Crohn's Disease Blog: AWESOME LIFE OF CROHNSBOY
Monday, February 16, 2009
I have just recently started talking to Geoff within the last few weeks and I was very inspired by his story and the stuff he has went through. I actually had the honor of speaking with him on the telephone for about an hour last friday and must admit this is a cool dude. I was speaking with him while he was on his yearly vacation in Florida with his family I was actually pretty jealous he was talking to me and could see the ocean at the same time...lucky guy. I asked Geoff if he could write his story down so that people could read it as I believe it would really be quite inspiring so please take the time to read this dudes awesome story!
I am a Canadian artist who created a style of painting never before seen in the world. It is called Line Painting, and if art is your thing, give it a Google. In the ‘art scene’, it is what I am known for. I also paint public murals in my hometown of St Andrews, and along with my wife, Canadian artist Andrea Mulder-Slater, have a successful studio and gallery on the Bay of Fundy called Jarea Art Studio. We now have a 4-month-old daughter named Jannique.
For balance, I love sports, and am super-active at many levels within my community. My favorite personal pastime these days is mountain biking. I am now riding at the expert-class level, and train about 15 hrs a week to maintain that level of fitness.
If I sound like I’m bragging a bit, I am. I’m proud of my accomplishments, and love my family, and the lifestyle we have created for ourselves.
That is why when I found out I had Crohn’s, I thought my life was over.
I am 39 years old and was diagnosed with Crohn’s in 2004. I became very sick very suddenly, although, looking back, for years prior to my diagnosis, I was “not quite right”.My first Crohn's symptoms began with a tooth problem. An abscess tooth led to large doses of antibiotics. I had no idea how harmful this was to my intestinal flora. It wasn't long before I had a food poisoning, and my imbalance was complete; I was in the vicious cycle. It came and went mildly, at first, but after half a year of on again, off again symptoms, I went for a colonoscopy. I was told I had Crohn's. I am an active, athletic guy, so when I was diagnosed, and told there was no cure, I really felt it was a death sentence.
In the beginning, I followed the advice of my doctors. I ended up on heavier and heavier doses of medication, including immunosuppressants, and became sicker and sicker. My wife searched frantically for any information she could find about the disease. She heard an interview with Lucy Rossett who claimed to have cured herself by following a diet called the specific carbohydrate diet.
My wife tracked down Lucy online and called her to speak with her. She also tracked down Elaine Gottschall and phoned her. Both women told my wife that I could be cured. Although the doctors told me (over and over again) that my illness had nothing to do with diet, these two women insisted that it did. The premise is that Crohn’s sufferers have an imbalance of intestinal flora and by removing foods that feed “bad” bacteria; you can heal your gut.
All of this convinced me to try the diet and it literally saved my life. I haven’t had a flare since August 2006. I consider myself cured – which is amazing considering how sick I was. When I was sick I experienced extreme weight loss (20 –40 pounds each flare), extreme arthritic pain, anal fissures, an anal fistula, cramping and diarrhea (up to 20 times a day). I experienced 4 bad flares after finding out I had Crohn's, and all of them happened after having my teeth cleaned at the dentist. Considering how things began for me ( with an abscess tooth ), this was no coincidence. I cut out all dental visits.
However, today I am the healthiest I have ever been ( and my teeth have never been better!)
The diet does take time and there were definitely set-backs along the way. For me, sometimes it was very difficult to continue on the diet. I had to be rushed to the hospital twice within the first year of being on the SCD—once for an anal fistula ( with life-threatening infection), and again for arthritic pain throughout my body so severe, I could not breath. Through both hospital visits, Andrea brought SCD food from home, so I could maintain the diet. Her love and support made a huge difference.
I also had to slowly reduce all the medication the doctors had me on; you can’t just stop that sort of thing.
Doctors had me on:
4000 mg of Salofalk per day
40-60mg of prednisone per day
Imuran (various doses at different times)
Flagyl (various doses at different times)
Keflex (various doses at different times)
Cipro (various doses at different times)
Antispasmodic meds (various doses at different times)
9mg Entocort per day
Morphine (various doses at different times)
Today, I’m medication free. Also, my fistula has healed—completely. Even the surgeon is amazed.
Many people were very encouraging to me when we started out on this. One of those people was Elaine herself. She told me that if I had some sort of relief within the first month of starting the diet, then the diet would work for me .She said that if the diarrhea and cramping became less, those were the small signs to look for. It is not uncommon for there to be some complications during the initial die off of bacteria. Also, many people experience a nasty set-back (another bacteria die off) at the 3 to 4 month stage. I did. This often discourages people but if they stick with the diet things will improve.
This is the advice Elaine gave me before she passed away:
1.If you do the SCD, do it completely. Do not stray, no matter what.
2.If you experience success on the SCD during the first few weeks, then it will work for you. Be patient.
3.Expect setbacks during the healing process. Healing takes time. Do not be discouraged.
4.If you eat foods that aggravate – then do not eat them, even if they are “legal”.
5.If you require medical intervention, then take it. (my anal fistula, for instance).
6.Sometimes you will require heavier forms of medication to pull you out of a flare.
7.Don’t throw away your medication until you are well on the way to healing.
8.Have patience, it will get better.
I have been symptom free for 2 years now, and considered myself cured. Many great things have happened since finding the SCD. The greatest, of course, is the new addition to my family, Jannique. Andrea and I have been married for 11 years and have always wanted a child. Despite our “best efforts”, we just didn’t think it was something that would happen for us. Turns out, as soon I got well, Andrea was pregnant! This I attribute solely to the SCD.
I have never been more productive artistically. The clarity with which by mind and body are functioning is nothing short of amazing. In the last couple of years I have created many world-class murals in St Andrews NB, including a historic representation of our town’s waterfront 100 years ago that is the centerpiece of the town. Also, I created a large Line Painting exhibition called Coast Lines, shown at the Saint John Arts Centre. On top of that, I create work every year for our gallery, Jarea Art Gallery and Studio. I also am an art instructor at Sunbury Shores Art And Nature Centre.
Athletically, I have never been stronger. The anti-inflammatory nature of the SCD allows me to recover from hard efforts quicker that ever before, and the nutrition the body receives from a well-balanced SCD diet is second-to-none. Many athletes, seeing the results I’ve had, have taken up SCD for its recuperative health benefits; athletes that think I have an edge over them being on the diet.( how about that!!) A bike shop in Florida is even looking into starting a SCD friendly restaurant attached to the shop, so riders can get healthy, anti-inflammatory meals.
My goals at this point are simple. I want to live a long, productive, and healthy life. I want to exist at as high a level athletically as I can, for as long as I can. Thanks to the SCD, I’m on that path. Had I not got sick when I did, who knows what illness may have fallen on my lap, eating a diet high in refined wheat, sugar and processed crap. Both my father, and my father’s brother died of renal cancer (at 39 and 45 years of age respectively), as a direct result of what they exposed themselves to, both internally and externally. Could this have been my fate as well? You bet it could have. I was on that path. Getting Crohn’s forced me to take my health into my own hands. It went from the abstract to reality. I know more about my body, and what I put in it than I ever would have had I not been sick, and in a strange but very real way, I’m thankful for it.
I am also now a fantastic cook!
I plan on introducing more complex carbs in a few months, like whole grain rice, and potatoes. I’ll see how that goes. I’ll never return to a diet high in refined grains and sugars and processed foods. My reasons are simple: since my little brush with mortality, I now realize how precious life is, that I only have this 1 body; one kick at the can – so to speak! I think my daughter and wife deserve to have me around awhile longer yet!
**Please take the time to check out Geoff's BLOG if you get a chance as he has some really great info on there.
Friday, February 13, 2009
I read your post and must say I do agree with many points that you make but I would like to also make people think about the other side of things as well. I think whenever we are doing something you can't just look at something one way. I have spoke with people who knew Elaine and they told me that she was always updating her information and trying to make it better. I also believe that such things like Bifidus and Aloe may have not been completely understood.
Bifidus:You go into some pretty crazy scientific context which many of us do not understand and does not make it more correct, but many points are relevant. On the other hand you do not speak of how Bifidus is the dominant bacteria in the large intestine in healthy people..? Perhaps most of the genus or species that are used in these yogurt starters are danger for people who are on SCD. I read about people that went into flares after they tried Bifidus and as soon as they stopped it went away. Who is to say that when they introduced this new bacteria their body started to go into a detox and go into something called a Herxeimer effect which is a rapid drastic die off which feels very much like a flare. I have experienced this myself personally after doing a probiotic enema. I was very scared to try Bifidus as I read what everyone was writing so I started doing research and I found a book called PROBIOTICS: NATURE’S INTERNAL HEALERS by Natasha Trenev -she is the owner of Natren probiotics and her family has 500+ of years in yogurt experience and probiotics. www.Natren.com After reading this book I believed that maybe everything I understood about Bifidus may be incorrect as I was only basing it upon SCD literature not my own research. I spoke with someone else who also helps people with IBD's and she advised me she had been consuming Natren pro-biotics and she is med free symptom free and so were many of the people that she guided and they all consumed 3 probiotics strains from Natren including Bifidus for 10+ years and also took Georges always active Aloe vera Juice. So I decided I would give it a try as well Needless to say I have been taking the Probiotics for 6 months with no ill effect and noticing that I felt EVEN BETTER as I gave my gut another bacteria which I believed it needed. So I do hope AJ that maybe you can read Natashas book and maybe help provide a reason to why many people have benefited greatly with IBD's have benefited from the strains or genus that Natren offers. to be honest I am person driven by results not scientific theory or assumptions. I believe that the Bifidus issue was a grey area which was not fully investigated or may have been a direct result of bad quality strains that are available in these commercial products. I guess if 5 people who felt daring decided to try this stuff out at their risk and ended up feeling great we may need to investigate further and openly say that the book may have been wrong? everyone makes mistakes.........do they not?
**I went into a bad flare when I was in Hawaii which lasted for 10 days it was most likely due to me over induldging in 4 oranges, 5+ glasses of wine, banana, some other fruit etc in one day- YES I was an idiot and it was my fault lol I believe this through the bacteria balance completely off track. I suffered crazy bloating and pains without being able to pass gas this brought me to my knees the pain was so intense! I suffered for 10+ days then I decided I was going to try a probiotic enema. To keep the story simple I did it and it included Bifidus! My flare went a way by the next day.....I felt almost 100% 2 days after the enema. After discussing this with a mentor she told me that this was very common...read more about my enema experience: http://crohnsboy.blogspot.com/ I wish I would have tried this the first time I would have experienced a flare as I believe I could have ended it pretty quick. If I would have stuck to my legal list I would be in rough shape at this very moment. I looked at it like this it has worked for many people before so maybe it will work for me, I followed my heart and the fact there was proof it worked for other people and thats all I needed. We do not always need to know WHY it works but rather that it does.
Georges Aloe Vera- this product is very different than most products here are some reasons why?
Why isn't George's Aloe Vera thick and greenish in color? Why doesn't it have that bitter taste most other Aloe Vera products have?
The thick greenish substance just beneath the rind in the latex layer of the plant is where the aloins and anthraqinones are located. These substances are irritants and when ingested can cause cramping and diarrhea and in some cases nausea. George's Aloe is a refined product. We remove the antagonistic compounds that cause the bitter taste and irritation to the GI tract.
Maybe this product in its form was not considered or researched by Elaine?? it's possible but does that mean that it really means that it may not be beneficial to people with IBD's? I believe this is a prime example how something was not fully understood and may have been omitted.
I also took this product its looks and tasted like water and I noticed no issues I took 1/4 cup a day in the morning and before bed on an empty stomach. The results were amazing! I noticed that my intestines which hurt for the longest time felt like scratching when food went down started disappearing I felt a soothing sensation and within 2 months my intestines nolonger hurt, my illeum also felt better not sore like it use to. I think any person who has an IBD would want to try 2 gallons of the stuff and make your own decision, The book does not look at how to aid the healing of the mucosal lining and intestines but this product does just that.
I want everyone reading this list to think to yourselves? Remember Elaine gave her life to this book and researched all the time, she updated this list as the years went on and now that she has passed away who will do it. Does this not mean that there is more research required or things that will help you greatly in your healing paths?? We must realize there is a gap growing since she has passed away and people still require information to improve and advance on a daily basis. I encourage you to keep your mind open and dont just be confined to the context of the book because is Elaine would have been alive for the last 5 years you can bet that there would a few additions to the book or her website...............
**Another thing** When Elaine wrote this book she did not expect people to be on this diet for their entire life, read page 70 of the book and you will see that. She does not hope that anyone who recovers from their illness will ever go back to a diet high in refined sugars and refined flours. The godmother of SCD ELaine took her own daughter off this diet when she believed it was the right time. I believe passionately that the intent of this book is to heal people. Many people who go on SCD and get their health back for sustained times 5+ years never get off the diet becuase they are too scared and there are quite of few people who are in this position.....I understand the diet is great and healthy but how does that help prove that the diet CURES Ibd's???? How many people have actually returned to normal diets? I have heard of less than a handful? This should be discussed as it is very relevant and revealing that more research and other things can make this diet more effective. Of course we are managing our disease as we can live med free but to be ultimately cured is to be able to go back to diet which will include some illegals etc and I know I want to be CURED not just managing my symptoms very effectively. I will do this one way or another mark my word.
I just get very bothered when I think people are stuck believing in something that is not perfect and I believe in my heart there many ways which we can increase the effectiveness of this diet and the end result of being cured. Just because the book is finished doesnt mean their is still so many things that can help us. There are always two sides to almost every story you can provide argument for and against.....its healthy to try doing both and you will get a different outlook on things give it a try
Wednesday, February 11, 2009
Well I will admit this was quite a weird experience as I never thought in my life that I would be given myself an enema..lol
If you have read my last post you will see that while I was in Hawaii I went into some kind of flare which just consisted of very bad bloating and cramps but like so bad that they almost put me onto my knees many time over the last 2 weeks so not very fun. Over the past few days I was thinking a lot about what might be going on and I realized the flare was probably a result of eating way too many fruits, drinking wine etc lots of sugars that the bacteria, yeasts, pathogens etc had suddenly had a growing frenzy. I realized I had to change this balance fast or I was in for another few weeks of feeling completely shitty. I decided I was going to try the probiotic retention enema for sure. I bought the stuff to do it a few months ago but I never went through with it until now when I really needed to change my approach up.
I first did 2 warm water enemas which were about 2 cups of warm water cleaning out my colon which were not that fun as i felt urgence to get to the toilet lol the 3rd enema was 1 cup with Natren probiotics as mentioned in Jini Patels website or in her book Listen to your Gut. I did the 3rd enema and put on a movie Lakeview Terrace and relaxed for 2 hours lol I did as the book states to roll from side to side and massage your stomach etc. I had no problem with urgence retaining the formula for 2 hours and once the movie was done there was no liquid and I had no urgence at all.
I did the enema early during the day around 3pm-5pmish. I decided to go out with my friends for a bit around 10pm and I had yet to see any dramtic results from the enema but I was noticing that I felt so tired I could barely keep my eyes open not sure if that was because I was sleep deprived the last few days or the fact that my body was in overdrive trying to fight in my stomach. When I got home I was feeling pretty crappy and was still very bloated and cramps were very frequent I attemped to goto sleep on my back as it hurt too much to sleep any other way. I woke up with a crazy urge to use the can..lol I got up and dashed for the toilet I barely made it lmao when I got there Liquid D and I was on the can for like 15 min stead lol. I went back to bed and throughout the night I went a few more times. In the morning I went again a few more times which were still D but I noticed the bloating was pretty much gone, and the cramps were very minimal.
I think the probiotics killed lots of the bad bacteria in my stomach and the D was a flush of all the toxins and stuff that my body desperately needed to flush out. During the day I was starting to feel a lot better, I was consuming Georges aloe vera to help heal my stomach and comfort it and i could feel it soothing the lining of my intestines etc. I was not eating barely anything as I really wanted to give my gut a chance to relax for a bit, I still took my vitamins but crushed them into powder to absorb better. Towards the end of the day I was feeling a lot better!!! my sexy girlfriend lol even could tell I looked better and my stomach wasnt a hard rock anymore so she was happy because she said she doesnt like to see me in pain......she's a keeper this one :) I also consumed some fresh goats yogurt which I had just finished making and let it cool for 8 hours thought if I ate it right before bed it would give the bacteria a lot of time to flourish and repopulate while I was sleeping. I also took 3 capsules of Mucosa Heal which I emptied into water and drank the contents I will continue to do this for about 1 month to really give my gut a good chance to heal.
I woke up this morning feeling pretty awesome! had a small formed BM, no pain no bloating, the tenderness is very minor-I think my body needs a good few days of rest. I can say with with a lot of confidence that I will be back to tip top shape within a few weeks!! so that kicks ass!! I can't believe how much of a difference that PBR enema made, and I think if more people tried this right from the begininning including myself we would take control of our diseases a lot faster than you can imagine. This method is awesome for getting the bacteria right into your colon etc.
So to tell you the truth it sucked being sick for the last 2 weeks especially while I was in Hawaii. When I look back at it now I am almost grateful for being sick as it has taught me a lot in the process. I have learned that when I feel awesome and other people are doing shitty I really have to remember how I felt when I was in their shoes-feeling depressed, hopeless, insecure etc and I have to be able to communicate effectively that they will overcome this and that stuff will be lost in the process. I also realized life has a great way of humbling you from time to time even if it came in the form of a flare lol I realize you really have to soak up the GOOD TIMES and enjoy them!! Sunshine is always awesome and appreciated the day after the storm.....simply said.
Most of all I learned how powerful that Retention Enema is!! I truly believe that this is an awesome weapon that we can use to get healthy and give our body good chance to get to a point when it is able to start healing effectively. I know for many people especially the people who are on SCD they may not consider this an option (because of Bifidus) but if you are flaring really what do you have to loose, but absolutely everything to gain. If you want more information on this please read Jini's book Listen to your gut or check out her site http://www.listen2yourgut.com/
This was not hard at all to do :) If you decide you want to do this you can get the probiotics from Natren.com or oder them from your local health store. If they dont carry them they will most likely be able to order them in for you as this will be a lot cheaper then ordering them from Jinis site due. Only the Natren products are expensive from her site b/c they must be shipped on ice and express post which costed me like 100.00 which was crazy also if you are in the US this may not be quite as expensive. Your best bet for the Natren products would be to goto your local health store and ask them to bring these products in for you and they will be very reasonably priced, this is what I did as well.
If you have any questions drop me a line
Now feeling Awesome-Jay
**also people I will be the first to admit that while we are on this healing journey as lame way to put it lol we are going to encounter setbacks along the way and I think the truth about natural healing is that sometimes you have to take a few steps back to proceed a few steps further....maybe you just have to back the car up to take another road who knows lol Personally I have hit speedbumps along the way but every time I have got through them and felt even better after I overcome them and I believe this is normal and actually very good. My last issue was probably the result of my own negligence overdoing the fruit and wine so I will take the blame card on that one but I am dusting myself off and trying again as that is what I do. I am back to feeling awesome and will be a little more intuned with my body and what I should and should't do lol thanks for tuning in
Wednesday, February 4, 2009
I decided I was going to visit someone who has assisted me in my healing path. I came to kona for 8 days and I'm waiting to board the plane to come back home so I thought I would make and entry talking about my stay.
When I first got to kona I was amazed how beautiful it was! I have never seen a place so colorful in my entire life, it is almost sureal. I came here to learn some stuff about healing from an scd mentor and boy did I ever. The first day I was here I woke up at 4am and went to meet my frient morts doctor who is a professional chelator. Chelation is a process which the hook you up to an IV and put a chemical agent into your body along with vitamins etc the purpose of the process is to pull out toxins, and metals from many enviromental factors such as led, mercury, and other things that are in your body and tissues. My first treatment went pretty good. I noticed that my circulation had improved quite a bit and my mind felt very clear. After chelation we drove back to my friends orchard and picked some oranges and work around the house. I got to drive a tractor and learn how to pick fresh oranges from the trees actually pretty tricky, I learned a lot.
Since being in hawaii I was eating a lot more scd foods that I normally don't eat such as beans, oranges, scd legal wine, cabbage, mangos, passion fruit, etc. Usually I do not have an extensive diet because I am so busy I keep it simple. I was amazed to see how well mort ate! Our dinners were like 4 courses and were amazing! I never imagined scd could be made so delicious, my mistake. Mort told me that if he has to do scd he has to make excellent tasting food until he is cured and he sure knows how to!
On the second day there I ate a lot of fruit, multiple oranges, papaya, tangelo, and I noticed midway through the day that my stomach began to get really bloated and towards the end of the night felt like it was going to explode. After taking a hot bath I was able to sleep for a few hours. When I woke up in the morning I began to have multiple bm's about 4-5 all formed lol I still had the solid belly and was experiencing quite a bit of pain so the clearing of my bowel confirmed that I was indeed having a flare. When I realized this it pissed me off a lot! I was thinking to myself I came this far and I just screwed it all up, I was just over thinking the worst. Over the next 2 days I continued to have stomach pains but not quite as severe as the initial day. I also had been unable to goto the can for a full 2 days and felt like garbage! But not be a total downer I seen that I was improving day by day. I had slept almost 2 days all day each day lol never slept so much in my life. By the 3rd day I was thinking a little clearer and started thinking that this may have been a flare but there was something very different about this case to how I felt when I had bad crohns flares.
Usual flare- excessive painful, mucus/blood filled bowel movements 10+ a day easy, bad Night sweats, intense bloating, quite a bit of mucus, lots of urgence, very dehydrated-dry mouth and all, lots of pain even in stomach could barely walk, atleast a week of feeling like complete shit consistently.
This flare- minimal bm, d about 2 times a day after 3rd day, intense bloating was main issue! Some tenderness in stomach.
When I started plotting this info out it seemed that maybe this wasn't a typical flare and that it may even be a detox reaction to the chelation and the new vitamins and minerals I was experimenting with. It is hard to be specific or speculate but I have to try. I learned one thing which I tell everyone else to do but failed to take my own advice! Take new things slow! I was a fool for this and that I admit.
Regardless I knew this time was different! I am not quite sure what happened but I'm sure in 30 days or so I will prob have a better explanation.
As of right now I feel a lot better than I did 6 days ago lol stomach is feeling better and I believe it is now time to repair any damage that may have been done. Symptoms are pretty much tender intestines, a few UF bms daily, nothing crazy. Nobody said all this healing stuff was going to be easy lol sometimes natural healing can take you back a few steps before taking you forward but ultimately I am on the road to completely overcome this and inform as many people as I can. Anyone reading this do not let minor setbacks stress you out too much- I know easier said than done but believe me it is very common to have setbacks during this process so don't give up!
Also I learned something else that I think is important for anyone to hear. I think most people who are on scd think they are sacraficing so much and may at sometimes even resent the diet, atleast I may have felt this once or twice...... Lol we are always thinking about a time when we will be able to get off the diet like we are in some rush or something. After staying at morts house I experienced how this diet could be so awesome you could care less if you were on the diet for life! Healthy, no meds and awesome food I can hack that! Our food consisted of fresh fruits, excellent omelletes, scd legal tacos, cooked cabbage, pumkin, scd candy- nuts, honey etc, other baked goods that we're just excellent. For me the foods were amazing and delicious! I could easily stay on the diet for my whole life if that was the verdict. I am very confident that I will advance to a new diet in the next few years
I will be back with an update in about 1 month! Stay tuned ;)
Grab your health back by the balls