I am beyond mad right now!

[Ihurt]

ok, I just had to vent. I am so pissed( excuse my french). I have been having issues for little over a year now with intestinal pain, cramping , feeling awful all the time. I had a 2 month break where I felt good. Then it all came back. My GI doctor has only done blood work, and stool cultures which were normal. Here is the thing, I am feeling so bad that I want to get in to see him sooner than my Nov7th appt. I call the nurse yesterday morning and she gets back to me 10 minutes ago. She tells me my GI doc is out for a month on vacation in Africa! OK, so I explain to her my issues and she says " well, if you have a fever or any bleeding in the stool you should immediately go to the ER". I then tell her " I just want to see another doctor there maybe get an appt. as soon as possible." She says " well it would be best if you went to your regular doctor and let her asess you to see if you need to get in to see a gasrto". At this point I am starting to get really annoyed. I tell her that my regular doctor is just going to tell me to see my gastro since this is a GI issue, HELLO!!! " My regular doctor is not even affiliated with the hospital my GI is at. Well the nurse then says that I could have my doctor call them and tell them I need to be seen and then they may be able to get me in for an appt with one of the other GI's there.

First off, I am beyond mad. You would think if a doctor goes on leave for a whole month he would have someone who is sitting in for him or taking his place. WTH! I even told the nurse that in my stool I see little tiny black specs( it looks like pepper) throughout my stool when I go. I am not sure if it is blood or not. I always thoguht that blood would change the entire stool to a uniform black color. My stool is brown just with little black pieces( like pepper) in it. I tried looking at it( I know gross) with a q-tip but it just looked like a pepper flake. Anyhow, this nurse says that well, I am not sure, it could be dried blood or a hemmroid. OK, NO it is not a hemmroid. The blood from a hemmroid is usually bright red and it is usually fresh and not mixed all thoughout the stool in the form of little pepper looking flakes! Shouldn't this nurse know this?? My god, I just want an appt for Gosh sakes.

I called my regular doctor and talked to my nurse( she is wonderful). She is going to see if she can get a hold of my doctor( she is off until tomorrow) and see if she can call the GI office and see if I can get an appt. I am so frustrated. I feel awful, I just want to find out what is wrong and get some help. I tried to explain to this nurse that I did not have $2,500 to run to the ER. I have a HUGE ER insurnace payment and deductible. I swear if this was not one of the best hospitals here in Chicago, I would just check out and go somewhere else, but then I would surely have to wait longer to get in to someplace new. Thanks for listening, I appreciate it.

 

[Trysha]

Hello Ihurt
I share your pain.
It is absolutely incomprehensible that the nurse in the GI office is so uncaring.
Also, how any specialist would take off for foreign climes without making arrangements for patients with existing appointments is totally unacceptable.
If he is attached to a university hospital I would be inclined to get in touch with the hospital administrator and explain the difficulties this has placed you into.
If you do not want to take this route, and it sounds as if you have a very caring nurse with your regular doctor then let her sort it out.
I am sure you will get a GI appointment through your regular doctor.
Feel better soon
Hugs and best wishes
Trysha

 

[Ihurt]

Trysha, Thanks for the support. Yeah, I called my regular doctor and hopefully by tomorrow I will at least be able to find out if I can be seen soon. It is unreal that a GI doc would not have someone else covering for him knowing he was going to out of the country for a month. This is a top hospital here where I live. Like I said, I am tempted to just go somewhere else, but I realize that I would have a bigger wait and I do not really want to have to transfer all my records and so fourth. I like my GI doctor, he is really nice and all, but this seems so unprofessional. I mean to have a nurse call me and listen to my symtpoms and tell me to go to the ER or my regular doctor is beyond stupid. Thanks again for listening to me vent and for the support.

Hello Ihurt
I share your pain.
It is absolutely incomprehensible that the nurse in the GI office is so uncaring.
Also, how any specialist would take off for foreign climes without making arrangements for patients with existing appointments is totally unacceptable.
If he is attached to a university hospital I would be inclined to get in touch with the hospital administrator and explain the difficulties this has placed you into.
If you do not want to take this route, and it sounds as if you have a very caring nurse with your regular doctor then let her sort it out.
I am sure you will get a GI appointment through your regular doctor.
Feel better soon
Hugs and best wishes
Trysha

 

[Securitydude1979]

Isn't the system wonderful? Doctors take an oath to help people, but isn't it funny how things work out better for them than their patients more often than not?

You're absolutely right; he should have someone covering his cases & seeing his patients while he's out if the country (or for any other reason he wasn't seeing/treating them. If he got seriously ill & took a medical leave of absence, are all his patients just screwed?). That's ludicrous.

Regardless of whether you see him or someone else, there's no reason why you shouldn't be able to call the office & say "I'm having issues. Nov. 7th is too long for me to wait." And not everything is always emergent. We know that from all we deal with with this disease. Just because you don't want to wait another month or more to be seen, doesn't mean you need to go to the ER. ER's are notoriously slow, and the chief excuse is because people who don't truly need emergency care go there and clog the system. Yet they tell you that's what you should do? Good grief.

It sounds like the crux of your problem may be with the nurse or receptionist or whoever answers the phone there. Did you truly speak to his nurse? When I need to see my GI & call the hospital, I end up talking to centralized scheduling. They're useless lol. If I call his office directly, that receptionist is a LITTLE better, but if I really need to get in sooner, I call his nurse practitioner or physician's assistant on their direct lines. I end up with an appointment in a week or two. Sometimes sooner if the situation warrants. Once they saw me the following day. They added me to the schedule at the end of the day, which was greatly appreciated. Keep in mind though, I've been seeing the same GI for almost 15 years now so they know me well.

Just playing devil's advocate though, are you sure the issue isn't with the dr or the practice he's with? How do you feel about your GI? Does he listen to your concerns & is he helpful? If I had issues for a year & all he did blood work & a stool culture, I think I'd be ready to look for a new dr. When was your last colonoscopy or imaging study? I have a colonoscopy every two years whether I have symptoms or not. Just as a precaution.

And you're absolutely right about your GP just referring you to the GI. Mine dies the same thing. Matter of fact, since I have several other health issues in addition to the Crohn's, I specifically chose my dr because she specializes in "internal medicine". But in the 7 years I've been seeing her, if I go in there with anything more than an ear infection, I'm getting referred to some type of specialist. SMH....

 

[Ihurt]

Securitydude1979,

Thanks for the reply. Last time I was there I found out his nurse had left and went to a different department. So I got a call back from this new nurse( she is handling his patients now). Mind you, this is at one of the top hospitals here in Chicago IL where I am at. I have not been diagnosed yet. I have not had any test except for the blood and stool tests, oh and my regular doctor did an abdominal ultrasound. They were normal. The GI doc is good, I think he is just reserved when it comes to doing tests due to me being sooo sensitive and also I have other health issues that complicates things. He keeps saying IBS. I think it is time to take a look though as I feel I am getting worse. If I tell him I want a colonoscopy, he will gladly do it I am sure. I am just mad that he has no one filling in for him while he is out of the country for the month. I actually asked the nurse if he had a doctor covering his patients. She said No. SHe said that his pateints get sent to her and she will asses their situation by phone and go from there. Yeah, she was no help to me at all!!! Like I have $2,500 to fork over for an ER visit, which I am certain they will take blood, and maybe run a quick CT scan and send me on my way telling me to see my GI doc!!! I mean it is unreal.

I did think about getting a different opinion, but I hate to do that as I will then have a long wait for sure being a new pateint. Not to mention I would have to transfer all my records from there. I have a long list of other health issues so I kind of want to stay there. I have not been diagnosed with crohn's yet, but I would like to stay with this hospital as it is the ONLY one here that has top knowledge about this disease. They even offer stem cell transplants for severe crohns patients. They are a huge teaching hospital so I kind of like that. I am just mad that I am getting the run around here.

I am praying that my regular primary doctor will be able to call them and get me in sooner that a month from now.... I really do not want to go to the ER. I mean I would only go there if it got unbearable. I just cannot afford the ER fee.

Thanks for responding, I really appreciate it...

 

[tots]

I used to work for a bunch of Drs. They ALWAYS leave a Dr on call. Usually for emergencys- if they are gone over a weekend. When they are gone that long they are responsilble to have their practice covered. That nurse was being lazy!


Make sure you let your Dr know when he gets back from his vacation- no doubt you and all his other patients paid fopr that vactation. He needs to do better next time he goes away!


Lauren

 

[Ihurt]

Hey Tots,

Thanks for the reply. Oh I definitely am going to tell my doc when he gets back. You cannot even imagine how much crap I had to pull to get in to have an appt. The nurse finally got me an appt after my regular doctor called and got on her. But get this, now this is where it really gets good. The nurse calls me and says she got me an appt. for Tuesday. Great, thats fine with me. I then go am google the doctor by name under the hospital directory online. This guy is NOT even a certified gastroenterologist!! He is certified in internal medicine, but from what I read, he is like in his fellowshop to become certified in gastroenterology. Now I am thinking, he does not have the experience that my gastro who is on vacation has( my gastro has over 30 years). This guy is a newbie!! I mean he is not even really a gastro yet. Now I am in a quandry. There is NO WAY IN HELL I am letting a newbie or practicing do any invasive tests on me!!! I am so aggravated by all this and it has put so much undue stress on me. This should NOT happen to people who are sick and trying to get help in my opinion. I mean i have been with this practice for over 8 years! It is not like a am a new patient in their facility.

 

[tots]

IHurt-

Maybe seeing a Dr who is in his Fellowship is not so bad.

The new theory is to use a "step down" approach. Aggressive treatmant right at the get go. Then taper your meds to what will hold you in remission. Gets you in remission faster. Maybe a "newer" Dr is more willing to use some of the newer treatmants.

I dont know- it could be worth a shot.


lauren

 

[Ihurt]

Hey Tots,

Thanks for replying. I have not even been Dx yet! I have not had any tests except for stool test and blood work.

I am a bit concerned though. I was looking at my past lab work that I had done over a year and half ago by a nautropath. I just happened to come across the comprehensive stool test he did and he did indeed check for something called lactoferrin. Mine was high. It was at a 3.7 . The naturopath did not even say much about it, just that he thought I had overgrowth of yeast.

I am reading that a high fecal lactoferrin test means likely crohns! This scares me. I remember asking my gastro doc about this stool test and him telling me it is not reliable, but everything I google about it says it is a good tool for diagnosing crohns and UC. Now I know I do not have UC as I do not even have diarhea. With UC you always have diarhea. So that leaves crohns.

I am just so pissed right now that I have been screwed around here and not taken seriously at all by my gastro doc. I am so fed up with western med doctors! I have a lot of other health issues that I actually ended up diagnosing MYSELF!! I had to be my own advocate and finally demand tests that I needed to get a diagnosis for my bladder issues ( IC). I mean isn't this the doctors job???? Now I am having to deal with the same thing with my gut issues. I am going to demand a few tests when I see this new guy on Tuesday. I just am going to make sure I am having a certified Gastro doc doing the actual procedures. Thanks again for the reply and support. I just want some amswers and help. Just to think if I have had crohns all this time, I do not even want to imagaine the damage that has already been done. I am not a candadite for surgery either as I am allergic to most ALL antibitoics and meds. I also have MCS ( multiple chemicle sensitivity). I have severe reactions to most ALL drugs. So looks like I will be literally screwed as I do not do well with meds at all.

 

[tots]

I am really sorry you are having such a hard time!

Just as an example- I was diagnosed at 28, I was working for a
grp of 22 Drs. I was so flippin sick for months. To a point of if
I even drank water I hard to run to the bathroom. Lost 10
lbs in 14 days. Had a colonoscopy and EGD- negative Finally
Had a small bowel series. The barium went through me in 15-20
min. I am not kidding. Showed acute ilitis. My Dr gave me a
bunch of meds- prednisone being one of them. I ended up in
The hosp that night with a stricture. Hurt like a bitch. Having
My kids was easier!!

So I feel for you- listen to your body and rember you are your
own best advocate!!

Lauren

 

[Ihurt]

Wow lauren, that is horrible what you went through. Did the prednisone cause the stricture?I thought it was suppose to help. How did they fix it? How awful you went through all that. I was going to ask the GI to do an MRE of my small bowel. Do you think the small bowel series would be better, more diagnostic?? I am thinking a lot of my issues are in my upper gut. I do not have chronic diarhea. For the most part I am either soft or I can have soft stool mixed with hard little ones, and sometimes they appear normal. Pain is my biggest issue. There are times when I am literally just sitting with the heating pad all day. I also will get that feeling of cramping and getting the feeling like I always gotta go, but only usually go once a day or every other day. It varies. It is horrible that you had to suffer so bad for so long( and working in a doctors office for that matter, you'd think one of those docs could have seen what was up). How long would you say you had symptoms before you were dx? I have been suffering for well over a year on and off. The odd thing is that I had the fecal lactoferrin test over a year and half ago and it was elevated, the odd part is that I was not having any symptoms at that point. Not sure what that test means though. Anyhow, thanks for the reply and I am sorry of all you have had to go through.