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GI Issues- Colonoscopy- possible Crohn's? Kinda complicated and very worried

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Crohn's Disease
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Posted 9/18/2007 11:43 AM (GMT -6)
Hi everyone. I am usualy down in the Lyme forum as I have chronic Lyme disease for the last 5 months.

I visit you today because I am having serious GI issues. I have had chronic diarrhea for at least a year and a half. 98% of bm is diarrhea. I never really bothered to get Checked out for it as I either just thought it was the way I was or got used to it. I did have a Toxoplasmosis infection/exposure last year.

Basically I have a fever every day they are calling it Fever of unknown origins. I have diarrhea all day everyday. They have found a lot of white blood cells and lactoferrin in my fecal samples over the last year. No parasites, C. Diff etc.  I have had about $8,000 easily in labwork nothing major there. My medical bills are about $100,000 so far (thank goodness for ins).. I also have a PCP/ID doc, GI doc, and Lyme/ID doc (controversial) so I am stressed out.

I have already had upper and lower GI barium studies a few months ago supposedly normal. I saw a GI doc yesterday and he says he knows something has to be going on in my colon due to the fecal tests. I also lost 25 pounds (I am overweight) without trying. I have severe nausea and no appetite. I have joint pains and muscle pains etc. My regular blood work is all normal except C-Reactive Protein is constantly really  high (despite taking a strong NSAID) sed rate is ok.

It is hard for me (and I am sure my docs) to distinguish GI issues from Lyme issues. I am worried about any treatment of an inflammatory colitis issue, as such things as steroids and immunosupressants are contraindicated in Lyme disease.

I am having a colonoscopy in 2 weeks. I am just wondering if anyone has any opinions as to could I have Crohn's? Can you have Crohn's and be obese? Does it cause pain all over?  I also have gas, bloating, urgency and explosive movements (sorry TMI). I know this is a bit premature, as I have no idea what may be going on, but I would like to research as much as possible. The Lyme complicates everything!!!!

I am disabled from Lyme at age 29 for the last 5 months. Just worried! Thanks in advance

Melissa

 

Post Edited (merrygirl) : 9/18/2007 11:46:25 AM (GMT-6)

Posted 9/18/2007 11:52 AM (GMT -6)
Welcome to the Crohns forum. First off if it turns out to be Crohns you are going to want to stay far, far away from NSAIDS as they tear our guts up and can cause a very bad flare up. Other than that, I think you are going to have to go thru the colonoscopy and possibly even more tests to determine whether its Crohns or not. I sure hope you get feeling better soon and get some answers too. God Bless!
Posted 9/18/2007 12:15 PM (GMT -6)
It is possible to be overweight and have Crohn's.  I am.  I lost 30 lbs this summer with my first flare.  Still overweight.  It's not as common as underweight, but it can happen.  And don't worry about TMI- we spend a lot of time discussing bms around here!

Good luck with all the tests. 

Posted 9/18/2007 1:13 PM (GMT -6)
You might want to look into the lactoferriin levels. Recent research tends to suggest higher levels of lactoferrin when crohn's disease is active than when it is in remission or in cases of IBS. Regardless of what weight you are, unexplained weight loss in the presence of diarrhea is troubling. While some of the symptoms you are experiencing could be explained by lyme disease, things like joint pain, fever, high white cell count, anorexia, nausea and increased CRP levels could also be indicators of crohn's.
Posted 9/18/2007 1:25 PM (GMT -6)
Hi Melissa, I ignored my "d" for years because I was told it was IBS. I too am obese and couldn't imagine I could have Crohn's since everything I had read said that weight loss was a symptom. My daughter would lose weight everytime she flared. I guess I'm the exception that proved the rule. I just knew I didn't have crohn's. Until I developed a fistula to my bladder and had to have an emergency resection. Even the surgeon said only a 5% chance it was caused by Crohn's, even with my family history. 90% it was diverticulitis and 5% in was cancer. opens me up and hello Crohn's. At least I got an eyeball account on what was going on. LOL

By the way, I've been able to lose 60lbs since last August since I now have energy to exercise. Only 40 more pounds to go. Fatigue was probably my biggest symptom besides "d". Never lost weight, never had blood, and never ran fevers.

Good luck on your colonoscopy and let us know how it goes.
Posted 9/18/2007 4:41 PM (GMT -6)

Hi Merrygirl!  Another thing to consider is that regular use of NSAIDS can produce a type of "colitis" also, even if you don't have UC or Crohn's.  If there is an alternative to the NSAIDS that you are taking, you may want to stop taking them for awhile and see if your D improves.

How positive are you of your Lyme diagnosis?  I only ask because a lot of the symptoms are the same as Crohn's symptoms, and I also know how difficult it can be to be diagnosed with Lyme. 

Hopefully the colonoscopy will answer a lot of your questions.  I know the waiting and wondering can be rather difficut though.

Posted 9/18/2007 8:12 PM (GMT -6)
Thanks for everyones opinions and comments. I actually started to get diarrhea before any NSAID usage a year and a half ago. It may not be helping now.

I don't think I should change anything I am doing prior to the colonoscopy, do you guys/gals?

It is only 2 weeks away.

I definitely have Lyme. I see a Lyme specialist and have positive lab work for what it is worth. I also worked in animal hospitals for 10 years so it is a high risk job for Lyme.

Lyme causes a ton of symptoms that possibly overlap other illnesses. I don't know what is what at this point. All I know is that I am sick and disabled.....sigh

Thanks again Melissa
Posted 9/19/2007 7:44 AM (GMT -6)
Well the more I read about crohn's and my situation the more worried I get. this particular abstract from an article I was reading
kinda hit home if you will..

Abstract-
White blood cells in stool indicate inflammation and possibly infection and are also a sign of Crohn's disease; their presence means you do not have IBS.

So likely I either have Crohn's or an infection? I am so worried. My WBC in my blood is normal, if I had an infection wouldn't that be high?

So it is my C-Reactive protein being extremely high and WBC in my bm along with the lactoferrin being positive in my bm that are startingng to suggest Crohn's. Add in the FUO and all my pains oh my.
If I was sensitive to gluten would I get these lab results? No offense but I really do not want crohn's!

One other question-
Can you not have any BM for 1-3 days (or normal movements) if you have crohn's?
Posted 9/19/2007 8:11 AM (GMT -6)

Some folks with Crohn's have c instead of d. 

Is there a particular reason you must use NSAIDs?  If it were me, I'd consider switching to something else for a while, if at all possible.  Even if you don't have Crohn's, NSAIDs can tear up your stomach and intestines.  Giving your system a rest could help.  I know it sucks.  I miss my Advil- especially during that time of the month.  Since I started to flare my cramping is even more miserable than usual.  But the pain relief, for me, isn't worth the extra Crohn's aggrivation.

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