I was diagnosed with Crohn's in 2005.
Put on Asacol. Seemed to help somewhat with symptoms. My gastroenterologist is pretty thorough, and regularly monitored my blood while on Asacol. Turned out that Asacol was affecting my renal function and shutting down my kidneys. This was confirmed with a nephrologist, and the Asacol was immediately stopped. Doctor tried Entocort with limited success. Biologics like Humira and Remicade were considered but ruled out due to the fact that I also was diagnosed with Cutaneos T- Cell Lymphoma (CTCL) in 2005. Luckily, the CTCL was in an early stage, and aggressive UVA Radiation treatments (initially 3 times per week, now once every 3 months) have kept the CTCL in remission. However, because of the CTCL, the doctors would not even try Humira or Remicade due to the fact that these drugs could cause or increase the risk of cancer.
Prednisone was the next choice to help control the chronic inflamation in my small intestine, but that is not a drug that can be taken on a long-term basis due to the serious side effects it has. My gastroenterologist sought consultation with 2 other doctors on my case, and the agreement was that I was a candidate for colon surgery to remove the area affected by Crohn's Disease in my small intestine. Thus, I had surgery in June of 2008. Seemed to help initially, but by March of 2011, the Crohn's was back and active in my entire small intestine. This time surgery was not an option, so the only recourse was to keep me on high doses of Prednisone. The side effects were terrible and caused weakness & weight gain to the point that my ability to do normal daily functions was severely affected.
Left with little choice but to continue with Prednisone, I started to search the Internet for other ways to control the Crohn's. Came across a number of threads that led me to research that Dr. Jill Smith of Penn State University was doing on LDN for treatment of Crohn's. Collected documentation on the successful uses of LDN for Crohn's and presented to my doctors. Not one of the doctors would consider prescribing LDN since it was an "off label" treatment that they were not familiar with. I was bold enough to contact Dr. Jill Smith directly, and explained my case to her. She offered to consult with my doctors about LDN, but none took the opportunity to contact her. However, my gastroenterologist wrote up my case, and the insurance company agreed to pick up the expense for me to go to Penn State University Medical Center to see Dr. Smith. Due to my decreasing physical condition, Dr. Smith cleared a spot on her calendar and saw me in June of 2011. Spending about 2 hours with me and reviewing all the test results I brought with me, Dr. Smith felt that I was a good candidate for LDN. She gave me the prescription which I filled that same day using the pharmacy in Lancaster, PA that Dr. Smith used to supply the LDN for her clinical trials.
Within a few short weeks on LDN, my physical condition improved, and my Crohn's symptoms were reduced. I was feeling much better than I had in a long time. Just prior to Thanksgiving in 2011, I suffered a gallbladder attack, which landed me in the hospital for 5 days. After tests confirmed a diseased gallbladder, the decision was made to remove my gallbladder. Due to my previous colon surgery and resulting scar tissue, the surgeon needed to modify her approach to removing my gallbladder. After the surgery, the surgeon came to see me and told me that while removing my gallbladder, she took some time to examine my colon since she was aware of my Crohn's disease. She reported to me that she could find no evidence of active Crohn's disease. Furthermore, CT and MRI tests that were taken in the hospital just prior to my surgery, indicated "no evidence of inflammatory bowl disease". This confirmed to me that the LDN had made a difference with my Crohn's.
I continue to take 4.5mg of LDN every night, and feel the best I have felt in many many years. I have slimmed down to a normal weight, have my energy back, and have normal bodily functions with no Crohn's symptoms. Without Crohn's, I am able to eat normally and finally actually absorb the nutrients from my food that the Crohn's was previously preventing. My system seems to be in good balance, and I feel great! My gastroenterologist (who initially refused to prescribe LDN) has seen the difference that the LDN has made, and recently wrote me a renewal prescription for LDN.
I know this has been a long story, but I just wanted to give hope to others suffering from Crohn's. You need to be your own best friend and seek alternative treatments when traditional methods for some reason fail to help. LDN has changed my life, and I believe it has the ability to make a difference with others suffering with Crohn's. Don't give up!
Ernie
Put on Asacol. Seemed to help somewhat with symptoms. My gastroenterologist is pretty thorough, and regularly monitored my blood while on Asacol. Turned out that Asacol was affecting my renal function and shutting down my kidneys. This was confirmed with a nephrologist, and the Asacol was immediately stopped. Doctor tried Entocort with limited success. Biologics like Humira and Remicade were considered but ruled out due to the fact that I also was diagnosed with Cutaneos T- Cell Lymphoma (CTCL) in 2005. Luckily, the CTCL was in an early stage, and aggressive UVA Radiation treatments (initially 3 times per week, now once every 3 months) have kept the CTCL in remission. However, because of the CTCL, the doctors would not even try Humira or Remicade due to the fact that these drugs could cause or increase the risk of cancer.
Prednisone was the next choice to help control the chronic inflamation in my small intestine, but that is not a drug that can be taken on a long-term basis due to the serious side effects it has. My gastroenterologist sought consultation with 2 other doctors on my case, and the agreement was that I was a candidate for colon surgery to remove the area affected by Crohn's Disease in my small intestine. Thus, I had surgery in June of 2008. Seemed to help initially, but by March of 2011, the Crohn's was back and active in my entire small intestine. This time surgery was not an option, so the only recourse was to keep me on high doses of Prednisone. The side effects were terrible and caused weakness & weight gain to the point that my ability to do normal daily functions was severely affected.
Left with little choice but to continue with Prednisone, I started to search the Internet for other ways to control the Crohn's. Came across a number of threads that led me to research that Dr. Jill Smith of Penn State University was doing on LDN for treatment of Crohn's. Collected documentation on the successful uses of LDN for Crohn's and presented to my doctors. Not one of the doctors would consider prescribing LDN since it was an "off label" treatment that they were not familiar with. I was bold enough to contact Dr. Jill Smith directly, and explained my case to her. She offered to consult with my doctors about LDN, but none took the opportunity to contact her. However, my gastroenterologist wrote up my case, and the insurance company agreed to pick up the expense for me to go to Penn State University Medical Center to see Dr. Smith. Due to my decreasing physical condition, Dr. Smith cleared a spot on her calendar and saw me in June of 2011. Spending about 2 hours with me and reviewing all the test results I brought with me, Dr. Smith felt that I was a good candidate for LDN. She gave me the prescription which I filled that same day using the pharmacy in Lancaster, PA that Dr. Smith used to supply the LDN for her clinical trials.
Within a few short weeks on LDN, my physical condition improved, and my Crohn's symptoms were reduced. I was feeling much better than I had in a long time. Just prior to Thanksgiving in 2011, I suffered a gallbladder attack, which landed me in the hospital for 5 days. After tests confirmed a diseased gallbladder, the decision was made to remove my gallbladder. Due to my previous colon surgery and resulting scar tissue, the surgeon needed to modify her approach to removing my gallbladder. After the surgery, the surgeon came to see me and told me that while removing my gallbladder, she took some time to examine my colon since she was aware of my Crohn's disease. She reported to me that she could find no evidence of active Crohn's disease. Furthermore, CT and MRI tests that were taken in the hospital just prior to my surgery, indicated "no evidence of inflammatory bowl disease". This confirmed to me that the LDN had made a difference with my Crohn's.
I continue to take 4.5mg of LDN every night, and feel the best I have felt in many many years. I have slimmed down to a normal weight, have my energy back, and have normal bodily functions with no Crohn's symptoms. Without Crohn's, I am able to eat normally and finally actually absorb the nutrients from my food that the Crohn's was previously preventing. My system seems to be in good balance, and I feel great! My gastroenterologist (who initially refused to prescribe LDN) has seen the difference that the LDN has made, and recently wrote me a renewal prescription for LDN.
I know this has been a long story, but I just wanted to give hope to others suffering from Crohn's. You need to be your own best friend and seek alternative treatments when traditional methods for some reason fail to help. LDN has changed my life, and I believe it has the ability to make a difference with others suffering with Crohn's. Don't give up!
Ernie
