Hi everyone!
sorry i havent blogged in a looooong time, honestly i forgot about it : /
well i have midterms all this week so i am just gonna let everyone catch up on what youve been missing...
From what i remeber last time i talked to you guys, i was on Humira and off remicade? Right? lets hope so.
Well, im off humira.. I only had done three treatments and refused to do it after that. This was actually the last time i was at Ginny's house! i just got back from ginny's house i was doing great, and my CHOP doctors agreed. YAY! Until this week yesterday i woke up with a sore throat and my nose was a little runny. Then as the day progressed and I was at my bowling match about an hour away i felt like i was going to puke. I felt so sick. people yelling at me and a 10 lb bowling ball wasnt much help : /
Today were my first two exams. I think i did good on spanish :D .. not so sure about world cultures.... but today my voice is crackly my throat hurts much more and headaches are quite common. i got to get a good nice walk, thanks to my dog.... that helped a little bit as well as my hot shower last night. Well i am now on prednisone and switching every other day between 1mg and 3mg. Its takena long time and i hope to be off by summer. Thanks guys. ill try to blog again soon! just remembered my blog when i logged on go gmail.
Time to go study English and Chemistry!!! OH JOY! sike. wish me luck! talk to you soon :)
Wednesday, January 25, 2012
Friday, July 1, 2011
July 2011 update
It's been a while since posting an update.
So....the bottom line is....I am learning that diet absolutely makes a difference for me.
This past weekend, I even took a 3 day, cooking class at the Restaurant School on Walnut Hill in Philadelphia with Christina Pirello (you can check out her website at christinacooks.com)
I am currently alternating between 4 to 5mg of prednisone (I have been on low dose prednisone like this for a few months now while starting and maintaining a new diet of no junk food etc...)
I lower the dose 1mg at a time (i started lowering dose 1mg at a time once I was at 10mg). I had originally started prednisone earlier this Spring while I was taking humira and basically had side effects that made me lose the use of my left leg and left arm. Thus, my mom quickly put me on 20mg of prednison to see if it would stabilize me and it did stabilize me.
From there, I reduced to 15mg, then to 10mg and once I got to 10mg...i reduced prednisone 1mg at a time, under the support and supervision of my family doctor and the experienced advice of Ginny Harper who has been managing her crohns for more than 30 years without drugs.
Now I am working to stay at 4mg. I am working towards 0mg. I lower the dose when I go about 2 to 3 weeks without ANY symptoms so it could take 2 more weeks, 2 more months or 2 more years until I get off prednisone and my body begins making its own steroids. there is no magic recipe...my body is guiding me.
My daily diet is...
breakfast = soft, warm breakfast cereal (like oatmeal)...sometimes it is oatmeal, sometimes it is an "oatmeal like" type of porridge but made with brown rice, or millet or both etc.. I will often put some rice syrup on the breakfast cereal. EAting a sugar free breakfast has been one of the hardest changes I have had to make but once y ou get used to it and you get used to feeling better....it all starts to become "regular".
sometimes I have scrambled eggs (maybe once a week)...and my mom often mixes the eggs with scrambled tofu (she adds tumeric to make tofu yellowish like eggs).
sometimes I have mochi wafffles (you can buy mochi in more and more stores. we cut them into little squares and put them on a waffle maker).. YUMMY !! I have them about once a week. Sometimes my mom makes some great millet pancakes (eden recipe is on-line and she mixes in arrowmills, organic, sugar free , mulit-grain pancake mix instead of using 100% of the recommended flour in recipe).
So, most days , I have a porridge like warm cereal, which is suppose to be helpful because it doesn't spike my sugar and it's warm temperature is very healing for my digestive tract and not cold and shocking to myd igestitve tract.
Whether I have a porridge, mochi waffles or eggs etc....I also have some cooked veggies.
I know that sounds really weird but it's no different than an omelette with veggies and besides....most of the world's culture's eat some type of veggies in the morning. The USA is a country that doesn't really eat the same way that the rest of the world eats.
Normally, the veggies are green veggies of various kinds and sometimes they are steamed, sauteed, or stir fried etc....or quick boiled. Sometimes, I put a flax oil on top (instead of butter). Flax oil cannot be heated so it is just poured on top.
I also take supplements at breafast: multi-vitamin, d3, b-12, iron, prednisone, L-theanine, Wob-enzymes
I had a doctors appointment in May and I had the BEST results since I was originally diagnosed. My albumin was better, my calcium was better, I felt better, my abcess had formed scar tissue and I was feeling great.
But guess what the doctor said...he said he STILL wanted to put me on methotrexate and he STILL wanted me to do tube feeds and he STILL wanted me to get a G-tube put into my stomach.
Why?
Because he said once I go off my prednisone, my crohns will come back with a vengeance so he wants to prepare me for that terrible day that he says is in my future.
Needless to say, I didn't agree to what he said (and neither did my mom). My mom asked him how they taper off prednisone and he said they just go 15mg to 10 mg to 5 mg and then to zero thus they never taper slowly like I am doing thus I think that is why my response to tapering off prednisone will not be the terrible experience that they predict because I am not tapering directly from 5mg to zero mg.
Well...this is a little update.
So far, I am learning that diet makes a difference and OH...bythe way......once I stopped taking all the big drugs like Humira...I never missed a day of school for being sick and I made the honor role !!
I am attaching a more recent picture of me so you can see how I am looking lately. I forgot to add that in my case, I need to gain weight and take in alot of protein and that is not always easy to do because I don't eat animal protein. So, I use a dairy free, sugar free protein drink that has 25mg of protein per scoop and I have 2 scoops per day. I think this has really, really helped me and was particularly responsible for helping improve my albumin levels and calcium levels. It is by PEACEFUL PLANET and it is the sugar free french vanilla with spirulina powder. I use a blender and it is not the greatest tasting shake but I add very small amounts of sugar free almond extract and vanilla extract. It really helps me.
I hope this blog helps others and please write back because i like to hear what other people are experiencing so we can share and learn from each other.
Bye,
Harley
So....the bottom line is....I am learning that diet absolutely makes a difference for me.
This past weekend, I even took a 3 day, cooking class at the Restaurant School on Walnut Hill in Philadelphia with Christina Pirello (you can check out her website at christinacooks.com)
I am currently alternating between 4 to 5mg of prednisone (I have been on low dose prednisone like this for a few months now while starting and maintaining a new diet of no junk food etc...)
I lower the dose 1mg at a time (i started lowering dose 1mg at a time once I was at 10mg). I had originally started prednisone earlier this Spring while I was taking humira and basically had side effects that made me lose the use of my left leg and left arm. Thus, my mom quickly put me on 20mg of prednison to see if it would stabilize me and it did stabilize me.
From there, I reduced to 15mg, then to 10mg and once I got to 10mg...i reduced prednisone 1mg at a time, under the support and supervision of my family doctor and the experienced advice of Ginny Harper who has been managing her crohns for more than 30 years without drugs.
Now I am working to stay at 4mg. I am working towards 0mg. I lower the dose when I go about 2 to 3 weeks without ANY symptoms so it could take 2 more weeks, 2 more months or 2 more years until I get off prednisone and my body begins making its own steroids. there is no magic recipe...my body is guiding me.
My daily diet is...
breakfast = soft, warm breakfast cereal (like oatmeal)...sometimes it is oatmeal, sometimes it is an "oatmeal like" type of porridge but made with brown rice, or millet or both etc.. I will often put some rice syrup on the breakfast cereal. EAting a sugar free breakfast has been one of the hardest changes I have had to make but once y ou get used to it and you get used to feeling better....it all starts to become "regular".
sometimes I have scrambled eggs (maybe once a week)...and my mom often mixes the eggs with scrambled tofu (she adds tumeric to make tofu yellowish like eggs).
sometimes I have mochi wafffles (you can buy mochi in more and more stores. we cut them into little squares and put them on a waffle maker).. YUMMY !! I have them about once a week. Sometimes my mom makes some great millet pancakes (eden recipe is on-line and she mixes in arrowmills, organic, sugar free , mulit-grain pancake mix instead of using 100% of the recommended flour in recipe).
So, most days , I have a porridge like warm cereal, which is suppose to be helpful because it doesn't spike my sugar and it's warm temperature is very healing for my digestive tract and not cold and shocking to myd igestitve tract.
Whether I have a porridge, mochi waffles or eggs etc....I also have some cooked veggies.
I know that sounds really weird but it's no different than an omelette with veggies and besides....most of the world's culture's eat some type of veggies in the morning. The USA is a country that doesn't really eat the same way that the rest of the world eats.
Normally, the veggies are green veggies of various kinds and sometimes they are steamed, sauteed, or stir fried etc....or quick boiled. Sometimes, I put a flax oil on top (instead of butter). Flax oil cannot be heated so it is just poured on top.
I also take supplements at breafast: multi-vitamin, d3, b-12, iron, prednisone, L-theanine, Wob-enzymes
I had a doctors appointment in May and I had the BEST results since I was originally diagnosed. My albumin was better, my calcium was better, I felt better, my abcess had formed scar tissue and I was feeling great.
But guess what the doctor said...he said he STILL wanted to put me on methotrexate and he STILL wanted me to do tube feeds and he STILL wanted me to get a G-tube put into my stomach.
Why?
Because he said once I go off my prednisone, my crohns will come back with a vengeance so he wants to prepare me for that terrible day that he says is in my future.
Needless to say, I didn't agree to what he said (and neither did my mom). My mom asked him how they taper off prednisone and he said they just go 15mg to 10 mg to 5 mg and then to zero thus they never taper slowly like I am doing thus I think that is why my response to tapering off prednisone will not be the terrible experience that they predict because I am not tapering directly from 5mg to zero mg.
Well...this is a little update.
So far, I am learning that diet makes a difference and OH...bythe way......once I stopped taking all the big drugs like Humira...I never missed a day of school for being sick and I made the honor role !!
I am attaching a more recent picture of me so you can see how I am looking lately. I forgot to add that in my case, I need to gain weight and take in alot of protein and that is not always easy to do because I don't eat animal protein. So, I use a dairy free, sugar free protein drink that has 25mg of protein per scoop and I have 2 scoops per day. I think this has really, really helped me and was particularly responsible for helping improve my albumin levels and calcium levels. It is by PEACEFUL PLANET and it is the sugar free french vanilla with spirulina powder. I use a blender and it is not the greatest tasting shake but I add very small amounts of sugar free almond extract and vanilla extract. It really helps me.
I hope this blog helps others and please write back because i like to hear what other people are experiencing so we can share and learn from each other.
Bye,
Harley
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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