Crohn's Disease Forum » Support Forum » Vent Away » Horrible GI Brought Me To Tears


02-13-2018, 09:45 PM   #1
KristinaEli
 
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Join Date: Mar 2012
Location: Jacksonville, Florida
Horrible GI Brought Me To Tears

I lost insurance in June when I turned 23 and immediately before that I failed Humira and was taken off. I had no other options so went down the avenue of getting into a study. I met with the study doctor multiple times and he was always short but nothing over the top. I unfortunately had been on a high dose of prednisone for a while due to a bad flare up of Uveitis that was damaging my ocular nerve so when it came time to have the colonoscopy to see if I was in a current Crohn's flare (you have to be active to be accepted into the study) my GI tract was clean. When I woke up from anesthesia and found out I started crying because the study was my last hope for getting medical treatment. The doctor walked in on me crying, shrugged his shoulders and made some offhand comment about how I should be happy because I'm not sick and walked off.

Fast forward to today. I've been sick for several months. I've lost ten pounds in the last month alone because I can't keep any food down. I haven't had anything even resembling a solid BM in months. Any time I eat at all I either vomit or I spend all day back and forth to the bathroom. I'm not eating and I'm exhausted and I'm desperate. I've almost checked myself into the hospital but even with my new insurance I can't afford it. I'm waiting to get in with a new GI who takes my insurance and get back on medication (I have always been on one immunosuppressant or another since diagnosis in 2012). I contacted the man who does all of the processing for the study and asked to be rescreened to see if I qualify now because I am just physically at the end of my rope. I am so sick I can hardly work. I'm desperate.

So I go in today for the full workup again and after all of the tests and blood work and paperwork I'm taken down to see the study doctor. After an hour of waiting he finally comes in and tells me I'm not right for this study. He cut me off constantly, talked down to me like I was stupid, and kept repeating the question "what makes you think this is a Crohn's flare?" I told him my symptoms and he said "yes, but you had those before and you were fine. Have you ever thought that maybe you just have irritable bowel?" I was on antianxiety meds but had to come off them when I lost insurance. He implied, in no uncertain terms, that maybe that's all it is. Maybe it's all in my head. After all, I wasn't sick in August when he did the colonoscopy.

What he failed to mention was that I also stopped my immunosuppressants at the same time, stopped seeing all of my doctors, and have been under extreme amounts of stress over the whole "no insurance" thing. And when he did the procedure I was on 60 mg of prednisone to save my vision. I've never felt so belittled by a doctor. I left feeling like a fraud. Like I'm not sick enough. Like I was wasting everyone's time. I cried the entire drive home and only now, hours later, did I decide to look up reviews on him.

Turns out he does this to so many other patients. So many other Crohn's and Colitis patients have been made to feel embarrassed and ashamed and unworthy during their most difficult moments because of this man. So I decided to let it all out to you fine folks in hopes and to write down here what I was too ashamed and afraid to say to him.

You're right. I don't know for a fact that it's a Crohn's flare. That's what you get paid to figure out. One clean colonoscopy after a dozen hamburger meat colonoscopies spread over six years does not make it all in my head. I do have anxiety and yes, I need to go back on my medication, but anxiety is not the cause of my symptoms. Anxiety is only exacerbating my very real Crohn's Disease. Anxiety doesn't cause my immune system to attack my GI tract, my joints, and my eyes. I deal with enough people in my day to day life who discount what I go through because I don't "look sick". I don't need a medical professional to add to that. Do your job and leave your condescending thoughts at the door.

Thank you for letting me vent. I feel so much better already.
__________________
Diagnosed March 1, 2012 with Crohn's Disease, Uveitus,and possibly Behcet's.

Current meds:
Humira 2x Monthly

Failed meds:
Entocort
Asacol
Pred Forte
Durezol
Bentyl
Remicade
Cimzia
02-13-2018, 10:07 PM   #2
Halfgut
 
Join Date: Feb 2018
Location: Hilton Head, South Carolina
I lost insurance in June when I turned 23 and immediately before that I failed Humira and was taken off. I had no other options so went down the avenue of getting into a study. I met with the study doctor multiple times and he was always short but nothing over the top. I unfortunately had been on a high dose of prednisone for a while due to a bad flare up of Uveitis that was damaging my ocular nerve so when it came time to have the colonoscopy to see if I was in a current Crohn's flare (you have to be active to be accepted into the study) my GI tract was clean. When I woke up from anesthesia and found out I started crying because the study was my last hope for getting medical treatment. The doctor walked in on me crying, shrugged his shoulders and made some offhand comment about how I should be happy because I'm not sick and walked off.

Fast forward to today. I've been sick for several months. I've lost ten pounds in the last month alone because I can't keep any food down. I haven't had anything even resembling a solid BM in months. Any time I eat at all I either vomit or I spend all day back and forth to the bathroom. I'm not eating and I'm exhausted and I'm desperate. I've almost checked myself into the hospital but even with my new insurance I can't afford it. I'm waiting to get in with a new GI who takes my insurance and get back on medication (I have always been on one immunosuppressant or another since diagnosis in 2012). I contacted the man who does all of the processing for the study and asked to be rescreened to see if I qualify now because I am just physically at the end of my rope. I am so sick I can hardly work. I'm desperate.

So I go in today for the full workup again and after all of the tests and blood work and paperwork I'm taken down to see the study doctor. After an hour of waiting he finally comes in and tells me I'm not right for this study. He cut me off constantly, talked down to me like I was stupid, and kept repeating the question "what makes you think this is a Crohn's flare?" I told him my symptoms and he said "yes, but you had those before and you were fine. Have you ever thought that maybe you just have irritable bowel?" I was on antianxiety meds but had to come off them when I lost insurance. He implied, in no uncertain terms, that maybe that's all it is. Maybe it's all in my head. After all, I wasn't sick in August when he did the colonoscopy.

What he failed to mention was that I also stopped my immunosuppressants at the same time, stopped seeing all of my doctors, and have been under extreme amounts of stress over the whole "no insurance" thing. And when he did the procedure I was on 60 mg of prednisone to save my vision. I've never felt so belittled by a doctor. I left feeling like a fraud. Like I'm not sick enough. Like I was wasting everyone's time. I cried the entire drive home and only now, hours later, did I decide to look up reviews on him.

Turns out he does this to so many other patients. So many other Crohn's and Colitis patients have been made to feel embarrassed and ashamed and unworthy during their most difficult moments because of this man. So I decided to let it all out to you fine folks in hopes and to write down here what I was too ashamed and afraid to say to him.

You're right. I don't know for a fact that it's a Crohn's flare. That's what you get paid to figure out. One clean colonoscopy after a dozen hamburger meat colonoscopies spread over six years does not make it all in my head. I do have anxiety and yes, I need to go back on my medication, but anxiety is not the cause of my symptoms. Anxiety is only exacerbating my very real Crohn's Disease. Anxiety doesn't cause my immune system to attack my GI tract, my joints, and my eyes. I deal with enough people in my day to day life who discount what I go through because I don't "look sick". I don't need a medical professional to add to that. Do your job and leave your condescending thoughts at the door.

Thank you for letting me vent. I feel so much better already.
Sorry to hear your frustration. I had similar issues when I was first diagnosed at 17. Doctor told me in exact language " get your s### together and stop putting your parents thru this" the following week I was rushed to hospital and almost died due to ruptured intestines. Doctors only know what they are willing to learn. Find someone else is you can. I understand about the insurance issue. Have dealt with it for 25+years. Drug manufactures will provide there mess for very little to no money needed. Hope things go better
02-13-2018, 10:54 PM   #3
cmack
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Join Date: Aug 2014
Location: British Columbia

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Hi KristinaEli,

What he did was just wrong, I'm so sorry that you had to go through that. I have been the one shrugged off before and it is very hurtful. I certainly hope you don't have to deal with that doctor again. Not all doctors are created equal, I hope you can find a good one soon.


Best regards,

Chris
02-14-2018, 02:15 AM   #4
Jennifer
Adminstrator
 
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Since being diagnosed in 1991 I've had both good and bad doctors (not just GI doctors). I left my most recent GI to see one that was closer to me and because it felt like his personal views were impacting my care. So I went to a new GI and I'm on the fence with this guy. My last scope looked good but the biopsies had some microscopic inflammation which he tried to say was from the prep even though that's never happened before in previous scopes. Never. It's like some doctors don't believe in Extraintestinal Manifestations or couldn't fathom that maybe it's your small intestines that are being affected where a regular colonoscopy won't reach. He suggested IBS. I call bullshit and know exactly what's going on with me.

Adhesions and scar tissue (which I have) from past chronic inflammation or past surgeries can also cause some of those symptoms but won't show up in ANY test other than exploratory surgery. Many will diagnose them by symptoms alone and the goobers out there might call it IBS instead of using their brains and remembering what they were taught in med school. Might not be a Crohn's flare but that doesn't mean it isn't Crohn's related or that it couldn't get worse over time because they can cause obstructions etc. Even small amounts of inflammation over time could cause them and a colonoscopy, even through pathology won't detect inflammation that's going on on the outside of the intestines because they're looking on the inside.

Maybe your flare wasn't bad enough for that study and I get that but the fact that you had to be on high doses of steroids for an extraintestinal manifestation of Crohn's to me says that it is a flare and needs treatment especially if the steroids helped with your other symptoms as well.

I really hope that you're able to go back on medication soon. Health insurance does far more harm than good. Please take care of yourself.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
02-14-2018, 11:33 AM   #5
Bufford
Senior Member
 
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Join Date: Dec 2015
Location: Northwestern Ontario

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I took more than my fair share of verbal abuse from people including a few doctors and developed a thick skin in my older years. For the most part doctors have been polite and willing to work with me, but I had one GI who did not sedate me properly for a colonoscopy and then had the nerve to tell me that I was not taking care of myself. I looked him in the eye and let him have it. I gave him a good debriefing that left him 2 inches high. I left him and found a much better GI.
I now look up doctor reviews on the net, these are a good source of information for patients. Don't hesitate to speak your mind, doctors are only human.
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