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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?

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.
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
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!
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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!

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 !!