Only Good News This Time

While remission still eludes me and I've had some bumps along the way since my March post... the trend is positive.  Hard to attribute this to any specific thing.  Is Humira just taking way longer than anyone expected (including multiple doctors)?  Almost everyone who advocates healing through diet says it takes many months to heal. 

TMI SECTION BEGIN:  Feel free to skip =) 

• Only a few episodes of noticeable blood in the last month.  
• Formed stool / solid despite being misshapen from the inflammation (this is my main indicator that I'm still not in remission).  
• Cramping is rare.  
• Tactical farts are possible if I'm careful =P  Nice not having to run to the bathroom every time I need to fart! 

TMI SECTION END

I've found some chips I can eat!  I loved chips and it's hard to resist them but they are sooooo bad.  Well... most of them are really bad; at least the ones I loved!  Anyway I found these "Jackson's Honest" chips; they have a pretty wide product line but specifically I liked their Sweet Potato Chips.  Only three ingredients:  sweet potatoes, coconut oil, and sea salt.  Perfect!  A shame they are almost $5 a bag.

One day at Aldi we were walking the isle of temptation.  You know the one... you first walk in and they force you to walk by all the horribly awesome snack foods.  I try to not even look let alone bother reading any of the ingredients; I know I can't have any of it.  This day however some "Simply Natrual" sweet potato chips caught my eye and I picked them up; only because it wasn't the typical "Clancy's" trash.  Ingredients were: sweet potatoes, sunflower seed oil, and salt.... and half the price! 

Made my own chocolate dipped bananas.  They were awesome!  Just used my skinny chocolate to pour over them.  I'll update my UC Safe Food section with this and the chips.  

Been a regular at a specialty bakery in Eagan now.  Bitter Sweet Bakery off Cliff has some great gluten and dairy free stuff.  Their 'country loaf' is really good, the banana bread is awesome, their pancake mix is the best I've had (and we've tried a few!), carrot cake is OK, but the pumpkin bars are amazing.  I have to exercise restraint though because these things have a lot more sugar than I should be eating.  So hard though... It's more than just how awesome it tastes... it makes you feel almost "normal". '

That last I wrote as it popped into my head.  I stopped to think about it for a minute and got a little teary eyed.  I think I'll just end this post here... 

Skinny Chocolate Saved My Life!

Well I guess that's a bit much... but I do attribute it directly to my latest exclusive victory:  I stopped loosing weight! In fact I've gained some.  I'd been loosing weight for almost a year.  It's a common problem with UC and Crohns; mal-absorption of nutrients and weight loss. Using MyFitnessPal I was able to put in my current weight, my goal weight, some other info and it would calculate how many calories I needed in order to hit my goal.  It was something like 2,500+ calories a day and I was only eating like 1,500 or so.  No problem right?  Just eat more!  The food I'm eating requires a large quantity to get that many calories.  What I've found through trial and anguishing error is that 'passing' that large volume was even worse than not eating enough!  So I was eating enough calories but tearing my self up in the process. 

My sister-in-law Jessica and I talk a lot about diet, cooking, etc at family events.  She's a big proponent of Trim Healthy Mama and from what I hear talking with her it's an amazing lifestyle.  She brought up a couple of times this stuff called "Skinny Chocolate" knowing that I can't eat real chocolate or much of any deserts or treats.  Well I *finally* tried it and kick myself for waiting so long.  Not only does it taste amazing but if you use the peanut butter recipe in my "Paleo / UC Safe Food" section (linked above) you can pack in over 200 calories per table spoon!  That's the key here; large quantity of good calories in a small portion.  I was eating a few pounds of it in a week for... two months?  Over a month at least.  Finally I started seeing my weight level off!  Amazing!  Then I gained a few pounds!  I've backed off on it for now.  I went a week without eating it and now I've made a batch of 'regular' (no peanut butter and not puppy chow).  I'll be tracking my weight still to see now if I start loosing again or if I can maintain a weight. 

I know it's been a while since my last post.  There I left off with a great streak of feeling good and minimal symptoms.  Wish it would have lasted forever but alas it slipped away.  It ended in a bad week, then felt good for over a week, and now flaring pretty hard again.  I'm still taking Humira and wish I could say it's working but I'll just hold out that it will kick in any day now.  Likely end up on a weekly dose here in the coming months instead of bi-weekly. 

In the past I've used GI Buddy to track diet, symptoms, treatments, etc and it's a great app but not flexible.  It does what it does very well; it's almost like MyFitnessPal with extra features related to IBD.  I loved MyFitnessPal for tracking diet; amazing tool.  If you've not used either one at least try them out.  They both suffer from the "you have to log in and record EVERYTHING" issue.  Maybe if you have super awesome smartphones that can actually run their mobile apps it's not as much of an annoyance but that's not my case.

My wife suggested something more simple... just mark down how you feel.  I like it but a little too simple.  So I made a little spreadsheet on my Google drive that I can track symptoms, diet, mental stress, physical stress, and medication.  For all but medication I put a number from 1 to 10 each day and for medication I just mark if I took it or not.  Over time we hope to have enough data to broadly see if something has more impact than another.  Like if diet or stress increases symptoms or if I always seem to get worse right around when I'm due for another shot. Oh I'm also tracking weight just to see if I'm gaining or loosing. 

Here's a link to GI Buddy.  If you have any form of IBD check it out; great app. 
https://gibuddy.ibdetermined.org/

That Was Rough...

That 7 days I was talking about in my last post turned into 3 weeks of hell.  My flare really went into overdrive; I hadn't been that bad since last April or May.  Even had to do more standard tests like C.Diff and parasite.  Did another flex sig and the did a biopsy for rare virus.. CMS I think it was called.  Turned out negative... kind of torn on that.  One the one hand glad I don't have it but on the other would have been nice to have something definitive as to why my flare just won't end. 

To top it off I had the flu from hell.  I seriously hadn't been that sick since the swine flu.  A few days into it I could hardly breathe and went to urgent care.  They ran me through the gauntlet of X-rays, flu test, strep test, IV for fluid, and IV antibiotics.  I was coughing SO hard for sooooooo long my ribs were very sore and sensitive.  for WEEKS my ribs were sore!  Every time I coughed ( which is lasting for weeks afterward!) I had to double over and kind of squat or it felt like someone was stabbing me in both sides and the lower back.  

Then after the flex sig things started improving!  In a week I felt much better.  I had no blood or urgency for about two weeks!  Haven't felt that good in...  well... not sure when.  However the last week has been hit or miss.  We were hoping the Humira was kicking in and that was the reason.  Now... not sure.  Having random blood and urgency.  Maybe every other day a couple times a day. 

The plan is to stay on Humira bi-weekly for a about another month.  If that's not helping then we'll go Humira weekly.  If that don't work then they want me to go on Remicade.  Cautiously optimistic the Humira will work. 

I went to get a second opinion at the U of M.  Really glad I did.  The nurse practitioner I saw was very knowledgeable and so open to more things than hardcore drugs and surgery.  That's why I was seeking another opinion.  MNGI is very strict about what they allow their GIs to do and what studies they accept.  I've seen many different GIs there and it's all the same story.  You bring up anything about ways to help naturally (kefir or modified diet), studies about alternative regiments (Nicotine patch with Prednisone), or emerging procedures (Fecal Mater Transplant) and you get same answers.... there's no "science" on that, it won't help, that's an internet myth, we don't accept that study as "science", etc.  It's not like I'm telling them I refuse to take my meds and I want to do these things.  They won't even approve of any of it in conjunction with their regiments. 

While meeting with the nurse practitioner at the U of M she actually brought up to ME about kefir, fecal mater transplant (FMT), and other natural things that can help.  She was under no delusions these are cures but she's totally open to the idea of "lets try it... if it works great if not move on" and that's all I'm asking for.  I'll be following up with a visit to see one of their GIs. 

Humira & Kefir Update!

I know I promised I'd post how it's going with the kefir.  Got the process down pretty well; just fine tuning it.  I know have a constant supply of homemade milk and water kefir after a few setbacks.  So far I haven't had any bad side effects.  Water kefir is a good drink straight up which is how I usually have it.  Drinking 1 to 3 glasses of that a day.

Milk kefir is way to sour and tart for me to drink straight up.  I've been mixing it in things though and it's amazing!  I haven't had REAL milk and dairy for... I can't even remember how many years.  Being lactose intolerant I'd written off dairy years ago.  Well since the fermentation process actually consumes the lactose I can have milk again!  I have to be sure to do a full second ferment / maturing process.  That way all the lactose gets consumed.  I mix it in smoothies and cereal.  I'll be expanding my use of it as I fined recipes. 

We had some great news; Humira reimbursed me for the starter kit!  That was a huge relief.  So grateful they provide such assistance to those who need it.

I took my second dose yesterday.  Two shots this time around and next time I'll be at the maintenance dose of 1 shot every 2 weeks.  Man that second shot in my left leg kills.  Not sure why my left leg is so much more sensitive than my right.  Maybe I'm all tense from the first one?

It's been a bad week for symptoms.  For the last 7 days I've had a lot more blood and going more often.  While slipping backwards is bad enough I feel the most frustrating part is not knowing why.  Was it :  something I ate?  because I ate too much at once? stress?  maybe Humira was wearing off? Who knows!  Before this slump I was feeling OK... maybe the best I'd felt in months.

Real sick of this prednisone.  I feel like I'm roid rage'n more than ever; I'm sure those closest to me can tell.. .I'm sorry.  Sleep is hard to find.  Even if I manage to get to sleep at a descent hour I wake up in the night one or two times to go to the bathroom.  Sometimes I can't go back to sleep. 

Oh, almost forgot... I posted a new page you can see at the top.  It goes over how I got on the Humira Protection Plan to assist with affording the shots.  I also uploaded all the documents I had with lots of assistance programs for more than Humira or even UC.  If you feel you can't afford your meds you have to reach out to these organizations!  They are here to help!

Humira I Go

I'm officially on Humira now.  A part of me is sad I couldn't find relief naturally... but I'm already getting over it.  I'll still pursue healthy options in my diet and other non-pharmaceutical options because they are simply the right thing to do overall and in the long run.  Really hoping this puts me into remission and I can broaden my diet options.  Somethings I'll never be able to reintroduce like most dairy or stupid amounts of sugar.  It would be nice though to be able to join in most meals with my family and relieve a lot of that pressure and stress from my wife.  Just because I started these meds doesn't mean I'm all better.  Best case scenario is in 4 weeks I should see significant improvement but it could take longer.  In the mean time I'm still very inflamed thus all the natural methods will aid in ensuring I'm getting proper nutrition.

I'm still loosing weight which is a little scary.  Down to 159, was at 161 my last office visit, and 163 the time before that.  I'm really hoping the milk kefir helps me absorb nutrients better.  That's kind of the whole point of it so we'll see.  I'll get into that in another post though.

Humira is a self-administered injected drug.  Went in to the GI and they have a physicians assistant show you how the auto injector pens work. They answer all your questions, show you how to do it, and then you do it.  I'm a super big wuss when it comes to needles so this is a big deal.  My wife says I'm worse than the kids when it's time for our flu shots!  She's pretty much right.  However these auto injectors are pretty fool proof.  Just hold it properly, push the button, hold everything tight until it goes yellow... done!  Man it hurts but only for like 15 seconds. 

Gave myself two injections at the doctors office.  Then two more before bed.  At the office I administered them into my belly but that night I did the leg.  I think the leg is better.  Holding the pen against your belly properly is awkward and later that day when laughing it made it sore.  So far no real soreness in my legs and holding the pen was much easier.  I don't think either location hurt less. 

Emotional Rollercoaster

Met with the new GI I was ranting about two posts ago.  My wife was there this time.  It went much better this visit.  If I had to guess it was that she was having a... better day... I was having a better day... and I let her do most of the talking.  Very rarely have I found specialists open to discussion or challenges.  Last visit was the last visit on a Friday; I'm thinking that had a part in all of this.  Anyway; lets not dwel on that.

She explained the different 'paths' you take with pharmacuticals.  This is why I really like her; she explains these things where other GI's are just like "here, take this..." without saying why or what the next step is or explaining the pathway.

Path one was what I was on and it's not working.  You flare up, you take predinsone, you get into remission, and they figure out which pill will keep you in remission.  Typically start with salfasalazine or a mesalamine like Lialda or Asacol Apriso. (Asacol is no longer available)

An offshoot of that path is if you're having a very bad flare, like you end up in the hospital, they put you on IV steroids.  Get you into remission.  Then get you on a meslamine or immune suppressant like 6MP

When immune suppressants like prednisone and 6MP don't work you have to go down a different path.  These are pretty severe cases like cronic ulcerative pancolitis.  None of the above seems to work, you're constantly inflamed and suffering from symptoms.  That's where I'm at.  Salfasalazine stopped working, predinsone stopped working, and there's no real point in even trying meslamines as it's all down that same path... won't work.

Next path is 'biologics'.  These are intravenous drugs that both get you into remission and maintain it.  There's Humira, Remicade, Cimzia, Tysabri, and a new one about to come out Vedolizumab.  Some are self administered injections and other's are "infusions" done at a clinic via an IV.  These things are crazy expensive and I'm about to start on Humira.

So I was perscribed Humira.  I go to my perscription drug provider and it takes me a few days just to figure out this:

Humira Starter Kit:
Total $10,126
Approved Amount $8,692
After Deductible is met (20%) $1,738

Humira monthly 40mg pens
Total $2,987
Approved Amount $2,471
After Deductible is met (20%) $465

Thankfully I've hit my deductible this year (which is kinda crazy itself.. we've spent many, many, thousands of dollars on direct and indirect medical expenses).  Now almost all of the manufacturers of these drugs have some sort of assistance program.  Some are better than others and they all have different requirements and procedures for getting approved.   There are also programs out there affiliated with churches and other non-proffits to help.  We spent many, many, days trying to navigate them, figure out a path to pay for this, and it's a logistical nightmare.

Humira Protection Plan is the assistance program for Humira and pays up to $2,000 for the starter kit and $700 per month. I'm registered for 5 years on the plan.

My provider does not accept the Humira Protection Plan card; you have to check with your provider to find out. They will accept it next year starting JAN 1 but won't accept it early. However my deductible resets JAN 1 so taking $2,000 off $8,692 doesn't exactly make it affordable. They are pretty much asking me to buy a car and then take on another mortgage payment for the rest of my life!

So I called Humira back for like the 10th time and they said they have a reimbursement plan for just such things. It's a totally separate process but the same numbers... $2,000 then $700/mo. However I have to order Humira, pay out of pocket, send them in a bunch of info, and they will reimburse me. I ordered the starter kit and received it yesterday. Filled out all the paper work and submitted it yesterday. Still waiting to hear back from them but at least I got the meds and I'm ready for Monday.  That's when I go in and learn how to give myself the shot. 

If this all works as it's been explained... My provider will start accepting the Humira protection plan card JAN 1 2015. So starting next year I *should* get $700 off the price per month. So the first month will cost me $1,771. Next month will cost $1,771 BUT I hit my deductible at $2,500 so I'll only pay 20% of the remainder... so like $145? That would then mean the following month would be $465 but the Humira protection plan should cover that. Still a lot of money to spend right at the beginning of the year but at least we can manage this somehow.

REALLY hoping this financing all works the way it sounds! Oh... and that this drug actually works =P No garuntees on either!

Anyway... we've all shed more than a few tears figuring this all out. The blood recently is probably a reflection of my stress. I've been on the phone for hours every day for a week trying to figure this all out meanwhile still do my job and be productive at home. Nobody on the phone can give you a freak'n straight answer (except the Humira people, they are awesome, but they don't know the details of my provider). After all this... I think peoples opinion on "big pharma" should be re-evaluated! I'm so mad at my prescription drug provider! They are doing very little to really help me, the people on the phone are usually incompetent or borderline rude, I hate their strong-arm tactics to compel you to use THEIR pharmacy, and I get transferred no less than 3 times every time I call in and they all ask the same damn questions! My provider won't allow my local pharmacy to prescribe me 90 supplies of anything. If I want a 90 day supply I have to order through THEIR pharmacy. Ya know what? A) I want to support my local pharmacy and B) I won't order from them out of spite now =P

On the other hand... Humira has gone well out of their way to help people like me, I call in to a phone number and after 3 clicks I'm talking to a real person, they know WTF they are talking about, very professional, and actually help me!

I've looked into other drugs they wanted me to take too.  They are all this damn expensive, some more, some a little less, but none of them affordable. I've pursued a few of them and the 'discount' plans either don't take enough off to make it affordable or my damn provider wouldn't accept them. I never understood how people could ever choose between their prescriptions and their needs... I get it now... I totally see how that's a reality for many people. I had no idea how expensive this stuff is until I was faced with it.

Monday I take my first doses.  I start at a high dose then over the coming weeks I taper down to a maintenance dose.  This should get me into remission and then keep me there.  We're all praying this works.  I do intend to keep pursing some natural regiments to help promote good health and healing however I truly hope to get into remission and enjoy a more broad diet.  Most of all... I'm sick of being sick... and ready to rediscover what "normal" is again.  This December it will be a year of constant flare up symptoms.  

Kefir and Prednisone

Symptoms are getting stronger again.  If I had to guess it was a few days after dropping the dosage of the hydrocorisone suppositories from 2 a day to 1 a day... but it's just a guess.  It's funny... I was actually starting to feel better a couple weeks ago, I messaged my GI saying I was marginally better but not where I want to be, and then like the next day... bam... back to blood and urgency.  Msg'd her again and she prescribed prednisone again.  Starting at 40mg and tapering from there every week.  Hasn't gotten any better and in some ways worse.  Passed a lot of blood the last 2 days. 

I'm pretty excited to ferment my own kefir and try that.  You soak these 'kefir grains' in milk or water and let it ferment a day or three.  Then you drink it.  I know... sounds crazy right?  It's really not.  People have been fermenting food and drinks for centuries.  One I'm sure you've heard of and even ate is sour kraut. 

The 'grains' are actually microrganisims and their food which is just sugar and yeast.  It's not like an wheat or corn grain.  It's a little colony of probiotics.  When you ferment your kefir they multiply, feeding on the sugar in the liquid, breaking down compounds into more simple elements.  You're left with a super food packed full of live probiotics, amino acids, and other vital nutrients. 

I'm going to start with almond milk kefir.  I will try regular milk kefir soon though.  However I have to ferment it longer to make sure all the lactose is consumed.  See the bacteria feeds on the sugar, which in milk is the lactose, so if you let them fully mature they consume almost all of the lactose.  Even if you're lactose intolerant like myself you can drink milk kefir. 

Meeting with my GI again on Monday.  Yeah; the one I complained about last time.  I know she won't have anything I want to hear... just going to push the next class of drugs I can't afford; Remicade and Humira.