Crohn's Disease Forum » Your Story » Frustration with lack of objective evidence


08-28-2015, 03:16 PM   #1
GABoy
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Frustration with lack of objective evidence

Hi everyone,

So I've ranted on several of the forums here and thought I'd just start a new thread. I'm at the point of losing the little bit of hair I have.

In a nutshell, I was diagnosed with PA fistulizing CD in 10/2013. I had a fistula placed 11/2013. I went on Humira 1/2014 and stayed on it through 4/2015, when I abscessed again. I was switched to Entyvio and 6MP in 6/2015. July the 4th weekend, I developed right lower quadrant pain. Eventually, it got so bad that I was hospitalized for two nights to go on IV steroids.

After being discharged, I was on 40 mg of pred, which was reduced to 30 mg, then to 20 mg, and now to 15 mg. My rlq pain has steadily increased as my pred has been reduced. I had an MR Enterography on 8/3 which showed "questionable mild inflammation" in the distal ileum and moderate inflammation in the rectum. I am scheduled for a colonoscopy on 9/1.

I saw my GI yesterday. He basically said that based on my blood work (normal), my calprotectin fecal sample (normal), and the "mild inflammation", he has no explanation for my continuing pain. The one thing I will say is that he was very understanding and not dismissive. He referred me to another GI in the City for a consult after my colonoscopy.

I'm sorry for the length of this post. I just don't know what to think now. It has occurred to me that maybe I have a conversion disorder. Maybe this is all in my head. Is anyone else dealing with a complete lack of objective evidence to explain their pain? I received the diagnosis. I know I have Crohn's. I know I have some inflammation. Why is it causing this much pain? Thank you for reading.
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Diagnosed with perianal Crohn's Disease: 12/2013

Surgeries:
Abscess Drainage 10/2013
Seton Placement 11/2013
Abscess Drainage + Seton Placement 4/22/2015
Abscess Drainage 10/28/2015
Seton placement 2/11/2016
Abscess Drainage 2/26/2016
Mucosal Advancement Flap 8/12/2016


Prior Medications:
Cipro, Flagyl, Prednisone, Humira, Entyvio

Current Medications:
Remicaid 6MP and Allopurinol
08-28-2015, 03:43 PM   #2
Captain Fox
 
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Hi there After reading your thread I just want to tell you that if you are feeling a pain then it's up to the health professionals to check it out, especially if they know you already have Crohn's. Don't doubt yourself. If you ever feel worried go check it out. If they say it's okay just make sure to relax a little but keep an eye on things
08-28-2015, 07:10 PM   #3
my little penguin
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Ds has pain with normal markers and normal scopes etc...
Gi is baffled as to why
Placed Ds on the partial enteral nutrition plus crohns exclusive diet in April
In addition to his humira /mtx
Pain went down to minimal shortly there after
So Ds is still doing the diet 5 months later
He occasionally has a blip but it fixed whatever was the issue .
Gi is still trying to figure out the why .

Good luck
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08-28-2015, 07:18 PM   #4
my little penguin
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Thread explaining the diet
http://www.crohnsforum.com/showthread.php?t=71686
08-28-2015, 11:43 PM   #5
GABoy
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Thank you penguin. My GI kind of dismissed my suggestion that I see a dietician. I will check out your diet thread. Thank you again.


08-29-2015, 12:06 AM   #6
Charlotte.
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I'm having right lower quadrant pain for many many months, I can exactly point on the terminal ileum without having studied anatomy ;-) It decreases when I receive steroids i.v. but normally comes back after a few days. So, did the pain decrease for you as well when you have been on i.v. steroids?
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-29-2015, 07:47 AM   #7
GABoy
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I'm having right lower quadrant pain for many many months, I can exactly point on the terminal ileum without having studied anatomy ;-) It decreases when I receive steroids i.v. but normally comes back after a few days. So, did the pain decrease for you as well when you have been on i.v. steroids?

Yes. As we've tapered my oral steroids, my pain has increased.


08-31-2015, 09:28 AM   #8
GABoy
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Prepping for the colonoscopy tomorrow. I'm trying to convince myself it's even worth it. I've just accepted I'm going to wake and be told there is nothing wrong with me. My pain is all in my head.


08-31-2015, 07:48 PM   #9
teeny5
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I cannot diagnose you, but I do not believe it is in your head. Even if your scope comes out clean you can still have damaging inflammation in other areas that the scope can't see. Keep pushing them to find out what the issue is or get you on a medication that works for you.
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Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
08-31-2015, 09:22 PM   #10
seebee
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Good luck with the scope. I hope that it gives you the answers that you're looking for.
09-01-2015, 10:34 AM   #11
GABoy
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Heading in at 1245. I'll post and let y'all know what they say.


09-01-2015, 03:12 PM   #12
GABoy
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Okay. This is crazy. I'm back home from the colonoscopy. Aside from the perianal fistula and seton, there really was no other indication of Crohn's disease... HOWEVER, there was a kernel of corn lodged in my appendix. I cannot tell you the last time I ate corn. It has to have been years. Unless there was corn in something and I didn't realize it, I have not eaten corn in a very long time.

We are going to see how I feel over the next few days. If my pain persists, we are going to do an ultrasound and determine if I need any further treatment, including potential appendectomy.


09-01-2015, 11:52 PM   #13
seebee
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Wow that corn must have had a really good hiding place Did the doctor take biopsies? I hope that you start feeling better soon.
09-03-2015, 07:18 PM   #14
GABoy
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Pathology is clear. CAT Scan is clear. Sending me to a Rheumatologist and a Pain Management Doctor. At this point in time, I'm willing to see them both and hopefully get some relief.


09-03-2015, 07:20 PM   #15
my little penguin
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Glad the biopsies were clear
Sorry you didn't get answers
Btdt with Ds
Rheumo is a good place to start
It was the cause of at least some of Ds issues
Good luck
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