Can't believe how much this Hurts

[kitty16]

Hi,

So my husband and I have the same PCP. A woman I like and respect the one who was upset with my Gastro Doc because "why can't he find out whats wrong with you"

My husband had a check up today with her and she tells him how bad she feels that nothing is helping me. That my HIDA scan came back clear. Then she tells him, are you ready, This is probably all from nerves.

Im crushed. So she is implying that I'm doing this to myself. So I've been constantly nervous for 18 months so nervous the tests came back positive for IBD, and MC So nervous that I have D sometimes 15x a day.

I know no one here knows me just what I write, which is usually when I do not feel well but believe me my nerves are in control. Am I overwhelmed by all this confused yes. Do I have stress in my life, sure same as everyone nothing more nothing less.

I have just been appointed the director of our early childhood program. They mentioned how well I cope and handle things.

Ok Vent over. Urge to cry over thank you my dear ones who DO understand what Im going through.

Hugs,
K

PS I have an appointment with her next week believe me she will hear about this.

[Zizzle]

Kitty,
That is awful, unbeleivable! How dare she!?! Did your hubby stick up for you? I am one of the most laid back mothers I know. Yes, I have stress in my life, but no more than the average person. I would freak out if someone blamed all this on my nerves too. This is an IBD with multifactorial, chemical and microbial causes. Stress can be a trigger for some, and surely can make symptoms worse at times, but common!! If she ever comes down with some dreadful condition, make sure you remind her it was all caused by her mental state! Grrr!!! I wan't to come over there and slap her for you!!

[Joefnh]

Hmmm....by that logic ALL illnesses and diseases are due to nerves...the logic here is you are not feeling well, you go to the doctor, lots of invasive tests, still can't figure out what's wrong and yes as a human your nerves will be somewhat on edge...therefore all those years in medical school are useless...everybody is just nervous...

I know that's a bit harsh, but it sometimes seems that way. If I had not pursued a second GI doctor, the Crohns would still not be Dxd...I guess I was just nervous as well

Be sure to thank your PCP for this great breakthrough

Hang in there Kitty, this is too common a description by doctors refusing the science in front of them....even with a pathologically defined disease it still is not accepted as a problem.

[tex]

Kitty,

Unfortunately, the default opinion among medical practitioners who encounter a patient who is outside of their level of competence, is that "it's all in the patient's head". They illogically reason that if their best medical tests are incapable of diagnosing the problem, then the problem doesn't exist.

They never stop to think that the problem might be their own, (and other specialists') inadequate diagnostic skills. Instead, they always blame the patient.

That way, they don't have to blame themselves. IMO, this is necessary for a traditional medical psyche, because if they were forced to blame themselves for their failures, they would eventually lose their confidence, and they would be ineffective as physicians. I feel sorry for them, because they have come to believe that they are incapable of failure, and unfortunately, this implies that they are also incapable of being human, because as we all know, to err is human. This, IMO, is the genesis of the deity complex that so many specialists, especially, suffer from.

I've been told by numerous doctors that my "problems" were all in my head. "Yep, doc, I just decided one day that I would like to have uncontrollable diarrhea, so I thunk it upon myself, and now I like it so much that I can't seem to break the habit."

I wonder if they ever stop to think about how stupid that kind of attitude makes them appear to their patients, who know damn well that their symptoms are not in their head, they're at the other end.

Tex

[kitty16]

HI


OMG Thank you for a brief minute I really felt she was right this is all my doing. NOT

So this is a common comment from doctors. Luckily until 18 months ago when all this started I was extremely healthy and did not see any doctor on a regular basis.

No my husband did not stick up for me because to be honest he, as well as the rest of my family don't think this is a big deal. Until I found this site I really had no one who understood.

Thank you all again.

Hugs Hugs Hugs
K

[Zizzle]

K,
My husband doesn't think this is a big deal either. He totally understands my food intolerances, and the likelihood I have celiac disease, but overall, he doesn't seem to view me as sick, and I'm OK with that. After all, who wants a diseased wife with an incurable disease? And worse, who wants to explain to others that your wife has an IBD with horrible, unfeminine diarrhea? And a high risk of developing other autoimmune diseases? I want to get to the point where I don't feel "sick" either. I'm there sometimes, but it always turns out to be a fleeting few days, or weeks, or even months. MC eventually reminds me it is always with me.

[Lesley]

Kitty,
At this point I am apathetic to what doctors say. My PCP said this week, after her totally ignoring my symptoms and my pain AND after my writing to her, in a moment of total despair, that
a) I have gone off pain pills so the back pain literally cripples me at times; and
b) that having MC, while not life threatening, is like constantly having the worst gastric flu she or her patients have EVERY experienced, but it goes on day after day, month after month; and
c)having acute esophagitis with GERD that keeps me up at night unless I take PPIs which cause MC in the first place

She actually said:
"but I still think you are getting better."
Note: she hasn't seen me for at least 6 months! How the hell does she know that? Clairvoyance?
Amen if she's right!

I do not trust the doctors. I completely trust the people on this board.

[coryhub]

I like the way Tex put it as "outside of their level of competence". My family doctor's first thought was that my gut aches and diarrhea were from stress, and he treated me for heartburn and reflux. He would not take the time to ask me questions or hear what I was saying. It was not until I found my gastro specialist 9 months later that I was diagnosed. It turned out my family doctor's treatment was making me worse. The good thing is that you now have a diagnosis, the bad thing is that the solution to get in remission is not easy and takes a lot of patience, backsliding, & experimenting. Your biological family may not think it's a big deal but your potty-people family knows how real this illness is.

[JFR]

Kitty,

Just want to add my voice to the chorus. Doctors assume it's all in your head when there is nothing useful in their heads. I have a hard time understanding how any doctor can assume that medical science knows everything there is to know about everything, so if they can't find it it must not exist. It's a lonely feeling not to have medical support but at least you have this forum and Tex knows more than any doctor. Too bad he can't write prescriptions and order tests. It really is the medical default position to say it's all in the patient's head. You know better and we will all remind you of that if you forget from time to time.

Jean

[kitty16]

Hi,

Again, Thank you all I was really really feeling sad about what she said. I had no idea this was so widespread among doctors. I will let you know what happens next week when I talk to her I will certainly be bringing this up. I might even request she does not discuss her opinions as to what is wrong with me with anyone.

Hugs,
K

[JLH]

[tnelson]

What? I am soooooooooooooooo angry on your behalf and on behalf of all of us! MC is a diagnosed, medically recognized REAL physical condition! Doctors do not seem to recognize that diarrhea is a real, physical problem! I'm convinced that because most people have had a stomach bug and survived it quite well, thank you, they think a person with diarrhea should just be "chin up"! My doctor wrote in a medical chart--to other doctors--not communicated to me, but I found it when I ordered my records--that I was suffering from stress because I got inordinately upset about diarrhea. When I asked her to add NSAIDs to my "allergic" list, she asked me to "remind her why I could not take NSAIDs." What? She doesn't even remember the LC diagnosis or that NSAIDs were involved. She was the one who prescribed so many NSAIDs that it tipped off MC!

You know, there are not too many advantages to cancer (which my first husband died of, very young, 15 years ago), but one of the few advantages is that NO ONE thinks it's *not* a big deal or questions why you would feel upset or EVER blames it on your nerves!

I supposed we've practically all had some horrid doctor experience, so I'll add mine to the chorus. I had no idea doctors behaved this way, having been luckily healthy my whole life, and as I said, when Dan had cancer, no one blamed his nerves!

I went in to the primary care doctor last year after 3 weeks of non-stop D. I was worried about going in to the doctor, because I was afraid they would tell me it was IBS, but I felt like I needed to get it checked out.

After 2-3 minutes of asking me questions, the Primary Care doc said, "Have you heard of IBS? Have you had stress?" Stress? It was Christmas vacation and NOT as stressful as when Dan died and left me with three small children, which didn't affect my digestion at all!

I told the doc that I did not accept his IBS diagnosis. I just felt it was impossible to have normal bowel function for 52 years, then to get IBS in a matter of days. I then looked up the Rome III IBS criteria and ascertained that I did NOT fit the criteria, and so was safe from the dreaded (for me) IBS Dx. I saw a GI specialist who also floated the IBS idea, but I was firm that I could not be handed that Dx, because I didn't fit the Rome III criteria! They did a colonoscopy a week later and the diagnosis was . . . LC.

At that point, I decided the doctors were best avoided except when absolutely necessary, and I take everything they say with a block of salt.

I won't even go into the thyroid saga, which also involved accusations of self-inflicted "stress." This "stress" cop-out should be banned from medical practice.

Hugs to you.
--T

[kitty16]

Hi,

Thank you all, thank you for your anger on my behalf and for the smiles some of your responses gave me. The sad part is how readily my family is jumping on this. I repeated the story to both my daughters when they came home and they said see we told you it was nothing.

Now please remember I did not complain of having gallbladder pain just asked if the fact that they told me I had stones could mean anything. The doctor sent me for the HIDA scan so why is she being so smug because it was ok. she suggested I try Questran and it does seem to take the edge off the D seems to buy me a little time.

I don't know why I do not respond to any of the medicines believe me I hope and pray every time they give me a new one. If this is from nerves or stress why does it not go away when Im on vacation or out for a happy time. Why would I wake up from sleep with it is sleep stressful or nerve racking.

Oh I could just go on and on with this I must let it go.

Hugs,
K

[carolm]

Kitty, my PCP physician had me eating 30 mg of fiber per day while I was in my first big flare. She was sure I had diverticulitis even though I didn't have the pain others describe. When I lost my first 8 pounds she said "well that's a happy consequence of this, isn't it?" I said "really? Because I'm losing this by laying around... I hope that if I were in the hospital losing weight by laying around, we'd be concerned". Then she looked concerned. Before my diagnosis, I pressed her so hard for a plan that her hands flew up and she said " I don' t have any magic answers". I repeated "if my colonoscopy is clear, what's our plan?" I finally said "i want you to recall the last stomach and intestinal virus you had.. remember it? I feel like that every day. What is our plan?" Then she said "I'll refer you to the GI docs in Salina". THAT is what I wanted to hear.

She also wanted to check me for lymphoma in a year after I had the diagnosis of LC, because LC involved lymphocytes. I've done the research and there is no connection.

The last appointment I had I took the protocol for treating LC with me (I typed it up) and we sat down together and went over it. 80% of it was the opposite of what she was doing.... wrong meds, wrong diet advice, wrong assumptions, etc. Thank God for my GI AND even more for this support group. But the things we go through on our journey to get better....

BTW-- I started my career as a therapist, the first 5 years were on an inpatient psychiatric unit. I religiously taught and used Cognitive Behavioral Therapy. Let me assure you and everyone-- if I could fix this by changing my thinking I would have done it already! And I'd be sharing it with all of you as well.

Go get 'em Kitty.
Carol



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[Gloria]

Nothing makes me more angry with GIs than when they imply that this is all due to stress. Then they want to prescribe stress reducing drugs, which make it worse.

I'm sorry that your family seems to think that you are causing your own diarrhea. It reminds me of when I was throwing up 24 hours a day from morning sickness and my brother told my father that he thought I was bringing it on myself. Really? Yeah, I loved looking in the commode day after day - wait, I'm doing that now! Maybe I do like looking in the commode...

Thank goodness for this board family. We understand; we mourn with you and celebrate with you. We won't let any GI make you feel like you've done this to yourself. How dare they!

Gloria