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Crohn's Disease Forum » Your Story » Nothing is working, and no one is listening!


10-25-2017, 09:00 AM   #1
jfried3
 
Join Date: May 2017
Location: Baltimore, MD
Nothing is working, and no one is listening!

I have been on no medication for a month a half now. Previously, I was on Prednisone, then pentasa, then 6-mp, and then sulfasalazine. Nothing made a huge change, and I had horrible side effects on each one. I still constantly don't feel well, and am always getting sick. When I tell my doctor, she says to wait and that it isn't time to try a stronger medication since my inflammation level is close to a normal range. Do I wait? Convince my doctor I can't go on without medication?
10-25-2017, 09:09 AM   #2
Squirrel#1
 
Join Date: Sep 2017
Location: Abilene, Texas
I have been on no medication for a month a half now. Previously, I was on Prednisone, then pentasa, then 6-mp, and then sulfasalazine. Nothing made a huge change, and I had horrible side effects on each one. I still constantly don't feel well, and am always getting sick. When I tell my doctor, she says to wait and that it isn't time to try a stronger medication since my inflammation level is close to a normal range. Do I wait? Convince my doctor I can't go on without medication?
Go to the ER. They will give you something and they will send a report to your Dr. Keep calling and ask for a referral while in the ER. God forbid something bad happens you've got it on record that you were seeking help. Tell the er what's happening and ask if they know a better specialist.

10-25-2017, 09:33 AM   #3
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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I have been on no medication for a month a half now. Previously, I was on Prednisone, then pentasa, then 6-mp, and then sulfasalazine. Nothing made a huge change, and I had horrible side effects on each one. I still constantly don't feel well, and am always getting sick. When I tell my doctor, she says to wait and that it isn't time to try a stronger medication since my inflammation level is close to a normal range. Do I wait? Convince my doctor I can't go on without medication?
Have you had a colonoscopy recently? What did it show? Have you had an MRE recently?
You could try methotrexate?
Why won’t your insurance fund stronger medications? They are the go-to meds in the USA
10-26-2017, 04:14 AM   #4
valleysangel92
Moderator
 
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Join Date: Dec 2012
Location: United Kingdom

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Hello, I'm sorry you're struggling.

It's incredibly frustrating when you feel like you're not being listened to, I know many of us here can relate to your situation.

Blood tests can be a good indication of our general health, but unfortunately they are not perfect and its actually quite common for people with Crohn's to have blood tests come back normal despite having active inflammation. I have had to fight some doctors really hard because they've told me I'm fine based on bloods alone, when other doctors have said I'm clearly flaring.

I would recommend asking for some more sensitive testing, one thing you could ask for is a fecal calprotectin, this checks your stool for signs of inflammation and is generally more sensitive than blood tests so should give a clearer picture of whats happening. As it's non invasive and relatively cheap most doctors will agree to it. You can also ask for some imaging like an MRI or you could request another scope.

If this doesn't get you any further forward, or your doctor refuses to carry out any testing then you always have the right to a second opinion.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
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