Emotionally scarred from too many doctors, need advice

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New Member

Date Joined Jul 2009
Total Posts : 2
   Posted 7/7/2009 4:20 PM (GMT -7)   
Hi all,
I'm new here, just found this site today and I think it is great.  Just curious if anyone else has had some bad experiences with GI docs?  To give you some background, I first got sick in 1997 when I was 15.  At first they thought I had beaver fever, and then found C.diff and felt well for a few weeks after the Vancomycin, but the symptoms came back.  For the next few years I was passed from doctor to doctor.  I was accused of having an eating disorder or told it was all in my head.  When I was crying in one doctor's office asking for help because I was struggling to make it to class in University and my grades were dropping from A's to C's he told me I just had anxiety and offered me a RX for valium. 
I wasn't diagnosed until I needed a seton for a fistula that developed, and even then it wasn't an official diagnosis, as my GP had got me in to the Surgeon while we were still waiting for an app't with the GI doc.  I didn't realize how much all of this still affects me until I had to see a new GI (I had moved across the country for school) and completely clammed up.  He was quite aggressive in his manner and accused me of not complying with my meds, which was not the case  I spent the next 4 hours at home sobbing harder than I ever had, and all those years came back to me.  This was a few months ago now, but it still bothers me. 
 For some reason I have a hard time explaining how bad things are, and just tell the doctor I'm fine when I'm not.  I think it stems from a lack of validation for so long, and because I don't have it as bad as some, I feel like I have no right to complain about my bloody diarrhea or pain.
Has anyone been through a similar experience.  How do I get over this?  I can't trust doctors.

Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 7/7/2009 5:26 PM (GMT -7)   
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.
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.

Veteran Member

Date Joined Aug 2007
Total Posts : 990
   Posted 7/7/2009 5:41 PM (GMT -7)   
Hi p47 and welcome to the forum!

I am so very sorry you've had such a rough time. My heart was breaking as I read your post. I have no words of wisdom except to tell you that you have found a supportive community here and I hope you stick around!

You are not alone in feeling like you can't trust doctors. That said, your current doctor sounds like a bully. Any chance you can change to another doctor?
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.

Regular Member

Date Joined Feb 2009
Total Posts : 128
   Posted 7/7/2009 7:16 PM (GMT -7)   
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.

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.

Regular Member

Date Joined Jul 2003
Total Posts : 145
   Posted 7/7/2009 7:34 PM (GMT -7)   
Hello all, been away for a few days during the 4th of July break. But, I am back to the routine.

Now regarding the question on doctors. I have realized being proactive with doctors is important. Sometimes this might backfire because the docs might think you are know-it-all jerk. I also had fistualizing CD and had seton implanted, but it took various GIs to really really narrow down the problem. Now, even after narrowing (pun not intended) they are still not sure how to treat me. They dilly-dally, wait on blood tests, and you have to lobby hard to get tests approved, so in between the doctors and the insurance company, it takes a lot of effort to get properly treated. Since CD has different manifestations on different people, it is years of hit and miss or trial and error. So stay on it, that is all we can do.

Veteran Member

Date Joined Jan 2007
Total Posts : 656
   Posted 7/7/2009 9:15 PM (GMT -7)   
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.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 7/8/2009 4:35 AM (GMT -7)   
My first GI said that you hav eCrohns and to live life, no medication needed. My wife suggested that I see the GI doctor who she had worked for in the past, it was the best move that I made. The new GI did all of his own test and studies and then put me on maint. meds to keep the disease in check. He has always done right by me, even when I decided not to take meds anymore. I know that it is hard to find a doctor who will listen to you but you can not give up as there will be one there for you.You just need to keep looking until you find him/her.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 7/8/2009 5:11 AM (GMT -7)   
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.

Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

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.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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

Regular Member

Date Joined Feb 2009
Total Posts : 350
   Posted 7/8/2009 6:27 AM (GMT -7)   
think of it this way - doctors are like suits. Keep trying them on til you find one that fits!!
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 7/8/2009 9:16 AM (GMT -7)   
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.
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.

Regular Member

Date Joined Jul 2009
Total Posts : 83
   Posted 7/8/2009 11:46 AM (GMT -7)   
When I first had rectal bleeding in my early 20s (and freaked out big time because my mom had died of colon cancer in her 40s) the first GI I went to didn't even do a test, just told me he knew it was hemorrhoids because no one else at my age would have anything but that. He did at least schedule me for a colonoscopy, which his office called to cancel the day before (just before I was starting to take the "prep") because he was called out of town. I was already disliking the guy so I went out-of-state to a friend of my dad's who did the colonoscopy. Ten years later and I've got a great doctor locally, but am getting ready to move across country so am freaking out about finding someone I like as much and who pays as much attention to me when I get there. But I know that if I get one dud, it just means I have to try again until I find someone better, because I'm paying for it and don't have to be stuck with someone whose not going to give me the care I need!
**Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009 (but still only impacts colon)
**Asacol (4800 mg daily), 6-MP (100 mg daily -- recently switched from Imuran), Prednisone (8 mg daily...for a few more weeks), Flagyl (250 mg every other day), Nexium (40 mg daily)
GOAL of one day being immunosuppressant free...still working on my doctor on this one but I am a world traveler who desperately wants to go to Africa one day!

Regular Member

Date Joined Oct 2008
Total Posts : 114
   Posted 7/8/2009 2:00 PM (GMT -7)   
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.
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

Regular Member

Date Joined Jul 2009
Total Posts : 24
   Posted 7/8/2009 9:54 PM (GMT -7)   
Wow, sorry you guys have had such a tough time with doctors. I hope you all find doctors you are comfortable with, it is so vital to good health care, and also your mental health too!

In Canada our doctors fees are covered by the government, so we don't have to pay for them. We can switch doctors at any time, and we have a lot to choose from in my area who specialize in Crohn's. I asked right away for a Crohn's specialist at one of the best Crohn's hospital clinics in Toronto (Mount Sinai Hospital) when I was diagnosed in emergency (I had an obstruction). They originallyreferred me to a GI specialist in another hospital, who wanted to to surgery without even meeting with me first. She wouldn't take my phone calls or answer any of my questions, and I didn't even feel comfortable with the diagnosis at that point! I have a very rare heart condition and a blood clotting disorder, there was no way I was putting my life in the hands of a doctor who wouldn't even speak to me about my questions. My new GI doctor is a researcher as well, specializing in Crohn's reasearch. I think that really helps, as he is really understanding about what it is like to be newly diagnosed and confused. He even put me on a low residue, lactose free diet with no fruits or veggies right away, with steroids, and we were able to avoid surgery (so far). While he isn't perfect, since he tends not to tell me all the possibilites a lot "we'll cross that bridge when we come to it" attitiude, I do trust him overall. I think that is really important... If i lied and said I was okay, he wouldn;t know that my meds aren't working and wouldn;t keep looking for better alternatives. I would stay sick and miserable... This way, he trusts me when i say I am taking them, and I trust that he will work with me to make me better. Trust is vital to make the relationship work, and it has to be there on both sides.
I have too had years of doctors telling me I wasn't eating right, I was anorexic and lying (I even went to a psychiatrist to get assessed to prove I did NOT have Anorexia for insurance), I was Celiac (even when 2 biopsies came back negative), I had a "nervous stomach" and my symptoms were caused by anxiety (even though Valium did nothing to fix it) ... and on and on... why is it so hard to get a Crohn's diagnosis? I have been seeing family doctors for 18 years complaining of symptoms. It never even occurred to me I had Crohn's, I was totally shocked when I was told in emerg that's what I had! It took a CT scan when I had a blocked intestine to find out. Needless to say, I am interviewing for a new family doctor right now! Lol

Regular Member

Date Joined Jun 2005
Total Posts : 139
   Posted 7/9/2009 11:42 AM (GMT -7)   
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!
 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.

Regular Member

Date Joined Sep 2008
Total Posts : 457
   Posted 7/9/2009 12:18 PM (GMT -7)   
I have found that a good doctor surrounds themself with a great support staff. My GI has a nurse that I can contact and she will get back to me immediately. She is also the nurse I make appointment with and the one who checks me in at every visit. It is very comforting.

I agree with Janice.... keep looking until it is a good fit.

Do you know a nurse or someone in the medical field that could give you the heads up on a good GI? They are the ones to ask since they work with them on a daily basis. Good luck!!

Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.

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