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.