Ileitis, a little guidance needed

[Keralin]

I was diagnosed with Crohn's in the summer of 2013, undiagnosed by Christmas, rediagnosed by my GP in August and empirically treated with steroids for a couple of weeks until GI got their grubby hands back in my business in September. I've been hospitalized three times since September as a result of acute kidney failure due to severe dehydration from uncontrolled diarrhea. I've been taking 5 lomotil a day, and it's barely managing to keep me ahead of the curve.

I had a CT in August that showed marked thickening in the TI, and a colonoscopy a couple of weeks ago with several ulcers in the TI. The biopsies came back non-specific, thus I'm being told once again by the gastro docs that I don't have Crohn's. All of my stool tests came back normal, and my ESR is only slightly elevated. No one can tell me why hemoglobin is 8, which is the most anemic I've ever been, in spite of my iron and b12 panels coming back normal.

My nephrologist, urologist, the infectious diseases guy, and GP all tell me my symptoms and test results "scream" Crohn's disease, yet they defer to GI for the final decision. I was basically told to suck it up, and that lots of people are worse off than I am. I understand that, but how is that supposed to help? I was prescribed a TCA (Tofranil) to deal with the diarrhea and pain. I'm to titrate weekly, until I find the dose that's effective for me, or I reach a maximum of 50mg/day.

Essentially, they're treating me for IBS. I accepted this, mostly because I've grown extremely tired of fighting with arrogant doctors and visiting the clinic. The longer the idea of what's going on marinates in my brain, the more uncomfortable I am with it. I took the band-aid approach with lomotil and tramadol, but things only got worse. Until the underlying issue is addressed (the inflammation!), I'm worried of what might happen.

I honestly don't know what to do. I could seek a second opinion, but chances are I'll end up in the same position I'm in now and the whole process is so draining.

Input? Advice? Mercy?

 

[tzvia]

I think a second opinion would be worth checking into for sure! If you have Crohn's you should be getting meds geared towards Crohn's and not IBS.
Do you have anyone who can give you a good lead on other GI's in your area?

 

[DustyKat]

Hey Keralin. :ghug:

I am so sorry to hear that going through this, it sucks.

IBS - Excuse the language but that diagnosis is bullish it due to the structural changes that taken place in your bowel, thickening and ulcers. These sort of changes do not occur with IBS.

Biopsies - Whilst scopes and biopsies remain the gold standard in providing a diagnosis of IBD the clincher for pathology is granulomas. This is all well and good but only about 50% of those with Crohn’s will have granulomas present on biopsy. My son was diagnosed based on his sister’s diagnosis, symptoms and what the GI during his scope. Pathology has never supported a diagnosis of Crohn’s for him either through biopsy or a more thorough examination of resected bowel. He surely does have Crohn’s though.

Stool tests - Do you mean Faecal Calprotectin (FC) and things like Faecal Occult Blood (FOBx3)?
I have continued to keep an eye out on research studies involving FC and there remains conflicting evidence as to how reliable FC is as a marker for inflammation in small bowel Crohn’s. While in UC, and to a tad lesser extent large bowel Crohn’s, the reliability of FC has remained high and stable the same cannot be said for small bowel Crohn’s.

Bloods - Normal blood results are not a rare phenomena in the adult IBD population and even less so in the paediatric IBD population.
Did they do actual Iron Stores? This is a more thorough test and can indicate things such as Anaemia of Chronic Disease. in this case a you can have a normal Iron reading.
If it is a true Iron Deficiency Anaemia then it would be normal in the context of IBD to look to bleeding, bear in mind that it may not be obvious, that is where FOBx3.
Your Haemoglobin could well be a result of what is mentioned above or in combination with your gender, I am getting the feeling you are female??, and if you are and of reproductive age is menstruation also playing a part? The other obvious thing from what you have mentioned is your Acute Renal Failure, this can also lower your haemoglobin.
I would not necessarily look to B12 as an indicator of anaemia as you have stores of this for up to 5 years.

Based on what you have said I would have to recommend that you seek a second opinion Keralin. I don’t know what doctors or hospitals are available near you. Is there anyone you know that could recommend a good IBD GI?

Dusty. xxx

 

[Keralin]

Interesting info about the efficacy of stool studies. My general GI consults were much more positive. They used the cliché if it looks like a duck and quacks like a duck, it's probably a duck. Yet when I met with the Crohn's "experts", focal active ileitis does not equal Crohn's, even in this context. End of story.

I've had a postive occult blood test in the past, but it wasn't checked in the last set. Lactoferrin and Calprotectin were both tested, and were within normal limits. I have had colon involvement in the past colonoscopies, but it was clear this time. All infectious causes have been ruled out (hence my consult with infectious diseases), so it's IBD or bust.

As they put it, I'm a rounded square peg trying to fit into a round hole. Some pieces fit, but some don't. The GI doctor didn't refer to it as IBS, but did say there is a disease process happening that defies diagnosis making it seem more functional than inflammatory in nature. So yes, I agree with you Dusty. ********.

When I asked about the anemia, it was suggested by my internist that it's probably a result of malabsorption because things move through me so quickly but the idea was dismissed by GI. I've had pretty heavy cycles for most of my adult life, and wasn't borderline anemic until a couple of years ago, so I can't really see that being the sole cause. I'm sure it doesn't help, though! I will have to ask my Nephrologist at my follow up about getting an EPO test just to make sure my kidneys are being bossy enough about the RBC production. I was offered a referral to a hematologist, but I think I'm going to hold off on that one for now.

I know my other specialists are getting miffed because as unstable as my guts are, everything else is going haywire. "So I see here you have Crohn's Disease. How are they treating it?". Then I have to explain the long history to them, followed by plenty of bitching about how obnoxious and sadistic my GI doctors can be. The only good news I've gotten was "Hey, at least no one is trying to cut you open!"

I'm considering doing a little research into providers at Johns Hopkins, as I understand they have a stellar GI department. Thank goodness for internet reviews! I just need to give myself a push to pick up momentum again and get this **** sorted, so to speak.

 

[DustyKat]

Although I am not the one with IBD I do understand the despair that accompanies no clear answers, it sucks.

I do believe there is room for the whole duck analogy. As I said, my son didn’t fit the mould when it came to pathological evidence so he really has only ever had the Crohn’s stamp as the GI and surgeon have said despite what the biopsies say it is Crohn’s…it looks Crohn’s, it acts likes Crohn’s, it’s Crohn’s.
I confess I don’t like it when too much emphasis is placed on a result at the expense of the whole picture, especially in a disease like Crohn’s where there are so many variables in presentation.

How did you respond to steroids?

Dusty. xxx

 

[Catherine]

I personally would take the referral to the hematologist. They are the go to people for anemia.

You need someone skill in the reading of blood test results to help find the cause of the anemia. Iron studies need to performed and read properly.

My child's iron (ferritin) levels have always been normal but hemoglobin dropped to 9 and she was finially dx with IDA with concurrent ACD.

 

[Keralin]

Dusty - I made it through about half of a course of Entocort last winter with mild improvement (stopped prior to having a balloon enterscopy), then I was on Prednisone for about 10 days in September before I was told to discontinue. I noticed a slight improvement in pain and energy levels, yet when I mentioned this to the GI doc, she said it's a nonspecific response because "steroids fix everything".

Catherine - I see your point. It probably is a good idea to be evaluated by a hematologist in regards to the anemia. My peripheral blood smears have come back a little 'off', since August. The most consistent finding is neutrophilia, which I understand can be related to inflammation? Basophils were also high in the last smear, along with quite a few atypical white blood cells.

It's just....doctors. It's a constant battle with my inner child to do 'what's best', versus taking the easy way out. :shifty-t: