Just need understanding

[Jer's Girl]

I know I hardly need to tell you all what having Chronic illness is like, so I won't go on and on. Basically, I feel like crap and my Dr's office is blowing me off. Apparently, after months of begging for them to do tests, the tests have all come back looking fine, I "don't look sick" and they are done dealing with me. I finally begged them into making me an actual appointment with my GI for next Tuesday, but I fully expect that they will just tell me that I am fine then too.

I have been horribly bloated and constipated for months, and can only go about one a week, if I take a load of laxatives. I am nauseous all of the time, sometimes throwing up. I am not in a ton of pain, although I do get stabbing pains now and then.

This is for sure not the worst I have ever felt, but I feel distracted at work and afraid because this is how all of my problems started that lead to my temporary illiostomy two years ago. They wouldn't listen to me then either. A block has been ruled out by CT scan, but I still feel horrible.

I went to the ER to get my CT done because my GI wouldn't see me or order the test. I went to my primary care Dr and asked them to do some tests to see if it was something else besides my Crohns, and he refused to do anything saying that I looked fine and that I really just needed to see my GI (duh! But he wouldn't see me!).

I finally threw a fit at my GI's nurse who has been blowing me off for months and asked why she wouldn't just put me on the schedule. She said that their next appointment was in October and she couldn't schedule for October until next week! I cried on the phone, and finally she got me an appointment for next week (what? So I have been begging her to get me on the schedule for months, and all it took was having a nervous break down to actually get an appointment? That's just flipping wonderful).

Anyway, I know many of you know how it makes you feel to be treated as if you are crazy and and fine when you feel like crap. I just really wanted to vent to people who actually knew how this feels and hear your story's so that I know I am not alone.

 

[Jennifer]

Glad you were able to get an appointment with your GI. Sometimes it feels like the nurses and receptionists are total dips. Let us know how it goes and be firm! Having to take laxatives all the time and going once a week with vomiting is not normal!

My sort of similar story:
My prescription for 6MP didn't have refills on it early this year (that's my GI's fault). I called the pharmacy and they called the GI. Called the pharmacy again and said they have heard nothing. Called the GI office and they said they hadn't heard from the pharmacy. Called the pharmacy and they said, "did too" and refaxed the refill request. Called the GI office said they didn't get it. I asked for their fax number to make sure they had the right one. Bitch almost didn't give me the fax number as if it were confidential or something. Got it and confirmed with the pharmacy saying it was the correct number they had been using all along. They faxed it again. Called the GI office and asked to speak with my GI, she said she would try talking to him and that I would get a call back. Hours later, no call back. Hadn't taken my med for days and all that calling back and forth was done in one day.

Finally called the woman who deals with referrals and asked her if my request for a new GI has gone through. She said he's the only GI she knows of and asked what the problem was. I got so over dramatic over the phone it was hilarious! I told her that he was trying to kill me because he wasn't refilling my meds. I was crying while I said that. I went absolutely bonkers. She said that she would handle it and if I hadn't heard anything within a half hour to call her back. Got a call from the pharmacy not 10 minutes later saying my prescription would be ready in 15 minutes. The woman from the referrals office called me 30 min later and asked if my prescription was ready. I said yes and thank you.

Picked up the prescription and it had refills on it too.

I guess she tore the receptionist a new one and maybe even my GI. I don't know. All I know is that the woman behind the referrals desk is all business. You don't want to be on the business end of this lady. Least I know who to go through from now on. Maybe some day you might be able to give it a try.

 

[nicole.harrison]

Hi Nicole

I'm Nicole I want you to know I'm pretty much going through EXACTLY the same thing right now. I know how you feel. It's like no one takes you seriously... 'the tests look fine' and yet i feel so horrible.
I have problems with constipation as well, not the typical 'crohn's' symptom!

Feel free to message me whenever, it would be great to hear your story because you sound incredibly similar to me

xxx

 

[Jer's Girl]

Thanks Crabby for sharing! It is just ridiculous how many of us go through this sort of BS, but at least we are not alone!

 

[Jer's Girl]

Thanks other Nicole! Haha! How are you these days with your chrohns? I'll message you and say hi.

I used to be a typical crohnie. For years and years I had the dreaded D. I used to think people with C had it so easy. Yeah right.

Now it is like my Crohns has completely changed in the last few years. I am told I am not typical as if that is some sort of prize, and that I look too healthy to be sick. Awesome. Then why does my stomach feel like it has been kicked from the inside?

 

[tots]

I know how you feel!

Like as if we all want a disease thats only acess is your #$%!

Treat us with dignity, respect and EMPATHY!

Is that really to much to ask!

My Drs partner "forgot" to see me in the hosp a few months ago- they sure as heck dont forget my co-pay!!


Lauren

 

[Gculk]

Huh,

What's it like to have chronic illness?

It's great. I'm not dead! That's more than enough for me.

What's it like to have to deal with the medical system?

If I knew I would never experience worse effects than pain, I'd rather not bother.

Between the manic-depressive doctors who one day think you've got IBS, the next appointment, throw 'oh dear, sounds like Crohn's to me', then when they get your file, 'Oh, every past test was clear, just like you said not 30 seconds before I said it sounds like Crohn's, must be IBS'.

Oh, and this is the good doctor! The bad one?

LOWER RIGHT PAIN!? MUST BE APPENDICITIS. Nope? Well, ok, take it easy, come back if you get any worse.

-Three months pass
I'm still having problems, and now I'm passing blood!
You're having problems again?
No, STILL!
You weren't here in three months!
You told me to come back only if it got worse! It's worse! And I'm shitting blood!
As far as I'm concerned, if you're not in my office for three months you're better!
-I have a bit of a breakdown, cry a bit from frustration
Well, are you sure you're not just depressed?


God, I'm in pain all the fucking time, but here's the thing. I don't give two shits about that. If I had to choose between having this pain, all day, every day, or have to go to doctor's appointments once a week, I'd probably pick the freaking pain! At least I never feel like a tool because I'm in pain.

I go to the doctor because I know that pain means something bad, but because I am a tough shit that, if at all possible am going to make my visits conversational and honest and friendly, no matter how shitty I feel, they don't see me deteriorate, until it gets to the absolute worst that I get to, and I literally fall asleep in the chair waiting for the doctor to come.

Sorry for the novel, got a bit carried away.

At least it was honest. I don't know if I understand your situation. But I understand that you have a situation.

You aren't alone. Thank god I'm not alone, because sometimes I feel nuts. Then I get my hand out of my crotch, because acting like that isn't for polite company.

Feel better, or whatever
Nathan

 

[tots]

Nathan-
You live far far away but, I think we see the same Drs!

Lauren

 

[Gculk]

You're probably right! Must be all the jet-lag frying their brains.

Nathan

 

[teach28]

Nicole-

I was recently unhappy with my doctor too. While he was not as bad as yours, I was not happy that I STILL wasn't on any kind of treatment plan after almost a year of visits and tests!

I decided to find another GI and thought I would have better luck there. When I called to get my records released because I was going to a new GI, they asked why I was leaving, so I told them exactly what my problems were. (In my case, part of my problem was that I didn't speak up and be perfectly clear what I wanted.) So, I decided to give my GI one more chance. He is a really nice guy and he was very attentive when I went in. He could see that I was worried and slightly miserable. I almost broke out in tears a couple of times when I was sharing my frustrations with him. In the end, I'm glad I went back.

I realized that I just had to stand up for myself more and tell him exactly what I wanted. If I wasn't happy with what happened, then guess what...there are several other GIs in my city and near by. If I'm going to spend $70 a visit, then I'm going to get my money's worth!

It's definitely shitty what you're going through!! Have you considered trying a new GI?

Sarah