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.
Friday 26 August 2011
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!
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