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Omg!!

WOW I am beyond frustrated and I need to rant!!

I went into the ER today at home because I am having a flare of whatever I have. Well, after the doc read all my symptoms (last week was bloody diarrhea, mucus-y diarrhea; today was urgent diarrhea with vomiting and extreme burning sensation) the first thing he did was ask when I was diagnosed with Crohn's. I told him I never was.

He took the basic blood work (including CRP), all of that was of course negative. And because of that, and the fact that none of my scopes from a couple years ago had diagnosed me, he refused to give me ANYTHING for the flare. He said there is no need for more tests and that I have nothing. He did make me do a random urine sample and turns out I have a very bad bladder infection, so he gave me Cipro for that.

I have been dealing with this for 5 years (i made a typo in the 'undiagnosed club' thread)...and I have always been put on either the combo of Cipro/Flagyl or Prednisone. This is one of the worst flares I've had...I can swear they get worse severe each time.

But of course my family doc that has always treated me is gone for months, and the other one that said he was help wasn't the one in the ER today.

My last option is my GI. I left a voicemail at his office that I want to set up a phone appointment because I am flaring and my family doctor wouldn't give me anything. (He is nowhere near where I live, and being in university and working I can't get the time off to go out there).

I am going crazy :ybatty:
 

Jennifer

Adminstrator
Staff member
Location
SLO
I'm sorry to hear that. Hopefully your GI will be able to do something for you without having to see them in person. I'll never understand why its so difficult to diagnose IBD especially when you have the symptoms and the medications for Crohn's work. It simply boggles the mind.
 
I'm sorry to hear that. Hopefully your GI will be able to do something for you without having to see them in person. I'll never understand why its so difficult to diagnose IBD especially when you have the symptoms and the medications for Crohn's work. It simply boggles the mind.
Yup. I don't get it either :(. My family doc that's gone for month told me she has said 2 or 3 others like me who had all the symptoms of something and all the treatments for it worked but no matter how many times they got tested there was never anything there.
The only thing I lack is significant weight loss but I have too many things that make me hold my weight, like thyroid meds and Celiac. Don't forget the typical foods bother me, too: red meat and most veggies and nuts. I have such a ridiculous restricted diet: gluten-free, low sodium, and Crohn's diet.

I really don't know how much longer I can handle these painful flares :(
 

Jennifer

Adminstrator
Staff member
Location
SLO
A lot of people have to get a second third or even tenth opinion before they can get a diagnosis. Have you tried seeing a different GI doc? Not everyone who has Crohn's experiences weight loss so holding off on a diagnosis for that symptom to pop up is absurd (not on your part of course).
 
A lot of people have to get a second third or even tenth opinion before they can get a diagnosis. Have you tried seeing a different GI doc? Not everyone who has Crohn's experiences weight loss so holding off on a diagnosis for that symptom to pop up is absurd (not on your part of course).
This is my 5th GI but I have been seeing him for a few years already I believe. He's been the only one who actually has said "there is definitely something wrong with you" and he has been trying hard to figure out what it is...I am going to see a 6th GI in May which I've been waiting 2 yrs for the consultation (waiting 13 months for it last May which I couldn't make so rescheduled and couldn't get in again until this May). And by the rateMDs site I don't know what to expect. Very mixed opinions on him. Plus if it takes over 1 year for a consultation how long would a test take?
 
I don't know, maybe once you're officially his patient the waiting times would be 'normal', and the year / 2 year long wait is because his patient list is too long and he's taking on patients on a 'one in, one out' basis?
 
Rebecca, for the tests he actually does himself when he considers then urgent he gets you in within a few weeks. But unfortunately my GI has nothing to do with the CTE - he simply arranges the appointment. I think they are so busy because this type of tests has only been available in Saskatchewan since last January, and Saskatoon is the only city that has the machine and the doctor to perform such a test.
 

Entchen

Chief Dandelion Picker
Eeeeeeek! I nearly laid down on the sidewalk in pain one day months ago after injesting a small amount of.... ketchup. But alcohol? Can't imagine. FEEL BETTER SOON!!!!!
 

ameslouise

Moderator
Ack! Lay off the booze until you feel better!

Hope your GI sees you soon and can get you something to make you feel better! Hang in there!

- Amy
 
...I just love when pain is so bad that it makes me cry :( :frown: :voodoo: :angry-banghead: (there are all my feelings right now)

Sorry that I keep whining about this!
 

allieinwonder

Moderator
I completely understand how you feel! I am on my 4th GI and still do not have a diagnosis. I have an appointment with him next week and last appointment he said I will probably be dx with severe IBS again because he can't find any proof that its an IBD. This is so frustrating. The worst part is I've been in a major flare since last June and I am tired of not being able to function (my husband is tired of it too...he has the day off today and he is very upset that we are not out having fun...I'm in too much pain).

Look at the bright side though: at least you have been given crohn's meds and know they work. My GI says it would be malpractice to give them to me, because he has no proof. I really wish we could sign a waver and get the meds...because this is getting ridiculous. He also is taking me off any narcotic pain meds and is considering taking me off Tramadol as well; he says its also malpractice to have me on pain meds when there is no proof....:(
 

allieinwonder

Moderator
Oh, and I forgot to mention I completely understand with the ER....I have gone there three times because of this flare and have been sent away with only pain meds. This disease doesn't make you look sick, so people don't seem to take you seriously...trust me, we don't feel the way we look!!!
 
That's terrible, Allie! All my other for GIs and my 2 other family doctors are the same attitude that basically if it doesn't show up on tests even years ago I don't have it. Obviously a body changes quickly.

I got some ridiculous and frustrating news yesterday.....
Firstly, I cannot see my family doctor that treats me until March 10th. I cannot see her next week because it is when she is just getting back to the office. So I most likely have to deal with this awful flare until then. I literally can't eat. The more I eat the MORE I lose via mucousy Diarrhea. Sometimes in a very short time after. I almost had 2 accidents today at work just from eating something for dinner. I'll just try sandwiches next. I'm getting so hungry and losing weight slowly but surely. Luckily I got the weekend off due to extreme cold/flu.

Secondly, I got in touch with my GIs receptionist. She said normally he does not do telephone appointments but she will talk to him about it. If he prefers to see me they are already booking into April. Not cool. Also, this is even more disheartening info: know that CT Enterography I've been waiting for since February 2010? She found out for another URGENT patients that it is ANOTHER 6 TO 8 MONTHS...at least. May be LONGER for me (not sure when this other lady was referred). Apparently they now do the test in Regina so she was to make some phone calls and if she can get me in sooner she'll transfer my test here. If it is longer I will have to keep waiting. So much can change in a year.....
 

allieinwonder

Moderator
I always seem to get better once I am finally getting into the doctors office >.<. I don't think that will be the case though next time, because I am developing a mouth sore atm and I have been having lots of abdomen pain. I'm sort of hoping I am bad enough to get emergency care once he sees me so that they realize this is more than IBS...that sounds terrible once I write it down. >.<
 
Doesn't sound terrible at all hun, I feel the same way from being so tired of negative results. I want it to show up SOMEWHERE. I'm getting tired of the IBS story, too.
 
Oh my that sounds horrible that you have to wait that long to get to see your doctor or just get a test scheduled. I hope that they can make some exception since you are not well.
 
Thanks, Jenn. I will keep pestering my GI to get me in SOON! I'm pretty sure he won't give a prescription over the phone though, sadly.. my good family doc will. 18 more days to survive without stomaching food :/
 
well that's a first, I actually had a dream about going to my family doc and crying for her to give me Pred, enough that I can treat the current flare and have some to spare for the next bunch :X. Wow...
 
I did myself a poopie thing (no pun intended)...I was having one of those "don't care" days in frustration and I went and ate a can of corn and had a drink. I'm so stupid :(. Didn't think it was possible for the flare to hurt worse than it did before...
 
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