Update, frustrations, and a question

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imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 8/6/2010 11:01 PM (GMT -7)   
Hi everybody. Just a little update and looking for some reassurance...

So, in 3 days I'm getting another colonoscopy. I'm so anxious for my GI to see something and start treating me again...but I'm terrified that she's going to see nothing and tell me I'm fine and that I don't need treatment. I'm so miserable it's hard to even comprehend that she wouldn't see anything (fevers every night, D, joint pain, abdominal pain, the works), and yet I'm still afraid.

And I'm a little upset. I received my records from the Cleveland Clinic today (where my last GI was) and scanned them. They did an endoscopy and found my stomach inflamed, as well as my duodenum. The biopsies confirmed all of it- chronic gastritis and intraepithelial lymphocytosis (fancy name for some rare kind of inflammation) in my duodenum. I'm so frustrated with this guy. He told me they didn't find anything and basically told me it was all in my head and that I should take a stronger antidepressant! Not something I expected from the Cleveland Clinic!

Also, I'm going to be on my period during the scope...is that okay? Ladies::should I wear a tampon?
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.
Been on: Entocort, Pentasa, Prednisone, Humira, Imuran

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/7/2010 5:17 AM (GMT -7)   
Yes, wear a tampon. Yes, its okay to have a colonoscopy during your period. I'm also surprised a CC gastro would make such a comment given his dictated report. The only thought that crosses my mind is that if you are on a PPI and/or other meds for GERD he felt those results were being treated. BUT that is NO EXCUSE for the way he treated you. "I" would write a letter to the CC gastro department head regarding such an experience.

I did that about 2 years ago. I've been going to Mayo Clinic w/my family and/or for myself for some 50 years and ALL the doctors were WONDERFUL as one would expect at Mayo where they always used to stress "bedside manner" as much as expertise in their field. BUT - this last visit there I encountered a sleep pulmonologist that was a complete .... sheister. And his dictation was full of "less than the truth". I've NEVER had a problem getting my full medical records from Mayo each visit - including now that the digital age is here CDs of any imaging, etc. But this shesiter even limited some of my medical records that I requested, even when requesting them thru their Med Records department. I had to send Med Records a diplomatic reminder of what records I had requested that hadn't been provided and tactfully mentioned my HIPAA legal rights. One of the records I had requested that I was told couldn't be provided they replied they would only send to a licensed sleep pulmonologist of my choice.

Mayo Clinic????? I was flabbergasted! I did have them sent to my local sleep pulmo and he gave me the CD and the letter from the sheister sleep pulmo at Mayo. In the letter the sheister clearly stated that he "trusted" my sleep doctor to keep the information confidential and to destroy the CD after viewing it!!! This sheister is no more a Mayo quality doctor than a relative of the mule is!!!

When I think of all the doctors I've encountered at Mayo between my family and for myself I continue to be shocked and amazed that this sheister ever managed to get on staff at Mayo!! This encounter did not end or damage my 50+ year "love affair" w/Mayo, Rochester, BUT I would NEVER allow them to schedule me w/that sheister again!
My computer says I need to upgrade my brain to be compatible with its new software.

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 8/7/2010 7:03 AM (GMT -7)   
The sad part is, it wasn't only him who treated me like that. I saw a Rheumy there ONCE and she lied all over my records. She said I had several suicide attempts (I have NEVER tried to kill myself! That is not something I take lightly to her lying about!), muscle pain all over my body, and some other things too ridiculous to mention.
It's hard to be a young person and have that label stamped on you as a 'nut job'. I've never been treated that poorly by a doctor the whole time I've been sick and it happened twice at the Cleveland Clinic. I think I will write them both letters. They shouldn't be allowed to treat people like that.
My GI only started treating me like that after this Rheumy wrote that report about me. It's pathetic that he would believe her over me. If I had "several suicide attempts" I would have told him about it. I don't lie to my doctors.

I'm sorry you had to go through that. I can honestly say I know how frustrating it is!
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.
Been on: Entocort, Pentasa, Prednisone, Humira, Imuran

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/7/2010 7:29 AM (GMT -7)   
Wow I am surprised by both your experiences. That is horrible on both parts! And from to great institutions, that I have always eagerly read any new report they put out.

You guys have got me thinking as my HMO has electronic records now. I would like to see my past two CT Scan reports. They have both been done in the past 3 months. The reason I want to see them is to see what they really say compared to what the docs have told me. I love my GI, but I have not been feeling up to par of late, and wonder sometimes if something else is going on that maybe "they" don't think is important, but possibly could provide some answers.

So sorry you both had to have those experiences. C2 I have never heard of someone, that bad, unless they were being prosecuted. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 8/7/2010 8:35 PM (GMT -7)   
I think have mentioned before that my GI sometimes doesn't give me a full run down of my test results, and that I find things out months later either when he decides to tell me or my PCP reads the results and tells me. In his case, I think he feels that sometimes too much information will stress me out, but I would much prefer to have all the information immediately. I think doctors don't realise that patients with chronic diseases do spend time researching their disease, and can cope with details.

Also it is important to clear up incorrect reports because they can haunt you. My GI wrote that I had "voluntarily" lost 40 pounds prior to my diagnosis. He meant "involuntarily" but it has been a problem for insurance etc. because it looks like my actions created issues. I would make sure that you get documentation in your file that you question some of the comments written by the doctor.

With regards to having your period, I have done it both with and without a tampon. I prefer without. I just wore a pad and kept my underwear on until I went into the room for the procedure. The nurse just put them in a bag, and I put them back on right after. The doctors don't care, as there are pads on the table etc. I took some baby wipes with me, which I do anyway, and freshened up before I got dressed.
45 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March last year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Salofalk 2000 mg, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Pregnancy Vitamins for iron etc., Salofalk suppositories as needed.

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 8/8/2010 12:19 PM (GMT -7)   
I understand that a GI would want to make you not stress out, but my GI caused me more stress. He told me it was all mental and they didn't find anything to support that I had anything wrong with me. That's just not the case. They did find something. I haven't been treated for anything (not GERD, not Crohn's), because he said it was unnecessary. He wasn't the doctor who did my endoscopy because I was an in-patient at the time and he wasn't my attending GI. Meanwhile, I've been in progressively more pain. I'm frustrated. An antidepressant wouldn't cause any inflammation to decrease! There is something real going on in my body...
When I showed the reports to my new GI, she was appalled. She knows my CC doctor on a professional basis and even asked me "Why would he not treat you? Why did he take you off your Crohn's medications?" I didn't have answers for her, other than that I trusted him to do the right thing. Both of them are highly accredited doctors.

Thank you for the info about changing my records. My PCP has written in his reports that the Rheumy didn't know what she was talking about (basically, not those exact words, lol). Do you think that will be sufficient, especially because he was the one to treat my mental health?
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.
Been on: Entocort, Pentasa, Prednisone, Humira, Imuran

WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 8/8/2010 7:42 PM (GMT -7)   
It is good that you are having a colonoscopy, and hopefully you will get biopsies taken and get some answers. I think it is fine that your PCP made his comments regarding the rheumy's report. That should be fine, and make sure you get copies of that too.

Good luck with the colonoscopy. Keep on pushing for answers, but try to relax and breathe too!!
45 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March last year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Salofalk 2000 mg, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Pregnancy Vitamins for iron etc., Salofalk suppositories as needed.
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