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drew_wymore

drew_wymore

Joined
Nov 15, 2007
Messages
1,806
So I went to an appt yesterday with a new GI at the university hospital here in Portland. Did the usual, take my history, belly exam etc. She had all the notes from my GP but nothing from my former GI .. so it was good I brought every single scrap of paper that recorded the hell I went through with him last year and early this year. She reviewed it then went and spoke to another dr about my case. They both come back into the room after about 30 minutes and say they think that its IBS .. They basically discounted everything my previous GI did that shows inflammation in my small bowel - and from my understanding, the thing that differentiates IBD from IBS is inflammation in the GI tract, can someone confirm or deny this?

So now I get to prep for my 3rd!!! freakin pill cam .. I don't mind looking like a suicide bomber with my fancy vest on but I have to prep with colyte which if it were a human being I could express this to it:
bunny.jpg

I'm irritated at the fact that it seems like the doctors aren't listening. Now, don't get me wrong, first I'm not a doctor (I just play one on the internet) and I would never wish to have Crohns, UC or anything else that would cause me to crap myself but thats what happening and I'm being forced to live with it (fine, I accept it, what else can I do?) but to keep changing diagnosis' and ignoring clinical evidence .. its, pardon my language, ******* frustrating.

< / vent >
 
Aww Drew this just isnt on!!

Last summer a registrar told me if he hadnt had my original pics from my consultant he would have told me I had pure IBS. He told me that I did have IBS last summer and it wasnt a flare. Then I had a barium follow through and CT and both showed narrowing and inflammation in my ileum. I was thoroughly demoralised that I had been really ill for 9wks by the time that reg said that and he said it wasnt crohns related and everything was fine on that score because visually everything looked normal.

They still have me on anti spasmodics to deal with gut spasm related to IBS and have now said I have both. My own gastro cons however has never once said I have IBS including a few weeks ago when I had my last scope. He has decided I have ongoing microscopic inflammation that triggers as my remicade wears off in the last 10-14 days pre my next one. So yes I can understand your frustration!

Thing is I think (personal opinion) it makes logical sense that IBD patients have gut spasm (like IBS) due to the inflammatory process that goes on and that it can also contribute to the pain we have.

Dont let them box you into a ruddy corner!! Hang in there. We will all stand beside you on this one. No one wants IBD but to have the symptoms you have and the things you have been through Drew doesnt sound like IBS. Sorry... ((hugs))
 
Look at the bright side - at least you didn't have a rectal exam.

Maybe you can have fun with the wires that day, and just walk into random places with a sinister look on your face and not say anything. Just stare. Then maybe an evil laugh before you leave.

Vent away.
 
My Butt Hurts said:
Look at the bright side - at least you didn't have a rectal exam.

Maybe you can have fun with the wires that day, and just walk into random places with a sinister look on your face and not say anything. Just stare. Then maybe an evil laugh before you leave.

Vent away.
Click to expand...

I'm grown to like rectal exams ;-)

That was my plan. I have 8 hours to kill and I don't feel like dealing with traffic so I'm going to wander around Downtown Portland with my digital camera taking pictures of large buildings ...
 
You are correct Drew. IBS would have no inflammatory response. It is considered a spasm of the smooth muscle - much like when you have a random muscle start twitching. I agree with Soupy, I wouldn't be surprised if most, if not all, of us also have an IBS type reaction or IBS itself.

I feel really bad for you mainly because of the emotional roller coaster. I think a lot of us have learned to deal with pain, fatigue, and general unwellness. It is the emotional / mental side of the disease that can really get the better of us. Especially in situations like that. Is there any way for you to find a different doctor? One who will listen to you and guide you in deciding your own medical fate?

I don't particularly care for my GI, because like yours, he too believes the test is wrong and that I don't have CD - but he is treating me for it anyway. I hope they will at least afford you that comfort of still treating you despite their own opinion. Bottom line though no matter what you have, no matter it's name I hope you start feeling better.
 
Hey Pen,
Yea I've had pain, in fact thats what started this whole shenanigans. In August of 2006 I had persistent pain in the RLQ of my belly which lasted for a week, ER visit said I was just constipated. Then about 6 months later I started having the diarrhea issues and the weight loss and constant pain that has only gone away for a handful of days since Feb of 07.

This new GI does have the complete record from my former GI as thats what I handed her yesterday, I have the complete packet in digital and hardcopy form in my little grubby hands.

Don't get me wrong, I don't think they're totally discounting whats going on, otherwise they wouldn't have ordered this pill cam. I just happen to get the distinct vibe that they are leaning towards IBS which irritates me because I've been told most doctors will settle with that when they can't pin down a proper diagnosis, granted there is genuine IBS but all the reading I've done doesn't point in that direction. As my former GI once remarked "You can't fake a bowel obstruction and if you somehow did I want to go on TV with you"

The joint pain is being addressed by the GI asking my GP to send me to a Rheumatologist.

I'm just at the point where I want a clear diagnosis and a functional plan going forward that doesn't have to include prednisone as a band aid.
 
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Hey Drew

I'm sorry for the frustration. I recall that the camera was stuck for a little while last time. How is that not convincing to them??? Having Crohn's has made me realize how under qualified many doctors are. The ones I have now are excellent but I couldn't have always said that.

I suggest you try to get in at U of WA next time you're in the area. My doctor is amazing, thorough, and will likely give you a rectal exam if you'd like (he's never given me one while awake).

I understand why you would be frustrated but just know that you're a crohnie to us :)
 
The U of W may be the way to go and yep the first one didn't get good enough images, the second one got stuck. Glad I have a PPO plan for now haha. I just wish they would settle on _ something_ and get on with treating it. I'm about to the point I want to find someone who will operate on me using only a box cutter and a bottle of wild turkey :voodoo:
 
Glad you are getting the joints issue looked at too Drew.

Currently I have had 2 rheumatology apps. Seen 2 different registrars. The first said we would start treatment on the next visit but because she has now got a consultant post in another hospital I had to start from what felt like square one again with the second reg. grrrrrr!

I had my remicade yesterday and the gastro nurse came to see me. She is going to speak to my gastro cons and get him to chase the rheums cons and she will chase the rheums nurses to get me onto treatment in the next couple of weeks. Otherwise I will have to wait til November appointment at rheums.

They still cant decide whether I have rheumatoid arthritis because it is presenting like that or if its whats known as sero negative arthritis which would then probably link it to my crohns. If that is the case then it will be classed as entropathic arthritis. Either way they have said Methotrexate is the only drug other than steroids I can have as am already on remicade and cant have sulfasalazine as those drugs trigger my asthma. Groan.

Both gastro and rheums have said that the combo of remicade and metho work well together (research based) and my gastro cons has said he might be able to get me off the remicade down the line if things go ok. Time will tell eh?

Keep us posted on both fronts Drew as to how you get on. We are here as you know!
 
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Hey Drew this is odd, with the exception of a brief 2 month period of time where UC was a suspect (due to isolated inflammation in the Colon, and the wrong antibodies indicating thus), I've always been pinned immediately for Crohns. Which is odd, because I've been so refractory to treatements, I've questioned it. I've failed on the ones that so many people get amazing results from, and not responded in the least from many. I've questioned the Crohns diagnosis and they always oppose the idea of something else. Sure they did the C Diff tests a few times but I've wondered why the hell isn't it responding as if it was Crohns.

I don't know if your new docs think your ongoing troubles may mean you have something else and before they bombard you as if you're a Crohnie they want to be 110% certain, or what. Did they actually contest with a Dx of Crohns by saying specific things about your inflammation? I've kept all 3 scope picture prints, and all show inflammation quite clearly, and I also have it in the rectum (that didn't sound right)...so I've got something I guess, but I can't stand the enigmity of these damn diseases/syndromes/symptoms/illnesses...perhaps they can do the Prometheus test on you for antibodies, can't claim IBS with those from what I understand, but it's expensive. One thing is for sure, even if a diagnosis is up in the air, I'd be all fine if a doc could treat my SYMPTOMS, and not care why they're there. If I'm better/in remission, who cares what it was is almost my thinking....even though that's wreckless thinking, it's almost how desperate I can feel.

If you really need to vent, go with Butt Hurt's ideas, and call everyone an infidel with a sketchy accent, maybe if you go to Guantanamo Bay, you can get good medical treatment, if Sicko is accurate at all....
 
I had the prometheus test and it showed that I do not have the markers consistent with IBD, but my colonoscopy shows that I do have it. So, before you spend the money on the test consider that it isn't that accurate...I didn't have to pay for mine, my insurance covered it.
 
That's odd, all I've read was quite aligned with it being one of the most accurate ways other than actually looking at the intestines...now I wonder how many people have had inaccurate results now. Mine showed either UC or CD, but definitely something showed up.
 
It's that pANCSA (I KNOW I spelled that wrong, the problem is I never heard of it that way or use it that way, but I've seen you use that term/abbreviation before) I believe is the same thing...tests the antibodies in the blood. Prometheus is the company in CA that does the results. I just call it that because each one I've had was called that by my GI's.
 
I don't know why I didn't show but the results page he showed me stated that only 74% of IBD, 71% of Crohn's, and 51% of UC patients show the anitbodies. He said I am in the 25% that doesn't show since he said I have the disease even though the test said "not consistent with IBD."
 
I have written a lot on the subject, so if you want to use the forum search and type in pANCA ASCA. This antibody test has a high sensitivity rather than a specificity. Meaning it is better at saying you don't have it then you do. But no test is ever 100%. Both antibody tests are consistent with that of Crohns, yet my pill and colonoscopy were perfectly clean. But since being on Asacol I have seen some major differences - meaning I obviously have CD. Anyway.. just do a search I posted stuff on it because I think it vastly interesting.
 
Good point Benson about not wanting to bombard me. My original GI said Crohns for months upon months then said "hell I'm not sure". I've had the prometheus panel and it came back negative. My blood work shows inflammatory markers and scope showed inflammation so thats what has me going wtf houston?
 
That's really bizarre. But that would be great if you don't actually have Crohn's. I would think IBS would be a lot easier to deal with. But then again, if you showed inflammation in the past this doesn't make a lot of sense.

I've been in Portland the last two days. I picked up a load of grass seeds going to New Jersey. It doesn't deliver til' next Tuesday so I took a couple of days off here. I've been at the Jubitz travel center and spent a night at the Portlander Inn. I rented a car and went out and got a new refrigerator because mine went out. It was kind of an ordeal because I had my Humira in there and don't know if it went bad. New frig is working though and hope the Humira survived.

Leaving out in the morning for NJ.
 
IBS isn't much easier to deal with either. They basically say "deal with it" and here is some bentyl.
 
I saw my GP today and he's really good. I found out his wife has UC so I think that he won't ignore me. He put me on Bentyl today and it *seems* to have helped but I also haven't eaten in nearly 24 hours since I'm prepping for the pill cam this morning.

@Sojourn .. its totally bizarre.

We'll see what happens in the next few days when they get the results of the pill. They are also couriering over my slides from the colonoscopy last year and having their pathologist look them over.

@ Amy .. I will always be a Crohnie, even if it ends up being in spirit =)
 
I'm on Bentyl, and that's the treatment I got from some of the staff, but not the GI's or nurses, fortunately (take note of that, I said a word with optimistic connotations, maybe I'm trying to transform, let me go ask my subconscious).
 
i honestly do not think that anyone can fully understand what those with Crohns/IBD/IBS/UC or any gastro problem go through unless htey have it themselves.. not even a doctor/specialist/consultant.

my consultant doesnt even listen to me about my symptoms..he just tells me to eat.. which is hard when ya very nauseaus most if not all of the time. i find it very frustrating going to see my consultant ( he isnt even the one who i am meant to see!) its as if becasue i dotn have summat sticking out of me then i am fine and i can cope with the pain.my GP is far better at helping me than my consultant. i only have to walk into my GP's office and he knows whats up with me.

Hang in there Drew, it'll all be ok in the end :)
 
I think there's a little Crohns in everyone.

Then again, the medical profession calls it stool.

Nice to know your GP is there with some real world grasp of things, even if you don't have exactly what his wife does, or go through the same. Hopefully the slides will do something too.
 
I'm really hoping the pill cam shows what they need this time and hopefully the slides will be of some use. The mental part of this whole thing is just very draining. You sometimes start to think it is all in your head but its most definitely not.
 
Well, all I gotta say about the situation is -
if we took our avatars, pasted them together, it might look like we are on the same beach! "Interesting" how all of the sudden we have the same background there, and taken from the same distance!
(dreeeeeaming....)
 
My Butt Hurts said:
Well, all I gotta say about the situation is -
if we took our avatars, pasted them together, it might look like we are on the same beach! "Interesting" how all of the sudden we have the same background there, and taken from the same distance!
(dreeeeeaming....)
Click to expand...

Haha. That photo was taken last year at the harbour in Anchorage Alaska.
 
I see that Creepy photoshopped the pic so that Drew's looking away as if they're fighting....why'd they break up?
 
For those of you who haven't done the camera, I snapped a pic of it this morning before it went on its Fantastic Voyage (cue Coolio)

2806308430_ba55111af0.jpg
 
SQUEAL!!!!!
Creepy! Thanks for lurking!!

Benson - Drew was staring at my beauty for so long, he got a stiff neck. He just had to look the other way when tourists snapped the pic. Then he was playing hard to get. It worked.

Isla - We don't have to compete. Drew has enough love for all of the ladies in his life. I only need a little Drew to get my fix. I've never had a threesome, but....

Drew - good luck with the pill cam. Smile pretty.


I Drewl for Drew!!

(I'm going away until Monday! Don't let me miss anything!!)
 
You girls crack me up. The pill cam through fine ... so I'm hoping it got the pictures they need to figure this out once and for all.
 
When will you get the results. It took my doc I think a week or so to take a look at them.
 
watch the insane responses possibly come out their mouths: "Well, it may have inadvertantly snapped that bloody shot of someone else's ilieum....hmmm, what's the range on these again nurse?......still, not sure what you might have................." :voodoo:

They better make a quasi-decisive call pretty quick, the evidence should be mounting one way or another
 
I know what you mean Benson. Just look at me - I only have the Prometheus test and response to Asacol and I am labeled with CD. Drew here has a MOUNTAIN of evidence and his doctors are like "gee looks like IBS" - on what freaking planet does that look like IBS? It is scary to think about it and at the same time I feel lucky that my GI now is taking things seriously!

What Drew needs is some attention :ladysman: hehehe
 
I should know by Wednesday of next week. It would have been earlier but the nurse who did the cam for me was out of the office on friday. She gave me her direct number to contact her if I don't hear from her by Wednesday. Whats cool about this place though is that all my records and results are immediately posted online for me to check out and I get an email when something is updated.

@ Benson .. yea they'll be like well .. we saw inflammation and narrowing but you know its probably an infection (thats what my last GI said) ... :voodoo:

@ Isla .. hmm I'm jobless as of Tuesday. I should totally hope a plane to Chi-Town. There is a really good omlette place at O'Hare (always flew through there on my way to Portland from Atlanta but never got to stay in the city) .. oh and I'd come visit you and Benson =)
 
cool. I'd bring a camera and snap shots of you and Isla......(I will now have a reason to PM Butt Hurts)
 
Hahahaha, she would be so jealous though!!! Poor butt groove. Though I am single, so no pesky husband to worry about getting in the way! ;)
 
I went into the hospital after nearly a year and a half of having problems, one CT scan and the doc thought it was Crohn's, inflammation in the small intestine. To confirm they did a colonscopy, then a small barium follow through. When the barium got stuck it confirmed for them I had a major stricture and that it basically had to be crohn's.

Is your disease in the large intestine?
 
Aw, come one! My first day back to work is tomorrow (since June) and NOW you're planning a road trip?? Thanks a lot.
I DO believe that Isla's 8/29 post was a "Drew sandwich"! (If ya' know what I mean) Tee-Hee!! If one of those smileys had pink hair, that would've been perfect!

Pen, I KNEW you were gonna try to get in on this one!! You're a riot!

Send pics Benson, just write "Wish you were here..." across the corner.
 
Drew am sorry to hear about work and really really hope you get a proper diagnosis soon - you desperately need one and some decent treatment!

MBH, Well done that girl for getting back to work! Hope all goes well as you settle back into it.

((hugs)) to you both
 
lol, Jan, she was off for the summer due to school, she's a music teacher....

"one time, at band camp, Drew, MBH, and Isla went into the south cabin one night.................."
 
"And one time, at band camp..." I LOVE that one!
Yesterday was the first day back, and today was the first day with kids.
I didn't poop during school either day! What a time for pred to kick in!!
And I just got the referal number to up my dose from one Humira pen to 2. That'll start in 1 1/2 weeks.
Ahhh.... nice to feel pretty good again. (90% anyways)
I really think the low residue diet is helping too.

Wait a minute - I thought that Isla Drew and I were making a "sandwich", and all of the sudden I get the feeling I'm left out. Is the sandwich special of the week now the Drew, Isla, Creepy Lurker variety?? I think I saw too much flirting on another thread. Crap.....
 
Called the tech who did my pill cam today, good news is that it made it all the way through, they saw it reach my colon. The bad news is that its now being reviewed by a doctor and will take another week or two before the results are known.
 
Ha! Pen - it IS like a soap opera, isn't it??

Good Drew, at least it didn't get stuck.
Sorry it will take so long to get results. We'll just keep you occupied with crazy amounts of flirting until then.

Actually, I'm surprised that it takes so long to get results. After a colonoscopy, the doctor always tells me what he saw that day, and makes the call about how to treat it right then. Hmmm.
 
The reason being is that it isn't like a live feed that the GI's get to watch while the pill goes through him. They have to schedule a time (much like they do for a colonoscopy) to review the 50,000 images. That is a LOT of images and GI offices generally do 3-5 pill cams a WEEK! So imagine all the colonoscopies, upper endoscopies, patient visits AND reviewing pill cam images - that is a lot for a doctor to do.

My concern hoping that waiting the week or two was worth it. It would suck to wait weeks and hear that it is inconclusive or "nothing is wrong with you."
 
Hehe My cam got stuck and let me tell you, I thought I was having a baby when I finally drank a bottle of that guck to flush my system out and pass it. I really did. The pain was indescribable.

Good luck with your results! I hope they figure out something soon to help you feel better!
 
The doctor called today ... duh de duh ... It ain't IBS (no **** .. ) .. She's certain its Crohns given that the inflammation is still there chillin in my terminal ileum like it has been since .. well since I got sick. She wants me to get a TB test then I get to ride the remicade rollercoaster.
 
Yay! You're here to stay!!
Well, you know what I mean - sorry about the diagnosis, yadda yadda, but now you know for sure.
Maybe Remi will do ya' good.

OOOO! Good one Pen - not club Med, but the meds club! HA!
 
Thanks girls. I'm just glad to have a diagnosis with a doctor who is willing to say YES, this is what you have. I'm hoping the Remi will work.

I don't know what I would have done without you guys and your support and encouragement. I probably would have just said **** it and given up trying but knowing that there's a place where people understand what is going on really helps.
 
Isla said:
IBS isn't much easier to deal with either. They basically say "deal with it" and here is some bentyl.
Click to expand...
My last GI said all this, plus "don't vacuum on a full stomach". :eek2: (I have a hiatal hernia too)

I don't know how I missed this thread when I did a search on the Prometheus test, but Drew, I'm glad you have a good diagnosis now. To me, not knowing is almost the worst part. My husband went a year and a half without a diagnosis for his illness (he had transverse myelitis, lesions on the spinal column, which made him numb from the waist down, and retinal vasculitis), and that was sheer torture.

It's a great feeling when someone finally puts things together and starts treatment. I hope you feel better fast.
 

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