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10 years and still fighting the fight.

10 years with UC thanks to taking Naproxin. Some days are ok, some aren't. Today is straight out of purgatory. No appetite and feeling extremely run down. Alergic to sulfur so most pills are useless. See a new GI in 2 weeks maybe I'll get one thaat isn't a pill pusher. :wine:
 

Lady Organic

Moderator
Staff member
hi,
you will only get pharmaceutical options with a medical doctor. If you really want to avoid pills with systemic full body effect, you can try rectal therapies (if your colitis is rectum and sigmoid only), such as enemas, suppositories or foam of 5-ASA or cortisone. have you ever tried those? what is the location of your disease?
if you already tried those rectal therapies without full remission, I think its time to accept other treatments after 10 years of disease. I fear a lot more the ongoing chronic inflammation and potential damage of it for the long term than the possible side effects of the medications.

in the mean time, check out the diet in my signature, IBD-AID, maybe something you'd like to try.
 

Lady Organic

Moderator
Staff member
my first GI was conservative and back then Biologics did not exist either, so GIs definately had to explore longer each options... I tried several mild options intertwined with cortisone during a year n half-2 years at diagnosis, but after always returning to disease activity at the end or soon after cortisone treatments, i had to accept stronger meds (purinethol/6-mp). THis treatment induced long lasting remission. key is to get in full long lasting remission, going up and down throughout the years with cortisone treatments is not a good management of IBD. hopefully you will like this new doctor. best wishes.
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community. Many drugs these days available for UC don't have sulfur such as the biologics. Have you tried any of them?

I wish you well.
 

David

Co-Founder
Location
Naples, Florida
Is that something you're open to? If so, you may want to discuss the possibility with your doctor as they can potentially make a huge difference and you deserve to feel well again.
 
Is that something you're open to? If so, you may want to discuss the possibility with your doctor as they can potentially make a huge difference and you deserve to feel well again.
We'll see how next Tues goes. Frankly I'm about sick of doctors that aren't anything more than drug dealers. :hallo3:
 

Lady Organic

Moderator
Staff member
lol you're funny... but each professional has their speciality. And medical doctors are trained to diagnose and treat with pharmaceutical options. Some GIs are exploring dietary, probiotic approaches with patients but nutrition therapy is only at its debut. I combine different approaches, I have met with naturopaths, nutrionnists, acupunctors, read several books, etc, but without the medical doctor and pharma options, I'd be really sick right now. nothing stops you to explore and combine other avenues on your own with other specialists, but keep in mind that the longer we wait without appropriate management, the more we increase our risks of complications.
 
lol you're funny... but each professional has their speciality. And medical doctors are trained to diagnose and treat with pharmaceutical options. Some GIs are exploring dietary, probiotic approaches with patients but nutrition therapy is only at its debut. I combine different approaches, I have met with naturopaths, nutrionnists, acupunctors, read several books, etc, but without the medical doctor and pharma options, I'd be really sick right now. nothing stops you to explore and combine other avenues on your own with other specialists, but keep in mind that the longer we wait without appropriate management, the more we increase our risks of complications.

Ever work with hydratherapy?
 

David

Co-Founder
Location
Naples, Florida
We'll see how next Tues goes. Frankly I'm about sick of doctors that aren't anything more than drug dealers. :hallo3:
I understand. I wish more doctors took a well-rounded approach to the treatment of Crohn's disease. I feel western medicine is an integral part of a sound treatment regimen, but only part of it, not the whole.
 
you mean colon cleaning, irrigation? No. I have heard this is not something to be done when disease is active if I remember correct.

or you mean cortisone enemas? Only had cortisone foam.
No I'm talking about increasing blood flow to the lower half of the body by soaking in good ol' hot water.
 
Is that something you're open to? If so, you may want to discuss the possibility with your doctor as they can potentially make a huge difference and you deserve to feel well again.

I agree with David,

I just started remicade and for first time, once I finished my prednisone taper, have not had a flare! Only had a few infusion but seems to help. But you have to mentally want to do it as well as need it physically. Best of luck.
 
I was first treated with drugs (prednisone and azulfadine).. thank goodness successfully!!) fro a few years...but for many years I have relied on alternative therapies... and YES to the hot tub. It helps everything!! including calming the mind... Good luck! Soak well... keep seeking docs and healers with whom you resonate! the gut feeling is what matters!
 

Lady Organic

Moderator
Staff member
hi joyful,

where do we get these ''hot tubs''? in a clinic? which specialist offer that? never heard of that.

probably hot sauna and physical activity can do the same thing...
 
Well this new GI has me on 6MP and Balsalazide now. Feel somewhat better. Not 100% yet bet I'm starting to feel optimistic for the first time in a while.
 

Lady Organic

Moderator
Staff member
Good luck!! you are on 50mg of 6-mp? 6-mp gave me several years of remission but at 75mg in the past.
More recently I can only be on 50mg and keeping in remission for about a year now :dusty:
 
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