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Saturday, May 21, 2011
Monday, May 9, 2011
time is proving that diet does make a difference
Update....sorry for being gone for sooo long. No news has been good news. I had my visit with my G.I. doctor this past week w hich was my first visit since I stopped taking humira, stopped taking my tube feeds and began to see for myself wheher eating a whole foods, "no processed food" diet would make a difference. This is what happened at my doctor visit but first....some background info.
As you may remember...I started humira in January 2011 after about 8 months on remicade. After a few doses of humira I had some terrible reactions such as pink eye, worsening eye sight and then my left leg and left arm basically stopped working. So, that's when I was in an emergency situation and went on 20 mg of prednisone which immediately stabilized my condition and slowly gave me the use of my arm and leg back. (this was all happening before I began eating a disciplined diet of non-processed foods etc.) My regular G.I. docs were not involved in my sudden decision to go on 20mg nor did they offer any support or interest in diet thus I pursued dietary changes without their support as well. My family doctor (who is awesome) oversaw my condition and supported my mom's decision to give me 20mg of prednisone.
I did 20mg one day, 15mg the next day and 20mg again and so on and so on and alternated those doses for about 10 days until I stayed at 15mg and slowly tapered down to 10mg and then tapered one mg at time until I reached 6mg which is where I am today.
As many of you might know, I went to Tennessee with my mom at the end of February to learn the dietary program that worked for Ginny Harper and many othesr who suffered from crohns and colitis. (i returned to tennessee by myself in april to learn more and fortify what I had begun a few weeks earlier).
I am now on 6mg of prednisone (it took approximately 7 weeks to go from 20mg of prednisone to 6mg) and now pretty darn disciplined at eating well (no sugar, no white flour, no additives and preservatives or processed foods etc....).
I have regular bowel movments (about 2 to 3 a day that are formed). No nausea, no diarrhea, no stomach pain and no vomiting. I no longer have the gas etc...that I once had and I haven't m issed any school since changing my diet. I don't have the joint pain I used to nor the headaches and eczema I used to either. I also no l onger have any abcesses or fistulas. In fact, the nurse practitioner said that scar tissue had formed where my fistula and abcess had been. YEAH !! Basically, I am currently not experiencing the symptoms of crohns that I used to have though my eye sight is still a bit blurry but that is obviously something I can't say for sure has to do with crohns because lots of people wear glasses who dont have crohns or colitis.
So...back to my doctors appointment I just had with my regular G.I. doctor(s) (again, remember...they havent' seen me since they sent me home 4 months earlier with a prescription to continue taking humira which they had just started in January 2011).
The doctor and nurse practitioner examine me and ask me all kinds of questions including "how do you feel today compared to one year ago?" My answer was "much better" (one year ago I had started remicade).
Then, they took my blood and the results were the best they have ever been since I was diagnosed.
So , ...guess what the doctor said?
Are you ready?
The d octor said, "we want you to still get a GTUBE, take methotrexate and 6MP".
WHY?
The doctor explained that he believes when i am off the prednisone, my crohns will come back with a vengeance (he actually used the word vengeance). Thus, he wants to prepare me for the pending doom and gloom tha the explained is apparently awaiting me when I am no longer taking prednisone.
My mom told him we are tapering off the prednisone one mg at a time but he said that was not necessary and all we had to do was taper down to 5mg and then alternate 5mg one day and no prednisone the next day until I finally stop all prednisone.
I am following the tapering program that Ginny Harper and many others have followed which is 1mg at a time (once you get to 10mg) and my family doctor is heavily involved in my care and he is very supportive of our dietary choices and in fact, he is attending the Nutrition and Health Conference in San Francisco this week which is offered by the Univ. of Arizona Integrative Medical School. (i think that is the name of the conference but it is something like that).
While at my doctor's visit with the G.I. doc, my mom asked the doctor (in his experience), how long it is that his patients begin experiencing crohns symptoms again after they stop taking all prednisone. He said it is normally about 2 months and he also added that most patients on low dose prednisone (which 6mg is considered low dose prednisone) are still having crohns symptoms (which I am not).
So.....my next appointment with these doctors is in two months and it is not sure how many mg of prednisone I will be taking at that time because it depends on how my body responds as I taper down. It could be at 4mg 2mg or zero mg.....WHO KNOWS !!! My family doctor supports our decision to taper down 1mg at a time.
I asked myG.I. doctor about diet and he just ignored me. I even brought up the fact that a doctor made a presentation at an Inflammatory Bowel Disease conference in Phila in February where he said a vegetarian based diet, along with brown rice and miso soup seems to be helpful for crohns patients. My G.I. doctor didn't have any comments about this nor did he ask me what I was eating nor did he tell me that I looked good (yes...I am looking better and not as pale as I used to be and I am gaining weight).
So, the bottom line is....so far I have learned that diet makes a BIG difference in managing crohns and in my experience it also affects how a fistula and abcess can heal.
I am only about 3 months into a life changing approach to try and manage my crohns with dietary discipline(s) that avoid processed foods, sugar, white flour etc. etc. etc.....
We will see what happens from this point forward but so far.....so good.
I would recommend dietary discipline(s) to anyone who is serious about wanting to be free from taking drugs, especially those drugs which have such serious side effects.
I had alot to share because I haven't really shared alot about my medical history up until now. I hope this helps.
See ya !!!....and thanks mom for helping me write this blog post !
As you may remember...I started humira in January 2011 after about 8 months on remicade. After a few doses of humira I had some terrible reactions such as pink eye, worsening eye sight and then my left leg and left arm basically stopped working. So, that's when I was in an emergency situation and went on 20 mg of prednisone which immediately stabilized my condition and slowly gave me the use of my arm and leg back. (this was all happening before I began eating a disciplined diet of non-processed foods etc.) My regular G.I. docs were not involved in my sudden decision to go on 20mg nor did they offer any support or interest in diet thus I pursued dietary changes without their support as well. My family doctor (who is awesome) oversaw my condition and supported my mom's decision to give me 20mg of prednisone.
I did 20mg one day, 15mg the next day and 20mg again and so on and so on and alternated those doses for about 10 days until I stayed at 15mg and slowly tapered down to 10mg and then tapered one mg at time until I reached 6mg which is where I am today.
As many of you might know, I went to Tennessee with my mom at the end of February to learn the dietary program that worked for Ginny Harper and many othesr who suffered from crohns and colitis. (i returned to tennessee by myself in april to learn more and fortify what I had begun a few weeks earlier).
I am now on 6mg of prednisone (it took approximately 7 weeks to go from 20mg of prednisone to 6mg) and now pretty darn disciplined at eating well (no sugar, no white flour, no additives and preservatives or processed foods etc....).
I have regular bowel movments (about 2 to 3 a day that are formed). No nausea, no diarrhea, no stomach pain and no vomiting. I no longer have the gas etc...that I once had and I haven't m issed any school since changing my diet. I don't have the joint pain I used to nor the headaches and eczema I used to either. I also no l onger have any abcesses or fistulas. In fact, the nurse practitioner said that scar tissue had formed where my fistula and abcess had been. YEAH !! Basically, I am currently not experiencing the symptoms of crohns that I used to have though my eye sight is still a bit blurry but that is obviously something I can't say for sure has to do with crohns because lots of people wear glasses who dont have crohns or colitis.
So...back to my doctors appointment I just had with my regular G.I. doctor(s) (again, remember...they havent' seen me since they sent me home 4 months earlier with a prescription to continue taking humira which they had just started in January 2011).
The doctor and nurse practitioner examine me and ask me all kinds of questions including "how do you feel today compared to one year ago?" My answer was "much better" (one year ago I had started remicade).
Then, they took my blood and the results were the best they have ever been since I was diagnosed.
So , ...guess what the doctor said?
Are you ready?
The d octor said, "we want you to still get a GTUBE, take methotrexate and 6MP".
WHY?
The doctor explained that he believes when i am off the prednisone, my crohns will come back with a vengeance (he actually used the word vengeance). Thus, he wants to prepare me for the pending doom and gloom tha the explained is apparently awaiting me when I am no longer taking prednisone.
My mom told him we are tapering off the prednisone one mg at a time but he said that was not necessary and all we had to do was taper down to 5mg and then alternate 5mg one day and no prednisone the next day until I finally stop all prednisone.
I am following the tapering program that Ginny Harper and many others have followed which is 1mg at a time (once you get to 10mg) and my family doctor is heavily involved in my care and he is very supportive of our dietary choices and in fact, he is attending the Nutrition and Health Conference in San Francisco this week which is offered by the Univ. of Arizona Integrative Medical School. (i think that is the name of the conference but it is something like that).
While at my doctor's visit with the G.I. doc, my mom asked the doctor (in his experience), how long it is that his patients begin experiencing crohns symptoms again after they stop taking all prednisone. He said it is normally about 2 months and he also added that most patients on low dose prednisone (which 6mg is considered low dose prednisone) are still having crohns symptoms (which I am not).
So.....my next appointment with these doctors is in two months and it is not sure how many mg of prednisone I will be taking at that time because it depends on how my body responds as I taper down. It could be at 4mg 2mg or zero mg.....WHO KNOWS !!! My family doctor supports our decision to taper down 1mg at a time.
I asked myG.I. doctor about diet and he just ignored me. I even brought up the fact that a doctor made a presentation at an Inflammatory Bowel Disease conference in Phila in February where he said a vegetarian based diet, along with brown rice and miso soup seems to be helpful for crohns patients. My G.I. doctor didn't have any comments about this nor did he ask me what I was eating nor did he tell me that I looked good (yes...I am looking better and not as pale as I used to be and I am gaining weight).
So, the bottom line is....so far I have learned that diet makes a BIG difference in managing crohns and in my experience it also affects how a fistula and abcess can heal.
I am only about 3 months into a life changing approach to try and manage my crohns with dietary discipline(s) that avoid processed foods, sugar, white flour etc. etc. etc.....
We will see what happens from this point forward but so far.....so good.
I would recommend dietary discipline(s) to anyone who is serious about wanting to be free from taking drugs, especially those drugs which have such serious side effects.
I had alot to share because I haven't really shared alot about my medical history up until now. I hope this helps.
See ya !!!....and thanks mom for helping me write this blog post !
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