The last 3 days have been amazing. The night of the inoculation I pretty much slept through the entire night, only waking up briefly twice with mild nausea but was able to go right back to sleep. The following nights after that, I've been sleeping straight through the night. I've been able to eat breakfast--pretty much all of my meals without difficulty. My energy has been phenomenal. I was cleaning yesterday, listening to music and I just started dancing. Without even thinking about it, I was so happy I was dancing to the music. Normally, I hate dancing and hate moving anymore than I have to when I don't feel well. In fact, I felt better so fast that I don't think my emotions or neurotransmitters that regulate my mood had time to catch up. I'm still bursting into tears randomly throughout the day, though lately its because of shear bliss and relief, or sometimes as much as I hate to admit, frustration. I don't like being so unstable... its kind of embarrassing. Don't know when I'm going to break the dam loose next.
I was feeling a bit heavier today though, and my hips joints are burning right now... so I have a feeling this might not last much longer. Regardless, I'm going to hold on to this as long as I can.
Yesterday, while I was cleaning, I was listening to some podcasts done by Steven and Jordan from the SCD lifestyle website. They have some great resources for starting the diet, by the way. Anyway, Reid Bryant Kimball was a guest on one of the podcasts I was listening too. He's working towards creating a documentary on alternative medicine and diet for achieving and sustaining remission of Crohn's called Wanted: Crohn's End. It was a very interesting story and the documentary also includes spot lights on helminthic therapy and the SCD diet. By donating as little as $10 you can order a prepaid digital copy of the film set to release in 2012, with higher amounts you can also order DVDs and bonus material. Since he was primarily funding this project out of pocket, if you feel this is something you want to contribute to, I urge you to visit the website and get involved.
I feel I am on the right path, the one that is going to get me into actual remission, and I'm really starting to see the bigger picture here. Reading the novel Breaking the Vicious Cycle by Elaine Gottschal, really helped me achieve a deeper understanding of what is going on inside my gut and how food and the natural bacteria inside are influencing GI disease and quite possibly, other autoimmune diseases as well. While I really don't believe this is an actual cure for Crohn's disease, I do beleive it can help me heal my gut and maintain health. I have no doubt that abandoning the SCD completely in the future after healing it, I may feel "cured," but if the damaging lifestyle is resumed, I'm sure the symptoms would return again. That's why I don't think its a cure but a much safer and more effective option than Remicade, Imuran and probably all drugs out there. Plus, I know that the food I am putting inside my body is safe and much healthier.
I'm almost finished my second week on the diet, which is grain-free, starch-free, dairy-free (for some). I started eliminating everything and ate broiled meat or meat soup, pureed carrots, home made grape gelatin and eggs. Then I introduced acorn squash (which I didn't tolerate and had to remove), then pear sauce, I just introduced the yogourt made with cow's milk which is so far going well, and tomorrow I am introducing zucchini. I am also still taking digestive enzymes and I added betain HCl supplement to my diet. I've stopped taking ranitidine for GERD and am hoping to cure it with the HCL supplements and diet changes. I'm convinced the medication has only made me worse since starting it, since each relapse is worse than the previous.
Side note: the only difference between the SCD yogourt and the yogourt I was previously making is that the SCD yogourt needs to be incubated for at least 24 hours vs the 7 hours I was doing previously. Apparently this uses up most, if not all the lactose and it has more strength as a probiotic. Take a look as this journal article about yogourt and gut health if you're interested.
So my goals are to wait out the 12 weeks for the worms to start working, continue the SCD (specfic carbohydrate diet), and when I see my specialist in January be down at least one medication (Imuran first! I hope).
Sunday 18 September 2011
Wednesday 14 September 2011
Innoculation #2- Re-start from the begining
I just finished re-inoculating myself with 25 hookworms.
The last couple weeks were rough for me. I always say this, but Crohn's disease is a real learning disease. After 8 years of being diagnosed I'm still learning about CD and myself. I frequently think back to before I was on remicade and how sick I was. I was in the washroom constantly, constant low grade fevers, random hot and cold sweats, lots of blood loss, such bad constipation at times, bloating, pain, irritability... . Even though I know I wasn't as seriously sick the last couple months, I was honestly on the verge of losing will to live. For me the worst part isn't the pain or the diarrhea, even the bloating (though terribly uncomfortable), its the fatigue, weakness, nausea, depression that really wears on me. Maybe I've just never been as sick as others, I always feel guilty complaining because I know how lucky I am to have this level of symptom control. But the nausea is consuming. I've never had so much difficulty eating or sleeping.I had no problem starting the SCD because I didn't want to eat anything so the new restrictions didn't bug me at all. The night before I started, I bought some junk food to eat as a farewell... and I was disappointed because I couldn't even eat it. Actually, I hardly wanted to buy it, I don't know what possessed me to even try. Its still there in my cupboard, NOT calling my name. There is nothing I want to eat so pushing bland repetitive food in my mouth was no more difficult than trying to eat regular food. I still have no cravings.
Regardless, I feel CD becomes this horrible unwelcome companion (not friend) that follows you every where like a shadow. It interrupts my conversations, steals my attention away and seems to consume me. I don't feel like I'm one person, I feel like I'm two. Me and my disease: the unwanted tag-along. Its almost like my body is the disease and I'm trapped within, my healthy mind bouncing off the walls screaming to be let out and freed.
And isn't it funny? When I'm healthy, its like I was never sick. Its like I forgot what it was like and think, hey it wasn't so bad. Then the next day if I'm ill, it's like the end of the world and I don't remember anymore what its like to feel healthy. I'm really looking forward to that honeymoon period. I hope I get it again. I need a reminder of what its like to have energy again. I need that reminder again, so I can visualize. I feel hope creeping back. I just want to be able to enjoy my own life and contribute.
The last couple weeks were rough for me. I always say this, but Crohn's disease is a real learning disease. After 8 years of being diagnosed I'm still learning about CD and myself. I frequently think back to before I was on remicade and how sick I was. I was in the washroom constantly, constant low grade fevers, random hot and cold sweats, lots of blood loss, such bad constipation at times, bloating, pain, irritability... . Even though I know I wasn't as seriously sick the last couple months, I was honestly on the verge of losing will to live. For me the worst part isn't the pain or the diarrhea, even the bloating (though terribly uncomfortable), its the fatigue, weakness, nausea, depression that really wears on me. Maybe I've just never been as sick as others, I always feel guilty complaining because I know how lucky I am to have this level of symptom control. But the nausea is consuming. I've never had so much difficulty eating or sleeping.I had no problem starting the SCD because I didn't want to eat anything so the new restrictions didn't bug me at all. The night before I started, I bought some junk food to eat as a farewell... and I was disappointed because I couldn't even eat it. Actually, I hardly wanted to buy it, I don't know what possessed me to even try. Its still there in my cupboard, NOT calling my name. There is nothing I want to eat so pushing bland repetitive food in my mouth was no more difficult than trying to eat regular food. I still have no cravings.
Regardless, I feel CD becomes this horrible unwelcome companion (not friend) that follows you every where like a shadow. It interrupts my conversations, steals my attention away and seems to consume me. I don't feel like I'm one person, I feel like I'm two. Me and my disease: the unwanted tag-along. Its almost like my body is the disease and I'm trapped within, my healthy mind bouncing off the walls screaming to be let out and freed.
And isn't it funny? When I'm healthy, its like I was never sick. Its like I forgot what it was like and think, hey it wasn't so bad. Then the next day if I'm ill, it's like the end of the world and I don't remember anymore what its like to feel healthy. I'm really looking forward to that honeymoon period. I hope I get it again. I need a reminder of what its like to have energy again. I need that reminder again, so I can visualize. I feel hope creeping back. I just want to be able to enjoy my own life and contribute.
Thursday 1 September 2011
Week 14- Are they dead?
I can't believe its been a week already since my last post. It feels only like days.
I'm still feeling nauseous, especially during the night. I think its starting to mess a bit with my head. Just reflecting on how quickly my mood can change. I try to be optimistic, but depression is sneaky. Been up since just past three this morning. Decided why not just get up and blog. Its kinda therapeutic.
I can't figure out whats going on with me now. I'm not sure if I'm experiencing new crohn's symptoms, GERD, or a reaction to the worms. These symptoms are different than I normally get. My bowel habits have changed, I'm suddenly seeing a big change in the food I'm able to digest (suggests inflammation?), I'm achy, cranky, and slightly down. No fever, and going to the washroom 1-2 times a day, usually very loose. When I wake up in the morning, its usually because I'm so nauseous it feels unbearable, then have to run to the bathroom where I expel my entire colon I think... then feel much better usually until I start to eat (50:50). It could be GERD. That's what my doctor usually says when I'm feeling sick at night. But this is different, and I've stopped eating in the evening and even switched my zantac to the evening with no change in symptoms. Sometimes I get intense stomach cramps with my nausea too. I feel like its the crohn's.
I emailed Garin yesterday. Aug 8th I had to have a TPD booster (tetanus, polio, diphtheria) as a requirement for admission into the nursing program. Garin thinks maybe that killed off my worms. I'm going on tuesday to try and get a lab test to count the ova in my stool from my doctor. Dr. Llamas wants to wait for the results before trying to reinoculate with more hookworms. I'm not sure if they're alive or dead. I feel like they're alive because a couple weeks ago I didn't get a reaction to mosquito bites. Also my joint pain isn't too bad. Though this is starting to confuse me too. I'm not taking any pain medication for joint pain anymore. Sign it's improved. But I feel like I have two kinds of joint pain. One floats between joints, feels more burning and fuzzy-like and the other kinda sets into specific joints, like my hands and fingers, toes and hips. They feel sore, achy and stiff and sometimes bruised. The first kind is almost completely gone and the second kind I have almost every day, sometimes worse and sometimes better. So I really don't know.
Everything is OK. It could be a lot worse. Its just frustrating, becoming disruptive and I'm starting to lose tolerance, you know?
I may attempt the specific carbohydrate diet this week. I've read up on it and feel like there is a chance it could help and may be worthwhile. Its worth a shot at least.
I'm still feeling nauseous, especially during the night. I think its starting to mess a bit with my head. Just reflecting on how quickly my mood can change. I try to be optimistic, but depression is sneaky. Been up since just past three this morning. Decided why not just get up and blog. Its kinda therapeutic.
I can't figure out whats going on with me now. I'm not sure if I'm experiencing new crohn's symptoms, GERD, or a reaction to the worms. These symptoms are different than I normally get. My bowel habits have changed, I'm suddenly seeing a big change in the food I'm able to digest (suggests inflammation?), I'm achy, cranky, and slightly down. No fever, and going to the washroom 1-2 times a day, usually very loose. When I wake up in the morning, its usually because I'm so nauseous it feels unbearable, then have to run to the bathroom where I expel my entire colon I think... then feel much better usually until I start to eat (50:50). It could be GERD. That's what my doctor usually says when I'm feeling sick at night. But this is different, and I've stopped eating in the evening and even switched my zantac to the evening with no change in symptoms. Sometimes I get intense stomach cramps with my nausea too. I feel like its the crohn's.
I emailed Garin yesterday. Aug 8th I had to have a TPD booster (tetanus, polio, diphtheria) as a requirement for admission into the nursing program. Garin thinks maybe that killed off my worms. I'm going on tuesday to try and get a lab test to count the ova in my stool from my doctor. Dr. Llamas wants to wait for the results before trying to reinoculate with more hookworms. I'm not sure if they're alive or dead. I feel like they're alive because a couple weeks ago I didn't get a reaction to mosquito bites. Also my joint pain isn't too bad. Though this is starting to confuse me too. I'm not taking any pain medication for joint pain anymore. Sign it's improved. But I feel like I have two kinds of joint pain. One floats between joints, feels more burning and fuzzy-like and the other kinda sets into specific joints, like my hands and fingers, toes and hips. They feel sore, achy and stiff and sometimes bruised. The first kind is almost completely gone and the second kind I have almost every day, sometimes worse and sometimes better. So I really don't know.
Everything is OK. It could be a lot worse. Its just frustrating, becoming disruptive and I'm starting to lose tolerance, you know?
I may attempt the specific carbohydrate diet this week. I've read up on it and feel like there is a chance it could help and may be worthwhile. Its worth a shot at least.
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