Crohn's Disease Forum » Support Forum » Vent Away » This is a joke right?


08-26-2016, 03:57 PM   #1
tots
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This is a joke right?

in 2012 I was in the hospital for my CD. Colonoscopy found skip lesions in the
colon ( left sided colitis, Crohns Colitis). Biopsy showed ischemic colitis) bowel. Otherwise "normal". Small bowel series
showed CD beyond the reach of the scope. As I was already diagnosed this was
enough for the Dr to keep me on the prednisone they started the previous week when I was admitted t the hospital. eventually tried Remiacade for 6 months, didn't get the results I wanted. At the time I did not know using another drug with Remicade showed better results. He was hesitant. Four months of Humira, 2 months of Cimzia, no remission. Steroids on and off. Finally we did a CT scan with and without contrast, showed thickening in the same place as the small bpwel series a few years prev. We BOTH agreed to go back on Remicade, in 6 months if things were still rough we would add Imuron. At the 6th month mark, Dr changes his mind- wants colonoscopy first. I say- you have never nor has any Dr ever been able to reach in that way, so ok lets do it but, lets not it affect the treatment.

Colonoscopy was a joke- results and biopsy "normal". So after one year- he wants to take me off Remicade!?! ARE YOU KIDDING ME!?! No he was not.


I am on disability for CD, I am still having symptoms. I ask, were you able to get into the duodenum ( pretty sure thats the spot), you know where the SBS and CT showed the issue. NO he said a scope won't reach that far.

By this point I am crying- I am so over whelmed. He says I don't want to stop it now- your under a lot of stress and you need to be able to take care of your husband- he was diagnosed last month with stage three pancreatic cancer. I don't want you to flare up. You don't want what to flare up???? YOU JUST TOLD ME THAT HTE BIOPSY IS REALLY THE END ALL.

I am no longer able to cope with my life- I can no longer joke my symptoms away. I cant beg for medical care anymore, I just cant. Other than stopping all my meds and eating my trigger food to prove to them again I have CD, I don't know what to do.

I am no longer coping well with life- Oh and my blood pressure was 189-106 after that appt, went straight to my GP- he said don't hold all that in, let it out! And take this blood pressure pill!!



Any suggestions?


Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:
08-26-2016, 04:05 PM   #2
ronroush7
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I am so sorry. Know that you always have support here. If you go off your medicine you could get worse.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
08-26-2016, 04:08 PM   #3
tots
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I know that, but- but my dr does not buy into the Diagnosis..

I have no other coping skills right noe!

Lauren
08-26-2016, 04:12 PM   #4
ronroush7
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Is there anyone you couldn't go to for counselling? I don't know why he wouldn't accept the diagnosis. Maybe you should find another doctor.

08-27-2016, 12:16 PM   #5
tots
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I have an appt with a new Dr in September. woking forward to it.

Thank you for the kind words Ron!


Lauren
08-27-2016, 12:23 PM   #6
ronroush7
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You are welcome

08-27-2016, 01:07 PM   #7
Christi
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Yes don't I know all about it, what else can we do? Hang in there hopefully your new doc will come up with something I wish you the best and take care
08-28-2016, 10:47 PM   #8
LynnH
 
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Hi Lauren,
I'm so sorry for all you're going through! I don't understand, doesn't the clear scope mean that the remicade you've been on is working? You already had an established diagnosis so I don't get stopping the med. I'm new to this diagnosis, starting first remicade on tuesday, so I still have a lot to learn but that doesn't seem right. I hope you get some answers from your new doc. Hang in there!
Lynn

Last edited by LynnH; 08-28-2016 at 10:48 PM. Reason: typo
08-29-2016, 07:27 AM   #9
Julia S
 
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Hi Lauren.
Not sure if this information helps, but there are other procedures, namely double-balloon or single-balloon enteroscopies, that can reach parts of the small bowel that a colonoscopy can´t. Maybe discuss it with your doctor if you feel it would be important to see/biopsy past your colon/terminal ileum. Capsule endoscopy is another way of looking at your small bowel. I would find another doctor and carry on with remicade. I hear that starting and stopping puts you at risk of developing anti-bodies to the medication and that the best advice is, if you´re on it and its working, ride the wave till the end.

Good luck!
08-31-2016, 02:20 AM   #10
tots
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Julie-

I had my Endoscopy yesterday- 5 tiny (?) polyps removed from my stomach, gastritis ( i am already on a medication for that) and Barrettes (?) Esophagus. He took biopsies and will let me know next week. My family Dr said with my medication I shouldn't have any gastritis.

I am going to talk to my GI nurse when I get my next Remicade done. Also, cant wait to see the new Dr. When I asked my Dr about taking me off the Remicade- he said you don't want to be on meds the rest of you life do you? I said- I want to have a life if that means being on
meds then yes I guess so!

Hi Lynn- A clear scope for the left sided Crohns, yes the meds have worked. Over the last year or so I have also been on Prednisone and Endocourt a few times. I have never had a Dr able to reach the spot with a scope. I am not an easy patient as my Dr said. I wanted to tell him his bills were not easy to pay, so we are even!

Thank you !!

Lauren
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