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. 

Venting Rant on "Specialists"

Went last FRI to see a new GI at the same clinic. She came recommended by someone else suffering worse than I and this GI really helped her.  I dislike her as much as I like her.

The Good:  She explained some things better then any of the last 6 GI's I've seen.

Apparently my pancolitis (severe case of ulcerative colitis where the entire colon is afflicted) coupled with the fact that prednisone does not put me into remission means I have a very serious case. Since I'm not responding to full dose of sulfasalazine (3 pills 3 times daily) and that prednisone isn't putting me into remission she said Lialda and 6MP is pointless. I nearly lost it and tried my best to not blow up but asked why her colleagues were trying their best to get me to take them and she said "I don't want to argue about that..." fine... so what now?

Given how well I responded to cortisone suppositories last time she said she's seen several cases where treatment of the colon can go well but the rectum still remains inflamed and causing lots of symptoms. (In my research I found there's actually a name for this: Ulcerative Proctosis) In those cases she explained no pill is going to fix the rectum but the suppositories will. I'll be on full dose of sulfasalazine + suppositories for 2 weeks and see how that goes. We both feel there's a good shot at remission here. Failing that we'll add prednisone on top. 


Failing that...it's on to the next class of drugs:  immune suppressants.  Again... getting conflicting information... from the same person... if prednisone (an immune suppressant steroid) didn't work then why on earth would the other immune suppressants?    





The Bad: 
I expressed my frustration that her colleagues are saying one thing and she's saying another and we argued about it.  She kept pointing to her computer screen saying all the other doctors notes are right here and it's consistent with what she's saying.  Too bad that medical file doesn't have every conversation I've had with other GI's which is where the majority of this conflicting advice was given.  

Typical arrogance I get with most specialists (not just GIs) and she was a little rude about mentioning a couple times how much time we're spending on this visit.

I had written down about a dozen questions I wanted answers too.  This was because the last GI had been seeing there was really into hearing himself talk and by the time he shut up and let me get a word in I had forgotten most of my questions.  I handed her my list and asked if we could go over these.  She looked over it for no more than 10 seconds saying "No, No, Yes, No... ok well..." handed me back the questions then said "candida is an internet myth, I have candida, you have candida, everyone has it."  I explained "Yeah, we all have it... my question was about overgrowth?"  She blew it off again.  So I pressed on asking then about an imbalance of good bacteria, bad bacteria, and gut flora.  She at least admitted it MAY help some people with a less severe case but wasn't going to bother with that for my case.

Then I brought up one of my other questions about using a nicotine patch in conjunction with my pharmaceutical treatment.   She tried to play the usual card:  no scientific evidence or studies.  I explained that actually there were and I had read a couple of scientific studies saying the difference between placebo and nicotine use with conventional means was 40% higher.  She then went on to explain how this clinic was internationally recognized and that the medical board which oversees them doesn't recognize those results as they weren't good enough and that "...maybe I could find some other clinic that would practice off the cuff things like that but not here." 

For now I'm on her regiment and I do agree with it.  We both feel it has a good shot at getting me into remission.  The ulcerative proctosis was the first real breakthrough in a while.  That said I'm scheduled to see a GI at the U of M.  for an opinion outside of the clinic I have been going to.  After 10 months of this flare up I'm getting rather anxious for some relief. 

Everyone Has an Answer

I've seen quite a few gastroenterologist, done lots of my own research, and talked to many people in person as well as online.  If you take it all in... everything works and nothing works.  There are no straight, definitive, answers.  Many times what you hear or read directly conflicts with something else.  In fact you'll find cases where someone will contradict themselves!  You even get that from your doctors.  They will tell you diet doesn't matter, there's no science there, and nothing is proven.  Then in the same breath they will say to avoid "trigger foods" and offer up some vague dietary advice.  When you ask what are trigger foods and how to find them you'll get some answer like "it's different for everyone", "you just have to figure it out", or they list off a few like dairy, caffeine, and junk food. 

I'm not sure which is worse; having no answers or everyone having a different answer.  I'll break it down into a few main categories but within each are any number of variations or even blending of several categories. 

Pharmaceutical:  Prescription drugs employed via pills, intravenous, suppository, or enema.  From what I gather the progression is anti inflammatory drugs (ex. sulfasalazine), immune suppressants (ex. prednisone or 6MP), "biologicals" (ex. Remicade or Humira), and finally surgery. 

Nutraceutical:   High quality supplements in the form of pills and powders.  Examples would be Ultra InflamX 360 which is a meal replacement powder you mix up with water and Wellness Essentials which are packs of pills with vitamins, minerals, and amino acids. 

Dietary:  There's lots of diets out there.  These are focused around health, healing, and neutralizing symptoms.  Has nothing to do with loosing weight; not that kind of diet =P  Some examples are Autoimmune Paleo, Specific Carbohydrate (SCD), GAPS, Low FODMAP, and various offshoots or blending of these concepts.  I'm not listing Elimination Diet here as that's a technique not an actual diet. 

Health & Wellness:  Things like exercise, meditation, medical cannabis, etc. 

The only definitive thing I've figured out thus far is that the solution is different for everyone.  I haven't figured it out yet for myself. 


References:
Biological Therapy Drugs:  http://www.ccfa.org/resources/biologic-therapies.html
Drug Classifications:  http://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/basics/treatment/con-20043763
Nutraceuticals:  https://www.google.com/search?newwindow=1&biw=1280&bih=625&q=nutraceutical&oq=Nutricutical&gs_l=serp.1.0.0i10l10.418327.418327.0.420076.1.1.0.0.0.0.243.243.2-1.1.0....0...1c.1.55.serp..0.1.240.FU73eZN9M9w

Roadtrip During a Colitis Flare Up

A few weeks ago we went on a 12 day on the road.  My wife and I were both concerned about being confined to a vehicle for the better part of most days and finding food I could eat. It wasn't without stress around these things but overall it went very well.  Only a few close calls, no accidents, and finding food wasn't too difficult. 

Not being in a full flare helped a lot.  I'm not in remission but not in the worst of a flare. Would never attempt this a couple months ago when I was running to the bathroom 5 to 8 times a day.  Knowing when you may have to go soon helps a lot.  Sometimes it just hits you with out warning and you have to go... NOW.  However other times I can feel it coming.  Usually if I eat something... I have to go soon.  While this was somewhat helpful in predicting... it was frustrating everyone.  I found myself holding back on snacking, especially on the road, when everyone else could. 

Finding food was a bit of a challenge.  However making my own lunch as needed or packing one along was always an option.  It's tough on the road because fast food was out of the question.  The only fast food place I ate at once 9was KFC; their grilled chicken was OK. 

I eased up on my restrictions which helped as well.  My only regret were the spicy chicken wings at one restaurant =P  We shared an order as an appetizer.  The menu said it was "sweet and tangy"... it was spicy!  I ate 5 and regretted it that night and the next morning.  We stopped at a couple famous cupcake shops.  I ordered the gluten free one at a particular shop not thinking to ask about the other ingredients.  A couple bites into it I was like "oh this is amazing!  Wait... it's TOO good... it's full of dairy!"  I ended up eating half of it and honestly didn't have a bad reaction to it.  I've always been quite sensitive to dairy but for whatever reason this time was OK... thank God.   

Here's somethings that work:

• Bananas are easy to find.  Nearly every gas station has them.  Towns along the way have grocery stores, Super Wal-Mart, or Super Target.  Buy several and keep them handy.  They don't last long though.  Toss the peels at every stop or your whole vehicle smells like bananas =P
• Cold cuts are great.  They keep well in the cooler for days.  The fewer ingredients in them the better.  Again it's not hard to find a store with a deli, butcher, or just some in the meat section. 
• Mayonnaise is nice to have too for the sandwiches.  I use Kraft mayo made with olive oil.  Just keep it burred in ice. 
• Precooked carrots in snack baggies.  They didn't spoil and lasted over a week!  So packing precooked food is great. 
• Panera sourdough bread was a life saver.  My wife found out the starter they use breaks down the gluten.  I ate it a couple days before we left and on the whole trip.  No major side effects.  It's wonderful because it fills me up.  Only side effect is my mind feels a little foggy... like when I eat sugar.
• With that bread I could make sandwiches on the road and also bring them when we walked around DC.  So if we knew finding UC safe food was going to be a challenge I would pack a lunch and bring it along. 
• Listen to your body.  Any movement at all in your gut... speak up and say you'll have to go soon.  Start planing the next stop and locating the nearest bathroom.  Sometimes beggars can't be choosers; I had to use some pretty nasty ones.  However I'll take a close call in a gross bathroom over an accident!
• At restaurants don't be shy; ask what's in everything.  Sometimes the menu is lacking details or they use fancy culinary words.  A lot of restaurants have allergen guides; again just ask.  Most of the hotels we stayed at served breakfast.  A lot of times there were scrambled eggs.  I always had to ask if they had dairy because some did and some didn't.  Restaurant menu's lack details on ingredients or use unusual words.  A lot of times you can swap sides for steamed veggies even if they aren't on the menu... just ask!

Thank you to everyone who reads my blog.  It means a lot to me and I had no idea so many did.  Wish I had posted something sooner; I actually started this a couple days after getting back.  However summer is super busy.  As soon as we got home we had to remodel one of our daughter's bedrooms for her birthday, get ready for the birthday part, and we also have our entire entryway torn up as that's our current remodeling project.  

The Red Rollercoaster

Still trying to figure out what causes this but the blood comes and goes.  I've talked about it recently and it's still happening.  Again the blood was almost completely gone; rarely showing up.  This goes on for days and I start thinking "yeah, cool, I must be getting close to remission ... right?"

Then it comes roaring back for days.  Frequency and urgency ramp back up.  You can help but think "what did I do?"  Was it those few weak moments I had bites of food not on the diet?  Was it physical stress?  Mental or emotional stress?  Maybe this time it was because I became sick from something else; a lovely mid summer cold.

I ask people with the same condition and get a myriad of answers.  I ask doctors; one says "hmm, maybe it's because your were sick... or maybe the stress" and another says "must be your pills..." and talks about pills for 20 minutes. 

In this last case all three happened about the same time.  I was naughty and ate a couple of brownies over that weekend.  We were working hard on our house, I was up in the attic working in extreme heat, in a lot of physically stressful positions because you have to stand on the rafters not on the sheet rock.  Up there several hours both SAT and SUN putting in recessed lighting.  Then over the weekend I got a cold (having a runny nose with a dust mask on totally sucks BTW).  I hadn't soaked through clothes with sweat like that in... I can't even remember.

With my kidney disease I've known for years that when I get sick my kidneys bleed more, my urine gets dark, and when I get over being sick it all goes back to normal.  Now that I'm getting over the cold my urine is lightening up and the bloody stool is resending . Then again I doubled down on my resolve with my diet and its been a week since the physical stress.... so which was it?  What helped... if anything?

Nobody knows... and that's the most frustrating about this whole thing... nobody knows.  I pay over $200 per visit to ask the so called experts; the only definitive answers you get from this is to take magic pills I can't afford, cheap pills that crush your immune system, or cut your colon out.  I talk and read other peoples opinions on how to manage this and you get every answer imaginable.  Just started talking to a new doctor who's much more open to non-pharmacutical approaches but I haven't got anything definitive from him yet. 

For now I'm still riding the roller coaster.  Going to up my sulfasalazine and finish weening off of the prednisone.  I really want to try this new doctors regiment; it sounds interesting and I'm ready for a new approach.  If I were to draw a line from when I started this to now the overall trend would be in the right direction.  Improvement is measurable and evident... it's just the day to day ups and downs that make it hard to FEEL the improvement.  Truly is the proverbial two steps forward and one step back... still moving in the right direction just painfully slow.  

Welcome Back Chocolate; Oh How I Missed You!

Maybe this is just a cycle; I'm not sure... but I've been blood free for several days again.  I guess I'll see if it lasts this time or comes back.  As I've added more foods there's been a definite increase in gas which is somewhat annoying but way better than blood. 

Haven't been as strict with adding one thing at a time and observing for days before adding another.  We took this weekend off, kids are at their grandparents, and we've been eating out.  So this pretty much means you add things not on the list and more than one at a time.  To me the best thing to do is be picky in where you eat, look at the menu before you even go, and make the best decision with what's available.

Don't be shy and feel like you have to eat what's exactly on the menu.  If you're polite and explain you have special dietary needs I've found servers to be very accommodating.  Ask what options you have for replacing things.  So far I've been able to substitute standard sides (potatoes, bread, etc) with things I can have.  Usually steamed carrots but a few places couldn't do that however they had other veggies.  Salads I have to be sure to ask for no cheese and vinegar based dressing.

A couple of times now I've had gluten free bread or buns.  I know grains are not Paleo but it was totally worth it.  I forgot how filling bread was.  I'm not sure if it's the prednisone or just the stuff I'm eating but it's pretty rare that I feel "full".  I'm almost always hungry.  However when I hate those meals with the gluten free bread I actually felt full. 

Had dark chocolate with cranberries and almonds in it.... it was flip'n AMAZING.  Last week my wife found these chocolate dipped bananas and they are crazy awesome.  Welcome back chocolate... I missed you so... 

Oh I was at a friends house and they made coconut milk strawberry ice cream and it was outstanding too!

Blood Is Back...

Yesterday morning I had a lot of blood which was very disappointing.  Then a little more throughout the day.  I was doing so well the days before that.  I don't know if it was from foods or from stress.  Father's Day events on Sunday and Monday were anything but relaxing.  Just a whole lot of stress and work all weekend and Monday.  Also did not sleep well all weekend.

Going to dial back the diet to just the things I know work well for a few days.  Try to get some more sleep.   See how that goes I guess.

My wife found a great new recipe for Paleo Pancakes.  It's just bananas and eggs.  They are really awesome and I'm so glad she found them.  I was really tired and not in a good mood last night but after eating these I was in a much better mood.  They are not very filling so I ate a ton of them =)  Have some extras which I refrigerated.  Microwaved a few this morning and they reheat just fine. 

She went to a chiropractor yesterday to get her back put into place.  Interestingly enough they have another part of their clinic for Ulcerative Colitis.  They focus more on holistic and natural methods.  I'm going to setup a visit with them and see what they have to say. 

Significantly Less Blood!

Maybe I'm putting too much emphasis on the cranberries but since I've been eating them regularly I've had significantly less blood.  Only measurable amounts in the morning.  Throughout the day it's almost nothing; just trace amounts.  Discharge is still measurable but it's not so brown; used to be like brown ink.  Now it's more whitish / murky with a little mucus.  This has been going on for 2 days now; first time in weeks I've felt encouraged and satisfied by some noticeable improvement. 

After reading up on cranberries I really was excited to add them.  They have a history of being very beneficial for inflammation diseases like arthritis.  Seems like that would be a good thing for UC since it's worst symptoms is inflammation and all associated symptoms.  

I'm on the fence about zucchini.  Causes noticeably more gas.  Perphas I wasn't cooking it enough; I never did boil it like I was doing with carrots.  I was frying it in olive oil or with my scrambled eggs.  It was soft like it was cooked and I would fry it until it was soft and golden brown.  However it wasn't a huge deal, it's good for me, and a nice alternative but I won't be eating a lot of it like I was carrots. 

Strawberries have been a success.  No noticable side effects, taste great, and they are in season so lots of good sales on them!  Same with blueberries...sans the sales =P  Just have to be sure I'm not eating tons of them given the sugar content. 

Oh I have another desert I made; I call it a Smushi =)  Kinda like a smoothie... but you don't drink it.  Just mash a big banana with 4 or 5 strawberries and a cup blueberries.  Mix it up, put it in a freezable container, and toss it in the freezer.  Eat it later as a great snack or desert!  If it's frozen solid give it a few minutes to begin to thaw.  There's kind of a sweet spot where it softens up enough to dig a spoon in but is still frozen. 

I mixed one up with a big banana and half of an avocado with some strawberries.  I haven't tried it yet but I'm sure it will be awesome. 

Elimination Diet - 2014.06.13

Friday the 13th!  O_o

Yesterday I added cranberries because they are super awesome for you!  They aren't in season so I have to get frozen or dried.  Wasn't sure how I was going to eat frozen at work so I got 3/4 pound of dried ones.  Since they are a dried fruit I have to be prudent with how much I eat as it's easy to eat triple the amount I would if they were fresh.  Which means I'd eat triple the amount of sugar.  I think they are agreeing with me!  No big change in symptoms so I'll go with that and keep eating them today. 

I feel like I'm still trending in the right direction but I'm still impatient with progress.  Only went to the bathroom for real once yesterday.  I say for once because I had to go 2 other time but it was just gas & ishy stuff.  Which honestly isn't that bad; no blood really!  Just a little trace amounts once.  Just means I'll have a lot today though =P .  Already went once and feel like I have to go again. 

Tomorrow I'm down to 1 prednisone for 2 weeks.  Then a half for 2 weeks so I'm almost done; just 4 weeks to go.  I'm going to to back to see my GI.  I'm mostly displeased with the amount of blood I see daily.  I'm also obviously still all inflamed.  There's a weird way I can totally tell which is TMI so I wont share it. 

I'm sure you're thinking... TMI ?  "Dude you've been talking about your bloody poo for weeks; how could there possibly be more info you aren't sharing?"  I'll put it in as a comment so for those who don't really want to know can skip it =)  This is one of the wierd things about this disease.  You end up talking about poop a lot... like A LOT. 

Anyway; I'm off ... TTFN

Elimination Diet - Recap

Progress is slow but moving in the right direction.  Usually blood in the morning; more than trace amounts.  But during the day none to trace amounts.  Weight at 157.  Fatigue isn't as bad but still frequent.  I've been getting a little more sleep.  Still on prednisone; a couple weeks left. 

Here's what I'm eating right now:

1. Chicken
2. Turkey
3. Beef
4. Eggs
5. Carrots
6. Avocado
7. Strawberries
8. Bluebarries
9. Bananas

For spices I'm still using salt but I've added sea salt and tumeric.  I'm using olive oil for cooking and that's it.  The fruit have really filled in that sweet tooth craving; strawberries are in season and are amazing right now.  Blueberries are very sweet if ripe.  I have to be careful not to eat too much of them as they are packed with sugar.  

Today I'm going to add in zucchini.  It's pretty versatile and filling.  Sunflower butter is for off the list for good.  I tried it one more time and woke up in the night from abdominal cramping and pain. 

My taste buds have changed significantly.  I had a few moments of weakness over the weekend and ate a couple potato chips.  I used to LOVE chips; I ate some nearly every day.  They tasted gross... which made me a little sad but perhaps it's good because I'll crave them less.  I could feel the grease on them coat my tongue; almost like wax.  They just tasted... weird. 

Interesting stuff about sugar

I have a huge sweet tooth.  This is one of the most difficult things about this elimination diet.  I crave sugar, sweet tastes, chocolate, etc constantly.... all day long.  I was consuming stupid amounts of it intentionally and unintentionally (it's like sodium... it's in everything... added and natural and usually both).  The blueberries have really helped satisfy that urge.  Bananas too but not quite as satisfying. 

Did some more research on it and found some interesting things worth sharing


http://www.foodintolerances.org/fructose-food-table.aspx
This site is pretty easy to digest and quite interesting.  I especially like the chart showing food and their Fructose / Glucose / and F-G Ratio.


http://paleoleap.com/sugar-and-paleo/
This page gets down into the weeds of it.  A little harder to read but very informative.   After reading this page I really felt more informed and can more easily interpret other information out there about foods, their sugar content, and how to evaluate them.  This site also has some charts. 


http://www.reducetriglycerides.com/reader_triglycerides_low_fructose_fruit.htm
Then I stumbled upon this site because I was ultimately trying to figure out good fruits to eat.  These charts get very specific and break down by each individual form of sugar. 


Anyway.. interesting stuff... check it out!

IBD Paleo Reference Guide

I've been searching around for a more specific reference guide to not just the Paleo diet but one that's "UC safe".  Finally found one with the help of some good people over on the UC/Chrons FaceBook group. It's by Mickey Trescott who I don't know a lot about but she's a Nutritional Therapy Practitioner, published author about this topic, and has an autoimmune disease herself.  Sounds like she's also quite the chef and published a cook book.  Anyway I thought her reference sheets were the most comprehensive and specific I'd seen.  This is really helpful because there's so much Paleo diet info out there but it's largely vague and very little of it has been revised for UC. 

Reference Guide:

• Good:  http://autoimmune-paleo.com/AIPincludelist.pdf
• Bad:  http://autoimmune-paleo.com/AIPavoidlist.pdf

Elimination Diet - 2014.06.03 - Added Blueberries

Decided to add blueberries.  Eggs were a good choice as a new staple and it's been going well.  I REALLY wanted something sweet, more of a snack, yet still a good choice.  I think blueberries fit that bill.  Started eating them yesterday afternoon.  Had some more that evening and then this morning.  We'll see how it plays out. 

Elimination Diet - 2014-06-01 - Eggs!

Added scrambled eggs to my diet yesterday morning.  So far so good.  Still no real marked improvement I'd say over the last couple weeks.  However I'm not getting worse.  I guess that's something.  Still off the sunflower butter and still not sure if it was bad or good; not like I got noticeably better when I stopped eating it. 

Oh I also added ground turkey on the same day.  I know... I shouldn't add two things at once.  Didn't have much of a choice.  It was later in the evening, I was out of chicken, already at the store, and got turkey.  Can't be that much different.  Apparently not because again I haven't had any worse symptoms. 

I made them all up into burger patties.  Threw in an egg but that's it... patties are just ground turkey and an egg.  Fried half of them up in a little olive oil.  Froze the rest.  Pretty well set for meat this week now! 

Down to 2 prednisone a day now.  Over a month left but more than half done.  Not very impressed with the rate at which I'm healing.  I feel rather stuck here with mild symptoms.  I've been getting more sleep but still not enough; same with exercise.  Perhaps that's what's holding me back?  It's so hard because when everyone goes to sleep I can finally relax and I hate to 'waste' it sleeping.  I know it's not a waste but I don't really get to actively enjoy it either. 

Tomorrow I can add something else and I'm not sure what.  I'll share what I pick soon!