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.