*this isn't medical advice, just my story.
I was diagnosed with moderately severe Crohn's two and a half years ago after a trip to the ER with tachycardia, profuse sweating and general abdominal and back pain. I had no insurance or any money at all, but after they discovered I probably had Crohn's the hospital rolled out the red carpet for me, giving me free Remicade infusions and methotraxate, GI visits, MRI's, colonoscopies and never ending blood tests.
I thought that peculiar. But I felt lucky to have options.
But from there my condition started snowballing downhill, with the doctor assuring me we just need to keep increasing the remicade, and if I'm sufficiently medicated I can eat whatever I want because Crohn's has nothing to do with diet.
Well after 3 months on Remicade I found myself with zero energy, sleeping 16 hours a day, gaining weight with no change in diet, eyes blurring for no reason, hemmorhoids, constipation, etc, etc etc.
The GI referred me to neurology and endocrinology. There were no answers to be found anywhere.
So, I started adjusting my diet.
Giving up grains got rid of 50% of my symptoms overnight. My energy returned. My vision became normal again. The scabs all over my legs disappeared.
I kept adjusting my diet. And nearly everything I changed had a direct effect on my symptoms, while the remicade never seemed to help at all. But overall I found it difficult to stick with these dietary changes and kept slipping back into bad habits.
After 2 years on remicade, I started getting chronic bronchitis, headaches, fevers and other flu symptoms all the time. The GI assured me it had nothing to do with the immunosuppressants but by then I'd quit believing him.
He did a second colonoscopy and found my condition more or less unchanged.
His response? He wanted to double my remicade. Yes, he wanted to DOUBLE the dose of this drug that for two years had done nothing for me in spite of his promises, and that I was pretty sure was making me chronically ill.
So I went with my "gut feeling" and told him I wanted to take a break from my meds and try some alternative treatments. He predictably smirked and ridiculed me, thinking I should just blindly do whatever he says even though it was doing more harm than good.
Well, a month after missing my infusion date I started getting chronic diarrhea, inflammation from mouth to anus. The GI reluctantly admitted this was rebound symptoms from quitting remicade.
So I tried a mostly raw food diet consisting of mostly fruit smoothies and the diarrhea and the hemorrhoids disappeared in a few days. Eventually I went fully raw and all my gut pain went away except for two ulcers in my colon on the right and left side. These have proved problematic. But overall my energy is way up, my pain is down, my bowel movements are normal again.
I've been having a lot of luck with cabbage juice for the flare ups. It works far better than prednisone or remicade ever did, but only lasts a few hours. Some people claim to have cured their UC with it.
After only a month on raw foods I had some blood work done and was surprised to get back my first normal results in at least 2 years. All my levels were normal which had been off badly while on remicade and the SAD diet. I hadn't had normal hematocrit since I was diagnosed! To me this proves the raw food diet is the perfect human diet. It's what our prehuman ancestors ate before we developed tools for hunting and fire for cooking.
I'm also fermenting vegetables for probiotic therapy. It's yummy stuff and changed my stool color back to a healthy golden brown.
I felt like I was nearly in full remission, when I slipped and ate meat and cheese for a couple days. This stupid mistake knocked me back quite a ways and I've had a bad flare up for a couple days now, but still in only those two spots (no terminal ileum area pain!) and I'm confident I'll get back to full health if I stick with a vegan raw diet, cabbage juice and probiotics.
Interestingly enough, after the hospital realized I probably wasn't going to keep up the remicade, they quit offering me any medical help at all. All communication from them stopped, calls went unreturned and when I did get through I got the runaround. Which begs the question, why were they so keen to get me on that stuff with no payment? Was I part of some experiment? Very suspicious!
The lesson I have learned is that our bodies know how to heal themselves without drugs. They have inflammation and pain as a way of telling us to stop our behavior so it can do repair work. Drugs like prednisone and remicade supress these symptoms, allowing you to keep up the behavior that made you sick in the first place.
I'm not telling anyone to quit their meds. Everyone is different and I don't know what's right for you.
But for me, the meds allowed me to keep damaging myself with bad food when I otherwise would have been too nauseous or in too much pain to eat them.
I have learned to trust my body's signals.
I was diagnosed with moderately severe Crohn's two and a half years ago after a trip to the ER with tachycardia, profuse sweating and general abdominal and back pain. I had no insurance or any money at all, but after they discovered I probably had Crohn's the hospital rolled out the red carpet for me, giving me free Remicade infusions and methotraxate, GI visits, MRI's, colonoscopies and never ending blood tests.
I thought that peculiar. But I felt lucky to have options.
But from there my condition started snowballing downhill, with the doctor assuring me we just need to keep increasing the remicade, and if I'm sufficiently medicated I can eat whatever I want because Crohn's has nothing to do with diet.
Well after 3 months on Remicade I found myself with zero energy, sleeping 16 hours a day, gaining weight with no change in diet, eyes blurring for no reason, hemmorhoids, constipation, etc, etc etc.
The GI referred me to neurology and endocrinology. There were no answers to be found anywhere.
So, I started adjusting my diet.
Giving up grains got rid of 50% of my symptoms overnight. My energy returned. My vision became normal again. The scabs all over my legs disappeared.
I kept adjusting my diet. And nearly everything I changed had a direct effect on my symptoms, while the remicade never seemed to help at all. But overall I found it difficult to stick with these dietary changes and kept slipping back into bad habits.
After 2 years on remicade, I started getting chronic bronchitis, headaches, fevers and other flu symptoms all the time. The GI assured me it had nothing to do with the immunosuppressants but by then I'd quit believing him.
He did a second colonoscopy and found my condition more or less unchanged.
His response? He wanted to double my remicade. Yes, he wanted to DOUBLE the dose of this drug that for two years had done nothing for me in spite of his promises, and that I was pretty sure was making me chronically ill.
So I went with my "gut feeling" and told him I wanted to take a break from my meds and try some alternative treatments. He predictably smirked and ridiculed me, thinking I should just blindly do whatever he says even though it was doing more harm than good.
Well, a month after missing my infusion date I started getting chronic diarrhea, inflammation from mouth to anus. The GI reluctantly admitted this was rebound symptoms from quitting remicade.
So I tried a mostly raw food diet consisting of mostly fruit smoothies and the diarrhea and the hemorrhoids disappeared in a few days. Eventually I went fully raw and all my gut pain went away except for two ulcers in my colon on the right and left side. These have proved problematic. But overall my energy is way up, my pain is down, my bowel movements are normal again.
I've been having a lot of luck with cabbage juice for the flare ups. It works far better than prednisone or remicade ever did, but only lasts a few hours. Some people claim to have cured their UC with it.
After only a month on raw foods I had some blood work done and was surprised to get back my first normal results in at least 2 years. All my levels were normal which had been off badly while on remicade and the SAD diet. I hadn't had normal hematocrit since I was diagnosed! To me this proves the raw food diet is the perfect human diet. It's what our prehuman ancestors ate before we developed tools for hunting and fire for cooking.
I'm also fermenting vegetables for probiotic therapy. It's yummy stuff and changed my stool color back to a healthy golden brown.
I felt like I was nearly in full remission, when I slipped and ate meat and cheese for a couple days. This stupid mistake knocked me back quite a ways and I've had a bad flare up for a couple days now, but still in only those two spots (no terminal ileum area pain!) and I'm confident I'll get back to full health if I stick with a vegan raw diet, cabbage juice and probiotics.
Interestingly enough, after the hospital realized I probably wasn't going to keep up the remicade, they quit offering me any medical help at all. All communication from them stopped, calls went unreturned and when I did get through I got the runaround. Which begs the question, why were they so keen to get me on that stuff with no payment? Was I part of some experiment? Very suspicious!
The lesson I have learned is that our bodies know how to heal themselves without drugs. They have inflammation and pain as a way of telling us to stop our behavior so it can do repair work. Drugs like prednisone and remicade supress these symptoms, allowing you to keep up the behavior that made you sick in the first place.
I'm not telling anyone to quit their meds. Everyone is different and I don't know what's right for you.
But for me, the meds allowed me to keep damaging myself with bad food when I otherwise would have been too nauseous or in too much pain to eat them.
I have learned to trust my body's signals.
Its unfortunate that you lost the support and help from the hospital so you can continue with testing to make sure everything is ok. Crohn's is a life long chronic disease with no known cure so even while in remission its important to have regular testing done not only to make sure we're still in remission (we cannot go by symptoms alone as many members have shown) but to also screen for colon cancer which we are at a greater risk of getting.