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?
Treat or not?
- Thread starter Annlewis
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Crohns is insidious meaning you can have no symptoms at all and have very little guy left from damage that was untreated or under treated .
It can also go from zero to 60 in the blink of an eye meaning you won't have to worry about high med bills since untreated crohns typically leads to surgery or inpatient stay at the least.
More than a few parents had their kids dx on the operating table or in the Icu .
Would you let a sore or open wound fester on your arm?
Just because it's inside doesn't mean it's not there.
Repeated inflammation leads to scar tissue ( think scab) except your intestine is meant to be flexible not rock hard like a pipe .
Finding a med that stops the inflammation is the hard part
Most 5-ASA are not enough and are expensive
Most Gi refer to it as giving aspirin for a brain tumor not going to help much but not going to hurt either
Immunosupressants ( 6-mp and methotrexate ) have been proven to be very effective for crohns ( also cheap since they are generic like $2 )
If cost is your prime issue -you could ask about cheaper immunosuppresants .
Good luck
Crohns is insidious meaning you can have no symptoms at all and have very little guy left from damage that was untreated or under treated .
It can also go from zero to 60 in the blink of an eye meaning you won't have to worry about high med bills since untreated crohns typically leads to surgery or inpatient stay at the least.
More than a few parents had their kids dx on the operating table or in the Icu .
Would you let a sore or open wound fester on your arm?
Just because it's inside doesn't mean it's not there.
Repeated inflammation leads to scar tissue ( think scab) except your intestine is meant to be flexible not rock hard like a pipe .
Finding a med that stops the inflammation is the hard part
Most 5-ASA are not enough and are expensive
Most Gi refer to it as giving aspirin for a brain tumor not going to help much but not going to hurt either
Immunosupressants ( 6-mp and methotrexate ) have been proven to be very effective for crohns ( also cheap since they are generic like $2 )
If cost is your prime issue -you could ask about cheaper immunosuppresants .
Good luck
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You can try going med free but you are rolling the dice. There is just no way to predict how or when things will turn the corner and you will get very sick. Like MLP said, it happens slowly and by the time you have symptoms things can be very bad and are harder to get under control.
My son's only symptom was weight loss (like 2 lbs a year) and eventually he stopped growing (something an adult wouldn't experience). Since being on meds he has gained 90lbs and grown 10 inches so I know the meds have made him far healthier than he was before.
I hope all continues to go well for you. ((((Hugs))))
My son's only symptom was weight loss (like 2 lbs a year) and eventually he stopped growing (something an adult wouldn't experience). Since being on meds he has gained 90lbs and grown 10 inches so I know the meds have made him far healthier than he was before.
I hope all continues to go well for you. ((((Hugs))))
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Personally, I have been med free (apart from loperamide which I have had to take since having surgery) for two years now and my Gastro is very reluctant to put me back on any meds while my scopes and tests are clear. I'm more than happy not to have to take tablets or go for infusions every month! He does keep a close eye on me, I see him every three/four months and my last colonoscopy (back in June?) was perfect.
If I did begin to get symptoms again then we would obviously discuss medication, but at the moment I'm enjoying living without it!
Also, my Mum has UC and has been medication free for over 30 years, so it can be done.
I definitely wouldn't advise you to stop your meds without first discussing it with your consultant, and if you have active disease it is important to get it it under control. I just wanted to offer a positive opinion to living without meds (and one that is sanctioned/advised by my gastroenterologist!)
If I did begin to get symptoms again then we would obviously discuss medication, but at the moment I'm enjoying living without it!
Also, my Mum has UC and has been medication free for over 30 years, so it can be done.
I definitely wouldn't advise you to stop your meds without first discussing it with your consultant, and if you have active disease it is important to get it it under control. I just wanted to offer a positive opinion to living without meds (and one that is sanctioned/advised by my gastroenterologist!)
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