Crohn's Disease Forum » Your Story » Currently in Denial

10-08-2013, 04:04 PM   #1
natmarie89's Avatar
Join Date: Oct 2013
Location: Jeffersonville, Indiana
Currently in Denial

Hello, all! I am brand new to the forum and looking for advice - suggestions - admonishment - at this point, ANYTHING that will make this prospective diagnosis make sense.

It all started with chills one day in May. No fever, just chills. The next day, however, it was a full blown fever over 101. I called my doctor and he got me in the same day, but the fever had died down to just at 99 by the time I got there. I had been having some random but sharp abdominal pains and I was almost certain it was my gallbladder or gallstones. There's a family history and the location seemed to fit, most times, anyway. Long story short, after a negative ultrasound, the doctor wanted a HIDA scan done and I was too cheap so we went for a CT of the abdomen and it showed inflammation of the terminal ileum so everyone jumped on the Crohns bandwagon.

Here's where it gets weird, though. The blood work taken at the time of the fever showed no elevated white cell counts. I'm over 200 pounds with a very healthy appetite. It takes an act of congress for me to vomit I'm not debilitated by bloody or constant diarrhea. I'm in very very little pain and the pain I do have is low and central - at the top of my pubic hair - almost like menstrual cramping - never on the right side. I also have the occasional "HOLY CRAP, IS THIS A HEART ATTACK?!" pains right up the middle of my chest. I've had a CT scan, a colonoscopy and an endoscopy and if I didn't know better, I'd swear those pictures are NOT of my body. My Gastroenterologist said it looked like a "war zone" in there but can't seem to answer why I don't feel any of it. I've taken a LOT of NSAIDs in the past and I think I've just done damage. I'm convinced my Gastroenterologist hates me, but he's ordered some type of blood work (the hospital billed my insurance over $2000.00 for this blood work) that is supposed to determine which it is, Crohns or NSAID use, once and for all. I've been doing some research and for the life of me, I can't figure out what this test is.

I'm on day 42 of a 47 day steroid course tapering from 4 10 mg pills once a day to 1/2 of a pill once a day. I'm also on Pentasa 4 x 500 mg twice a day and omeprazole once a day. My stools are looser now on all these meds than they ever were before.

At any rate, I know I've left out some important information - feel free to ask away. Any help would be GREATLY appreciated.
10-09-2013, 12:39 AM   #2
Forum Monitor
Clash's Avatar
It could be that you are having the Prometheus IBD sgi Diagnostic(<--click here for more info). It is used in conjunction with other tests you've mentioned when getting all the pieces of the puzzle together. It isn't 100% accurate but may help with the full picture.

As far as symptoms vs. test results or disease activity it can vary greatly with each individual. My son has never had a raised WBC count either though he has had severe inflammation located in his TI. Also at his highest fecal calprotectin result(stool test that measures inflammation in only the GI tract) he was having hardly any symptoms.

There have been a few studies in relation to how CD symptoms can vary from person to person even when severity of active disease and location are the same. You can google those, they make for a good read.

When you had the endoscopy/colonoscopy did they take biopsies? Just wondering since those seem to be the "gold standard" in a crohn's disease diagnosis.

I hope you find answers with the blood test and welcome to the forum!
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

Last edited by Clash; 10-09-2013 at 08:17 AM. Reason: spelling
10-09-2013, 03:25 PM   #3
natmarie89's Avatar
Join Date: Oct 2013
Location: Jeffersonville, Indiana
First of all THANK YOU SO MUCH for the warm welcome. I truly appreciate you taking the time to reply. I was really afraid that I had done the wrong thing by reaching out on this forum - I'm really kind of an oddity right now. I was actually going to request that my account be deleted last night, but thought I'd give it a day, just in case. I'm so glad I did!

Second of all, you are correct - it is the Prometheus test!! Thank you, especially for the link! Nobody really explained to me what it was - they just told me my sample would be sent to "a special lab in California." That's putting it mildly.

The biopsy results from my scopes were mailed to me about 10 days after the procedures and stated they were "positive for inflammation in the small intestine" . . . and that "all other samples are normal" but it didn't say anything more. I was dumbfounded and stuck sitting on exactly what that meant for the next two weeks until I saw my GI again. That's when he gave me the talk about knowing that I don't feel like my symptoms match, but not being able to argue what he saw when he was in there. That's when the formerly unknown blood test was ordered and I'll have those results at my next appointment on October 21. Your reply reminded me that my GI and I have never discussed the results of my stool sample. Speaking of stool and not to be graphic, but I have NEVER had so much as a drop of visible blood in mine since this whole thing started.

Now, tell me more about your son. Is he still staying relatively symptom free?
10-09-2013, 04:38 PM   #4
Forum Monitor
Clash's Avatar
I'm glad I could help with the name of the test! And it does take some time for those tests to come back as well as biopsies. Was your stool sample for the Fecal Caprotectin test or was he testing for blood, parasites etc? If they found ulcers in your terminal ileum then the Fecal Calprotectin result would probably be a moot point, since it is testing for inflammation in the GI tract and you obviously had that by results of the biopsy.

Sometimes with the biopsy they will find a certain type of granuloma, and that makes the diagnosis of CD that much more solid. But around 50% of biopsies of CD patients show the granulomas so not having it show up in the results doesn't mean you don't have CD.

As far as BMs(bowel movements) go there is no such thing as TMI here on the forum, so any questions you may come across feel free to ask. In relation to blood and BMs, it is not unheard of for someone with CD to not have blood in their bowel movement. Those who have active disease in their small bowel are less likely to see blood and when they do it will be dark almost black looking. The closer to the rectum the redder the blood tends to be.

Also not everyone has diarrhea, some tend toward constipation. Some have pain others do not. In fact, in some children the only symptom is lack of growth(due to malabsorption of nutrients because of active inflammation). So it can be very individualized as far as all that goes.

Here is the thing though, with or without symptoms, if you have inflammation going on then damage is being done. If it is CD then that kind of makes it silent but sinister. If there is active inflammation and it isn't treated then it can be left to simmer, which can lead to scar tissue. Scar tissue can lead to stricturing(narrowing) of your bowel in that area. This could lead to obstructions and surgery to remove the scar tissue. Scar tissue can't be reversed with meds.

So it is important for those with CD, even those being treated, to make sure they have regular testing to ensure what they are feeling on the outside matches what is going on inside.

It seems your GI has been asking for the right test and that you are in great hands so hopefully you can get to the bottom of your trouble. I hope that you aren't dealing CD but please keep us updated and let us know how you are doing. And feel free to ask any questions you may have. There are tons of caring, compassionate members with loads experience!
10-09-2013, 05:31 PM   #5
natmarie89's Avatar
Join Date: Oct 2013
Location: Jeffersonville, Indiana
Thank you so much!! I really feel like I'm getting more of the picture now which makes me confident I can ask my doctor questions past "but, why isn't . . . " or "but, why don't I . . . ".

Another interesting fact - I have a multi-nodular goiter - my General Practitioner, who also thinks it's Crohn's, but thinks it was caught early, thinks there's an autoimmune connection with me for sure.

Okay, so I'm going to seize the opportunity to ask more about BMs

Today I did a Google search of "What does Pentasa do" and it sounds like it's some pretty amazing stuff. My only issue is my bowels are actually looser on the Pentasa than without, but I go like clockwork every morning - sometimes twice and sometimes once again in the evening. The consistency is strange, though - formed, somewhat thin, sometimes embarrassingly long, but "fluffy". I sometimes have the now extremely rare occasional fully formed stool. I think I've had three that I can remember in the last month, but they are never very big. I never had the watery diarrhea unless I ate something to cause it, generally jalapenos, and I've given them up completely. My stools prior to the meds were really hard to explain and (please forgive me) really difficult to clean up afterwards - almost peanut butter like. They did almost always have a strong metallic smell, though and dark free floating flecks - which makes me wonder if it could have been traces of blood. I guess what I'm wondering is, would the doctors rather have you going two or three times a day and have it be loose-ish than have you not go for a day and have it be formed? Is what I'm experiencing from the Pentasa or did they catch me so early that I'm just now going into symptoms?
10-09-2013, 05:57 PM   #6
Forum Monitor
Clash's Avatar
Pentasa is a 5ASA is has great efficacy with UC(ulcerative colitis) but not great results with CD. Here is an some info on a study done with 5ASAs and CD:

Mesalamine (Mesalazine - 5ASA) is commonly used for patients with Ulcerative Colitis but its use in patients with Crohn's Disease is quite controversial. The authors of this article explore its use in Crohn's Disease.

- There are doubts about how well it works for people with Crohn's Disease but many GIs use it because it works well for Ulcerative Colitis and is relatively safe.

- Mesalamine acts topically. It's like putting lotion on your skin but you're putting it on your intestines. As Crohn's Disease can extend through every layer of the gut, it doesn't make sense that Mesalamine would work that well. Conversely, Ulcerative Colitis only affects surface mucosa so it can work well for it.

- 5-ASA is the active therapeutic moiety of sulfasalazine. Sulfasalazine is split by colonic bacteria into 5-ASA and Sulfapyridine
And more info in the article for meslamine(5ASAs, pentasa, lialda etc):

Early studies of 1-2g of Pentasa showed a lack of efficacy. 4g trials had conflicting results.
- A trial with 2g of Olsalazine showed no therapeutic affect and 22% of patients withdrew due to diarrhea.
- Salofalk versus corticosteroids showed steroids to be much more affective.
- In a study of patients with mild to moderate disease in the terminal ileum, patients were assigned asacol, asacol microgranules, or methylprednisone. remission rates were about the same across the group.
- Pentasa versus Budesonide - Pentasa was less effective than Budesonide but as effective as 1g of ciproflaxin in inducing clinical remission.
Here is the source(<--click here to read more) of the article.

As far as bms go, normal is different for everyone, the GI gets concerned if there is blood in my sons bm or mucus. My son's norm is once a day or once every other day so if he starts going 4 times a day, the GI says to call and update the GI nurse. He isn't as concerned with consistency(a great bm chart is Bristol chart or Bristol stool scale you can google image it) but we do give a number from the Bristol chart. My son's bms are anywhere from normal to fluffy.

I can't be sure that the Pentasa is causing the bm changes but you may want to ask in the treatment section. We have never used Pentasa or any of the 5ASAs.

I know it can all seem overwhelming but what helped us a lot was to sit down and write down all of our questions and concerns regarding disease severity, location, symptoms, and then also treatment, time before therapeutic, side effects, when to call with concerns. That way I didn't get overwhelmed in his office and forget half of what I wanted to know. I just took the sheet in with me and went down the list.

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