But around late March, after just 3 months of hosting, my symptoms of magnesium deficiency started to worsen again.  I had gotten a little slack with my seaweed and magnesium supplements (the seaweed seems to help the most), so I tried just adding them in and going back to the epsom salt foot salts and baths, but I continued to have more involuntary muscle twitches, all over my body, and my calf muscles started to cramp easily.  My big test is how long I can stand on my toes – it got down to 3 seconds before I’d cramp.  I also started having difficulty in staying warm, regulating my body temperature.

This went on for several weeks without any improvement; I kept giving myself diarrhea by taking too much magnesium (which really isn’t that much; over 400 mg. of the magnesium glycinate and I get loose stools.)  I have extended release forms that aren’t as likely to cause diarrhea, but they also don’t seem to work as well.  Finally, I started having difficulty falling asleep, and was beginning to get anxiety. All lovely symptoms I experienced for years on the hookworms, not identifying the cause.

So after a particularly miserable trip in Yosemite, where I had to take Ambien, herbs, melatonin, and Benedryl to sleep, and I couldn’t hike much without muscle weakness, I killed the worms.  I hated doing it, after all the time invested, and the fact that they were working in every other way.

It helped a little, but my experience with magnesium is it is very hard to correct once fallen to these levels.  I get better, then I’ll have a few days of loose stools or sweating, and I am back to my toe or finger twitching constantly, not having the strength in my hands.  I am also very tired, and easily fatigued.

I took a blood test two days after killing the worms, and my Red Blood Cell Magnesium test was low. Below normal.  My experience with this test is I am still symptomatic until I get a little above the low normal range.

The rest of the blood test was perfect.   Perfect!  No inflammation, CRP and SED were at 0.   Lymphocytes, Neutrophils, perfect.   So the IVig and the 10 hookworms, the paleo diet (I do cheat with homemade sprouted beans, cheese, homemade yogurt, and the occasional corn chips, were working!) I have been very non-diligent with curcumin, green tea, and fish oil, so I think it was mainly the IVig and the worms.

Now, a month later, my acne is returning, I am having anal mucus every day, and some random rectal pains.   (Although I had a few of those with the hookworms; I feel like sometimes it’s scar tissue or nerve pain residual from the abscess and surgery.)

I have also gone the full 8 weeks apart from the IVig for the first time, which I am now moving back to every 6 weeks.  I spoke with my doctor, and we’re going to try reducing the dose by 1/4.   Instead of 35 g. a day for 4 days every 8 weeks, we’re going to try 35 g for 3 days every 6 weeks. I’m hoping this helps the headaches too, which become monstrous by day 3-4.  But I don’t know how long my veins are going to last with this. I’m told you can administer IVig subcutaneously,  though it can cause irritation under the skin.  I guess I can always get a port if I have to.  The home nurse can only get an IV started in one vein; the rest are so small and just collapse once the needle is in there.  So long term, the vein could become scarred…

So here I am, still magnesium deficient, but at least I’ve got it up so that I am sleeping without aid.  I just cut out black tea, alcohol (which I was only having very occasionally), and am taking the green tea/curcumin combo only once a day, so they don’t block absorption of the magnesium.  I’m soaking in epsom salts once a day (feet or bath), and rubbing on magnesium lotion before bed.   I just ordered my very popular brown seaweed supplement (it was on Dr. Oz, so is sold out everywhere), and will try doing that 3 times a day, since that seemed to help the most. I also ordered a sublingual elemental magnesium formula, and I bought some nutritious herbs to substitute for the black tea.  (nettles, red raspberry leaf, oatstraw, parsley, alfalfa.)

Garin notices his muscles cramping,  having much more fatigue with work outs, and muscle twitching when he forgets to take his magnesium supplements for even a few days.  I also heard from another patient that he is also having issues with muscle cramping, and has had involuntary muscle twitching while hosting hookworms, symptoms he’s never experienced before. He doesn’t have IBD.  It doesn’t seem to be a common issue with hosters; I don’t know why only some of us develop iron or magnesium issues.  My iron, by the way, was fine, a little on the lower side, but not bad for a woman hosting hookworms with IBD.

So, I’m hoping to get the magnesium to a good level.  I ordered more IM shots, though they really hurt and I can’t always tell if they help.  Sometimes they seem to make me just feel weird.

I may consider just adding a few hookworms in down the road – if 10 can be so effective, maybe 3-5 would be all I need along with the IVig and everything else.

So here I am.  165 pounds, which is great news.  No pyoderma – that cleared up several months into the IVig and never came back. I get IVig this week, so I’m hoping that will halt the Crohn’s symptoms creeping back.  I still hate dealing with this stoma…

The hookworm side effects peaked as scheduled, worst week was week 6, when I had pains in my rectum, intestine, and scheduled a colonoscopy, afraid for more inflammation.  I had another round of IVig (getting 35 g a day for 4 days, or 140 g, now every 8 weeks.) on week 7, then things started going really well.  Pain disappeared, and I was constantly hungry, which happened with my first few years of reinfection.  From Valentines day to now, I have gained 15 pounds!  I look great, albeit a little fat.

I’m also doing a lot of physical work on my garden, and on my neighbor’s farm.  My back is getting stronger.  I’ve dug a pond, planted 50 foot rows of peas, pumpkins, lettuces.  I’m starting Fairytale Farm up again, and buying a pedicab that I will turn into a pumpkin to be both carriage and vendor for a roving farmer’s market.  So life goes on.

The best news is my gastroentrologist, Dr. Terdiman, told me I could put off my colonoscopy for a few more months since I am doing so well.  I’ll do an MRI endoscopy in a few weeks, and test my blood to see how things are there.  Colonoscopy probably will be around June/July to be at the one year mark since the ostomy, though I’m trying to time it around reinfection, since I was planning on adding another 10 hookworms around the 6 month mark.

I’ve been doing egg counts,  ye old Mc Master style, and have found 2 eggs, then 5, then 5.  This was across the entire slide, not just in the grid.  I’m starting to think I was infected with way more worms the first few years than I thought, since I had much higher egg counts, usually 10 – 15 at a time, using the same method.  But I’ve also been taking curcumin and the IVig itself may help fight the worms.  I’m going to switch over to the method that other egg counters use, involving the use of fecalyzers and zinc sulphate, so I will post my results from that soon.

The stoma itself is frustrating.  I have to bind it in a hernia belt built for ostomies, though I don’t use the hole that is supposed to go over the stoma that the bag goes through, because then there is nothing to hold the protrusion of the stoma in, so I just smash the whole thing, and try to catch when I have gas or stool, then stretch it wide to give it space.  We’ve cut the hole bigger so I’m not having constant leaks, but if I go more than 10 minutes without it bound, the stoma protrudes too much.  A home ostomy nurse came and thought that I was not only prolapsing, but herniating as well, thus the belt.  Something that the UCSF stoma nurse and surgeon didn’t think looked “too bad”, although it doesn’t comfort me to hear they’ve seen worse, because there is always worse, especially among colo-rectal surgeons who work at a huge teaching medical center specializing in IBD.  Luckily, the pyoderma is still 100% gone, so the IVig is doing its thing.

I’ve been straying off my diet which is bad, because it’s not really causing any problems other than sometimes gas that gets stuck around my narrow bend in the ileal region, so I have less motivation to keep on the straight and narrow.  I notice my skin is clearest and my gut happiest when I’m eating on my diet…unless I have too many nuts and raisins, or coconut and raisins.  I really should just stop eating raisins.  I’m afraid the area with the stricture is worse in general, and even though I tolerate kale, lettuce, and other fiber I couldn’t before, this area can get stuck for days, so I fear what we’ll find on the tests.

Lots going on in the worm world, I’ll have to write a separate blog post for all of it.  But for now, at least, I feel good, and just hope it lasts longer than a few months.  Viva la worms!

He scheduled a capsule pill cam to quantify his hookworm status, which unfortunately got stuck in a narrow passage, and later, a colonoscopy showed lots of whipworms, in areas of ulceration, so not only were the whipworms not helping, they seemed to be harming those areas of tissue. He took a dose of albendezole and went back on Humira, which helped. Interestingly, his fruit allergies didn’t return. Months later, an iron and ferretin test showed extremely low levels, almost dangerously so, and he discovered he still had whipworms all those months. So he took a day of abendezole followed by mebendezole (with a fatty meal to aid absorption), and started over again.

We met and had breakfast together, then met Garin who drove us across the border to Dr. Llamas’ clinic. My husband received 25 hookworms, I got 10, and Herbert 37. (Just worked out to be what were in the combination of vials.) Strangely, it took double the time than normal (12 minutes instead of 6) for me to feel the itch. I don’t know what that means.

We said goodbye to Herbert and drove back to my father-in-law’s to pick up my children. My husband’s rash looked twice as bad as mine. The itch woke me up the first night and slowly faded over 2 weeks. We were exhausted and sort of sick feeling the first 2 days…

But then, the beloved “bounce” set in around the third day, and I went on to have the most happy, energetic 10 days I have had in years. I was almost giddy with positivism, I felt capable of conquering the world! Or at least the piles of undone projects laying around my property. I weeded great swaths of garden. Wheelbarrowed over 20 rounds of dirt. Moved an enormous brush pile, planted about 1/4 of a 2500 sq. ft. Patch of dirt. Most importantly, I conquered my husband’s 30 boxes of miscellaneous crap that have been sitting on the side of the house that include stuff going back to his childhood – most of it trash.

My poor husband, on the other hand, felt terrible. He was depressed, lethargic. He didn’t want to get out of bed and slept extra, totally unmotivated to work while his whirlwind of a wife transformed the yard. I felt sorry for him. He has only a walnut allwrgy, and about 30 pounds of belly fat he needs to get rid of. The last round of hookworms did nothing to help him. Most importantly, he is my walking resource in case Garin ever goes down, as I already live with the catastrophic result of losing my AIT worm supply when I needed to redose, which ultimately led to this colostomy that I despise.

So the three of us can track symptoms. It’s nice having the comradery of being innoculated on the same day. And the twin burden of having Crohn’s disease, finding a wonderful, natural treatment that makes evolutionary sense, telling the world about your remission, then regressing so terribly you kind of stop communicating. Picking up the pieces and starting over again.

I am 2 weeks in and the high has faded. In fact, I went to the ER a few nights ago because I had a bowel obstruction; that lovely area of my ilium that is scarred and narrowed by past Crohn’s damage got blocked by my reckless choices of nuts and raisins (which I’ve been eating without issue), raw carrots (if anything, will cause diarrhea), and the suspect culprit, raw red cabbage. I haven’t had a blockage in a few years. I forgot how painful they are. It was like labor, I was writhing around on the bed, unable to sleep or get around the pain. We finally went to the ER to get a little opiates and an x-ray. Luckily the fiber made it through, but now I’m sore and frightened, wondering if the area is inflamed (they didn’t check CRP) and chagrined at my dietary stupidity. I should have known better. I’ve had blockages before from raw cabbage. As did my ER doctor, who was born with a narrowed piece of bowel and had to have surgery because the cabbage got stuck. My GI told me about two of his colleagues who had obstructions from arugala and…raw cabbage. I will never eat raw cabbage again.

So here I am, round 13 I think, not including other worm species I’ve tried, hopeful but guarded. Relying on a variety of natural remedies that must work because I’ve got no good drugs left to try.

My last round of IVig is next week; I timed it for week 3 hoping it might help mitigate the hookworm side effects. After that, no one knows how to use it. Do I go on a maintenance dose? Do I just stop and wait and see if the pyoderma returns? (Down to a small bump of white scar tissue, hurrah.) Will my insurance even cover it longterm?

I eat SCDiet, take high amounts of fish oil, curcumin (hopefully the worms will tolerate this…it lowers egg counts so stresses them in some way but doesn’t seem to effect efficacy), green tea extract, l. Glutamine, wellbutrin, LDN, probiotics, hope.

I just want to be well forever, and get rid of this nuisance colostomy, but we shall see, we shall see…

I caught a terrible cough though, and while I was enjoying this wonderful break from pain, I was coughing so much that I pulled a muscle in my ribs.  But the pyodermic bump became less red, grew smaller, and I began to feel like perhaps there was hope in this world after all.

So of course, I had to push my boundaries and eat wildly off my diet well into Thanksgiving, and the second infusion did not act like a miracle to reverse the looser stools  and ileal pain that was beginning to form.

So on December 1st I went back on strict SCD and added some anti inflammatory substances:

LDN 4.5 mg

curcumin 3 g

green tea extract 1 g

l. glutamine 9 g

fih oil 3 g EPA/DHA

and within a few days, solid stools returned and have been ever present.  Pain is better, but not gone.  Pyoderma is still pain free, all white with scar tissue, bump way smaller, but not gone.  So yet again, lesson learned that I must always be diligent with diet and not expect any one thing to be the miracle that allows me to be the glutton and drinker like I truly desire…sigh.

I went to a UCSF immunology and took a bunch of tests, but they found no immunodeficiencies.  Then why don’t I get eosoniphelia when I’m first infected with hookworms?  At least she’s willing to instruct my doctor in the dosing used for other autoimmune diseases.  The current plan is to do 4 monthly infusions, then wait.  When I regress (if…I should try to stay positive) then we do 4 more.  Assuming my insurance keeps approving it.

I’m also taking advantage of my relatively stable health and getting my mercury amalgams removed.  Interesting that a Cliffords test looking for what dental materials I accept showed an intolerance to all metals but titanium.  Confirms why I can’t wear earings for long without getting pain or itchiness.  I wonder what one of the most toxic metals in my mouth is doing to my immune system?  We’ll see if it makes a difference.  1 down, 5 more to go…

I’ve got a holistic dentist who is doing everything properly, but I’m doing weekly IV vitamin C and glutathione, plus a 1 hour biomat session to help detox.  The latest session left me really tired and then I had the strange sensation a few hours later of having to poo, and a bunch of brown, slightly greenish substance came out…I guess mucus..and I have no idea why except maybe it’s detox…it was only that one day.

I trust nothing will be effective for long, so I hedge my bets.  Next week I go back to Mexico to get 10 more hookworms.  The never ending experiment…

Finally, the ostomy nurse said, “Let’s wait to see what happens after you start your Crohn’s treatment meds.”  So I had my first dose of Tysabri, and it seemed to get much better.  2 weeks later, I showed it to her, and the wound was down to one site, moving towards the stoma.  Scar tissue had formed over the rest, it was finally healing.

I want to add that the pain from these little sores was intense.  I was almost off the painkillers for the surgery, but the sores started to replace their need.  I also was still having pain in the ileal-cecal area that I thought the Tysabri would get rid of.

10 days after the first Tysabri infusion, I went back to diarrhea.  (It had gone back and forth since a few months post surgery; things were slowly going downhill.)  The Tysabri gave me solid stools within a few days, and I thought, “I hate having to use such a powerful drug, but at last it’s working!”  Then the diarrhea struck, and I went back on the GAPS diet.  I was nauseous too (which had been happening more frequently too since the surgery, part of the overall decline.)  Luckily within a few days, the diet took, and I had my solid stools back, and was starting to feel more energy.  My skin also became much clearer, as I’ve had pretty bad, constant acne since I killed the hookworms and got   through the surgery.

So I went into my second infusion with high hopes.  The wound was almost gone, the ostomy nurse said I didn’t have to do anything to it, it should finally be gone in a week or so.  I was so relieved, we flew home singing.

Second infusion went by without a hitch, but within 48 hours, the pain moved from the left side to underneath the stoma, and when I went to change the bag, the old sore had healed almost all the way, but the lip of skin directly under the stoma (which was only scar tissue; never had a problem) was suddenly red, inflamed, and twice its size, and hurt like hell.

2 days after that, it had doubled again, and now it was wrapping around the rim.  The pain was unbearable, and the stoma itself was getting larger and larger, now double the size than it was supposed to be.

“I’m living in unrelenting hell,” I thought, contacted Dr. Terdiman, who always responds within minutes, no matter what time of day it is, or even if he’s on vacation.  So he got me an urgent appointment with UCSF dermatology, and I waited in agony over the weekend and called their office on Monday and encouraged them to fit me in the next day, not the end of the week like they planned.

Thing that sucks about urgent appointments at UCSF is you get the residents, and whatever doctor is overseeing them.  So I got a very nice, young doctor who looked at it, showed it to the older doctor, they both said it may be pyoderma gangrenosum, basically Crohn’s disease of the skin, so they shot me with 5 painful steroid shots, and sent me on my way.  They were going to make me wait 2 weeks, but I asked for an appointment the next week with the expert, so they squeezed me in.

The shots helped the pain for 2 days, it looked better, the stoma had shrunk.  Then 2 days after that, it was back to bad, and 2 days after that, it was even worse.

Dr. Terdiman meanwhile emails  me that he spoke with the chief of dermatology at Stanford, and they treat pyoderma with much success with either thalidomide, or IVig.  Hmmm….which to choose?  Thalidomide is so damn tempting after its reputation for grotesque birth defects!  Garin’s been theorizing for over a year that I may have an immunodeficiency on top of the autoimmunity and the treatment for that is IVig.  I have an appointment with immunologyat UCSF  in November to discuss this very thing.

So I jumped at the chance to try it, even though they use much higher doses for pyoderma, and over 4 days, so not sure what answers it would give about the immunodeficiency, but maybe it would help both the pyoderma and the Crohn’s, since clearly the Tysabri either made things 10 times worse, or didn’t make it any better.

So I come in the next week with more pain, the expert looks at it, said it’s atypical pyoderma and the dosage of shots they gave me last week were 1/4 of what they use for pyoderma.  They gave me 5 more incredibly painful shots,  prescribed 2 creams that were immunosuppressives, and said if this didn’t work, we could try IVig, but it takes at least 2 weeks for the insurance to approve it since it’s off label, if they approve it at all.

So I was sent home again, told they’d submit the paperwork and get that going, but he was confident the topical would work, and I may not need the IVig.

There’s a test to take to make sure you’re not at increased risk for blood clotting.  Which the resident didn’t write up properly, so I’m at the lab, having to call their office, figuring out which test to take.  Then I find out on Thursday that Dr. Berger hadn’t entered his notes in about our appointment, so the office didn’t submit the paperwork to insurance until then, and since it takes 3 days just to process, they wouldn’t start until next Monday.

Meanwhile, the shots had barely helped, and the cream that the resident had prescribed was at the wrong dose, and the pharmacist said the other cream didn’t come in a  cream, only the powder.  So back on the phone, got it all straightened out, and I didn’t get my topicals until 5 days after the appointment, so of course, there was very little improvement.

At this point, I’m pissed off about the IVig.  Luckily, my sister works for the #1   pharmaceutical company that uses the most IVig in the country.  So I got on the phone with them, told them my doctor had just faxed in the request, and could they do ANYTHING to speed up this process as I had now gone 2 weeks with no treatment and was desperate.  Luckily, I’m the little sister of someone important in the company, so they did their thing, and they did it fast.

These two weeks were spent mostly on my back, since the stoma is much smaller and retracted when you lie this way.  Standing up, its grotesque size and the sore underneath just made for too much pain.  And I no loner get any happiness from the opiates, so I can’t even claim they are fun anymore.

Coram pharmacy calls me back an hour later, said they got the pre-authorization, they could start IVig tomorrow, but couldn’t get a home nurse to do it over the weekend, so let’s start Monday!!  Fuck you, 2 week pre-ops.  Dr. Berger was on vacation, so I got the nice resident and my wonderful Gi to basically go over his head and authorize starting the IVig before I give the topicals another week or 2, or whatever Dr. Berger was thinking about.  He gets into the office today and I hope he doesn’t mind that the patient wasn’t going to wait his 2 weeks pre-authorization time, and I’ve got connections in high places, so the IVig is sitting in my fridge, (I love how it’s marked as “human”) and I’m drinking lots of water in preparation for the infusion today.

Will it work?  Will it help the Crohn’s?  Will it reduce or eliminate the pyoderma?

And if it does, do I try another Tysabri infusion?  I can’t say that it’s doing anything to help my bowels; I’m back to loose stools mixed in with some solid, even on the diet, I am getting nauseated a lot, and have lost 7 pounds in the last 2 weeks.

So I’m hoping IVig to the rescue.  If it can quiet things enough, I may add more hookworms in before anything else gets much worse.  I was hoping the Tysabri would control things while I upped my worm dose.  Now I’m not sure if I’m even going to be able to continue.

The gastroenterologist says the enlarged stoma is a reflection of the skin inflammation.  The dermatologist says the stoma is a reflection of the bowels inside.  I asked them to have a conversation with another, since the two experts in the field better get their advice straight, and stop confusing their patients.  It seems like the stoma is under no doctor’s jurisdiction.  Dr. Terdiman only covers the intestines inside, and knows nothing about stoma and skin care.  Dr. Berger says the Crohn’s treatment should be treating the stoma.  I guess I need a stoma doctor to treat the actual stoma…

I say, so help me God, if something doesn’t improve soon, I am really looking at the high cliffs of the Pacific Ocean longingly every time I drive up for yet another UCSF doctor’s appointment.  A little Thelma and Louise style suicide.  Just turn my wheels violently to the right at the wrong time, and weee…..no more Crohn’s disease, no more , pyoderma, misery solved.

My husband reminds me that most suicide attempts fail, and then you are left with worse problems than before.

So IVig, more worms, perhaps Tysabri or Stelara and hope.  Fingers crossed something actually works, and fast.  I’ve long past my quota of patience, I’m moved into despair.  I’d like my life back so I don’t have to take it out.  We’ll see….

I set the surgery date and was marked for both a colostomy and ileostomy. I had a colonoscopy scheduled the day before, and went in with it with a six month expectation to get through the surgery, take Tysabri or Stelara for enough time to get more worms in me, raise my vitamin and mineral levels, build my probiotic levels back up, maybe even a few fecal infusions. But the colonoscopy showed such a scarred and battered rectum that it wasn’t hook up-able, so what I thought was temporary is now permanent and I am still reeling from this emotionally, since I had no idea it was so bad.

I killed the worms before surgery. Just in case they had any contribution to the infections. I cried doing it. If you’ve read through this whole blog you would know how invested I am in this therapy so the disappointment of this failure is tantamount.

I’ve since heard from two Crohn’s disease cases who were in remission but since have had more disease activity so much that one had to go back on Humira, the other Remicade. I remember a few years ago, one of the researchers who was involved in the first proof of concept CD study said that most patients had to use medications along with the worms, but the worms helped those meds work better. There aren’t that many of us doing this over 3 years, so it may be that after a year or two, the immune system overrides the worms’ effects. It could be more worms are required more often, or a combination of worms, etc. Had I been able to infect every 6 months with 10 hookworms, maybe that would have kept me in remission. Had I not tried the TSO maybe the dose of hookworms before that would have had a chance to work. Or maybe not. I can’t go back.

Sometimes I regretted not doing the human whipworms. But I heard from one UC case who had the worst ulceration in the area where the whipworms resided…and had his first solid bowel movement after finally killing them off. Another patient after getting solid, documented remission later had bad ulceration where the whipworms were and worse small bowel inflammation. So why does it work for some, for just a while, for others not at all? I was hoping by now we’d learn more.

Jasper gave me my refund back, by the way. True to his word, eventually.

I’m sitting at the UCSF infusion center, waiting for my first Tysabri infusion. The reason I did the worms was to avoid this. Yet here I am. I can’t even begin to describe the disappointment and mental pain.

The surgery didn’t go smoothly. The rectal stump blew, causing infectious fluid to leak into the abdominal cavity. I had a high fever and had to get a drain put in, which was hard to deal with. Getting used to the ostomy has been challenging. Then my intestines froze for 3 weeks and I was unable to eat without severe bloating or vomiting. I had to go on TPN, my magnesium kept dropping, the suffering seemed never-ending. I finally went home with a picc line, learning self-administration of this labor intensive fluid line that pumped all night.

Then as things slowly got better, I started getting sores under the stoma, and each bag would leak, since the drain was still in, right next to the bag, making a crease, but the wounds were also where the stitches were dissolving, so the possibility of it being a Crohn’s thing became suspect. It gets better then worse and is still painful. Now I’m waiting to see if the Tysabri helps.

The whole last year has been a nightmare that never ends. But at least the rectum is quiet now, no abscesses or fistulae. I guess the plan is to try Tysabri… If it works, then just try to enjoy some good health for awhile. Even when the worms were working, I had magnesium loss and the side effects that created, a miscarriage, the stress of fighting with Jasper, the notoriety from this blog. Watching some people get worse on worms, others miraculously better. Not knowing if it would last.

I’m almost 40 and I guess I’m still alive. But I wish life weren’t so hard. I’d sure love a long-lasting remission. I’ve suffered quite enough.

Back in the hospital again.  Two new small rectal abscesses.  What the hell is going on?  I never had abscesses, fistulae.  Are the hookworms doing anything negative since they are unable to do their positives whilst on antibiotics?  My GI says if the infection doesn’t clear in 2 weeks, then the only option is a colectomy or temporary one.  Um…what?  The rest of my colon is inflammation free for the first time, my ileal-cecal valve hasn’t had activity for years, it’s all focused right at the end of the sigmoid and rectum.  I’m not going to cut my entire colon out because the end is infected…and if the infection clears, he wants me to do Tysabri, since Humira made me worse so Cimzia probably won’t work, and the only other option is another biologic being used off label for psoriasis.  Carries the same infection and lymphoma risk as the other biologics.  Tysabri doesn’t carry the infection or cancer risk, but you have a 1 in 1000 chance in getting a fatal brain infection.

Aren’t my choices lovely?  Life offers such wonderful crosswords.  I can’t get the worms to work until I’m off antibiotics.  I can’t get off antibiotics without developing more abscesses.  I could be hopeful, get the infection cleared, temporarily use Tysabri to keep the inflammation down (I’d rather die in 2 weeks then have a long, drawn out death from lymphoma and as a gardener, I’m constantly getting scraped with dirty wounds. ) then reinfect with a larger quantity of worms, come off the Tysabri, and never, ever let myself run out of worms again for longer then just a week or two.

Anyway, I thought I’d share a song with all of you struggling with similar decisions, for everyone who’s ever had their hopes dashed time and time again and had to carry on.  The camera work and recording quality is terrible, but it’s all I could do in the hospital.

Enjoy.

So today, relucantly, I go back on antibiotics, and I guess I’ll never see what the hookworms that reside in me are going to do.

I’m going through the hoops to try Prochymal.  I have a nurse today (that I’m going to cancel) come show me how to do Cimzia.  I think I’d rather try stem cells then another biologic, since Humira only made me worse.

I went to a new naturopathic MD, Dr. Cowan in San Francisco.  He has a protocol of supplements and drugs (all of which I’ve tried), including LDN, GAPS diet, fermented turmeric, boswellia, s. boulardii, e. coli Nissle, and Biokult.  I started 3 mg. of LDN two nights ago, couldn’t sleep the first night and felt a little happier yesterday, last night was fine, no side effects.  I tried LDN in the past, got it wrongly compounded, switched to Skip’s pharmacy and seemed to get better, then I broke out in a weird rash all across my butt, it was thought I was allergic to sulfasalazine so I stopped that, made a yogurt making mistake, and flared miserably.  So I came off the LDN to go on Prednisone.  I tried it again later and it didn’t seem to help.  But I’m always open to trying things a third time, even if I’m despondent about it.

He took one look in my mouth and said, “I don’t think you’re capable of fully healing with how many amalgams you have in your mouth.”  I have 7: 3 of which are huge. I’m pretty sure they were all put in the year I got Crohn’s, so it’s always been there on the back of my mind that mercury poisining is contributing to the Crohn’s.  The interesting tidbit is I always itch when I wear anything other then gold in my ears.  If  a closed wound reacts to metals, imagine what my body does to mercury vapors coming out constantly when I breathe and chew?

It’s something I’ve been wanting to do for 13 years, but I was either nursing or pregnant, or too poor.  I thought I was going to get a refund from AIT in the middle of March, but I have no idea if this is still happening.  It will help pay the $5400 it will cost to get all of the mercury replaced with composites, but the trips to SF twice a week will add up fast, especially as we currently have no car.   I’m supposed to go up to San Francisco twice a week to start the detox process.  Whether or not it will make any difference remains to be seen, but Dr. Cowan told me to expect that it will take 3 years to fully rid myself of the mercury.  I guess I won’t be having another child.

To say I am disappointed in worm therapy and everything else is a huge understatement.  I still think the right combination of worms will help me, but how the hell do I get them into me without a severe reaction?  And why is my body now churning out anal abscesses when it never has before except the first time I was diagnosed with Crohns?  Why am I now dependant on antibiotics, and need something like Cimzia or Prochymal just to get me off of them?

I love reading success stories.  And I’m insanely jealous of those with almost no side effects.  If that were me, I would redose in a heartbeat.  But the side effects from TSO were so severe, even 60 mg. of prednisone didn’t curtail the flare for days, and later, that’s when the abscesses formed, after coming off the pred.  I feel like it’s happening now in another location, so I go back on Augmentin full dose, and pray that it doesn’t cause some superbug that I will never get rid of.  I still plan on doing fecal tranfusion after coming off the antibiotics again, since we’ve got the hang of it and it’s no big deal anymore.  And the best way I know to restore the colonic bacteria.

I have to have a CRP > 5 and a CDAI over 250 to qualify for Prochymal.  I’ll also have to do a CT scan, which I hate, since I already had 2 this year.  But it seems like a way to temporarily alter the immune response, heal tissue, etc.  My UCSF GI has one patient who was in the earlier trials who failed Humira and Tysabri, who is now in remission 2 years later and considers herself “cured”.  I’ve also read threads on healingwelll that say it only lasted 3 months, but I’m really just buying time to get through the initial mercury detoxification, and perhaps redose with worms, have the LDN have a few months under my belt, and see if the e.coli Nissle + diet can make any difference.

I’m losing weight, which I hate.  My formerly lovely 165 self is down to 150 and I look skinny.  A diet of broth and soup isn’t helping.  Dr Cowan wanted me to go back on the intro diet for GAPS for 3 days, then do stage 2 for 3-7 days, etc.  The antibiotics will probably make me nauseous again, which is a plus when you’re not really thrilled about your food.  My daughter’s birthday was yesterday, and I watched my family enjoy a pizza, flourless chocolate cake, and coconut ice cream, while I ate my 6th bowl of the same beef stew and felt the strange pain forming under my vagina in my rectum, and thought of everything I’ve tried and failed over.  I woke up in the middle of the night, since my daughter slept with me and I didn’t want to show her my misery, and cried and cried at everything that hasn’t worked.  And then went back to sleep and dreamed, forgetting my pain for a little while.

Oh well.  I carry on.  We went to the SPCA yesterday to find a puppy.  There was one that was perfect; an Australian sheppard mix who was so friendly.  When we asked to see her, we were told she was on a 24 hour hold and was going to be adopted tomorrow.  All of the other dogs were either chiuauas or golden retrievers.  We did find a possible cute other one, but were told it was extremely shy, so wouldn’t fit in with our social lifestyle, with neighborhood kids coming and going all the time.  On the way home, my daughter cried and cried and said she’s giving up on finding a dog.  I told her that we had to keep trying, and reminded her of the little cross she once picked out with my mom when I was doing really badly.  It says “Never Give Up”, and when I’m crying at my extensive failures stacking on each other and still sick, she reminds me that I should never give up and some day I will be well.

It’s hard to believe after 24 years of disease.

What’s worse is being in remission for over 2 years on a small handful of worms, then going an entire year of redosing and getting worse and worse.  If they never had worked, it would have been easier.  I’d like to think the mercury amalgams are preventing my whole healing, but then why would the worms work for a while?  Why would I have been in remission in the past on diet alone?   I don’t have severe Crohn’s, I have moderately severe Crohns (as if that’s any better), but I thought if I just kept some worms in me, ate the right diet, and did a fecal tranfusion,  exercised, meditated, walked barefoot in my garden, etc, that I could approach some semblance of wellness.

So it’s back on the antibiotics, searching for “what’s next’.  In 2007, I had the choice of Procymal or worms.  I chose worms.  Now I’m having to choose Prochymal.  Oh well.

Never give up.

Or perhaps I should call it “transpoosion”.  This podcast has some interesting information from the king of fecal infusions, Dr. Borody in Australia.  He talks about an MS patient whose symptoms were reversed by fecal enemas!  It’s been described as the “ultimate probiotic” and this article talks about different uses for fecal transplants, including treating obesity!   In the US, it’s only approved for recalcitrant c. difficile infections, which it has a supposed 90% – 100% cure rate.  Dr. Borody had one study of 9 UC patients who got and stayed in remission longterm.  He has a protocol to follow and uses a nasal-gastric tube and colonoscope to get the bacteria in the small and large intestines.  And then the patient is instructed to do at least a week’s worth at home.  He has patients do an antibiotic course first, but this rat study showed that antibiotics actually prevented the bacteria from implanting as well. One study analyzed the pre and post treatment bacteria of the recipient, and found that the patient had the microbiota of the donor.  Here’s another study that found the same thing.

I figured I’d take advantage of being on antibiotics for so long, so I came off of them and started the fecal enemas that day.   Actually doing the infusion at home is rather gross.  Whether or not this will work for Crohn’s colitis remains to be seen, but I figured at the very least, I could implant healthy bacteria in my colon, which has got to help.

First you get an enema bag, a blender you’ll never want to use again, some distilled water, and a thing to put under your toilet seat to catch the feces.  You want a donor you can trust is free of viral pathogens, and preferably a relative or a spouse.  Most people test their donor, I did not.   I decided to use my 10 year old daughter, since I breastfed her for 2.5 years, (totally different microbiota if you’re bottlefed), delivered her vaginally at home (first population of our gut flora is what we swallow from our mother’s vagina during birth, and goes on to prevail for years.    And she’s never taken antibiotics.  Though I’m not sure if I gave her the correct flora, obviously being imbalanced myself, at least I’ve always had a healthy vagina, so hopefully her first bacteria were correct, she was full of bifidus infantis for the first 6 months, and I fed her basically SCD for the first few years, not introducing sugar, wheat, or cow’s milk until she was over 2.

Can I just say my family is wonderful?  My daughter is totally willing to do this for me, and accepts why I’m doing it without question.

So the first time, we collected the poo, added 1 cup of saline (sea salt added to the water, about a teaspoon and a half), and you blend that together.  (This is by far the grossest part, and my former chef husband did it for me, as I was sort of disgusted.)  He then filtered it through two layers of cheesecloth and put it in an emptied enema that I bought at the drugstore.

Lay on my left side, lubricated the tip with some propolis/calendula cream I got from a wonderful beekeeper I met at the biotherapy conference, and slowly put it in my rectum.  This is the most painful part, as I have external and internal hemmerhoids, and an inflamed rectum.  And then I squeezed.  And squeezed.  Nothing came out.

My husband brought it back into the bathroom and discovered that the enemas have a little insert with an X on it, and that was blocking the flow.  Unfortunately, in transferring the mixture back into the enema bottle, my husband lost 7/8 of it down the sink.  So I put a few ounces up my butt, and called it a day.

Interestingly, the very painful hemmerhoids I had been struggling with for days, and rubbing zinc cream on them every hour so I could walk, went away the next day.  But it might have been a coincidence.

The next day we tried the enema bag.  One tip that someone told me; make sure the mixture is all the way down to the end of the tubing, so you don’t put the entire volume of air into your colon.  You want to open the clamp and make sure it’s full by leaning it over the toilet, clamping when feces reaches the tip.  My husband, bless his soul, did this all for me.  We had about a 50/50 mixture of stool and water.

We hung the bag from my microphone stand, and I put a mattress on the floor, covered by a garbage bag, a towel, and a stack of cloth diapers.  Slowly put the tip in (ow) and my husband unclamped.

The hardest thing about trying to get something up your butt, is you’ve got a lovely anal scphincter in the way.  You’ve got to get past this, pushing the internal hemmerhoids painfully to the side if you’re unlucky enough to suffer from them, and keep going until most of the tip is in.  If not, the mixture will just drip back out, which we discovered.

So tip in deep enough, open the clamp, and slowly the mixture goes in.  It feels cold and weird pooling up in your rectum and sigmoid, and I started getting the chills, worrying that I was having a bad reaction.  Turns out I was just cold.  My husband would clamp and unclamp according to how I felt, and we got most of it in with a few tries.

I lay on my left side for 15 minutes, rolled to my back and tried to massage the mixture up my colon, lay on my back, then rolled over on my right side.  Then I got cocky and decided to move to my bed to read.  Had a feeling of gas, and suddenly, it all started coming out again, all over my bed and blankets, sheets, and as I tried to move back to the floor mattress, I think I lost most of it.  Sigh.

Third day, my daughter forgot, and pooped at the neighbor’s house.

Fourth day, she pooped around 11, but I couldn’t do the procedure until 2.  I decided to skip the salt water and just boil the distilled water first, then cooled it to room temperature.  I was afraid the salt was acting too much like a laxative.  We also added just enough water to make it go through the tubing, and didn’t bother to filter it.  I figured the less liquidy, the more chance I had to hold it in.   This time was the charm; I stayed on the floor mattress, did the 10-15 minutes per side, then fell asleep for an hour .

When I got up, I had a few moments that I thought I was going to lose it, but breathed and waited and clenched my butt (a common IBD sensation), but I managed to hold on to the precious mixture overnight, 16 hours!  My BM the next day was still skinny and solid, so no great revelations.

Yesterday, my daughter pooped again around 11:30, which was very inconvenient, but I dropped everything and helped my husband mix things up.  The tip was even harder to insert since it hurt so much, but we got about 5/6 of the mixture in before I declared my rectum had had enough, and I did the whole 15 minutes on each side thing until I remembered I had a dentist’s appointment, so had to do the clench and sweat thing until I could get up, put a pad in my underwear, and prayed I didn’t have to evacuate the contents during my 2 hour intensive teeth cleaning.

I didn’t, and held it in overnight.  My poo this morning smelled more like my daughter’s, but still skinny solid stools.

One thing I noticed after each infusion (even the one where I only got a few ounces in) is a strange feeling of calm.  Almost zen like.  I know our bacteria strongly influence our moods, (not to mention what we eat)  so I wonder if her bacteria were doing anything?  Could be a coincidence too; I’ll have to see if it keeps happening.

There were more gurgles then normal, and some gas I managed to expel without a mess (always a good thing), and that brings me to this morning.

I stopped the antibiotics 5 days ago.  The last time I did this, I went 5 days without issue, then started to get mushy stools, nausea, and was up again at night for the first time in weeks, so my doctor advised me to go back on them until I tried Cimzia or Prochymal.  So it’s still early days.  I’ve been feeling more pain in my ileal-cecal valve (where I have minor scarring, so when it inflames, gas gets stuck), and mucus has returned, just a little, even on the antibiotics.  Nothing’s changed yet.

I started the GAPS diet 2 weeks ago while back on the antibiotics, increased my probiotics, and began bupropion a week ago.  (Thought to perhaps have anti-TNF alpha properties.)  The bupropion amazingly is giving me only positive side effects; I could feel it the first day.  So happy and energetic!  I’m up to 200 mg.; will stick with this dose for a few more days, then go to the full dose of 300 mg., split up three times a day.  I notice my sleep is a little lighter, but so far I’ve been able to fall asleep and stay asleep the whole night.  (Insomnia is a common side effect of Wellbutrin.)

I’ve been doing twice weekly IM magnesium injections.  (Or I should say my husband is giving them to me.)  My last red blood cell magnesium test was finally in range; albeit only just barely, and I took it 2 days after a shot, so don’t know how accurate it is, but I am feeling better too.  Less twitching, no anxiety, no neuropathy.  I missed 2 weeks and things got worse.  Then I tried to dose two days apart, and that made things even worse.  Levelled out after a week, so I went back to the twice weekly.  I also notice if I do the whole vial, it’s too much.  We experimented with dose; about 3/4 is perfect; doesn’t waste too much, doesn’t hurt that bad, and doesn’t give me side effects, though I do notice I twitch a bit more for a few days.  The balance between magnesium, Vit D, and calcium are all subtly intertwined, and too much of one seems to unbalance the others.  For example, if I take more then 5000 IU of Vit D, I notice an increase in magnesium deficiency symptoms, so I back down again.  I’m hoping the higher I get my magnesium, the higher I can take in Vit. D.

I have Cimzia in the fridge.  Am investigating Prochymal.  Most of all, I hope that bupropion, the diet, the fecal infusion, and at last the worms kick in, so I don’t have to go down the biologic or stem cell pathway.  I have an appointment next week with a nurse who comes to the house to teach you how to administer Cimzia, and I am actively quering UCSF for more info about Prochymal, so I’m getting all my ducks in  a row regardless of what happens.

What are the worms doing?  Not much but negatives for the last year.  I have lost my love for helminths.  Though they turned my flare around and enabled me to gain weight and have a normal CRP for 2 years, the side effects each time are very long lasting and difficult, and I believe the prednisone and all the reinfections I had last year were to blame for the abscesses.  I hope I never have an abscess or fistula again.

So that’s my update.  I’m hoping a few more good, fresh fecal infusions start turning things around.  We’re supposed to go camping later this week, so I’ll have to pause then, but will probably do anther week’s worth since I’ve only had1  infusion within half an hour of my daughter pooping, so I want to do 9 more for a total of 10.  Then I might do them weekly for a while unless I feel I don’t need to.

Always very interesting in the Crohn’s disease world.  After the second infusion, my 13 year old daughter looked at me and shook her head saying, “Mom, you’re really brave.”  I caught my younger daughter trying to explain to her friend why I had a mattress on the floor.  I’ve asked her not to tell anyone, but these days, most of my friends and family don’t bat an eyelash when I tell them my next Crohn’s disease therapy.

I had an enormous pile of horse manure dumped into my driveway the day before I did my first fecal infusion.  I also did an egg count.  It was a day filled with poop, and I’m getting a little tired of it all.  But if it works, it will be worth the gross factor.  Horse manure smells a lot nicer then human manure, that’s all I can say.

Oh another tip; I rubbed Ben Gay all over my chest before I started.   Nothing like menthol to disguise the smell.

I still have eggs, and my husband does too! But he ate a walnut a few weeks ago and had a mouth reaction, so he hasn’t gotten any benefit yet.   It will be interesting to see if my egg count rises after a few weeks, and whether or not the egg count was affected by the antibiotics.

I wonder what next week will bring?

So I started the GAPS diet which is basically SCD but with much more emphasis on probiotics.  You’re supposed to drink lots of bone broth between meals, make veggie juices, and stick with mostly meat, vegetables, and some fruits.  Later, you can add nut flour products.  You’re encouraged to start adding probiotic foods (saurkraut, kefir, yogurt) slowly until you build up to eating probiotics with every meal. The first few days were hard, as I was craving chocolate and fruit, but those have gone away and I’ve settled in for the long hall.  My friend gave me some nettles, so I’ve been juicing those and made some tea to try to increase my nutrition.

I’m getting all my gear to try a fecal transfusion enema.  The procedure is mainly used for c. difficile, and  has a high cure rate, even after repeated rounds of antibiotics have failed.  It’s used less so for IBS and IBD.  I figure it’s worth a try, and may be a way to repopulate my colon with appropriate flora.   I once had a colonoscopy that looked like a c. difficile  infection, but tests were negative.  Flagyl stopped my flare in its tracks, within a few days I had a solid bowel movement after having diarrhea forever.   I’ve since learned that there are over 150 species of clostridia, but they only test for 2 I believe.  Every stool test I’ve sent to a place like Great Smokies showed absolutely no beneficial flora, and an overgrowth of various things like klepsiella.  This study shows that after 2 weeks of a single infusion (I believe), the recipient’s colonic flora was very similar to the donor’s.  Although in the murine model, this study showed that there was less success after antibiotics in repopulating the microbiome, but that just tells me I’ll have to do it a few rounds, probably not just one week.

Another avenue I’m exploring is buproprion (generic for Wellbutrin).  This study showed in the murine model, that buproprion profoundly lowered TNF alpha.  Another study was done with psoriasis patients, and many of them had lowered plaque levels after 6 weeks on the drug, and one who elected to stay on it had the effects last 3 months, another was still well 19 months later.  There was a thread on healingwell of one parent whose daughter did well on it alone for 7 years, apparently there are a few others.  I don’t like being on antidepressants, but I’m already on 10 mg. of Celexa, which seems to be doing nothing, so I figured I’d switch.  I’m three days in, took 100 mg. the first day and 150 the second.  Getting a little wired and twitchy, so I’ll sit with this dose for at least a week before adding.

And if all that doesn’t work, it’s either Prochymal or Cimzia.

I still have worms, but they’re not supposed to work when you’re on antibiotics.  But if I flare off of the antibioitcs, are they enough?  I’m not as enamored of the worms as in the past, since this year has been hell and I haven’t had a fistula or abscess in over 23 years (and then, it was a rectal abscess not a fistula).  I think it had to do with using Prednisone to manage the side effects, and the dismal TSO experiment.

It’s been quiet in the worm world.  I never got a refund from AIT.  Jasper said the middle of March.   I wasn’t expecting anything, but gave my paypal information, was told that he was going to wait a few weeks.  We’ll see if anything comes….

Husband has worms.  Found them in my last egg count.  But he ate some walnuts a few weeks ago and had a mouth reaction, so no oral benefit.  Didn’t have that many eggs either, but I’m going to repeat since both of us had a lot of fiber in the way, and I didn’t stir the stool as well with the salt water as I normally do.  (I had to wait hours, and both of our solid bowel movements had hardened.

What do you think of my plan?