're allergic to them, probably not a huge percentage of patients but there are definitely many of us that do have issues with most of the meds used to treat IBD.

raspberryapple, how long had you gone without taking ANY nsaids before you had your colonoscopy? A few days? A few weeks? In some cases just a single pill is enough to lead to inflammation. But if you had gone a couple weeks or more before the colonoscopy without taking any, we can probably rule that out.

The family history - father with Crohn's - is a very important piece of info. Makes me much more suspicious of you having Crohn's. Your symptoms match it as well (though they could be symptoms of lots of things).

I'd say get the stool cultures done to rule out infectious etiologies. Then perhaps do a small bowel MRI (MR enterography is the name of the best test for viewing the small bowel).

I hope that if you do get a CT you get some answers! Sorry if this is a stupid question, but will it be of your chest/abdomen? To see if there's any inflammation elsewhere?

Please keep us updated! I hope when/if you get your small bowel looked at you get some answers.
I'm glad you at least knew it was common for that to happen! Still a shock, I'm sure!

Here's the update... Just saw my doctor and he came in, asked about my symptoms since stopping the antibiotics, and decided that he is calling it Crohn's even though my original tests weren't 100% conclusive but he doesn't feel the need to do any other tests given my symptoms and family history and the inflammation in my TI.

He put me on budesonide (?) and wants me to keep taking the Asacol plus Lomotil as needed. Also gave me some nitroglycerin cream for anal pain/burning as he thinks I have a small fissure.

I'm going to do budesonide for at least 3 months and he wants to do a repeat colonoscopy in 6 months.

I wish I was a better advocate for myself... He didn't recheck my iron levels and just told me to keep taking liquid iron "as often as I can tolerate." I also wish he would do some kind of imaging because it's so frustrating not to KNOW for sure what is going on.

Andrina said...
Here is something I don't understand. Why do GI's scope the colon several times for Crohns when Crohns might as well be hiding in the small intestines? Why don't they do an MRI after the first scope to find out what's going on in the small intestines?

Excellent question. I really hope in the future they figure out some way of checking as much of you as they can in one visit instead of all of these different tests just to try and diagnose you.

Andrina said...
Here is something I don't understand. Why do GI's scope the colon several times for Crohns when Crohns might as well be hiding in the small intestines? Why don't they do an MRI after the first scope to find out what's going on in the small intestines?

I can think of a few reasons.

One, GIs are trained to do colonoscopies and feel comfortable doing them. With MRIs, it's another department doing them and a different group of doctors that the GI has to communicate with.

Two, GIs doing colonoscopies can often (usually?) get into the terminal ileum, and that is often (but not always) as far as they need to see. But yes it's true that some people have Crohn's higher up in the small bowel and that gets missed by colonoscopies alone.

Three, colonoscopies allow for taking biopsies, which can be critical in figuring out what is going on and what the severity is. MRIs don't allow for biopsies.

Four, MRIs are expensive, even more so than colonoscopies (sometimes MUCH more expensive).

Five, GIs can get PAID for the colonoscopies, because they do them, but with MRIs being done by other departments, there's no payment going to the GI. I don't want to imply that GIs are all just trying to make money off of us, but it is *sometimes* a factor with *some* GIs.

Thanks for the support and info.

Skyflyerjen,

I guess I just wish there was more certainty. I definitely want to get better... but I also don't want to take a bunch of drugs if they aren't going to treat my real problem. And yeah, I really wish I had spoken up more and asked about Asacol's effectiveness and asked him to recheck my iron on this visit.

Beave,

Suggestions for how to find an IBD specialist? The ccfa.org recommendation page only shows pediatric GIs in my area.

I live in a small town and I use my local GI for most things, but I got a second opinion at U of Chicago. I had to drive 6 hours to get there, but it was definitely worth it. I wouldn't hesitate to go back if/when needed