- Joined
- Mar 10, 2016
- Messages
- 16
After six months of diagnostic procedures and 3 GIs later, I now have my official diagnosis and a suggested treatment plan for my disease.
I have moderate Crohn's enteritis, with what my doctor described as about 20 patches of sores in the lower part of my small intestine. (Detected by a pill cam endoscopy, my MRI showed no inflammation or abnormalities.) She also described the disease as "early progression", which I believe has more to do with the current lack of strictures and fistulas than the actual length of time that I have had the illness. I am 29 now and have had Crohn's-like symptoms since age 14. The main point that I took home after the appointment was that the extent of the damage was not overly alarming, but the location of the damage is cause for serious concern.
I have been taking 6 mg (rather than the regular 9 mg) of Entocort and following the Specific Carbohydrate Diet religiously for 6 months now. I have also been supplementing - probiotics and Curcumin (from Turmeric) 3x daily, homemade sauerkraut 3x daily, L-Glutamine, fish oil, B-complex, vitamin D daily. I am working less than part time currently, hoping to decrease stress and allow my system to heal.
My GI is recommending that I stop the Entocort and begin combination therapy - a year of Humira and Imuran. My partner and I have spent months researching alternative therapies, including fecal transplants (FMT). My doctor said I am not a candidate for FMT since my disease is only found in the small intestine. We were pretty disappointed about this. She did say that we were on the right track with Curcumin - studies are beginning to show that it may help.
I have been making small gains without Humira - I've gained 5 pounds and kept it on, my joint pain is gone, fatigue is improving, diarrhea has decreased significantly - all of my symptoms have lessened. Of course, I can't be sure how much of this is due to Entocort and how much is due to my diet and lifestyle changes. A side note - my blood work has not shown any deficiencies in the past year and has never displayed any inflammation markers. This has made me feel secure somehow - as though my disease is still fairly mild.
I am still so new to all of this, I received my initial diagnosis just this past April, and received the final assessment of my disease only last week.
Despite my doctor's recommendations, I find myself not wanting to entirely give up hope on my body's ability to heal itself. I am a yoga teacher and mindfulness practitioner, and Western medicine flies in the face of some of my values. I'm feeling overwhelmed.
I can't quite sort out if this is the shock of learning that I have a version of Crohn's that is especially difficult to treat, or if it is my intuition guiding me toward a better way.
I have been experiencing debilitating symptoms for nearly a year now, and have completely paused my career as a singer and voice teacher. I am eager to return to that part of my life, but I don't want to take any shortcuts. I am concerned about the side effects of Humira - lymphoma especially - as well as the fact that it is only 80% effective and that my body will likely become immune to it within a year.
I am interested in hearing feedback from seasoned Crohnies, especially those who have tried alternative treatments. I look forward to learning from you, thank you for taking the time to read and respond to my post.
I have moderate Crohn's enteritis, with what my doctor described as about 20 patches of sores in the lower part of my small intestine. (Detected by a pill cam endoscopy, my MRI showed no inflammation or abnormalities.) She also described the disease as "early progression", which I believe has more to do with the current lack of strictures and fistulas than the actual length of time that I have had the illness. I am 29 now and have had Crohn's-like symptoms since age 14. The main point that I took home after the appointment was that the extent of the damage was not overly alarming, but the location of the damage is cause for serious concern.
I have been taking 6 mg (rather than the regular 9 mg) of Entocort and following the Specific Carbohydrate Diet religiously for 6 months now. I have also been supplementing - probiotics and Curcumin (from Turmeric) 3x daily, homemade sauerkraut 3x daily, L-Glutamine, fish oil, B-complex, vitamin D daily. I am working less than part time currently, hoping to decrease stress and allow my system to heal.
My GI is recommending that I stop the Entocort and begin combination therapy - a year of Humira and Imuran. My partner and I have spent months researching alternative therapies, including fecal transplants (FMT). My doctor said I am not a candidate for FMT since my disease is only found in the small intestine. We were pretty disappointed about this. She did say that we were on the right track with Curcumin - studies are beginning to show that it may help.
I have been making small gains without Humira - I've gained 5 pounds and kept it on, my joint pain is gone, fatigue is improving, diarrhea has decreased significantly - all of my symptoms have lessened. Of course, I can't be sure how much of this is due to Entocort and how much is due to my diet and lifestyle changes. A side note - my blood work has not shown any deficiencies in the past year and has never displayed any inflammation markers. This has made me feel secure somehow - as though my disease is still fairly mild.
I am still so new to all of this, I received my initial diagnosis just this past April, and received the final assessment of my disease only last week.
Despite my doctor's recommendations, I find myself not wanting to entirely give up hope on my body's ability to heal itself. I am a yoga teacher and mindfulness practitioner, and Western medicine flies in the face of some of my values. I'm feeling overwhelmed.
I can't quite sort out if this is the shock of learning that I have a version of Crohn's that is especially difficult to treat, or if it is my intuition guiding me toward a better way.
I have been experiencing debilitating symptoms for nearly a year now, and have completely paused my career as a singer and voice teacher. I am eager to return to that part of my life, but I don't want to take any shortcuts. I am concerned about the side effects of Humira - lymphoma especially - as well as the fact that it is only 80% effective and that my body will likely become immune to it within a year.
I am interested in hearing feedback from seasoned Crohnies, especially those who have tried alternative treatments. I look forward to learning from you, thank you for taking the time to read and respond to my post.
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