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Pillcam results are negative

Nadda nothing showing up and the picture was very clear. So I'm getting blood panels done Tuesday and if my WBC is still high then off to the Hematologist I go. Maybe it's not Crohns? Heck I donno anymore.

this mystery sucks.
i guess it was good to have a totally solid answer as to whether there was intestinal inflammation or not......
is another clue in the dx i suppose.

enough clues already though, wheres the treasure!
No kidding Kells. There is inflammation but just a little bit in the ileocecal area that was found via colonoscopy but the lesion or whatever that was found last August is gone. So now I'm heading to the Hematologist.
So how "normal" is that inflammation in the ileocecal in their opinion?

I take it no scarring either, by your first post?

As you said, if it's not Crohns, it's probably easier to treat (or even cure if I remember correctly?)

My Butt Hurts

Back to your original self-diagnosis, Dr. House.
Good luck on Tuesday, hope they get the results quickly so they can get you in to see the right doc.
No scarring or anything either. I've been told by the surgeon that some inflammation is normal and nothing to worry about. The fact that I'm going to see a Hematologist instead of an Immunologist leads me to believe that she thinks it might be Leukemia versus an immunoglobulin problem. She hasn't said that but I follow pretty well along with her line of thought. None of this makes complete sense though because "normal" people don't get bowel obstructions .. so wtfover.
aw drew, just the thought of leukemia.........:(
i guess its better to know asap though right

if only there was a real life dr house to figure you out in a snap.
and you could handle his bitchyness ;)

i hate hate hate that you dont have an answer. i know ive posted 20342 times and said the same thing but i. hate. it.
kimberlie said:
Jill, I told you, pillcams are not pearls. Drew, I hope you get an answer soon. Enough is enough already. There is something to be said for peace of mind.
Given the situation .. she'd be looking for diamonds .. pearls on the other hand .. wait this isn't the lounge. :lol:
Drew- I hope they figure it out soon for you. Being sick just sucks, and it sucks even more not knowing what's up.
My doc told me that he does not prefer the pillcam. He says it is unreliable. From what I have read online may people have had negative pillcam tests with Crohns.
Mine was super reliable. Pretty much half my intestines were raw, green and pussy looking. (Gross!)

What didn't turn out well for me was that the camera got STUCK. LOL
I almost had to have surgery to get it out. Worst sickness I ever had in my life.
The pain so soooo...intense.
Pen said:
No inflammation is normal or bowel obstructions. A twisted bowel would feel the same, has that ever happened? Honestly Drew I dont know how you keep so sane... I'd be bald from pulling my hair out. How do you do it? :yrolleyes:
Well I've been fortunate Pen. I've had the support of all of you of course as well as a very supportive group of friends and my family has been in my corner since the beginning. I'm incredibly patient as well. Sure, I hate feeling like dog crap all the time but getting angry isn't going to help anything, I often think getting incredibly pissed off will just make things worse, the affect of stress of the body above and beyond Crohns is well known.

I am fortunate as well in that my family can help me out financially, albeit I'd rather they not be helping me, I'm super prideful but who's going to turn down a free sandwich when they're starving?

I also enjoy a good challenge. Admittedly I wouldn't like to be "the challenge" but this entire situation for better or worse has shaped me in so many ways in the short time I've had to deal with it. And I know no matter the outcome that it will have made me a better person. So that keeps me sane.

My Butt Hurts

Good luck with your blood test today Drew.

(I got the news Kim... there is no pillcam coming to me by mail. I am very sad, but I'll get through it. Thanks for your support.)


Sports Crohnie
Drew -
Have you tried traveling to Mayo Clinic, Cleveland Clinic or elsewhere for further testing?

Just a thought . . .
thats a good suggestion fen. seeking out an expert doc might be a good option. i went to the cleveland clinic last yr to see a surgeon. he didnt have anything new to offer me, but our cases are very different of course.
the number of cases a doc has seen increases their ability to dx and come up with solutions in my opinon. and clinics like those are BUSY BUSY, the docs getting lots of good experiece out of it.
Thank you MBH :):):)

Well I have thought about it but haven't pulled the trigger yet. According to something I saw on Mystery Diagnosis of all places haha, one of the supposed _best_ Crohns doctors is here on the west coast at UCLA. I have changed my GI twice already. This doctor I am with now though is different than the previous 2. She seems to really be in my corner and is willing to fight to figure it out even if it's not Crohns. She has been receptive to all the graphing/charts/pictures/health records/suggestions I've brought to her and she's actually _READ_ them instead of dismissing them off-hand. Her nurse even emails me weekly to see how I'm doing.

I am being seen at OHSU which is Oregon Health and Sciences University, sometimes why I just shorten it and called it Uni, easier to say :) Short of traveling to Seattle or San Francisco/Los Angeles they are the top notch best of the best doctors around here.
yeah from what youve posted before your doc does sound really great, attitude, respect and attentiveness probably win over "expertise" in some cases you know? a doc may be the best smartest most sought after person out there, but if he/she isnt willing to work with you as a whole patient, then who cares how smart they are.

i guess you could always go to another place on a second opinon type trip. your case would be presented and hey maybe theyve seen someone like you before! then your good doc could do treatment so you get to keep her :) from what it sounds like, shes not a head up her butt doctor who would be offended by you getting anothers opinion.
meh, idk just spilling ideas here
What muddies the water here is that with the lack of any evidence of problems with my intestines other than anectdotal stuff from my own view of things. Obviously the records show there was something wrong but it's now gone. So I'd be hard pressed on who I should be seeing at this point. Another GI? Immunologist? Hematologist?
An alloftheaboveologist.

bahhhh youre righttt!! how do you know what specialty you belong in when you dont have much idea what the prob is.
Lets just hope you find answers before you're seeing a "pathologist".

Probably useless to ask, but you know what's not gotten you better, has the data on what's made you worse lead to anything substantial?
Well the only consistent data point since I began getting ill is my white blood count being elevated. Nobody has been able to explain it as of yet. For the time I was on Pred is was said well you're on steroids which is the cause of it continuing to be high, I've been steroid free since May of 2008 and it's still be high. When I admitted to the hospital with the partial obstruction in '07 it was 22 and really has bounced around since then.

The only thing I've seen that might be evidentiary evidence to support Crohns at all is that when I went on the Humira my white count dropped to *my normal* which was 11.4 which was back in January. Although, it spiked at almost 21 in December even though I was on Humira at the time.

We are starting to see other things happening though in addition to the WBC, RBC is slowly dropping and most of the other values they check for in a standard CBC and Chem Panel are basically all borderline. B12 when I asked to be checked was 550 which was well within normal ranges, I was supplementing at the time though. A month later when I asked to be re-checked it had dropped to 400, corresponding with me stopping supplementation. So we're trying to figure out what is causing the WBC issue and what is causing continued nutritional deficiencies when there is no evidence of any inflammation or scarring anywhere in my bowel, other then the small amounts in the TI confirmed by biopsy.

I also asked on a lark, based on my own research to see if I was having issues with immunoglobulin. Initially I was tested for IgA deficiency which can cause bowel problems along with other parts of the body that are related to the mucousal system (i.e ears, sinuses) which I've always had trouble with. It was within range but it was borderline. So my current GI asked for something called an SPEP panel, checking IgA, IgB and IgG. The expected results were supposed to be that each of them would be in the same range, so for example it showed IgA and IgB as being 10% while IgG was at 7.5% which was a surprised finding to my GI.

More research on my part showed that IgG can be caused by several things including malnutrition and bone marrow problems. So we're currently exploring the possibility of Leukemia given that the elevated WBC and IgG fit that possible profile.

Bowel wise, I am able to eat more now with almost no pain in my RLQ but I am still seeing bloating and at times I go back and forth between C and D although recently within the last day or so things have been completely normal. Nice formed stools. So I'm trying to eat as nutritiously as possible so that we can rule out or prove the IgG issues as being a nutrition problem.

My biggest issue right now is supppppppper bad exhaustion. Sleeping at times 15+ hours and still feeling exhausted when I wake. So we'll see what the blood draw shows and go from there.


soooooo, with a pill cam...how do they get it back? do you like have to go thru ur poo or something? that would suck! but i would totally want the pics from it! i have the ones from my colonoscopy^.^ lol and i told my mom next time i have to have surgery i want a video of it cuz i wanna see my insides....yea im weired lmao!:D
Geez Drew, I'm really sorry about all this. It must be quite frustrating for you. Once you're diagnosed, you should tell the writers of House to make an episode about you.

Maybe you should see an immunologist though, if the hematologist can't find anything.
SpoonNinja said:
soooooo, with a pill cam...how do they get it back? do you like have to go thru ur poo or something? that would suck! but i would totally want the pics from it! i have the ones from my colonoscopy^.^ lol and i told my mom next time i have to have surgery i want a video of it cuz i wanna see my insides....yea im weired lmao!:D
You pass the pillcam through your stool normally, it's disposable. You have to wear a harness, check in this forum for pics of what it looks like. The capsule wirelessly transmits the images from the capsule to the harness for storage. You just drop the harness back off and the pictures are downloaded and strung together to create the movie that your doctor actually reviews.
I've had 5 of them Spoon .. heh.

Blood results are back, WBC still elevated and my protein has dropped like a rock again, which probably partly explains why I'm tired. Couple of things I'm seeing an uptick in as well that don't seem right. The % of Lymphocytes as a total of my blood and the # of Lymphocytes showing up has increased over the last 7 months above the normal threshold and continues to rise.
I wanted to update .. I talked to a good friend of mine who has a member of his church who does have Leukemia .. and we were talking about Hematologists and such and he showed me a big list of what they can/do check for. So I shouldn't be shrieking like a fiend I suppose but because they had mentioned directly lymphoma before and because of the results I have had it was inferred that thats what they were checking for but it could be a myriad of other things.

Anyways to be continued ....
Lymphocytes - Higher with some viral infections such as glandular fever and. Also raised in lymphocytic leukaemia CLL. Can be decreased by HIV infection. In adults, lymphocytes are the second most common WBC type after neutrophils. In young children under age 8, lymphocytes are more common than neutrophils.


Sorry for just tossing quotes at you. In a hurry today.
No worries Colt, good info to know. I'm basically baffled as to what the hell is wrong with me at this point .. I'm giving up on guessing anymore.