Emotionally scarred from too many doctors, need advice

a few thoughts and ideas. First, know that you are not alone. Many of us were misdiagnosed for many years. My mother accused me of intentionally ruining a family vacation and hiding in the bathroom. My teachers thought I was anoerexic. My pedi doc thought I was depressed. When I was diagnosed, my GI was the only one in my state who would take a pedi case.

Your anxiety is normal and your "wanting to please the doc" is normal too. For me, it was a form of denial: if I say I'm ok and the doc says I'm ok, I must be, right?" But the doc REALLY needs to hear what you're experiencing. It's the only way s/he's going to really know how to treat you.

With that in mind, I suggest that you write down your symptoms and questions in a notebook. Use that list when you visit or talk to the doc on the phone and take notes. It might be even easier for you if you review your list with a friend or relative and have them come to your appt. My uncle is one of the brightest folks I know but he gets so stressed about his UC that my aunt takes all the notes in his appts. I took him to my appt with my surgeon and he asked some really helpful questions.

As for the doc who accused you of not taking your meds, hmmmm. . .. Well, you can give him another shot and take someone with you to be sure you are giving him the full story or interview another doc. My mom was given an appt with a reknown ortho surgeon. My brother went in with her and validated that the guy may be good at what he does but he was a really jerk. Remember, docs are humans doing a job. They are not gods. I love my GI--been with him 25 years--but often need to remind him of the particulars of my case. Often need to call his office and remind him of what I need--ie. a routine blood test, etc..

Keep us updated--you are not alone.

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24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.

Hey p47,

One of the things I struggled with is blaming myself for this disease. I didn't eat right, didn't take the right meds, wasn't exercising enough, etc. I was even asked by my father if I was anorexic (I'm a male, was 93lbs as a freshman in high school, about 5'9" at the time). So the cycle is there. One thing I always ignored is that crohn's actually did make me depressed sometimes. I always thought that was a weakness, that I needed to just get over it and think positive. Well, when you're in pain, you get sad. There's nothing wrong or weak about that.

Having said all that, I just changed my gi because of miscommunication with my former. I want to encourage you to take control and BE HONEST. Your gi is not a mind reader and will continue to be worthless to you if you don't tell him the truth. I know it's hard, but this disease is not your fault, and you can't sabotage or punish yourself for it. I did, and it got me and my bloody stool shivering at home having my mother paying my student loan bills. Please be honest with your doctor. Even if he is a turd head.

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I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 

100mg mecaptopurine, 20mg Prednisone, 500mg Metronidazole 3x daily, Darvocet for dessert.

I think we've all had trouble finding the right GI. Here's my history:

GI #1: Told me that I needed my gallbladder removed. He and the surgeon didn't want to hear me when I told them that I felt worse after the surgery than I had before. They were so dismissive that it took me two years to go back to him. Whereupon he told me that my problems were all in my head and that I had to be lying when I told him that my marriage was happy and not stressful. He finally relented and decided I "might" have costocondriasis--and sent me to a rheumatologist, who told me I had fibromyalgia--and wasn't responsive when I kept asking why the digestive problems were so much worse than the joint pains. Eventually, I stopped going.

GI #2: Got him out of the phone book after I was diagnosed with Crohn's and an intestinal obstruction during an emergency CTscan for what looked like acute appendicitis. A total misogynist and an egomaniac. After the surgery, he told me that I shouldn't have any more problems with my disease, that I could eat whatever I wanted, and that I didn't need any meds. He agreed to give me Pentasa when I asked him for it (since I didn't know what else to take). I looked hard for somebody else, because he was always snide and belittling.

GI #3: Female doctor with a reputation for listening. She listened, but didn't remember who I was (and didn't review my chart) from one visit to the next. She let her clerical staff handle calls and problems. She decided I had celiac disease (her special area of interest), but four months on a strict glutenfree diet didn't help at all. When I developed a perianal abscess and was scared to death and experiencing terrible pain, her office staff told me not to worry about it. When I finally sent her a fax and told her I was frightened, her response was, "Don't worry about it. You have a great attitude. You'll be fine!" That was the day that I decided to find another doctor. I wound up having to have surgery for the abscess and a fistula--and many visits with the colorectal surgeon for a fissure that will never heal.

GI #4: Finally, a decent guy. I prepared a 'manifesto' in advance, with a list of things that I expected of my doctor. I discussed many of those things with him. He was receptive and honest. Gave me my first SBFT, put me on a low fiber/low residue diet, and changed my meds to 6MP, which has worked for me. Now that I haven't been in a major crisis for several years, he isn't as interested as he used to be--but at least he's warm and intelligent, so I no longer dread seeing my doctor.

It may take you a while to find a GI doctor you can trust and with whom you're compatible. Hang in there--and keep trying. We've all been where you've been.

You are definately not alone, I had a GI who tried to do a colonscopy on me and say I was fine (I woke up during the scope and started strangling him when I told him to stop and he did not), but he did not even get the scope in my sig. I personally have gone thru 7 gi's before I found one who I was even relatively comfortable with, but sometimes he still says stupid things, but he is ok when I say that was a stupid thing to say.

I am big advocate of chronic illness therapy myself (just be aware that it might take a couple of different therapist to find one you like )because being sick sucks in general, and frankly for me I know to schedule a therapy appointment soon after any gi appointment. 

I do think you need to find docs you are comfortable with, and don't waste you money going to a doc you don't feel comfortable with.  I think it might help the doc if you explained you issues with docs and tell them you do not like them so much that you do not tell them what is really going on.

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^{I will find a way or make one. –Phillip Sidney 1554-1586}

^{All that I am and all that I shall ever be, I owe to my Angel Mother.}

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^{Make sure your suffering has meaning…}

Post Edited (MMMNAVY) : 7/8/2009 6:27:22 AM (GMT-6)

YOU pay your doctor. HE/SHE needs to satisfy YOU. NOT the other way around. It's such a simple thing, but so easy to forget.

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27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. Leaning towards Failure there too.
Currently on:
Cimzia (started 2-12-09) Again, not helping much, if at all.
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Feeling a bit jaded lately, but trying to keep my chin up.

MMMNAVY: What is chronic illness therapy? Is it like a mental health therapy with a counselor or therapist? I have considered setting an appointment with a therapist, especially when this DD gets me going down the depression road.

 

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Shawn

 

Diagnosed with Crohn's in July 2005. 2 Bowel Resections in 2008.

Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Lopressor 100 mg/day (Blood Pressure), Remicade IV every 6 weeks, Omeprazole CR 40 mg/day, Percocet for pain, Lomotil, & Phenigren PRN

Doctor number 6 was the keeper. I had been to some of the big wigs - known around the world.(just because of location mind you) Number 6 was the one for me. Compassion and respect every time I see her. Work very hard to get a good team working with me. I don't know where I be if she hadn't been there. I would have given up. Every doctor that I had seen prior to her always insisted on doing a rectal. My first gi hospitalization I was in the ER and I had 5 rectals until finally my partner said enough...not another finger goes up that butt tonight. All the big wigs did them as well. Number six has yet to do so. When it came time for a scope she was absolutely wonderful. I even taped a message onto my backside that read "Enter At Own Risk". She loved it and we have had a great repoire evr since. Am I better? No Not really but I feel like we are moving forward as opposed to standing around with latex gloves up my behind. I dragged my feet for so long because I was afraid to break from the doctors that I knew. Am I glad I did. I always have my notebook with questions. She looks for it when I come in. Do yourself a huge favor by trying a new doctor.
Hope things get better!

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Donna

 _{Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation}

_{Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.  Chronic fungal infections.}

_{Multitude of Meds. Have tried most Crohn's meds.  Gall bladder removal and Intestinal Lap. June 08.- Intestinal blockage July 08 moved on from on Humira..now on Cimzia. .Off the Cimzia 7/8/09.  Back on Humira.  Systemic fungal infection.  Waiting on Liver Biopsy & Hepatitis results.}