I finally found out what has being going on with all these hives I've been getting. I called Garin from wormtherapy and he explained that this skin reaction I've been having is a normal response to the worms and is usually seen after the 3rd or 4th inoculation. This is only my second inoculation, but maybe I'm more sensitised to the worms because I harboured parasites as a child? Perhaps.
The last entry I wrote, I mentioned that I had come off of the imuran. This made me so happy to finally get off this medication, especially because the risk of cancer is even higher when taking imuran combined with remicade, which I was. I felt it was better to come off imuran than remicade, because remicade I saw actual noticeable improvements in my health after infusions, whereas with imuran I never saw a single improvement in my symptoms, just in terms of my blood work. Anyways, last week I started flaring again.
One Saturday morning I woke up and I just felt drained. I didn't get any work done that day and just lounged around and napped and rested. The fatigue persisted and I thought, maybe I'm getting the flu or a cold because I also had a sore throat, and I was feeling pretty achy all over. By the end of the week, I started passing blood again. This really sucked! I was feeling SO GOOD!! The best I've felt in years!!
Such a blow to be back peddling. I don't regret coming off the imuran. I'm glad I'm off it but I was also hoping to stay in remission. It could be much worse of course. I still have very little to no pain, almost no gas and I'm managing to stay out of the washroom for most of the day. Maybe making one extra trip a day, that's it. The SCD diet is working at managing my symptoms so well! I just wish it would cure me.
Regardless, at least this will be an indication of when the worms start working. I'm finally at week 12! Let the therapeutic stage begin!
Friday 2 December 2011
Saturday 12 November 2011
Week 8-- Its begining to feel a lot like remission!
Wow its been a month since my last entry!
Its been great a month. I'm the happiest I've been since I can remember. I wake up almost every day feeling like a NORMAL person!! My day is almost never interrupted by being sick.
Solid bowel movements, with the odd loose one. Usually only once a day. The amount of undigested food passing has reduced quite a bit. My joint pain only mildly bothers me. I'd say its almost gone... but can't say its completely gone.
No heart burn or acid reflux despite the fact I'm not taking the meds for it anymore. I've also weaned off my imuran, FINALLY. There has been no increase in symptoms either coming off of it. This was the first time--in a long time that I remember-- that after 8 weeks I still didn't feel like I needed my remicade.
I know I'm not healed. I still have Crohn's disease and if I eat something I'm not supposed to I get hit with symptoms, which can vary. But I don't care, I feel fantastic and I'm still 3.5 weeks from the therapeutic stage. The stomach pains from the proinflamatory phase have pretty much completely disappeared now. One more med to go! Hopefully my next remicade infusion is the last one.
Also, I think I may have mentioned before that I've had this crappy metallic taste in my mouth for like 3 years now. Finally got a diagnosis that fits: zinc deficiency. I'd tried to take zinc supplements in the past but they always made me vomit. Now I just take the same zinc tablets but break them in half and take them at separate times of the day. The metallic taste is almost gone now. Its improved quite a bit.
There's also been some not so nice stuff happen too that I should mention. I noticed that my anxiety has been worse. This might be due to low magnesium which I just started supplementing for this week. It seems I just can't relax. If something small sets me off, even after it resolves I'm still stressed and anxious even though I know its not rationale. Its been affecting my sleep. I have a hard time falling asleep and then usually wake up early and can't go back to sleep. This is very unusual for me. I used to sleep 9-12 hours a day.
Another thing that happened is I've been getting some weird allergic reactions. I've been randomly itchy in different areas and was finding small bumps. Then one morning in the shower, I noticed my should had a rash. When I got out it started burning and swelling. I took some Benadryl and it went away. Then almost 5 days later, I had woken up out of bed, been up almost an hour and was still in my pajamas when I started to get itchy. I was scratching and then looked down and I had rash with hives on my shoulder again, then on my chest... then on my neck and chin, and it started on my feet and legs too. It was burning and hot to the touch but went away with Benadryl. I ate nothing new, used no new soap.... didn't even touch anything different. Its been a week since the last reaction... hopefully it doesn't come back. Still though, every time I itch now I'm worried I've broke out into that rash.
That's all for me. No more really to update on. I'm still loving the SCD diet and I've found that even though I don't tolerate cow's milk dairy, I do tolerate goats milk dairy much better. There are more and more foods now that I'm eating and the food is starting to become much more enjoyable. And I still haven't cheated yet, so I am proud of myself for that. So far, I can conclude the specific carbohydrate diet is doable and enjoyable.
Its been great a month. I'm the happiest I've been since I can remember. I wake up almost every day feeling like a NORMAL person!! My day is almost never interrupted by being sick.
Solid bowel movements, with the odd loose one. Usually only once a day. The amount of undigested food passing has reduced quite a bit. My joint pain only mildly bothers me. I'd say its almost gone... but can't say its completely gone.
No heart burn or acid reflux despite the fact I'm not taking the meds for it anymore. I've also weaned off my imuran, FINALLY. There has been no increase in symptoms either coming off of it. This was the first time--in a long time that I remember-- that after 8 weeks I still didn't feel like I needed my remicade.
I know I'm not healed. I still have Crohn's disease and if I eat something I'm not supposed to I get hit with symptoms, which can vary. But I don't care, I feel fantastic and I'm still 3.5 weeks from the therapeutic stage. The stomach pains from the proinflamatory phase have pretty much completely disappeared now. One more med to go! Hopefully my next remicade infusion is the last one.
Also, I think I may have mentioned before that I've had this crappy metallic taste in my mouth for like 3 years now. Finally got a diagnosis that fits: zinc deficiency. I'd tried to take zinc supplements in the past but they always made me vomit. Now I just take the same zinc tablets but break them in half and take them at separate times of the day. The metallic taste is almost gone now. Its improved quite a bit.
There's also been some not so nice stuff happen too that I should mention. I noticed that my anxiety has been worse. This might be due to low magnesium which I just started supplementing for this week. It seems I just can't relax. If something small sets me off, even after it resolves I'm still stressed and anxious even though I know its not rationale. Its been affecting my sleep. I have a hard time falling asleep and then usually wake up early and can't go back to sleep. This is very unusual for me. I used to sleep 9-12 hours a day.
Another thing that happened is I've been getting some weird allergic reactions. I've been randomly itchy in different areas and was finding small bumps. Then one morning in the shower, I noticed my should had a rash. When I got out it started burning and swelling. I took some Benadryl and it went away. Then almost 5 days later, I had woken up out of bed, been up almost an hour and was still in my pajamas when I started to get itchy. I was scratching and then looked down and I had rash with hives on my shoulder again, then on my chest... then on my neck and chin, and it started on my feet and legs too. It was burning and hot to the touch but went away with Benadryl. I ate nothing new, used no new soap.... didn't even touch anything different. Its been a week since the last reaction... hopefully it doesn't come back. Still though, every time I itch now I'm worried I've broke out into that rash.
That's all for me. No more really to update on. I'm still loving the SCD diet and I've found that even though I don't tolerate cow's milk dairy, I do tolerate goats milk dairy much better. There are more and more foods now that I'm eating and the food is starting to become much more enjoyable. And I still haven't cheated yet, so I am proud of myself for that. So far, I can conclude the specific carbohydrate diet is doable and enjoyable.
Tuesday 11 October 2011
Week 4: Pro-inflammatory phase
The last time I posted was about 3 weeks ago. Of those three weeks, the first, I started to come off the honeymoon or "bounce". I was starting to wake up closer to the morning either to vomit or because I was too nauseous to sleep. Then I removed dairy from my diet, that was the 28th of September. My energy sored! My mood was elevated, my nausea went away and I was so productive around the house, with my school work, and I was also enjoying my time with friends. Anyway, just a few days ago, I think this past Thursday, Oct 6th, I started getting pain again in my lower gut. I have colitis in my rectum and I think in patches around my large intestine. Lots of scar tissue. At this point I was still introducing new foods and I attributed the pain to green beans. This weekend I started to feel nauseous again at night, which I attributed to some "fresh" pineapple juice. However, Monday morning I woke up in a lot of pain. The pain got so intense, I thought my bowel must be rupturing and I may have to call an ambulance. I was soaked with sweat and so intensely nauseous at the same time but of course could pass nothing and had nothing to vomit anyway. This was at around 2 am. It lasted for about half an hour and went away. Then around 8 am I woke up with excruciatingly painful diarrhea multiple times. I had added nothing new to my diet because I was eating in my food safe zone so I could feel better again. So I think this may be due to the pro-inflammatory phase of the worms. I'm having joint pain again too, when it was absent for about a week before. Also feeling pain every time I eat or drink. Anyway, after that morning I have been just fine, but having a lot of tenesmus (sharp stabbing pain, like a knife up the butt?). Its awful and sudden and unfortunately can linger for hours out of my day.
Also on the brighter side: I am thrilled with the results I'm seeing with the SCD. Despite all this pain and whatever, I'm not bloated at all, have almost no gas (which cuts way back on cramping), and I've lost an additional 12 lbs (added to the 7 lbs I lost from being sick). This is good for me as I was overweight and am now back into my appropriate BMI. Also I don't crave or think about food and am never hungry. Its very liberating. I'm going on my 6th consecutive week (without cheating!).
Anyway.....Bring on week 12!!! I know once the pro-inflammatory phase is over I'll go back to how I was feeling before. WAY better!
Also on the brighter side: I am thrilled with the results I'm seeing with the SCD. Despite all this pain and whatever, I'm not bloated at all, have almost no gas (which cuts way back on cramping), and I've lost an additional 12 lbs (added to the 7 lbs I lost from being sick). This is good for me as I was overweight and am now back into my appropriate BMI. Also I don't crave or think about food and am never hungry. Its very liberating. I'm going on my 6th consecutive week (without cheating!).
Anyway.....Bring on week 12!!! I know once the pro-inflammatory phase is over I'll go back to how I was feeling before. WAY better!
Sunday 18 September 2011
Day 4, the SCD, and Wanted: Crohn's End
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).
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).
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.
Friday 26 August 2011
Week 13 and SCD
Well... another week's gone by. I'm feeling good. Still feeling very good actually. Very little joint pain, even though yesterday there was a massive thunder storm with tornado warnings. I don't think my joint pain is weather related. Finally got an appointment with the rheumatologist. November 1st.
My BMs are normal. Or as normal as they've ever been for me. I'm only going once a day too. The problem is: its very evident I'm not digesting food well. I tried those stupid digestive enzymes. Pretty sure they don't work; at least not for me. I'm becoming convinced that even though I'm in remission, and I may come even closer to remission without drugs (that's the dream) with these helminths, I may not "feel good" truly until I heal my intestine. Heal my gut. I'm still nauseous all the time! Especially first thing in the morning. I'm not vomiting anymore though, but still getting a lot of dry heaves. No one knows why. I've given up trying to figure out why I get nauseous. I think the worms temporarily made it worse, cause now its back to how it normally is, just slightly worse.
I've been considering the Specific Carbohydrate Diet but have been to scared to ever try. I hear so many good things about it. People say they feel great and control their symptoms of IBD and others say the same but that its too hard to follow, and some it never helped. I'm just not good at following strict diets long term. I don't know if I can do it and I'm afraid of failing. I'm tired of not feeling myself. I believe in the science. I believe it can work. I read the introductory chapters this morning. It seems like a starvation diet. I'm at least going to order the books and read further. I don't know if this is something I can do strictly for life, but maybe 3 months. I already know low sugar and low carbohydrate helps me. I need more information before I can commit.
My BMs are normal. Or as normal as they've ever been for me. I'm only going once a day too. The problem is: its very evident I'm not digesting food well. I tried those stupid digestive enzymes. Pretty sure they don't work; at least not for me. I'm becoming convinced that even though I'm in remission, and I may come even closer to remission without drugs (that's the dream) with these helminths, I may not "feel good" truly until I heal my intestine. Heal my gut. I'm still nauseous all the time! Especially first thing in the morning. I'm not vomiting anymore though, but still getting a lot of dry heaves. No one knows why. I've given up trying to figure out why I get nauseous. I think the worms temporarily made it worse, cause now its back to how it normally is, just slightly worse.
I've been considering the Specific Carbohydrate Diet but have been to scared to ever try. I hear so many good things about it. People say they feel great and control their symptoms of IBD and others say the same but that its too hard to follow, and some it never helped. I'm just not good at following strict diets long term. I don't know if I can do it and I'm afraid of failing. I'm tired of not feeling myself. I believe in the science. I believe it can work. I read the introductory chapters this morning. It seems like a starvation diet. I'm at least going to order the books and read further. I don't know if this is something I can do strictly for life, but maybe 3 months. I already know low sugar and low carbohydrate helps me. I need more information before I can commit.
Saturday 20 August 2011
Week 12!!
Its week 12. Finally made it! Since I've finished class, I've mostly been driving/busing around, visiting friends and family. I've been feeling pretty good these last few weeks. Week 10, the nausea came back with a force a few days right before my final exam and lasted about another week after that--with scattered good days. There were a quite a few days around week 10 where I did not get much done and basically was in and out of bed all day, just waiting for the day to pass so I could wake up and feel better.
However, this past week has been very good. Still battling nausea from time to time, but its the normal type I usually get and it doesn't make me vomit, just feel uncomfortable. Pain has been minimal too, though I've noticed that I'm not tolerating vegetables well again. I have a list of foods that normally bother me, (apples, citrus, broccoli, brussel sprouts, red pepper, spinach, white rice) but i haven't been tolerating any vegetables at all, except maybe romaine. They go right through me, undigested. I've been thinking, this really can't be good for me to pass so much undigested food. My mom said her specialist once told her not to eat foods she can't digest... not really sure the reason behind it. Though I read an article the other day that said poorly digested food causes inflammation and an immune response. That can't be good. Certainly doesn't make me feel good. So yesterday I happened to be in a health food store and I picked up some digestive enzymes which said its supposed to improve digestion and can alleviate bloating and cramping. Have to see if it works. I'm working on my GI ecosystem, but I know its going to take time. I've been eating low sugar, trying to eat as many vegetables as possible, plenty of fibre and unsaturated fats, low meat, and taking probiotics.
I've noticed in the last two weeks that I'm not nearly as sleepy as I used to be. I was needing at least 9-10 hours of sleep a night and never feeling rested. By 3:00 pm, I would feel exhausted with no energy. For the last couple weeks, I've been getting up earlier in the morning, without an alarm clock and staying up fairly late. Maybe getting 7-8 hours of sleep but been feeling pretty "wired" compared to my old self. My left ankle hasn't swollen up in at least a couple of weeks, and my joint pain, while still here now in again, is much milder. I also wanted to share something I thought was odd but kinda cool. While I was visiting my mom, (she lives in a woodsy, cottage area) I must have gotten like 10 mosquito bites. They always seem to love me. While I did get bites, and did get spots from the bites, they were completely flat and not at all itchy. They didn't bother me at all and simply disappeared. I'm thinking: this has to be from the worms.
Also, I'll mention, I visited my GI specialist this past Tuesday. It was an interesting visit because when I first came in I saw a resident doctor first. That's always kinda fun for me because they go a bit more in depth for training. I was talking to him and telling him about my worms, which he was fascinated by. He kept insisting that I took anti-helminth drugs not helminths! But I had to emphasize and show him where the actual hookworms entered. Then my GI doc came in and I got to listen to the both of them discuss my case and the helminths. My doc has done A LOT of research since I've seen him last. He was originally saying how there were only a couple studies that showed positive results with helminthic therapy but that the research died off. Now he was rattling off everything, discussing the difference between UC and Crohn's and how they are affected by the worms differently and saying how positive the results are. He told me I'm doing so well I don't have to see him until January! That's huge, I've been seeing him every two months for years and now I'm going five months. :D
I hope in January they can lower me on something! I want to get off the imuran more than anything, even more than the remicade. I hope that is lowered first!
However, this past week has been very good. Still battling nausea from time to time, but its the normal type I usually get and it doesn't make me vomit, just feel uncomfortable. Pain has been minimal too, though I've noticed that I'm not tolerating vegetables well again. I have a list of foods that normally bother me, (apples, citrus, broccoli, brussel sprouts, red pepper, spinach, white rice) but i haven't been tolerating any vegetables at all, except maybe romaine. They go right through me, undigested. I've been thinking, this really can't be good for me to pass so much undigested food. My mom said her specialist once told her not to eat foods she can't digest... not really sure the reason behind it. Though I read an article the other day that said poorly digested food causes inflammation and an immune response. That can't be good. Certainly doesn't make me feel good. So yesterday I happened to be in a health food store and I picked up some digestive enzymes which said its supposed to improve digestion and can alleviate bloating and cramping. Have to see if it works. I'm working on my GI ecosystem, but I know its going to take time. I've been eating low sugar, trying to eat as many vegetables as possible, plenty of fibre and unsaturated fats, low meat, and taking probiotics.
I've noticed in the last two weeks that I'm not nearly as sleepy as I used to be. I was needing at least 9-10 hours of sleep a night and never feeling rested. By 3:00 pm, I would feel exhausted with no energy. For the last couple weeks, I've been getting up earlier in the morning, without an alarm clock and staying up fairly late. Maybe getting 7-8 hours of sleep but been feeling pretty "wired" compared to my old self. My left ankle hasn't swollen up in at least a couple of weeks, and my joint pain, while still here now in again, is much milder. I also wanted to share something I thought was odd but kinda cool. While I was visiting my mom, (she lives in a woodsy, cottage area) I must have gotten like 10 mosquito bites. They always seem to love me. While I did get bites, and did get spots from the bites, they were completely flat and not at all itchy. They didn't bother me at all and simply disappeared. I'm thinking: this has to be from the worms.
Also, I'll mention, I visited my GI specialist this past Tuesday. It was an interesting visit because when I first came in I saw a resident doctor first. That's always kinda fun for me because they go a bit more in depth for training. I was talking to him and telling him about my worms, which he was fascinated by. He kept insisting that I took anti-helminth drugs not helminths! But I had to emphasize and show him where the actual hookworms entered. Then my GI doc came in and I got to listen to the both of them discuss my case and the helminths. My doc has done A LOT of research since I've seen him last. He was originally saying how there were only a couple studies that showed positive results with helminthic therapy but that the research died off. Now he was rattling off everything, discussing the difference between UC and Crohn's and how they are affected by the worms differently and saying how positive the results are. He told me I'm doing so well I don't have to see him until January! That's huge, I've been seeing him every two months for years and now I'm going five months. :D
I hope in January they can lower me on something! I want to get off the imuran more than anything, even more than the remicade. I hope that is lowered first!
Friday 29 July 2011
Week 9
Its week 9, only three more weeks until week 12. I'm really looking forward to this, as hopefully I'll see even more improvements. I have been feeling much better since my last blog entry. Actually, the next day after blogging last, I woke up feeling great! All this week has been pretty good. The nausea is almost completely resolved. Yesterday I had a few hours in the afternoon where I was feeling pretty nauseated. Had to break from my studying, but it resolved on its own. This morning too, after eating breakfast I was afraid I was not going to keep it down. I noticed the early cues to where it was heading and took some Benadryl. Forty-five minutes later, I'm back to myself again writing this entry. I hope to be very productive this week. I have a big pathophysiology exam this Wednesday to study for. Its worth 45% of my mark so I really need to focus. However, I really do enjoy the material. I'm fascinated with health, diseases and the body, not to mention human biochemistry. I actually read something yesterday that was really interesting to me, as my mother has short-gut syndrome. Obviously a big concern with short-gut syndrome is taking in enough calories and nutrients because absorption is limited when you only have a small portion of your intestine remaining. Anyway, have you ever heard about someone losing a kidney and the other remaining one grows bigger and compensates for the loss of the first? Or having a part of your liver removed and the remaining piece regenerates and compensate for the partial removal? Well according to my text, those affected by short-gut syndrome, the villi and the crypts in the ileum increase in size and absorptive capabilities. (Villi are these long finger like projections in the inside of the intestine. If were you touch them, they feel like almost like soft fuzz because they're so small and fine. They're there to increase the surface area of your intestine so more tissue can come in contact with food to absorb it.) The adaptation doesn't return you to normal but every little bit helps. Our bodies are so amazing!
Anyway, back to this past week. I'm feeling very good. Nausea is much better, and almost no bloating at all. My abdomen still remains very tender but there are days which are much better than others. Also I've been having joint pain return again. Its mild compared to what is was, but has been pretty constant in my left leg (toes, ankle, knee) for the past five days or so. Its a little disheartening but, I try to remember that this is a process, not a one day cure all. And I have been expecting some ratcheting which will no doubt continue. Overall, if I weigh the good and the bad, the balance is tipping far to the good. I've been giddy this week with my flat tummy. Its so nice and soft and when I sit--it goes in! (Instead of being forced out, all distended). I can move around and the change my position with much less discomfort. Its so liberating! Ahh... the little joys in life.
Anyway, back to this past week. I'm feeling very good. Nausea is much better, and almost no bloating at all. My abdomen still remains very tender but there are days which are much better than others. Also I've been having joint pain return again. Its mild compared to what is was, but has been pretty constant in my left leg (toes, ankle, knee) for the past five days or so. Its a little disheartening but, I try to remember that this is a process, not a one day cure all. And I have been expecting some ratcheting which will no doubt continue. Overall, if I weigh the good and the bad, the balance is tipping far to the good. I've been giddy this week with my flat tummy. Its so nice and soft and when I sit--it goes in! (Instead of being forced out, all distended). I can move around and the change my position with much less discomfort. Its so liberating! Ahh... the little joys in life.
Sunday 24 July 2011
Week 8 and a bit
This week has been a very weird week for me.
The abdominal pain has lessened quite a bit. I've stopped taking Benadryl for the last half week or so. Well that's partly true, anyway. I've had quite a few nights this week where I haven't been able to sleep. I've been getting very nauseated in the evenings which has kept me from falling asleep until late in the morning. I've been waking up very nauseated in the morning, too. Wednesday and Saturday this week, I tried taking Benadryl after waking because I thought the nausea might be due to the worms, but each time I ended up vomiting it up in the morning. Breakfast has been a battle this week, especially since even though my stomach is queasy, I'm usually still pretty hungry when I wake up. Does anyone else get that--hungry though you're queasy? Usually by lunch I feel much closer to good again.
Bowels have been weird this week, too. Back and forth between watery and normal, pencil thin to normal (for me), running five times a day to can't go, only false alarms.
I have my Remicade this Tuesday coming up. Maybe that will help even things out. I think the worms are playing around with my immune system, especially since I'm usually flaring around this time after my last infusion. Despite this weirdness, my spirits are still high! There are so many things I am grateful for. For example: I only have one week left of school and then a whole 5 weeks off, I don't have to work full time and have plenty of chances to rest and accommodate how I am feeling, and I am doing well in school, even better than normal people without health issues. Also I have a very supportive husband and family.
I forgot to mention, the belly bloating has finally reduced (about mid-week) and its less tender. Weird week.
The abdominal pain has lessened quite a bit. I've stopped taking Benadryl for the last half week or so. Well that's partly true, anyway. I've had quite a few nights this week where I haven't been able to sleep. I've been getting very nauseated in the evenings which has kept me from falling asleep until late in the morning. I've been waking up very nauseated in the morning, too. Wednesday and Saturday this week, I tried taking Benadryl after waking because I thought the nausea might be due to the worms, but each time I ended up vomiting it up in the morning. Breakfast has been a battle this week, especially since even though my stomach is queasy, I'm usually still pretty hungry when I wake up. Does anyone else get that--hungry though you're queasy? Usually by lunch I feel much closer to good again.
Bowels have been weird this week, too. Back and forth between watery and normal, pencil thin to normal (for me), running five times a day to can't go, only false alarms.
I have my Remicade this Tuesday coming up. Maybe that will help even things out. I think the worms are playing around with my immune system, especially since I'm usually flaring around this time after my last infusion. Despite this weirdness, my spirits are still high! There are so many things I am grateful for. For example: I only have one week left of school and then a whole 5 weeks off, I don't have to work full time and have plenty of chances to rest and accommodate how I am feeling, and I am doing well in school, even better than normal people without health issues. Also I have a very supportive husband and family.
I forgot to mention, the belly bloating has finally reduced (about mid-week) and its less tender. Weird week.
Friday 15 July 2011
Just a little allergy pill
Reflecting back on the last week, I thought that this abdominal pain was gone and it IS going... I had two great days this week with almost no pain, but yesterday I found it particularly bothersome and my tolerance is kind of weaning. (Its kind of cumulative with back pain). So I emailed Garin describing what I was feeling and asking if this was characteristic of the worms, if I should just wait it out, or if there was some sort of medical intervention. He replied that the pain I described was "classic hookworm" and to try some Benadryl first. I tried some this morning and it helped! The pain isn't gone and my stomach is still distended but it is better and I can actually suck my stomach almost normally, which is an improvement.
I don't know if you're like me in this sense, but when my stomach is so bloated consistently for so long, it tends to get me depressed as I start to feel really fat (you know, on top of everything else). And the longer it lasts, the more I become convinced that I've gained a large amount of weight and it isn't just going to go away when I feel better. (I tend to gain when I'm sick and lose when I'm healthy). So I've come up with some ways to gage if its bloated or if I've gained weight, because usually my stomach can be pretty tender regardless. Two questions: can I suck it in and can I push it out? If I can't push my stomach out voluntarily because its already distended as far as it can go, I know I'm bloated, and if I can't suck it in or its too painful to suck in, I'm bloated. Also, if I lay down on my back, does it stick out or does it sink in (convex vs. concave)? Just something small to keep myself sane. This illness has done a number on me, psychologically.
I have a really hard time gaging how sick I am or how much pain I am in--basically from years of being told I was faking or that whatever is ailing me, isn't significant. Its all very confusing, especially because its an invisible illness. I can't see the sick; its all mysterious, subjective and changing.
When I talked to my mom this morning, (she's been inoculated twice with hookworms now in the last 8-9 months), I was describing to her the pain in my stomach and how it was different and similar to what I normally experience. She basically said: "That's exactly what happened to me, only I didn't know it was the worms! I spent weeks in bed! All this time I could have just taken a little allergy pill..." Because now, she's well past the 3 month mark and I think we both kinda expect treatment that is going to be terrible from the side effects, or scary from the dangers, invasive or whatever. But no, just a little allergy pill. That's cool, I like this worm therapy stuff so far.
I don't know if you're like me in this sense, but when my stomach is so bloated consistently for so long, it tends to get me depressed as I start to feel really fat (you know, on top of everything else). And the longer it lasts, the more I become convinced that I've gained a large amount of weight and it isn't just going to go away when I feel better. (I tend to gain when I'm sick and lose when I'm healthy). So I've come up with some ways to gage if its bloated or if I've gained weight, because usually my stomach can be pretty tender regardless. Two questions: can I suck it in and can I push it out? If I can't push my stomach out voluntarily because its already distended as far as it can go, I know I'm bloated, and if I can't suck it in or its too painful to suck in, I'm bloated. Also, if I lay down on my back, does it stick out or does it sink in (convex vs. concave)? Just something small to keep myself sane. This illness has done a number on me, psychologically.
I have a really hard time gaging how sick I am or how much pain I am in--basically from years of being told I was faking or that whatever is ailing me, isn't significant. Its all very confusing, especially because its an invisible illness. I can't see the sick; its all mysterious, subjective and changing.
When I talked to my mom this morning, (she's been inoculated twice with hookworms now in the last 8-9 months), I was describing to her the pain in my stomach and how it was different and similar to what I normally experience. She basically said: "That's exactly what happened to me, only I didn't know it was the worms! I spent weeks in bed! All this time I could have just taken a little allergy pill..." Because now, she's well past the 3 month mark and I think we both kinda expect treatment that is going to be terrible from the side effects, or scary from the dangers, invasive or whatever. But no, just a little allergy pill. That's cool, I like this worm therapy stuff so far.
Tuesday 12 July 2011
Week 6.5
Well I'm back to feeling good again! The pain lasted for about a week for me, maybe a week and a half. I'm not sure exactly what it was due to. I normally have colitis and occaisionally gastritis, which was where the pain was. If the worms are pro-inflamatory maybe they just increased the inflammation in these areas? I've heard that the hook worms can cause a bit of blood loss (though I'm not sure how accurate that is or when its supposed to happen). I will say that during that painful week, I think I was passing blood from the upper GI because all my BMs were very dark, almost black and then when the pain subsided, I noticed they returned back to their normal colour.
This past week, since the majority of the pain subsided, I've just been a little bit crampy and I'm still "perma" bloated. All my clothes which were too big two weeks ago, are now tight and uncomfortable. I don't miss bloating at all.
I've also noticed that still my arthritis is still strangely absent, apart from a minior incident here or there. And I have this random swollen ankel that started 6 months ago. It wasn't brought on by anything I can think of. I didn't hurt myself; it just randomly started swelling which I noticed because it felt tight and uncomfortable. It swelled every day consistently for six months. During the honeymoon period (or the bounce), I notice the swelling just disappeared. Left as suddenly as it came. Two weeks ago it came back (coincidence with the proinflamatory phase perhaps?). I think its going away again and I feel its because of the worms.
Also, I thought I might be feeling arthritis in my back, but after talking to a massage therapist today, it might not be. He seems to think that my hip joint is locked which is putting strain on my back. I'm going to make a chiropractic appointment next week. I'm waiting to see a rheumatologist but... I'm thinking now that by the time I actually get in, my problems will be gone thanks to the hookworms.
My spirits very high right now. Overall, I'm very excited. I finish my class at the end of the month. My marks are good and I only have one major project left and a final exam. Then I have the whole month of August off again before school re-starts in September. I'm going to relax, visit friends and go to the beach and get some colour.
I'm a bit nervous. This fall term I have a completely full course load. I've been full time the whole year, but I have a couple extra courses I'm taking this year (7 vs 10). By the time September comes, it will have been three months with the hookworms. I know I will be feeling so well, that I will be able to complete all the work I need to. :) This treatment has provided me with so much hope. I can actually plan for the future and see myself living out all the things I want to accomplish, as if I'm not limited or worried I might not be well enough.
This past week, since the majority of the pain subsided, I've just been a little bit crampy and I'm still "perma" bloated. All my clothes which were too big two weeks ago, are now tight and uncomfortable. I don't miss bloating at all.
I've also noticed that still my arthritis is still strangely absent, apart from a minior incident here or there. And I have this random swollen ankel that started 6 months ago. It wasn't brought on by anything I can think of. I didn't hurt myself; it just randomly started swelling which I noticed because it felt tight and uncomfortable. It swelled every day consistently for six months. During the honeymoon period (or the bounce), I notice the swelling just disappeared. Left as suddenly as it came. Two weeks ago it came back (coincidence with the proinflamatory phase perhaps?). I think its going away again and I feel its because of the worms.
Also, I thought I might be feeling arthritis in my back, but after talking to a massage therapist today, it might not be. He seems to think that my hip joint is locked which is putting strain on my back. I'm going to make a chiropractic appointment next week. I'm waiting to see a rheumatologist but... I'm thinking now that by the time I actually get in, my problems will be gone thanks to the hookworms.
My spirits very high right now. Overall, I'm very excited. I finish my class at the end of the month. My marks are good and I only have one major project left and a final exam. Then I have the whole month of August off again before school re-starts in September. I'm going to relax, visit friends and go to the beach and get some colour.
I'm a bit nervous. This fall term I have a completely full course load. I've been full time the whole year, but I have a couple extra courses I'm taking this year (7 vs 10). By the time September comes, it will have been three months with the hookworms. I know I will be feeling so well, that I will be able to complete all the work I need to. :) This treatment has provided me with so much hope. I can actually plan for the future and see myself living out all the things I want to accomplish, as if I'm not limited or worried I might not be well enough.
Sunday 3 July 2011
Signs of life
Well this week has been pretty crappy for me, symptom wise. It started Monday when I woke up in the morning with a heavy bloated belly (today is Sunday). It was kind of a triple wammy with the sore gut, menstrual cramps and arthritis aching in my back. Though the cramps and back ache have gone now, my gut still hurts! It really hurts too, and its not the average gut ache I'm being used to since I've been in remission. It feels like I have two dense medicine balls of pain, one below my rib cage and diaphragm and the other right below it. Some times it feels like I have heartburn in my guts, like deep burning constant pain and it hasn't gone away or subsided. It is not cramps, spasms or gas. It hurts whether I eat or not.
I think this is the first sign of life in my small intestine.
I emailed Garin and he said that I've entered into the proinflamatory phase which usually goes from 2.5 weeks to 6 weeks. My arthritis returned almost exactly at the 2.5 week mark. A little less than a week and hopefully I'll be feeling better. Its been hard to do work; the pain is such a distraction. It could be worse though; I'm not frequently having to visit the washroom (just once or twice a day), and I'm hardly nauseous at all. I might finally have a sign that the little guys are alive.
I think this is the first sign of life in my small intestine.
I emailed Garin and he said that I've entered into the proinflamatory phase which usually goes from 2.5 weeks to 6 weeks. My arthritis returned almost exactly at the 2.5 week mark. A little less than a week and hopefully I'll be feeling better. Its been hard to do work; the pain is such a distraction. It could be worse though; I'm not frequently having to visit the washroom (just once or twice a day), and I'm hardly nauseous at all. I might finally have a sign that the little guys are alive.
Thursday 23 June 2011
Week 4- the "rash" and making yogourt
I wanted to mention a little bit about the "rash" that develops at the site of hookworm infection because it wasn't exactly what I expected. The site where you put the inoculated band aid on your arm leaves a little rash afterwards. Every dot is basically where the hookworms enter into your blood stream. Its very itchy and its very tempting to scratch the area. I guess the specific itch associated is called ground itch. It lasted for me, off and on, for two weeks. It eventually changes from being small little flat dots, to raised little dots. Its been four weeks for me and I still have it. It looks almost the same except it is finally starting to fade a bit. I recommend not scratching it because it makes the itch worse, just like when you have a mosquito bite and it could lead to a scar. I thought it might be gone in a week or so, but its still here! My little reminder. My mom's only lasted two weeks, but I have olive skin and typically scar very easily.
I was told by Dr Llamas, who supplied my worms that its very important to take probiotics while doing helminthic treatment. He specifically said that he recommends making my own yogourt if my lifestyle allowed it; otherwise, buy any good quality refrigerated probiotic. I was kinda curious about this. I've tried probiotics before and I didn't really find it made a difference. After further inquiry, I found out the actual reason why probiotics are recommended and why homemade yogourt is the method of choice.
I knew the hookworms latched onto the inside (the lumen) of the small intestine and through it they feed off the blood. That's why its important to eat a balanced diet and to prevent anemia. However, they don't just gulp down red blood cells whole. They actually only eat part of the red blood cells. They take the blood protein and basically spit out the rest, kinda like a choosy child who picks out the vegetables from their casserole, or whatever. What happens is, because only the protein from the blood is eaten, the iron portion of the blood cell (or the heme group) is removed from the partly eaten red blood cell and discarded back into the gut. (Now there are tons of bacteria in the gut, called indigenous micro flora. There is the good bacteria, the harmless stuff we need and we basically trade space in our intestines and food, for them to help us digest our food and synthesis some vitamins. There is also bad bacteria in gut which we try to keep under control by over crowding them with good bacteria. This kind of bacteria can make you sick, or steal your nutrients from you if they become too numbered. If there is more good bacteria then bad bacteria, that means there is less space for the bad bacteria, less food and nutrients and their numbers remain small so they can't do much damage).
So basically now we've set the scenery. We have a little ecosystem in our intestines and by adding the hookworms we have inadvertently changed the environment. Now there is much more iron in the gut. Guess what the bad bacteria prefer to eat? Iron. We've basically given them a buffet of their favourite foods. In order to keep them under control now, we have to consume foods rich in good healthy bacteria, like yogourt or supplement with probiotics. That way, even if the bad bacteria have lots of food they want to eat and multiply, there is not enough room because the space is filled with healthy good bacteria and the bad bacteria are smothered. That's my interpretation of it anyways.
Yogourt is the recommended probiotic because we actually have natural defenses against bacteria, good and bad. This is in our stomach, in the form of the highly acidic gastric juices! When we take probiotics by themselves, they are much more defenseless than if we consume them with yogourt. Yogourt protects the good bacteria from the stomach acid, so more of the microbes can make it into our intestine. Home made yogourt is the best because for one, it tastes the best, second, its cheaper and thirdly it is free from all those extra additives and preservatives the store bought stuff adds.
I've started it making yogourt myself the last couple weeks. I was surprised at how easy, cheap and delicious it is! Obviously it tastes like plain yogourt, no sugar added but there are many ways to improve the taste. You can add jam, fresh fruit, pie filling, sugar, sweetener, honey... basically whatever you like. I personally prefer it just plain.
Here is the recipe and site I used to make my yogourt.
I definitely recommend it! :)
I was told by Dr Llamas, who supplied my worms that its very important to take probiotics while doing helminthic treatment. He specifically said that he recommends making my own yogourt if my lifestyle allowed it; otherwise, buy any good quality refrigerated probiotic. I was kinda curious about this. I've tried probiotics before and I didn't really find it made a difference. After further inquiry, I found out the actual reason why probiotics are recommended and why homemade yogourt is the method of choice.
I knew the hookworms latched onto the inside (the lumen) of the small intestine and through it they feed off the blood. That's why its important to eat a balanced diet and to prevent anemia. However, they don't just gulp down red blood cells whole. They actually only eat part of the red blood cells. They take the blood protein and basically spit out the rest, kinda like a choosy child who picks out the vegetables from their casserole, or whatever. What happens is, because only the protein from the blood is eaten, the iron portion of the blood cell (or the heme group) is removed from the partly eaten red blood cell and discarded back into the gut. (Now there are tons of bacteria in the gut, called indigenous micro flora. There is the good bacteria, the harmless stuff we need and we basically trade space in our intestines and food, for them to help us digest our food and synthesis some vitamins. There is also bad bacteria in gut which we try to keep under control by over crowding them with good bacteria. This kind of bacteria can make you sick, or steal your nutrients from you if they become too numbered. If there is more good bacteria then bad bacteria, that means there is less space for the bad bacteria, less food and nutrients and their numbers remain small so they can't do much damage).
So basically now we've set the scenery. We have a little ecosystem in our intestines and by adding the hookworms we have inadvertently changed the environment. Now there is much more iron in the gut. Guess what the bad bacteria prefer to eat? Iron. We've basically given them a buffet of their favourite foods. In order to keep them under control now, we have to consume foods rich in good healthy bacteria, like yogourt or supplement with probiotics. That way, even if the bad bacteria have lots of food they want to eat and multiply, there is not enough room because the space is filled with healthy good bacteria and the bad bacteria are smothered. That's my interpretation of it anyways.
Yogourt is the recommended probiotic because we actually have natural defenses against bacteria, good and bad. This is in our stomach, in the form of the highly acidic gastric juices! When we take probiotics by themselves, they are much more defenseless than if we consume them with yogourt. Yogourt protects the good bacteria from the stomach acid, so more of the microbes can make it into our intestine. Home made yogourt is the best because for one, it tastes the best, second, its cheaper and thirdly it is free from all those extra additives and preservatives the store bought stuff adds.
I've started it making yogourt myself the last couple weeks. I was surprised at how easy, cheap and delicious it is! Obviously it tastes like plain yogourt, no sugar added but there are many ways to improve the taste. You can add jam, fresh fruit, pie filling, sugar, sweetener, honey... basically whatever you like. I personally prefer it just plain.
Here is the recipe and site I used to make my yogourt.
I definitely recommend it! :)
Tuesday 21 June 2011
They grow up so fast...
Well its day 26 and the worms were supposed to reach maturity day 21. I have noticed still that my arthritis is gradually coming back. I had to take an Advil the other night because the pain in my shoulder and wrist was too much for me to tolerate (like a 6-7 out of 10). The Advil took care of it, so can't complain there! Before the hookworms, Advil would only take the edge off, so that is an improvement.
The last two weeks have been extremely stressful for me with school. I had two midterms, a ridiculous essay that I had no idea how to write and I have a presentation coming up tomorrow. I was surprised because I have been able to work fairly consistently without having to worry too much about fatigue and didn't have any real interruptions. There were no signs of a flare even with all the stress I was feeling. But measuring my blood pressure, which was elevated, and looking in the mirror, there are obvious signs of stress. My face broke out with so much acne (I'm 26!! Too old for this level of acne!).
Of course this weekend, as soon as I had a chance to sit and relax I started feeling.... not soo good. The last three days I've woken up with a fairly persistent headaches. Ibuprofen takes the edge off, but it still lingers mildly which mostly just makes me cranky. My stomach has been sore this week too. Feels sore right now, like a my guts are swollen and bruised. Probably didn't help that I indulged in some not too good for me foods (chips and ice cream). I usually eat a fairly clean diet, but sometimes I just have to give in to cravings.
The number of trips to the washroom have increased to about 4 times a day from.... 1. I've also been feeling fatigue. Fatigue is the worst part, feels like I'm running on empty. I've also had low grade fever for the last week which I didn't notice until I went into my Remicade appointment and they measured my temperature. Realistically, these symptoms are mild and very tolerable for me right now. I don't feel they are caused from the worms. They are typical symptoms that I normally get, really much milder than usual, and I think as soon as my Remicade kicks in I'll be back to good in no time. Probably no more than 1-2 weeks. My last infusion was 1 week ago today.
The last two weeks have been extremely stressful for me with school. I had two midterms, a ridiculous essay that I had no idea how to write and I have a presentation coming up tomorrow. I was surprised because I have been able to work fairly consistently without having to worry too much about fatigue and didn't have any real interruptions. There were no signs of a flare even with all the stress I was feeling. But measuring my blood pressure, which was elevated, and looking in the mirror, there are obvious signs of stress. My face broke out with so much acne (I'm 26!! Too old for this level of acne!).
Of course this weekend, as soon as I had a chance to sit and relax I started feeling.... not soo good. The last three days I've woken up with a fairly persistent headaches. Ibuprofen takes the edge off, but it still lingers mildly which mostly just makes me cranky. My stomach has been sore this week too. Feels sore right now, like a my guts are swollen and bruised. Probably didn't help that I indulged in some not too good for me foods (chips and ice cream). I usually eat a fairly clean diet, but sometimes I just have to give in to cravings.
The number of trips to the washroom have increased to about 4 times a day from.... 1. I've also been feeling fatigue. Fatigue is the worst part, feels like I'm running on empty. I've also had low grade fever for the last week which I didn't notice until I went into my Remicade appointment and they measured my temperature. Realistically, these symptoms are mild and very tolerable for me right now. I don't feel they are caused from the worms. They are typical symptoms that I normally get, really much milder than usual, and I think as soon as my Remicade kicks in I'll be back to good in no time. Probably no more than 1-2 weeks. My last infusion was 1 week ago today.
Thursday 9 June 2011
Week 2
So far, this being the second week since being inocculated with hookworms, everything seems pretty much uneventful. My arthritis is still virtually non-existant. All I experience is maybe a few seconds to a minute of minor pain in my joints, a few times a week but that's all. Its also been 8.5 weeks since my remicade and no real signs of a flare yet. I'm pretty stunned actually. If this is the honeymoon period, I wonder how long it'll last. I usually start to flare around 4-6 weeks after a remicade influsion.
The only thing I have noticed is that I'm starting to feel more fatigued, which started last weekend (today is thursday). But again, I can't attribute that to anything specifically because normally I feel pretty tired and need alot of sleep.
I was in the doctors office last week and I was looking at one of the health magazines in the reading room. In it there was an article about a man who was treating his IBD sucessfully with roundworms. That's so cool. I get excited when I see the media paying attention to this form of treatment. Its infuriating why there is not more public knowledge about it. I was surfing the net and found that autoimmunetherapies.com are actually offering a money back guarantee for individuals who have relapsing and remitting MS because they've had positive results in 100% of patients. How is this being kept secret from the world?!
I also found some articles online which were promoting the development of vaccines against helminths! I think that's astounding and very scary. The articles talk about how minor the effects of helminthic infection, how you need a heavy infection to even feel most sypmtoms (greater than 500 worms) and how they can improve allergies etc, and how they fit in the hygiene hypothesis. Then they introduce the vaccine. I think its targetted more towards the eek factor then anything rational. Just thinking how pharmaceutical companies could profit off this vaccine makes me feel sick. First, profit from the vaccine itself, then profit from all the drugs used to treat resulting autoimmune diseases and allergies arising from the loss of helminths around the world. Its not enough these diseases and allergies are more prominent in developed countries, let's bring them to undeveloped countries too!
I strongly feel helminthic treatment should be legal. People should be given accurate information and be able to make decisions for themselves. If we want to infect ourselve with parasites because it makes us feel better that's our choice! At least we won't have to worry about getting cancer from the hookworms or dying from an infection because our immune system has been purposefully suppressed for years!
Anyway, I've been feeling really good so far and am hoping it will continue to last. :)
The only thing I have noticed is that I'm starting to feel more fatigued, which started last weekend (today is thursday). But again, I can't attribute that to anything specifically because normally I feel pretty tired and need alot of sleep.
I was in the doctors office last week and I was looking at one of the health magazines in the reading room. In it there was an article about a man who was treating his IBD sucessfully with roundworms. That's so cool. I get excited when I see the media paying attention to this form of treatment. Its infuriating why there is not more public knowledge about it. I was surfing the net and found that autoimmunetherapies.com are actually offering a money back guarantee for individuals who have relapsing and remitting MS because they've had positive results in 100% of patients. How is this being kept secret from the world?!
I also found some articles online which were promoting the development of vaccines against helminths! I think that's astounding and very scary. The articles talk about how minor the effects of helminthic infection, how you need a heavy infection to even feel most sypmtoms (greater than 500 worms) and how they can improve allergies etc, and how they fit in the hygiene hypothesis. Then they introduce the vaccine. I think its targetted more towards the eek factor then anything rational. Just thinking how pharmaceutical companies could profit off this vaccine makes me feel sick. First, profit from the vaccine itself, then profit from all the drugs used to treat resulting autoimmune diseases and allergies arising from the loss of helminths around the world. Its not enough these diseases and allergies are more prominent in developed countries, let's bring them to undeveloped countries too!
I strongly feel helminthic treatment should be legal. People should be given accurate information and be able to make decisions for themselves. If we want to infect ourselve with parasites because it makes us feel better that's our choice! At least we won't have to worry about getting cancer from the hookworms or dying from an infection because our immune system has been purposefully suppressed for years!
Anyway, I've been feeling really good so far and am hoping it will continue to last. :)
Wednesday 1 June 2011
Day 5
So far since being inoculated with the hookworms, nothing eventful has really happened. The infection site on my arm is still red, though no longer inflamed, just kind of bruised looking. As time has past, it has been getting progressively less itchy and the red spots went from being spots to actually being little raised bumps. It’s hard to believe that something so tiny left such big marks.
I think I’ve been experiencing some sort of honeymoon phase. Last week I was feeling on the verge of flaring and since then I’ve had a remarkable reversal of symptoms. Even my arthritis has been very mild. Also the abscess I had resolved on its own. From what I hear from other people’s experiences with abscesses, I’m very lucky; through it’s probably more related to the Remicade then the worms. I spoke with my specialist yesterday and he is changing my Remicade back to 8 week intervals again. Hopefully the next time I see him in August, three months from now, we can extend that even longer. I have no idea yet how to taper off the medications, but I’m so excited to do it.
I love my GI specialist. He’s in Toronto, but I gladly make the two hour commute to see him. He is the third specialist I’ve had and by far the most caring and competent I’ve seen. He remembers me each time I visit and even small details of my history. When I see him I’m almost star struck or dazzled because to me, he’s my hero. He saved me and made me better when my last specialist basically ignored me and my symptoms. And he is on board with the hookworm therapy and supporting me through the process.
I’m not sure but I think I’ve passed the phlegm stage. A couple days ago I felt some heaviness deep in my chest and had a mild cough which has since resolved. It’s supposed to happen between day 2 and 8. Today is day 5. I was expecting something... more noticeable.
I wonder if I will experience any symptoms of the worms. So far it’s been clear sailing.
Saturday 28 May 2011
Infection Initiated
So yesterday the worms arrived. There was a bit of a hassle with customs on Thursday but it did arrive late Friday afternoon. Applying the worms was very straight forward. I simply sucked the little worms out of the tube with a pipette (eyedropper), deposited it on the pad of the band aid and applied it to my skin. You can’t actually see any of the worms in the tube; just some black specks which I was told are the same density of the worms so you know approximately where they are in the solution.
I was on the phone with Garin (hookworm provider) the whole time and he talked me through everything. He asked me to tell him when the itching started. I was so worried. What if I feel no itching? What if they all died on the way, or worst of all, what if I’m not a responder? I read somewhere that the average reaction time is 7 minutes and it took about 7 minutes and 12 seconds to feel the itching. It’s really a very unique itch, very deep and prickly. I’ve never been so happy in my life to be itchy. I had to keep the band aid on for two hours and then remove it and flush it down the toilet. I’ve attached photos of the band aid, the skin reaction after it was removed and a picture of what it looks like now, approximately 24 hours after its been applied. Garin said that you can count how many dots are on your arm after removing the band aid and that’s a rough estimation of how many worms penetrated the skin. I was also told that multiple worms can go through the same spot. Last night I was able to count around 17-23 dots, which out of 25 is pretty good! They’re all kind of meshed together so it’s difficult to make out an exact number.
So far, I have felt nothing unusual. I’m feeling pretty good actually which may be the so called “honeymoon period” or "bounce". I’m told in the next 1-8 days I should feel some heavy phlegm in the back of my chest. I should not spit it out because it’s housing all my little friends and they need a safe trip to my intestines. In 2.5 weeks they will finish their final malt, their teeth will be nice and sharp, glands fully developed and they will be ready to feed. At that point, my immune system should be fully aware of their presence and I may feel some side effects: diarrhea, fatigue, headache and night sweats. I’m hoping since my ileum (where the hookworms attach) is in good shape these effects will be minor, but I guess we’ll see!
 |
| Band aid applied |
 |
| Immediately after band aid removed |
 |
| A few hours later |
 |
| 24 hours later |
Monday 23 May 2011
The worms are being shipped!
I just got news today that the hookworms are being shipped! This means they should arrive either Thursday or Friday this week (today is Monday), unless they are held up in customs. Thursday I have clinical placement all day in the hospital so even if they come in I won't be able to inocculate myself until Friday. This is because I need to phone the clinic in Mexico so they can give me step by step instructions over the phone. It seems very straight forward but apparently live specimens have been lost before so its better to be safe then sorry! I'm looking so forward to this it seems ridiculous--considering its going to be a fairly long road to remission. Oh well, gotta start somewhere.
Sunday 22 May 2011
Pre-innoculation: Waiting for the worms
Where to start? I have never considered myself to be a writer. Certainly never thought I would blog, but here I am, a mid-twenties nursing student in Ontario, Canada, on the verge of starting helminthic treatment or worm therapy.
I was diagnosed with Crohn's Disease in 2003. I have been lucky so far in that I have not had any severe flares. I was very familiar with the disease and its symptoms, as my mother also has this wonderful disease and this helped with a prompt diagnosis. Since diagnosis, I have had moderate Crohn’s in my ileum which went into remission with treatment, and a couple years later I developed Crohn’s colitis. After about a year and a half of unsucessful treatments for the colitis my GI specialist put me on Remicade, then after a year added Imuran. I have been in “remission” for the past 2 years thanks to these very scary drugs. I am on a constant roller coaster. These drugs don’t cure; they’re like a temporary band aid. After my Remicade infusion, I tend to feel progressively better and then, as it wears off head right back to feeling crappy again. My dose is always being changed back and forth between 6-8 weeks and it feels like there are only small windows where I actually feel in remission. Imuran on the other hand, I don’t even notice a difference. I’ve been on it for over a year and I do not feel physically better at all. It has done nothing to reduce my Remicade infusions but my specialist recommends staying on it because with the Remicade alone my inflammation indicators are too high. In the last six months, arthritis has worsened, acne has worsened and I’m being investigated for an abscess/fistula.
My mother has a much more severe case of Crohn’s disease than myself. She has had 5 bowel resections, has short-gut syndrome because she only has five feet of small bowel left and she has never been prescribed a single medication that worked for her. She was told after her last resection she might get 4 years before she will need further intervention, which if delivered would require a permanent feeding tube. We were all very scared, no doubt.
Let me give a bit of background information here: My family and I live in Canada, however when my mother was in her twenties, she moved to Acapulco, Mexico. There she lived for about 8 years in complete remission, eating and drinking whatever she liked, out dancing and working all day with no symptoms or traces whatsoever of Mr. Crohn’s. Prior to moving down to Acapulco she had one bowel resection and thought that while she was in Mexico her bowel resection had simply cured her. When I was five years old, we moved back to Canada permanently and my family and I were tested for parasite infections. We were all infected and had been for years. We were treated and the parasites killed. Within two years my mother had to have another bowel resection and her Crohn’s was back full force. For years growing up my mother swore she was healthy in Mexico because of the parasites, though we really didn’t have any idea why and she was too scared to go around drinking unfiltered water... etc from Mexico in order to re-infect herself.
So to continue, last year my poor mother began to get progressively worse with her CD activity. We were all terrified that she would have to have another surgery and end up with a feeding tube. I was terrified alone for her mental health. I had just joined a support group on facebook: Let’s Talk Crohn’s and Other GI Issues. (Excellent support group, please check it out if you’re interested). On the wall someone had posted a link about helminthic therapy. I opened it up to read it and was struck by the research. This was what my mom had been talking about for years. I forwarded it to her and within a few months she started the treatment through a clinic in Mexico. She is an excellent responder. She was on the verge of having emergency surgery and went from being able to eat nothing but ensure for years, to eating whatever she wanted. It’s still two steps forward, one step back, but as time goes on she’s getting closer and closer to full remission. She has certainly had better results with this treatment than any other. It is because of her grand success that I am embarking on this journey.
I have been waiting, for what I feel is a long time to start this treatment. I finally have the money saved, my blood results are sufficiently in range and I spoke just yesterday with Dr Llamas in Mexico to establish my dose, 25 hookworms!! From what I understand, it takes about a year and a half to get into remission, as long as I keep my worms alive. They can cause inflammation during the first 3 months or so and I’ve been told I may need to start Entecorte or prednisone if I don’t tolerate the worms well. I can then expect what they call rachetting, taking two steps forward and one step back as my immune system attempts to regulate and equilibrate with my new wormy friends. I’m nervous about it too. There is no guarantee this will work for me. I have school work to get done and it can be so difficult to complete school work and study when you’re not feeling well. But I have to start somewhere. I’m hoping by the time I finish my degree in December 2012, I will be in remission and can start working full time (without flaring). For now, I just have to wait until my worms are ready. No idea yet how long that will be, though I’m assured soon.
Subscribe to:
Posts (Atom)