01-04-2015, 08:04 PM   #1
Join Date: Jan 2015
Location: Connecticut

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Treat or not?

Hi All, I'll try to keep this short and simple. I went for a 50 year old screening colonoscopy and they found inflammation (8 years ago). In my opinion I was symptom free. I had another colonoscopy done at 55. They saw the same inflammation, biopsied it, and it came back positive for Crohn's. I was still (according to me) symptom free, and refused to take medication. Now, after an extremely stressful year (I'm 58), I developed symptoms (belly pain, night sweats, bloody diarrhea...). My doctor was relieved to finally start my on meds, lealda. Looking back, I now recall an episode that went un-diagnoses in my early 20s but it cleared up and I've been fine till now. My doc, and internist, want me on meds for life! I simply don't see it! Maybe for a few months, then why not see how things go! If I'd been diagnosed earlier I would have been on meds for almost 40 years for no reason at all. I understand if I continue to have symptoms I'll need meds, but heck, why not see if I can go 10, 20, 30 or more years between flares! It doesn't help that we've just been moved to a high deductible so I'm looking seriously at medical expenses. Any thoughts? Anyone else here say NO to meds?
01-05-2015, 06:07 AM   #2
Cross-stitch gal
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Join Date: Dec 2011
Location: Vancouver, Washington

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I don't know. I'm a bit concerned about the stomach pain and the bloody diarrhea. I admit, that your symptoms will most likely get better and may even get back into remission. Plus, can sure understand your concern about the amount of money for meds. But, I'm not sure it'd be smart to go without meds all together.

From my own experience, there was a time just after I got married that I went off all my meds & vitamins for awhile. But, there's no way I would ever be able to do that again. Given, at one point I was in a 2 year long flare. But, even without that horrible flare I don't think I'd chance being med free again.
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday

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01-05-2015, 07:45 PM   #3
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Join Date: Mar 2011
Location: San Mateo, California

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I went med-free for a long time (about 10 years), but like Cross-stitch gal, I wouldn't do it again.

I had a terrible flare that started out as reasonably mild at the beginning of 2009, and become horrible by mid-2011. It ended after three months in hospital and having a strictureplasty surgery. I now happily inject Humira every two weeks even though I feel right as rain.

Not unlike you, the inflammation stage of my Crohn's doesn't usually present symptoms, but once the damage is done and the strictures are formed, there are no options but surgery left. Think about how pricey that can be (not just money, but time, etc.)!
01-05-2015, 08:34 PM   #4
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I would have to agree with Carrie. My son is asymptomatic and has been for about a year but no symptoms do not mean no inflammation therefore no damage. My son just had to have his first resection surgery at 17. Finding the right med to control that inflammation is really important. Even simmering inflammation, that isn't causing damage can lead to scare tissue and stricturing that can only be remedied with some type of surgery.

It sounds like you've been extremely lucky as far as symptoms and inflammation causing scar tissue but no one can determine how long that will last especially considering you are now experiencing symptoms.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

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