The Best Flare Ever

Again, its been a while since I posted last.
Not too much new going on with me. Unfortunately, I'm still flaring, but honestly, this is the best flare I've ever had.
To catch up, after I wrote last I had started passing blood and feeling fatigued again. At the worst, around mid-December (of course right when I have exams) my flare was getting progressively worse with up to 15 times a day in the washroom, mostly just to pass blood and blood clots. I was also feeling drained again, sleeping 10-14 hours a day. However, on the 14th of December I had two exams. One in the morning and one in the evening. This was a very long day for me because you need to be focused to answer questions correctly. I had introduced coffee back into my diet about a month prior with no reaction. However this particular morning I had decided to skip the coffee and drink it in the afternoon as as perk to help with the evening exam. I was still only drinking half a cup of coffee once a day, diluted up to one cup with hot water. I noticed that morning that I didn't have to go the washroom in excess, but that afternoon when I came home--after my coffee-- I had been in the bathroom 8 times in two and a half hours. The only thing I could attribute it to was drinking coffee. So I cut that out immediately and within 3 days I was back to going to the washroom just once in the morning. Still blood... but much less. Maybe a tablespoon to half a tablespoon. This was an amazing revelation for me and things pretty much remained consistent after that, but I was then able to make even more observations.
After my exams, I had a three week long Christmas vacation from school. I went home to my parents from Dec 22nd until the 27th. During this time I was so relaxed! I had no schedule, I ate and cooked and socialised and watched TV with not a care. It was really a rare experience in life. Its not very often that I, or I'm sure anyone for that matter, experiences so little stress. This really opened my eyes to the impact that stress was actually having on my body because within a couple of days the blood stopped and I was having normal bowel movements again. I was of course THRILLED. :D
This brief remission lasted basically until I got back to my own home after a five hour drive in a blizzard and freezing rain. As soon as I got home I had to immediately run to the bathroom with blood.
The next day I was back to normal again and the following day made the long trek to visit friends, a three hour drive there and a three hour drive back in again, freezing rain and blizzards. It was very stressful which of course was evidenced by more blood again. This time I did not recover as quickly.

At this point I'm thinking.... is the Remicade even working? Its very unusual for me to flare after only 2 weeks after my infusion. I would normally start to flare around 5-6 weeks, if at all, but I wanted to wait it out. I had my next infusion January 4th. Usually the blood stops in the same day of my infusion, but this time it did not. It took 4 days for the blood to stop again, which I of course attributed to the Remicade. It must just be taking longer to work... I had an appointment with my specialist on January 10th and explained the whole situation and told him it was my impression that I was in remission again after the infusion. Of course not even three days later, started to pass blood again! And I'm still passing blood now after two weeks post infusion. I called my doctor on Monday and he wants me to wait another week before we do anything. I just want to know if remicade is working. If its not I don't want to stay on it, especially with the risk of cancer (though if you're not responding to the treatment it seems unlikely it would still cause cancer because its not reducing TNFalfa anymore, but that's just my personal thought process). I'm not worried. I'm not even scared. Its still too early to rule out if the hookworms are going to work or not and there are other therapies out there that I would be interested in trying, like fecal transplant and low dose naltrexone, or even DHEA. But at this point, I'm not touching a single additional therapy until we can figure out this remicade situation. So I'm just waiting. The reason why I say this is the best flare I've ever had is because, I've NEVER felt this good while flaring. Its incredible. I still have no pain, no bloating, my fatigue is GONE. I wake up each day after 7.5-8 hours like clock work. If I go to bed too early, I'm up too early in the morning. I also have energy like I've never had before.

At this point, I don't care about the blood. Its not hurting me, and its not enough to cause anaemia. All it is is a sign that there is still inflammation in my colon. But like I said, this opened my eyes to the actual physiological effects stress was having on my body and have taken steps to reduce the impact of stress on my life. I've started meditating. I bought a book called The Full Life Catastrophe. Its beautifully written and have been following the course written in that book. As well, around two weeks ago have started practising hot yoga. I LOVE it. Its everything I've been looking for in a work out. I felt before as if my muscles were dying to be used and my joints itching to be stretched out. Its nice and gentle on my joints, but in combination with the heat, the effects are so penetrating. And I love how it combines with meditation. I feel so relaxed afterwards and am finding that the meditation aspects are starting to incorporate more into my daily life without even trying. I find myself breathing through my diaphragm when stressed without even consciously trying to. This is just the beginning. I know its going to get even better and soon I'll be completely off my meds in full remission. In this long journey of dealing with Crohn's disease, I'm finally making real progress.

Week 12: So close but so far...

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!

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.

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!

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).

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.

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.