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06-01-2017, 12:01 PM   #1
leah.moradi
 
Join Date: May 2017
I am not okay!

I have done everything under the sun to help my crohns and i still have no relief. I am now on remicade and according to my doctor i am in "remission." but i still feel like shit. it is so bad that i have put myself on a liquid diet. i have told my mom that something is wrong because i am still in horrible pain. we just called the nurses and they told us, "she is fine and all of her test have come back okay, so carry on with your life." I AM SO ANGRY! i am so tired and i just want someone to actually listen to me. any advice?
06-01-2017, 12:13 PM   #2
JessPeper
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Location: Wisconsin Rapids, Wisconsin

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I would maybe seek out a second opinion. I would think that if you're in remission you shouldn't be having pain or need to be on a liquid diet.

I'm sorry you're not feeling well! Hopefully you get some relief soon!
__________________
3rd Generation

Dx with CD 4/16

Ileocecectomy 3/17

Reoccurrence 8/17


Current Medications: Lialda 4.8g daily, Azathioprine 100mg daily, Prednisone 20 mg daily. B12, Folic Acid, Primal Defense probiotic.
06-01-2017, 12:37 PM   #3
scottsma
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I agree with Jess.I hope your Mom understands you enough to know you're struggling, and a second opinion would be a good place to start.
06-01-2017, 12:53 PM   #4
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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I could have literally wrote your post word for word! I had a colonoscopy in April and was actually disappointed to see how good it looked. Just a couple of tiny ulcers left. Have you had a colonoscopy recently? Have you had an MRI? What tests specifically are normal?

Where is your disease located? Have you ever had any surgeries?
__________________


2nd Generation affected

Symptoms since 2006 (age 17)

Emergency open bowel resection after perforation in 2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

DX with perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum) and coeliac disease (age 26)

Meds:
75mg azathioprine
Gluten-free diet
06-01-2017, 01:44 PM   #5
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
I am totally with you!! I swear My IBD team think I'm crazy! I've had clear MRI, normal colonoscopy bar one ulcer, slight swelling on a ct & xray & the only thing raised is my fc at +600. They have me on steroids which bought my fc down to 420 but are refusing to start me on any other meds til they have proof that I have inflammation again! About to undergo a capsule test and am literally praying they find something here as the last few months have been such hell, in & out of hospital with severe pain, constant diarrhoea which they said was bile salt malabsorption so put me on binders which didn't work yet since starting the steroids I haven't taken the binders & only now I'm on a taper my symptoms are coming back. I'm exhausted ALL the time, can barely eat (unless I'm on a high dose of pred), have lost 30 lbs in a cpl of months & the latest Drs diagnosis was constipation so they made me do a bowel cleanse FFS! Fingers crossed they find something tomorrow on pill cam as I swear imma loose my mind if they don't start me on some crohns meds soon 😩😩😩
06-26-2017, 09:51 PM   #6
Daf2842
 
Join Date: Feb 2017
Location: West Hartford, Connecticut

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I am totally with you!! I swear My IBD team think I'm crazy! I've had clear MRI, normal colonoscopy bar one ulcer, slight swelling on a ct & xray & the only thing raised is my fc at +600. They have me on steroids which bought my fc down to 420 but are refusing to start me on any other meds til they have proof that I have inflammation again! About to undergo a capsule test and am literally praying they find something here as the last few months have been such hell, in & out of hospital with severe pain, constant diarrhoea which they said was bile salt malabsorption so put me on binders which didn't work yet since starting the steroids I haven't taken the binders & only now I'm on a taper my symptoms are coming back. I'm exhausted ALL the time, can barely eat (unless I'm on a high dose of pred), have lost 30 lbs in a cpl of months & the latest Drs diagnosis was constipation so they made me do a bowel cleanse FFS! Fingers crossed they find something tomorrow on pill cam as I swear imma loose my mind if they don't start me on some crohns meds soon


Surprised ur doc willing to do pill cam when u have crohns. My doctor wouldn't allow me to do the pill cam... frequent blockage and narrow colons makes it not safe for me to do that.... I have colonoscopy this Wednesday for follow up... I do feel like crap all the time but my blood work shows slight elevation in white cells so doc thinks I'm doing ok and lowering my meds. It's hard to convince when blood works says otherwise. Grr.


06-26-2017, 10:00 PM   #7
ronroush7
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I would maybe seek out a second opinion. I would think that if you're in remission you shouldn't be having pain or need to be on a liquid diet.

I'm sorry you're not feeling well! Hopefully you get some relief soon!
I agree. Keep pushing for answers.
__________________
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.
06-26-2017, 10:45 PM   #8
MizzSarah
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remission is such a confusing term. I read online somewhere--in my wtf how I am in remission moment--that remission looks differently for everyone. You could be in remission have no symptoms or you can be on the other side where your in remission but am symptomatic.
__________________
Crohns Disease
2014
Meds: Humira & Entocort
2nd Gen affected
06-27-2017, 10:43 AM   #9
Bufford
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Join Date: Dec 2015
Location: Northwestern Ontario

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I'd look for a 2nd opinion, there's a good chance that something is being missed. Its one thing for a doctor to make their statement, but its the patient who knows how they feel. As a patient I get very annoyed when doctors want to take the driver's seat and be in full control, yet when it comes down to the crunch they do not want to admit fault, leaving the patient in pain and doubt.
06-27-2017, 01:09 PM   #10
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
Surprised ur doc willing to do pill cam when u have crohns. My doctor wouldn't allow me to do the pill cam... frequent blockage and narrow colons makes it not safe for me to do that.... I have colonoscopy this Wednesday for follow up... I do feel like crap all the time but my blood work shows slight elevation in white cells so doc thinks I'm doing ok and lowering my meds. It's hard to convince when blood works says otherwise. Grr.
I had the pill cam (no problems with the test), and it showed up three separate areas of ulceration along with multiple scarring. Saw my IBD nurse today & they've finally agreed to start me on Humira. It's taken me several months but finally getting somewhere. Keep on at them, you know your own body... Good luck with the colonoscopy
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