I need to vent.

I was diagnosed with UC in the year 2003. I was on medications for several years and finally had a series of 5 surgeries to help my condition. My takedown was January 7, 2011. Like most of you, I am experiencing a lot of pain using my j-pouch and dealing with the leftover disease in my body (2 centimeters). I am having problems and cannot get the care I need in Delaware. After two GI specialist in this area, I finally got the insurance to approve me going back to Johns Hopkins. My appointment is next Thursday.

Here is where I am losing my mind! I went to both offices to get any medical documentation for my visit next week. For some reason, I decided not to read any reports until I got home and out of the car. The first GI recorded the following in her report:

My symptoms…then, “my impression, after interacting with her several times during office visits, is that she has anxiety and likely has another emotional disorder and/or personality disorder. Psychologic issues are likely impacting her sense of well-being. “

You got to be kidding me. I had two abscess, severe dehydration, leak in my pouch, my organs pulled out due to incurable disease… BUT I HAVE A PERSONALITY DISORDER.

Any comments to help me get through the week would be greatly appreciated.

I know once I get back to Johns Hopkins, my doctor, Dr. Sharon Dudley-Brown will not have this opinion.

I am not sure of the whole story, but my father recently told me that his father died of colon cancer in the fifties because he was left untreated. First, the doctors sent him to the insane asylum, then, later discovered after his release that he had colon cancer. This was in Delaware.

Surgery 1: 9/2009, Surgery 2: 12/2009, Surgery 3: 2/2010, Surgery 4: 3/2010, Surgery 5: 1/2011

what can I really say. Sorry? What a moron! Doctors need to suffer a little themselves before they can be qualified to treat patients who suffer. Seriously! Best of wishes with John Hopkins!

Tanya

MY retired GI doc used to sometimes note 'self imposed anxiety' is his medical notes about me. Well..... if you were not able to hold in your crap and worried wherever you went if you were not within a close run to a bathroom (and God forbid someone was utilizing it), you would have a humiliating accident in public.. you too would have anxiety..self imposed????...that is like saying I was responsible for creating my disease.

My experience with 90% of docs is they are literally prescription writing pill pushers and nothing else.

It's my opinion that most people that have lived and suffered with any chronic disease experience anxiety and depression as a result of their physical ailments. I also know that great stress can cause flares in ppl with autoimmune diseases, so I do believe it can be a bit of both and I'm a big advocate of patients with chronic physical disease getting treatment for the subsequent depression. However, I completely agree that some physicians think people are being dramatic when they are just being honest. For years, I suffered and lied to my docs because I didn't want to be labeled a complainer. In my notes, none of my docs said anything about my anxiety/depression except when I mentioned it and asked for help, so I guess I was blessed with good docs??? But I also suffered (mentally) for years b/c I was too scared to talk to them about it for fear of being labeled.
So, that said, your doc kinda sounds like an ass for not listening to you and not being compassionate. If he saw how stressed out you were, he should have tried to help you deal with that on top of your physical pain.

Well, I guess you can interpret the note anyway you want, but the fact that he documents a pattern after several encounters with you as being anxiety, does not mean he is diminishing your suffering. Keep in mind, your doctor sees a great many patients in a day, often with similar symptoms. Often, what can set us apart is how we cope withour symptoms. Anxiety absolutely has an effect on our overall perception of how we feel, andjustmakes things worse. So, it is important to recognize anxiety where it exists, and deal with it appropriately. It does not diminish your other symptoms. In fact, it makes them worse.

Even if you were not anxious before, it does not mean it cannot develop later. It is a common component of chronic illness.

That said, he still could have just been not very perceptive too.

So, try not to be offended by the assessment.

Jan

Magic30: You're correct...those who suffer with pain truly understand...thanks!

kjeane: I agree with you. Yes, I do have a level of anxiety because of the evacuating on myself publicly. And, the lack of control I've had since my initial surgery. But, I was hoping the GI doctor could bypass the tone in my voice and recognize I had a true complaint that needed to be explored.

Lizz: I am empathic to your situation. I, too, have tried to keep a lid on it because I feared being told that I am a hypochondriac. However, I am so desperate to live a day with tolerable pain, I am relentless. I guess this could upset some doctors that do not have resolution.

Jan: You are correct and I am working on not being offended, but moving forward. I know my anxieties are running higher than normal, which does make my situation worse. I am trying to relax, not let it affect me today, and count my blessings for the care I am going to receive next week.

Thank you for all of your responses. I have great family support, but enjoy reaching out to others who are having similar experiences.

Faith...maybe it is time to try a different state..Delaware does not seem to be working out that well for your family
Sharon

This message has been edited. Last edited by: skn69,

Hi Faith - One of my doctor's gave me the same assessment about 3 months after my takedown surgery and 2nd abcess. I was in a tremendous amount of pain, all the time, which really got me down because I wondered if it would ever go away. During a doctor's visit, while explaining this, I broke down crying and he finally asked me, "Do you think you could just be stressed out a little?"

It was the first time I acknowledged that I was. Afterall, I just had my guts taken out and hadn't had a pain free hour in over 3 months. I wasn't necessarily worried over MY situation, but worried for my family, for the welfare of my wife and kids while I was trying to still go to work and make a living and make sure they had a good life.

Thank God for drugs though. Vicodin, Valium and a whole lot of antiboitics were the only things that got me through. At first I was embarrassed for some reason to say I was in pain and needed the meds - for pain and/or anxiety. Social stigma or upbringing I suppose. But once I accepted the fact that I needed them and that's what they're there for, I embraced them and was not ashamed. It was extremely liberating and I didn't feel bad or like a "druggy" when I told my doctor my pain was intense and I needed more pain meds.

This was about 5 years ago and today I'm able to manage my condition through diet, exercise, prayer and stress management. I still experiment with food to see what works and what doesn't. Lately I've been on this apple-a-day kick that seems to be working well. I don't take pain meds on a regular basis anymore, but every so often will need them if I'm experiencing several BM's a day, usually due to diet or stress.

Hope this helps Faith! Take care of yourself and think positive thoughts!! You can get through this! Don't look at what you don't have, but instead of what you DO!

I accept Jan's point-- to a point. FOr a GI (not a psychiatrist) to suggest or diagnose a personality disorder when a patient has under gone what you describe having endured, seems cavalier and dismissive. Did she discuss it with you and talk about how pain can be excaerbated by anxiety, did she you refer you to a psych who specializes in people with chronic illness and pain? If not than I think that type of note is irresponsible. If she feels it was worth noting than whydidn't she discuss it with you? I sometimes think when a Dr. doesn't have an answer or can't solve the problem than suggesting anxiety disorder is and easy answer to what is going on.
I am not trying to get you worked up, the best thing is to move forward and it is great that you have faith in your Dr. at John Hopkins. I was a shell of my normal self when I was sick and in pain and once the pain was gone and illness was addressed, I returned to my usual self. Sure anxiety can increase pain but pain causes anxiety and it is a vicious cycle.
I hope things go well at Hopkins.

Sharon: You're too funny =) Funny thing is my dad's side of the family has been in Delaware so long, my great, great, great..so on grandfather was the signer of the Declaration of Independence for Delaware...been here an awful long time

Brian: Thank you for sharing your story. Yes, I am in the stage where I am so scared financially. While I was hospitalized for my surgeries, my ex-husband divorced me and took everything. I have no money, living in my cousin's basement, and not working more than 15 hours a week. I had several nights crying and thinking I am 43 years old, how am I going to provide a home in the future...how am I going to keep myself from living on the streets...how am I going to provide the insurance to keep me stabilized. Also, I am reluctant to ask for any pain medication. Some days I wish I had something to take the edge off after several BMs. Despite all of this, I know once I get a handle on what is going on, I will be strong and accept today.

I did not really elaborate, but my frustration with the doctor's comment was based on her actions. Each visit she would sit there without responding and not run any tests. At my visit, I told her my recent scope was positive for pouchitis and cuffitis. She told me to stop taking Canasa and thought antibiotics would do nothing for me. I don't want to discuss too much...you all know the story...we've all had our battles in the doctor's office.

lk: No, she did not refer me or discuss this issue with me. I stumbled across it when I read her clinical notes yesterday from a copy I requested. Each visit or phone call she would ask what do you want me to do, but never offered solution. She did prescribe antibiotics, but because I begged her. She did finally perform a scope, but, again, because I pleaded with her. And, pain medication, forget it...that was not even an option. My second GI doctor scheduled a MRI and that report does show fluid similar to a report in October 2009. During 2009, I did undergo a procedure to drain fluid. The second GI never discussed this finding. Again, I stumbled across this information after reading reports I requested. I have a call into my Johns Hopkins GI to ask her about this report. I am waiting for her to get back to me. It is my guess that I have an abscess and had it now for over 8 weeks.

Again, what a relief to hear your voices. Thank you! =)

Yeah, some doctors are just plain lousy with dealing with anything outside of their realm of expertise. They are uncomfortable discussing it or even acknowledging a need for intervention by your primary doc or another specialist. Documenting it in the record and nothing else is sort of a cop out. I would guess that he was afraid to mention his observations out of fear of making things worse.

Finding a doctor who really listens is tough. Hang onto one you have rapport with.

Frustrating, to be sure.

Jan

Fatih,
Can I put my 4.3 cents worth in? (inflation!)
You have been through disease (and not the least uncomfortable on the planet) you have had surgery after surgery, drugs, accidents, urgencies in public places, cramps, leaks, drips and splashes not to mention pain, pain and more pain...so, just curious...but what on earth does your doc think???? That we come out of this without a touch of trauma? That we all breeze through these things without some major PTSD? Anyone (and I mean anyone) who tells me that everything is great, never had a tear, stress or a major wig-out is heading for a whopper!
Panic, fear, stress, tears, depression etc are all part of our healing process...We have been ill, druged and amputated...not to mention walking around in front of our loved ones with a bag full of excrement hanging off of our once perfect little bodies...we have missed our kids' birthdays, our wedding anniversaries, and a plethora of holidays and happy occasions and spent long evenings not being able to go visit friends and family let alone movie theaters and restaurants....WHY oh LORD, does this doc think that you have a personality disorder (unless of course you want one...in which case...go ahead, you deserve it )...you are just trying to survive the day to day life of a woman living in hell...
If he has any doubts...Send him to Mexico for a healthy dose of Montezuma's revenge and then lock him out of the bathroom, make him wipe with sand paper and deny him pain meds...And then let's see if he doesn't come home in panic with a major personality disorder himeself!
Sharon

To me, the issue is not what this doctor's observations were, but the fact that he did not choose to pick up the ball and run with it. What good does it do to make an assessment unless you address it? Having insight into your mind-body connection cannot take place if you are not entrusted with the information.

Sometimes there is little we can do other than understand what is going on with us, but understanding all by itself can often help reduce anxiety and depression. But, more typically, if the symptoms are disruptive enough, medications can be really helpful, even if we have great excuses and/or reasons for our behavior or emotional responses.

Your not crazy or a hypochondriac...you're just traumatized!

Jan

There are medications for anxiety, like3 Xanex and it's generic is cheap. There are also medications to help with depression. You can have situational depression, caused by all of the trama in your life and body, which does not mean you are mentally ill.

I'm thankful right now that my doctors have recognized this and I do take a daily antidepressant and anxiety medication when needed, which has been more since my operations.

We all have different health situations including having more than one problem. I have more than one problem and have started the process of filing for disability. I mention this because your ex wiped you out and if you are barely able to work 15 hours a week it might be the time for you to consider disability too. You are not a failure your body has failed you.

I'm glad you are getting to a real professional!

Dear Faithnwill

I work in Mental Health and Addictions and after reading your post the Doc that indicated you have "a personality disorder" is definately way off the mark. Unfortunately, when some Doctors don't know what to do they sometimes blame the patient rather than simply saying I don't know what to do next. Following my surgeries I went through and still at times go through PTSD symptoms and anxiety. You have had a major part of your body removed and gone through pain that most people except those in this group (and others with painful chronic illnesses) can't comprehend. For those of you who have had babies - which pain was worse - labor or the surgeries on your colon? I can remember times when I was desperate not to be written off as "it's all in your head" by the current Doctor. NO Doctor it was not all in my head - most of my stress/anxiety is because of your insensitivity and because a chronic illness sets me up to have a higher risk for depression and anxiety - not personality disorder. Anxiety and depression is not a character flaw; it is a normal reaction to abnormal life circumstances. Personality disorder is a completely different mental health issue on a completely different axis of the DSM IV! What I find irritating is that for some reason no one is supposed to react to all the hell they have been through. We are all supposed to smile and not admit that we are having trouble coping because then we are too emotional and labelled as causing our own illnesses. Well, I won't say sorry if I CRY and it's okay if I CRY because it helps me cope along with meditation and sometimes pain medication. I also won't say sorry if I smile and laugh and enjoy life when finally I feel good and when I have found myself in a peaceful healthier phase to my illness that I pray will last a very long time. So, I pray that the Doctor you trust helps you too to get back to a place of better health where quality of life and peace of mind reigns!