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re: Anyone else here with Crohns Disease?
Posted on 5/13/17 at 8:03 am to BeachDude022
Posted on 5/13/17 at 8:03 am to BeachDude022
It pretty much consumes my life as a patient and dad of patient. I work with researchers all over the world. Unfortunately, there is no one answer. We are in our infancy with our understanding at this point. Diet, biologics, surgery, are all on the table depending on the level of your disease state. SCD failed us, but works for many others. Once your body decides it no longer wants a body part, diet won't do much. Follow the chron s and colitis foundation on FB, lots of good science and humor. The micro biome will provide more answers as we increase our understanding. Mucosal competitive exclusion seems very promising for some. Interestingly, crohn's and autism are being studied somewhat side by side, may end up with same answers in the micro biome.
Eta: the #1 pediatric program no longer distinguishes between c&c, everyone is on a scale of 1-15.Were you scoped and a granuloma found, or just blood markers?
Eta: the #1 pediatric program no longer distinguishes between c&c, everyone is on a scale of 1-15.Were you scoped and a granuloma found, or just blood markers?
This post was edited on 5/13/17 at 8:14 am
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Posted on 5/13/17 at 8:06 am to Radiojones
Needless to say but also remove processed foods, and lactose.
Posted on 5/13/17 at 8:50 am to BeachDude022
Diagnosed back in 2003 with moderate to severe Crohns...it took me several years before things finally got under control. I take Humira every 2 weeks and Lialda daily for maintenance.
When I feel a flare up coming on, I stop eating anything solid and take a dilaudid...it's the only med that will even touch the pain.
I've had more hospital stays with an NG tube than I care to remember.
Mine really has nothing to do with diet, but stress will trigger it for me.
It sucks. Hope you can get a regiment to keep it under control
When I feel a flare up coming on, I stop eating anything solid and take a dilaudid...it's the only med that will even touch the pain.
I've had more hospital stays with an NG tube than I care to remember.
Mine really has nothing to do with diet, but stress will trigger it for me.
It sucks. Hope you can get a regiment to keep it under control
Posted on 5/13/17 at 8:55 am to Skeeter 79
It's interesting you bring up dilaudid. Based on many conversations, I believe we'll acknowledge at stone point that crohn's patients are bad at metabolizing morphine. Dilaudid really does seem to be the answer.
Posted on 5/13/17 at 9:26 am to BeachDude022
Fix your gut and chrons will go away. Find a great probiotic and magnesium based oxygenate. Drink 60+ oz of water daily.
Posted on 5/13/17 at 9:28 am to Radiojones
quote:
Turns out sugar is toxic to our bodies over time and causes massive inflammation
Sugar should be Sched 1 drug
Posted on 5/13/17 at 10:31 am to Big Sway
How about we all just eat lettuce and apples?
Posted on 5/13/17 at 10:40 am to BeachDude022
My wife suffered with it for over 30 yrs. No miracle cure. She has been cut on a few times.
Posted on 5/13/17 at 10:52 am to rrboy
Lots of great info in here. Thanks to everyone that's contributed so far!
Posted on 5/13/17 at 11:43 am to BeachDude022
Weed cures Crohns. It's in the literature.
Posted on 5/13/17 at 12:18 pm to BeachDude022
Diagnosed in 1990 at Oschner N.O.
I went through the gambit of tests for a year before they figured out what it was. I went from a husky 12 year old to basically a skeleton. Luckily they found it with the scope in my small intestine.
I've been on Asacol, Remicade, lialda before. I haven't been on any meds since '07, and I haven't had health insurance in this millennium. When I feel a flare up coming on I stop eating solids.
Over the years I've developed an odd relationship with food, sometimes it just looks like a plate full of pain
. Marijuana helps tremendously with that.
When I have cramping, a HOT arse bath helps me for a bit. Oh, and more weed of course. I can't do the pain pill thing because of the constipation. One pill literally glues my arse shut for a day. And we can't have that!
I went through the gambit of tests for a year before they figured out what it was. I went from a husky 12 year old to basically a skeleton. Luckily they found it with the scope in my small intestine.
I've been on Asacol, Remicade, lialda before. I haven't been on any meds since '07, and I haven't had health insurance in this millennium. When I feel a flare up coming on I stop eating solids.
Over the years I've developed an odd relationship with food, sometimes it just looks like a plate full of pain
. Marijuana helps tremendously with that. When I have cramping, a HOT arse bath helps me for a bit. Oh, and more weed of course. I can't do the pain pill thing because of the constipation. One pill literally glues my arse shut for a day. And we can't have that!
Posted on 5/13/17 at 12:41 pm to BeachDude022
You might want to get genetically tested as well, really good chance it's a part of several syndromes. You might catch something else before it's a problem. hopefully you will never need surgery, medicine should change enough the next 5 to 10 years to keep that from being necessary
Posted on 5/13/17 at 1:23 pm to stonedbegonias
I've been told that weed helps but I get randomly drug tested at work so that's not an option unfortunately. I work in a hospital too, which leaves me wide open for God knows what since it's an autoimmune disorder.
Posted on 5/13/17 at 1:27 pm to BeachDude022
Try some of the new cbd options, a few extracts are supposed to test at 0% thc. They are now using industrial hemp to produce cbd.
Posted on 5/13/17 at 1:30 pm to Skeeter 79
Dilauded is the only med that works for me as well... ended up with a bag because of chrons... scar tissue on anus is the biggest problem... now with inflamed prostate not sure gonna happen next...
Posted on 5/13/17 at 1:40 pm to dukke v
I'm scared to ask, but, was the bag the panacea everyone makes it out to be?
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