I was DX with Crohns

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SlappyHappy
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Date Joined Sep 2014
Total Posts : 69
   Posted 7/6/2018 4:43 PM (GMT -6)   
Doctor got a hold of my past colonoscopy and endoscopy results and coupled with my bloodwork. I've been diagnosed with Crohn's and put on Lialda

straydog
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   Posted 7/6/2018 5:28 PM (GMT -6)   
You need to obtain copies of all of your testing. Did the dr go into any depth about what the biopsy report says, whether it is considered mild moderate, location & that sort of thing?
Susie
Moderator in Chronic Pain & Psoriasis Forums

SlappyHappy
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Date Joined Sep 2014
Total Posts : 69
   Posted 7/6/2018 6:02 PM (GMT -6)   
straydog said...
You need to obtain copies of all of your testing. Did the dr go into any depth about what the biopsy report says, whether it is considered mild moderate, location & that sort of thing?


I've got all my results. Biopsies were all 'mild inflammation' and there were 5 patches of 'localized bleeding' and the location is colon, stomach, and duodenum. We can't do a pill cam to check my small intestine as I have Gastroparesis and it would just sit in my stomach and not show us anything. So we're not sure if it's in my small intestine.

The Prometheus test said Crohn's also.

I'm just reporting back that I was officially dx with Crohn's by my GI. It sucks and I wasn't expecting it. I was told for years I just had IBS so this has all been a rolleroaster ride. I hope the Lialda will help

Edited to add: The reports say 'Mild Chronic Inflammation' and some other things. I'm not digging them out to look completely. Because it won't change the diagnosis

Post Edited (SlappyHappy) : 7/6/2018 5:10:09 PM (GMT-6)


73monte
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Date Joined Mar 2007
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   Posted 7/6/2018 6:12 PM (GMT -6)   
Good that you obtained a difinitive diagnosis. I'm surprised that they opted for Lialda. Usually used more for UC than Crohn's, but the mesalamines really considered antiquated now. You really should be considering a stronger maintenance med at this point. Imuran or 6mp would be the likely conservative try for you.

SlappyHappy
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Date Joined Sep 2014
Total Posts : 69
   Posted 7/6/2018 6:17 PM (GMT -6)   
73monte said...
Good that you obtained a difinitive diagnosis. I'm surprised that they opted for Lialda. Usually used more for UC than Crohn's, but the mesalamines really considered antiquated now. You really should be considering a stronger maintenance med at this point. Imuran or 6mp would be the likely conservative try for you.


I have other pretty severe health issues. So he told me we were starting with Lialda as it is gentler and worked for my cousin who has Crohn's also. (She was diagnosed 5 years ago and is still in remission thanks to Lialda)

straydog
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Date Joined Feb 2003
Total Posts : 16402
   Posted 7/6/2018 6:19 PM (GMT -6)   
I too was surprised at Lialda being rx'd, this is why I asked the questions. At least now you know & can work on getting better.
Susie
Moderator in Chronic Pain & Psoriasis Forums

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 10555
   Posted 7/11/2018 6:32 PM (GMT -6)   
If it's genuinely mild Crohn's (as opposed to early Crohn's), then Lialda may be sufficient. For most people it wouldn't be. But if you've had the same symptoms for years without them getting worse, that's a fairly good indication that you have a mild case.

If you can't have a pill cam, then what about a small bowel MRI scan?
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

beave
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Date Joined Mar 2007
Total Posts : 1748
   Posted 7/11/2018 8:39 PM (GMT -6)   
If one's Crohn's is mild enough to get by just on Lialda, then it's probably mild enough to get by on no treatment at all.

And that will save a lot of money in the long term, too.

SlappyHappy
Regular Member


Date Joined Sep 2014
Total Posts : 69
   Posted 7/14/2018 11:22 AM (GMT -6)   
NiceCupOfTea said...
If it's genuinely mild Crohn's (as opposed to early Crohn's), then Lialda may be sufficient. For most people it wouldn't be. But if you've had the same symptoms for years without them getting worse, that's a fairly good indication that you have a mild case.

If you can't have a pill cam, then what about a small bowel MRI scan?


My doctor starts everyone on Lialda and then moves to other stuff. Its just how he does it. I can't be choosy as I don't have a lot of options on seeing a GI though.

As for symptoms no they've been getting worse which is what lead to seeing the doctor recently. Including bloody diarrhea and such sad

SlappyHappy
Regular Member


Date Joined Sep 2014
Total Posts : 69
   Posted 7/14/2018 11:23 AM (GMT -6)   
No one has mentioned an MRI so I have no idea. I'm not able to choose another doctor so I'm just going by what I can do
Anxiety dx 1995
hEDS dx 2013
POTS dx 2013
Paraplegic since May 2015
Gastroparesis dx June 2018
Crohn's Disease dx July 2018 - Lialda started asap

roy_al_pita
New Member


Date Joined Jul 2018
Total Posts : 4
   Posted 7/16/2018 2:34 PM (GMT -6)   
I too was diagnosed with UC and after the 3 stage surgery continued to have everything except bleeding and I at least can make it to the bathroom now. They did the capsule and changed my diagnosis to Crohns. On stelara now since Jan. 2018 and no difference. The 3 dollar bottle of prednisone is the only thing that works. What do you do for the 1am extra intestinal manifestations? The aches have got to go. I take tramadol or Vicodin and sometimes they just wire me up and I'm useless at work the next day. I had a Dr. ask me if this was stressing me out at the beginning. 1: I have to take a crap in the woods when I would walk. 2: I'd go in my pants on the way from somewhere in my car, not being able to make it to a restroom. 3: Crap rolling down my legs after walking the dog and hoping no neighbors are out to see me. And a Dr asks me "Are you stressed out"? I won't get into vulgarities but just thinking of it again makes me want to take a valium. Give me a break! Am I stressed out?

Hayrack
New Member


Date Joined Jul 2018
Total Posts : 2
   Posted 7/17/2018 3:25 PM (GMT -6)   
I understand your frustration. I have been diagnosed w Crohn's in 1975. You are having to deal with the disease and the side affects at the same time. Perhaps wearing special underpants UNTIL you can get diarrehia under control and watch the time when you eat. I have had the same problems after surgeries many yrs ago. Imodium is one thing I have used and now on Cholestyramine pkts prescribed at Mayo Clinic this year. Now almost the opposite affect in bowels. Walking does make a difference for urgency. Some doctors just treat the body functions and not like it is a real human being they treated. Don't give up and don't be afraid to speak up and take w you to medical appts, an advocate to help you understand and help with questioning things. You are not alone!

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 383
   Posted 7/17/2018 4:07 PM (GMT -6)   
For many or most people diagnosed of Crohn's, colonoscopy can see inflammation at the terminal ileum or, most likely, biopsy result of terminal ileum would show inflammation or granuloma-positive.

What I am saying is that today's colonoscopy technology should be able to reach the last part of small intestines, where inflammation often occurs.
Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.
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