W
Wonk
Guest
So the last time I visited my gastroenterologist he told me my crohn's was severe he could feel that my illeum was bulging, my weight was on a steady decline, I was in extreme pain every evening, using pot and occasionally percocet to deal with the pain, my stool was no wider than a pencil and riddled with pentasa fragments and no one could touch my stomach without me crying out. He said he would skip prednisone if I wanted and go straight to Remicade or Humira and start before Christmas. He said if I didn't do that or the pred he would be seeing me in the hospital over the holidays.
After some research and souls searching I felt that at 27 I needed to explore alternatives Before being on stronger drugs. I just didn't feel comfortable with the biological treatments and I was already losing calcium out of my teeth and bones so I viewed pred as a last resort. I also am dying to have another child and the bioligical treatments would close that door for at least three years (the length of time my doc said I would need to stay on it). I am taking pentasa but at the time I was seeing it all in the toilet. So this is what I did:
I went to the health store and bought a tub of this stuff called RevitalX which is a powder that contains nutrition and supplements like l-glutamine which is involved in the rebuilding of lining in the intestine. The protein, carbs, and fat are all derived from hypoallergenic food sources like rice. I also upped my dose of multi-probiotics and started on pharmaceutical grade fish oil, digestive and anti inflammatory enzyme capsules, and a herbal supplement that contains boswellia and curcumin (herbs that have anti inflammatory properties). I started the supplements first and a few days in I noticed that less pentasa was in the toilet bowl. Then I started drinking the RevitalX and only drank that mixed with apple and orange juice 4X a day for three days along with one meal a day of steamed carrots, rice, and olive oil. At the end of the three days of the revitalx 'cleanse' I was seeing no pentasa in the toilet. From then on I slowly added in new foods . I also saw a naturopath and all he changed from my program was the probiotic I was using and did an allergy test which I will get the result of later this month. He also advised against trying any dairy, gluten or egg products until I got the results of the allergy test.
At this point I drink one serving of revitalx and am eating a gluten, egg, and dairy free organic diet that has more variety than the way I have been eating for a year, and sticking with my supplements and pentasa. I noticed a little indigestion after eating beef so I am avoiding that as well (but fish and free range chicken are A-OK). There was only one relapse after i started eating a new almond butter that had some additives and mango pineapple juice. The inflammatory 'just did 1000 situps type' pain returned for a day but went away after cutting out the two suspects.
I am just sharing this info because I spent months reading other chronie's experiences with alternatives before choosing my own program. The difference in the way I am feeling is night and day, I literally am without symptoms. My stool is increasing in diameter, no undigested food or medicine in the bowl, and I have no pain. Before, at the advice of my doctor I was eating low residue diets and subsisting mostly on white toast which now I believe was making me sicker. I would bet my house that my allergy test comes back with a dairy and gluten intolerance. My theory is that the new diet keeps my intestines happy, while that and my supplements have helped with absorption which has also allowed the pentasa to do its job. I am not sure if the anti-inflammatory herbal has done anything but it is inexpensive so I will stick with it. I don't view myself cured, which would mean I could eat anything and go back to normal, but I believe that I have found a way to manage my symptoms, which seems to be working, that I am personally more comfortable with than steroids or biological treatments.
I am not trying to tell anyone to stop their meds just sharing my story for those who might be interested. I will mention that my crohn's was only in my ileum. My colonoscopy showed a severely bulging strictured terminal ileum but my colon was disease free and I made my choice of supplements with my specific symptoms in mind focusing on what people with similar crohn's type had success with when I did my research.
After some research and souls searching I felt that at 27 I needed to explore alternatives Before being on stronger drugs. I just didn't feel comfortable with the biological treatments and I was already losing calcium out of my teeth and bones so I viewed pred as a last resort. I also am dying to have another child and the bioligical treatments would close that door for at least three years (the length of time my doc said I would need to stay on it). I am taking pentasa but at the time I was seeing it all in the toilet. So this is what I did:
I went to the health store and bought a tub of this stuff called RevitalX which is a powder that contains nutrition and supplements like l-glutamine which is involved in the rebuilding of lining in the intestine. The protein, carbs, and fat are all derived from hypoallergenic food sources like rice. I also upped my dose of multi-probiotics and started on pharmaceutical grade fish oil, digestive and anti inflammatory enzyme capsules, and a herbal supplement that contains boswellia and curcumin (herbs that have anti inflammatory properties). I started the supplements first and a few days in I noticed that less pentasa was in the toilet bowl. Then I started drinking the RevitalX and only drank that mixed with apple and orange juice 4X a day for three days along with one meal a day of steamed carrots, rice, and olive oil. At the end of the three days of the revitalx 'cleanse' I was seeing no pentasa in the toilet. From then on I slowly added in new foods . I also saw a naturopath and all he changed from my program was the probiotic I was using and did an allergy test which I will get the result of later this month. He also advised against trying any dairy, gluten or egg products until I got the results of the allergy test.
At this point I drink one serving of revitalx and am eating a gluten, egg, and dairy free organic diet that has more variety than the way I have been eating for a year, and sticking with my supplements and pentasa. I noticed a little indigestion after eating beef so I am avoiding that as well (but fish and free range chicken are A-OK). There was only one relapse after i started eating a new almond butter that had some additives and mango pineapple juice. The inflammatory 'just did 1000 situps type' pain returned for a day but went away after cutting out the two suspects.
I am just sharing this info because I spent months reading other chronie's experiences with alternatives before choosing my own program. The difference in the way I am feeling is night and day, I literally am without symptoms. My stool is increasing in diameter, no undigested food or medicine in the bowl, and I have no pain. Before, at the advice of my doctor I was eating low residue diets and subsisting mostly on white toast which now I believe was making me sicker. I would bet my house that my allergy test comes back with a dairy and gluten intolerance. My theory is that the new diet keeps my intestines happy, while that and my supplements have helped with absorption which has also allowed the pentasa to do its job. I am not sure if the anti-inflammatory herbal has done anything but it is inexpensive so I will stick with it. I don't view myself cured, which would mean I could eat anything and go back to normal, but I believe that I have found a way to manage my symptoms, which seems to be working, that I am personally more comfortable with than steroids or biological treatments.
I am not trying to tell anyone to stop their meds just sharing my story for those who might be interested. I will mention that my crohn's was only in my ileum. My colonoscopy showed a severely bulging strictured terminal ileum but my colon was disease free and I made my choice of supplements with my specific symptoms in mind focusing on what people with similar crohn's type had success with when I did my research.
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