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Crohn's Disease
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Posted 10/8/2015 4:03 AM (GMT 0)
Hi all. I stumbled upon here two weeks ago and did some mousing around but only joined today. I've had "issues" for years (extremely urgent bowel movements - soft but I wouldn't call them diarrhea) and at first thought I was lactose intolerant but honestly, quitting dairy didn't help at all. It gives me so much anxiety to never know when I'll have to go and I need a bathroom RIGHT NOW, not in five minutes. The stress from that probably doesn't help.

Anyway, with the support of my partner, I went to a GI at an IBD center here in NYC. I figure they know what they're doing...I hope! I have a family history of Crohn's (my youngest brother) and colitis (mom). Not sure about any other family members. Youngest brother probably had Crohn's most of his life but his diagnosis came around the time my issues started (5ish years ago).

GI set me up with a colonoscopy and did general blood work, including a test for Celiac. Negative and I am healthy (yay?) but I had an elevated ESR and slightly elevated white blood cell count. He said in the absence of illness or something, they could be signs of colitis and expected to see mild signs in my colon.

So, the colonoscopy (that was a fun adventure!) showed...that I have, to the eye, a healthy 26 year old colon. Which is great, because I happen to be 26. However, that was disappointing because I spent 2 days pretty hungry and a week having panic attacks about the IV (I do not like needles one bit and scared the poor nurses!)

So he took a bunch of biopsies and said that one showed mild inflammation in the small bowel - something something Ileitis. He called when I was in class and I was in a daze about the conversation so I don't remember the words before Ileitis. He said "There is a good chance that is probably, most likely, Crohn's but it could be other things"....probably and most likely. Who knows.

Anyway, he wants me to come back in for MORE blood tests (why didn't he just do it all the first time??) for specific IBS/IBD markers (huh?) and to discuss a medication trial. He thinks if we try a medication for 2-4 weeks, and I respond, that will confirm the diagnosis. He mentioned a name but I forget it and described it as: similar to something like prednisone but without the side effects of corticosteroids and works "topically" which I hope to goodness doesn't mean what I think it means.

So I'm in a flux, have no idea what's going on, and in addition to my already delightful bowel habits, there have been some new and not-all-together enjoyable additions to that (very small, but urgent, gassy bowel movements).

When I originally saw the doctor he asked me about some other things: joint pain (oh my knees!), weight (gain, lots of it in the last 8 years since I moved here when I am now quite active and an LMT...figured the knees were from that?), migraines, etc. I also have had Chronic Idiopathic Urticaria since I was 11.

I'm a full time student and I work, and I am beginning to get exhausted by all of this :/ Just want to talk to people with real life experience with similar issues and see if anyone had similar experiences...
Posted 10/8/2015 9:39 AM (GMT 0)
Anyway, he wants me to come back in for MORE blood tests (why didn't he just do it all the first time??) for specific IBS/IBD markers (huh?)

It's probably the prometheus ibd test - save your money and don't bother with it, because it's unreliable. Given your family history, I'd say it's almost a certainty you have mild Crohn's at this point - ileitis is a general term for ileum inflammation.

The steroid was probably called Entocort (brand name) or Budesonide (generic name). Topically just means it doesn't get absorbed into the body and works on the surface only - in this case the gut lining. I should add that Entocort is mainly topical but a small % of it can still get into the bloodstream and cause systemic (body-wide) side-effects. However, this is extremely unlikely in the time span your doctor is proposing. It's a topical steroid but it's still not safe to use as a long-term treatment unfortunately.

When you next see your GI, ask him what his follow-up plans are if the Entocort/Budesonide works. Hopefully he won't say "Pentasa". (It's a common treatment for mild Crohn's disease, but unfortunately research shows that it's no better than a placebo.) I'm jumping ahead of myself here, but these are the options as I see them:

1). Do nothing - but carry on with regular checkups even if you feel fine
2) Go onto 6MP or azathioprine, an immunesuppressant. It might be overkill at this point, though.
3) Change up your diet, go paleo, SCD, etc. Some people are willing to do that - I'm not one of them. If you are, see #1. But there is some, albeit limited, evidence for a strict diet helping with Crohn's.

PS: Did the rectum show any signs of inflammation? Because the urgency and tiny BMs do sound more typical of proctitis (rectal inflammation) than ileitis.

PPS: If you want my experiences, well, I was diagnosed at the age of 25. Even milder symptoms than you if anything - just 1-2 liquid stoods a day, but no urgency, pain, blood etc. However, they were a new thing to me, which is why I went to get it checked out, I suppose. Didn't expect anything to come of it, but a few months later I was diagnosed with Crohn's disease and still with the same really mild symptoms. Don't let my horror story in my sig scare you off - I'm an atypical case (well, typically unlucky, I suppose -_-) I've got a brother with Crohn's as well, and he's had a much easier time of it than me.
Posted 10/8/2015 1:20 PM (GMT 0)
Hi NiceCupOfTea - thanks for the thorough response!

I am lucky enough to have really great health insurance for at least the next 2 months so I having tests doesn't cost me a thing (diagnostics are covered 100% under my plan) so none of this is a money issue.

I don't think it was Entocort he mentioned, but it would be. I vaguely recall it starting with perhaps an I or L, but I will see him (hopefully tomorrow) soon and get all the necessary information.

I already have a list of things to ask him and "What if the meds work"/"What's next" are on there. Ironic that what I have are mild symptoms (and they are, I know, very mild in the grand scheme) and yet they've completely changed my life :/

As for options, I'll know when I talk to him but I have no intention in making a rash or quick decision. Several people I went to HS with have Crohn's so I'm not unfamiliar with the process...it just never occurred to me that my specific symptoms would ultimately end up being Crohn's. I do know that doing nothing isn't an option at this point.

The colonoscopy showed no visible signs of inflammation. The biopsy results ONLY (unless he didn't tell me all of them) showed the Ileitis. The new BM symptoms, I should have clarified, have been *since* the colonoscopy so I think they may be my body thanking me for that particular jarring internal experience. So I could have rectal inflammation, post colonoscopy...? I am willing to change my diet (it could be healthier anyway) but I'm not sure to what extent - I assume I'll see the nutritionist they have on staff (I'm being treated at Mt. Sinai IBD Center/Gastroenterology here in NYC) and go from there.

I wouldn't even say I have diarrhea. They're not "well formed" as in perfect, but it's not liquid or even super soft. When I say soft, I mean it passes easily. There is some stool chart I once saw and there were two ideal options listed - one was the gold standard and the other was small blobs with rough edges or something - they're more like that, and sometimes softer. I've had diarrhea three or four times in the last 8 years (probably more and I'm not remembering) but all of them were very clearly food poisoning and not more than the typical day or so food poisoning usually has. There is never any blood - at least no visibly, and I check. No real stomach pain either, other than when it's Time To Go moment.

Suppose I still have a waiting game but I'm preparing myself for Most Likely Crohn's...
Posted 10/8/2015 5:46 PM (GMT 0)
I don't think the Prometheus test is worthless, especially if you don't have to pay for it. It is one more piece of info to add to the puzzle. I only have had Crohn's in my ileum. It is the most common area to have Crohn's. My colon is free of disease
Posted 10/8/2015 7:28 PM (GMT 0)
I will allow them to do whatever blood test the doctor thinks is best. I'll be a bit pickier about anything more invasive but I don't see the harm in blood tests. Because the colonoscopy was visually inconclusive, I don't think doing more/different blood tests is unreasonable.

I've had this problem with urgency for going on 6 years - it got normal but it's not enjoyable and the stress/anxiety is taking its toll. I can't take the subway without fear of having to get off the train. I know every single place along my commute routes where I can get off and go - once I even had to ask a station agent if they had a bathroom and it wasn't bad but it was bare bones MTA employee conditions. That was humiliating. I've had to buy things at restaurants or Starbucks in order to use their bathrooms. I have to take cabs because I worry I can't walk fast enough or wait for the bus/train. I've had two accidents and I am terrified of it ever happening again.

I have two professors this semester who actively take participation points away for the day if you even leave the room - sure I can get a doctors note but having to leave class because I can't even wait 5 minutes until the end, fills me with anxiety. I'm tired a lot, my knees hurt, my skin condition is made worse by stress and anxiety, I am terrified of being on buses or in cars.

My mom told me this is exactly how my brothers started but I still question: am I just mislabeling my BMs? Are these soft but not water stools really diarrhea? It's not excessive - sometimes I have 3-4 or even 5 BMs a day but they don't *feel* like diarrhea to me and they are nothing like the food-poisoning diarrhea I have experienced. The doctor refers to me having diarrhea too - do I just need to change my own vocabulary? I don't seem to have a very long transit time either from eating to going. It's not immediate but same day, for sure, or next morning for dinner, or often later that night.

I don't care *what* they call it at this point, or how many "worthless" blood tests they do, as long as they can do something to help!

I appreciate all the input!

What is top-down vs bottom-up? I don't know this vocabulary or medication suggestions so I appreciate any info!
Posted 10/8/2015 8:48 PM (GMT 0)
Top down is oral through your digestive tract, bottom up would be rectal meds- which are by far the best for rectum inflammation and lower large bowel inflammation. Since your inflammation is at the point of where your small bowel connects to your large bowel the bottom up meds won't ever reach that high.
Posted 10/8/2015 8:55 PM (GMT 0)
Ah makes sense thanks.

Also, when I said med trial I meant to try one out, not a research trial type thing!
Posted 10/8/2015 9:17 PM (GMT 0)
Are you on any medications, prescription or over-the-counter? Do you take ibuprofen or aspirin or anything like that?

Do you know *exactly* what the pathology report said for the biopsies that showed ileitis? If you could get that and share it with us, that would help. Ask for them to email you a copy of the report.
Posted 10/8/2015 11:51 PM (GMT 0)
I am on one prescription medication for my Chronic Idiopathic Urticaria - Levocetrizine (Xyzal) 5mg daily and before that (2000-2010) I was on 10mg/day of Doxepin but the side effects were unpleasant and took their toll.

I take Advil "as needed" - or aleve - for migraines or other headaches. I very rarely (every few months) use a muscle relaxer (Flexoril) or Percocet for any very bad back pain until I can get to my chiro/LMT. I used to take Excedrine migraine often until I saw a chiro about my migraines. They're much less frequent now (maybe monthly) and I try to kill with sleep and caffeine instead of meds if I can.

I have not seen the actual biopsy/colonoscopy report. I have to make an appointment for a follow up this coming week. He just called me with the biopsy results and told me what I shared with you all.

I 100% intend to ask for everything for my own personal records, I just have to go in for the appt. I'd rather they not email it, mostly because I want to talk to the doctor in person when I see it.

I trust them, I'm not terribly concerned about them not knowing how to treat me. After all, Crohns was first described by a doctor at Mt. Sinai Hospital so they have a history! I just want to make sure I'm asking the right questions and have all the possible information I can have. I really appreciate everyone's responses!
Posted 10/9/2015 12:11 AM (GMT 0)
So actually, @badgut isn't quite accurate on interpreting what @NCOT meant by meds being top-down or bottom-up. She was referring to the level of intensity of treatment medication. Originally, most GIs would start trying to treat with mild medications like the 5-ASAs (mesalamine, Lialda, etc) or even Imuran, and then go up if those don't work (bottom-up). Most GIs now are realizing that it is better to just treat with more heavy-duty meds that are more tailored to Crohn's (biologics like Remicade and Humira) because the lower-level ones are really not very effective at all for most Crohn's patients.
Posted 10/9/2015 12:29 AM (GMT 0)
Do you find that xyzal is helping with your urticaria? Does it help more than regular cetirizine (zyrtec)?

I have cholinergic urticaria, and the only thing I've ever found to help was steroids - unfortunately not a long-term solution.

As for the other meds, did you tell your GI that you have taken occasional advil, aleve, excedrin, etc.? Sometimes even a single dose of one of those is enough to cause inflammatory changes in the small bowel, as seen on biopsies. Some people even get ulcers visible on a colonoscopy from those meds. So it's important to rule that out before they diagnose you with Crohn's. If your GI hasn't asked about it, you should do so. How long had you gone before your colonoscopy without taking even a single dose of advil or aleve? A few days? A few weeks?
Posted 10/9/2015 1:13 AM (GMT 0)
The Xyzal is AMAZING. I sometimes use regular cetrizine if I forget my prescription and am out of town (but with my insurance, the script is actually cheaper than OTC stuff), but I don't feel it's as effective. The Xyzal also helps my general allergies and asthma.

My urticaria isn't vascular but it's worse - even on meds - in the cold, extreme heat, with sweat, water on skin with clothing, some pool chemicals, just about anything can irritate my skin to the point of burning and itching and the hives appear when I scratch - it's awful! I'm lucky and it's manageable though I wonder if I'll have itchy burning skin if I forget my meds, for the rest of my life.

I had gone a few days since taking Advil before the colonoscopy (also no one told me I couldn't and I only read about it online in the days leading up to it) I had a sinus infection AND my period leading up to it (fun huh!) so I guess that's possible but doesn't explain my other symptoms, right? I don't take Advil often enough to spark literal daily urgent bowel movements - is that even a side effect of Advil? On a side note, because he took biopsies, I've specifically avoided Advil since then (Oct 2) and noticed no change in my BMs. I'm still having the same urgency, the same everything as before. And sometimes I often go weeks without taking Advil. And he knew I took Excedrine or Advil for migraines because he asked about any other symptoms during my first visit (joint pain, stomach ache, etc)

But again, I already know there was nothing *visible* on the colonoscopy. I haven't seen the photos but when I woke up he told me everything looked fine but they did biopsies. The biopsy showed the inflammation, not visual examination of the colon. So there were no ulcers. I'm not sure I'd be comfortable blaming Advil or other NSAIDs for the last 6 years of symptoms I've had...I'd be skeptical of that.
Posted 10/9/2015 1:57 AM (GMT 0)
Yes, I agree - I'm not ready to blame NSAIDs either. But when you have a case that's not *obvious* Crohn's (ie, no strictures, fistula, significant and visible regional inflammation, etc), then it's wise to consider all possibilities while you try to nail down what is really going on.
Posted 10/9/2015 5:08 PM (GMT 0)
Which is why I'm so willing to let them do whatever blood work they want. It's not invasive and I may hate needles but I hate the humiliation, anxiety, pain, and discomfort caused by all of this, a lot more.

I just called to make the appointment he TOLD ME to make and the woman booking it questioned why I didn't just call for the biopsy results and why I was making an appointment. I can see this is all going to be a fun process.

Next available appt: October 20, so I guess I have yet another two weeks of no answers.
Posted 10/10/2015 4:01 AM (GMT 0)
Because I have to wait so long (in my head, it's long...) I emailed my dr asking for copies of all my test results thus far so I can at least share them here and speculate!
Posted 10/14/2015 4:39 PM (GMT 0)
I finally got a hold of my test results (that was an absolute PITA) and the only things high are white blood cell count, neutrophil # (?), and ESR. It says the referance range for ESR was 0-15 and mine was 24. White blood cell was 12.2 on a range of 4.5-11, so not very high. My IGA Celiac Screen was 265 so well within the 70-400mg range.

Still waiting on the biopsy results being sent - who knows if that'll ever happen. There is also a column for my urine test from the morning of the colonoscopy and it says "Trace (A)" - I'm assuming this means a small amount.

I think what caught the Dr's eye was the ESR and slightly elevated WBC.

I don't know much about ESR's though.
Posted 10/14/2015 6:01 PM (GMT 0)
Biopsy results in my email! Yay!

T-Ileum: Inactive chronic nonspecific ileitis (could that be more vague?), maifested primarily by patchu increase in intraepithelial lymphocytes.

Then it goes on to say what could cause it.

The other biopsies show "Colonic mucosa with mild edema. Special stains to evaluate for collagenous colitis are pending" <that was negative, reported at the bottom.

So...I have no idea what any of that means but I'll finally see him on Tuesday and see what he says about meds and such.
Posted 10/14/2015 7:11 PM (GMT 0)
Thanks for sharing your results. I have a few comments:

1) For your celiac screening tests, did they also run anti-tTG? I doubt you have celiac, but that test will tell more than just IGA Celiac by itself.

2) It sounds like you have mild Crohn's. Some people with mild Crohn's have lots of symptoms; others can have severe Crohn's on the scopes yet have very little symtoms. It's weird that way.

3) They should probably now do a small bowel MRI, preferably an MR enterography, to check the rest of your small bowel - just to make sure there's nothing bad going on higher upsteam.

4) Entocort would be an appropriate med for short-term flareups. I don't think you're severe enough to warrant jumping straight to something like Remicade. But for a long-term maintenance med, you could try imuran (azathioprine) or 6mp.
Posted 10/14/2015 7:25 PM (GMT 0)
Thanks beave!

I have a feeling the diagnosis is going to be mild Crohn's. He said he wants to run more blood work for specific Crohns markers - i really don't think it's celiac. I don't even think I have lots of symptoms but joint pain, the urgent/soft bowel movements and yesterday I noticed some blood (bright red) in my stool which is definitely an uncommon occurrence.

How would a flare be defined? What I've been experiencing for the last several years? Could this be a flare?

I'm super irritated with this office so may find a new doctor. The front desk staff have twice now been terrible.

When I called to book the follow up appointment after he gave me the biopsy results, she questioned why I wanted to come in. Because the dr told me too was barely enough of a reason.


And I'm losing my awesome health insurance coverage December 31 :/
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