IC treatment plan

So I finished reading through two books on IC.  The Better Bladder Book & IC Naturally.  I took lots of notes & looked at what applied to me & came up with a treatment plan.  I'm sure I will make adjustments along the way & possibly add on some more things as I go, but this is where I'm at right now.

For some time now I've been taking silica & vitamin D each morning.  I originally was taking silica for hemorrhoids that I acquired during labor & delivery of my son.  I had healed them up in the past & then they came back once again.  But now I read that it's also good for the healing of the lining of the bladder, so I will continue taking it.  Vitamin D was also important in some aspect to the treatment of IC, although I can't remember exactly what it was, so I will continue that as well.  And I recently added d-mannose to that as well (I used to take d-mannose quite some time in the past, but had stopped) to help prevent UTIs.  I also recently added on l-glutamine to help with my leaky gut. 

I am also following an IC diet as well as a gluten free diet.  I cannot believe how much better I feel gluten free, in so many ways.  One of the greatest things: those hemorrhoids I mentioned?  They are totally healing up since I gave up gluten!!  And there's lots of other positives going on with cutting gluten out of my diet.  I used to always think those anti-gluten people were a little crazy & now I'm turning into one of them!! 

Ok, so as of now I am adding MSM & buffered vitamin C.  MSM is supposed to help rebuild the lining of the bladder & vitamin C helps the MSM do this.  I cannot tolerate the normal vitamin C, so I am praying that I can tolerate the buffered form. 

I am also adding on Calcium citrate & magnesium taurate.  I can't remember exactly why these were recommended, but I know it was something that applied to me & these were the specific forms listed--the citrate & taurate. 

And I am also adding on Bromelain & Serrapeptase.  These are digestive enzymes.  I found these very fascinating.  If you take them with a meal they will help you digest the food you are eating.  BUT if you take them on an empty stomach they will digest scar tissue in the bladder.  This will help in the healing process of the bladder.  So this is what I'm doing, taking it first thing in the morning, on an empty stomach.  I've never taken these before, so I'm actually going to start only the bromelain for a week & if I have no bad reactions I will then add on the serrapeptase & continue with the two of them together for about 2 years. I read that it usually takes a year to digest the scar tissue but in bad cases it can take up to 2 years.  So I'm planning to err on the safe side & do it for 2 years.  I'm praying I don't have a bad reaction to these & am able to carry out my plan.

I am also dipping my urine each morning with a pH strip & if it's acidic I drink water with baking soda or apple cider vinegar in it to help alkalize it.  And I'm keeping a journal of intake & output.  I find that when I'm writing down everything that goes into my mouth I stick to the IC diet much more strictly.  It's an unconcious thing I realized.  So I have deliberately experimented a few times & have had mixed results.  Sometimes I have pain & sometimes not.  Without looking at my journal I am able to recall that vinegar, Vitamin C is a problem, medium enchilada sauce is a problem, & green bell peppers are a problem.  At least I am able to see what does & does not bother me.  And I am praying that in time my bladder will be able to heal & I won't have to avoid so many foods. 

I have seen many people who go into complete remission or only have one or two things that they cannot eat/drink once the bladder heals, so I am hoping that is the case at some point.  At this point I am willing to do whatever it takes to remain pain free.  I know I saw someone online saying if they avoided gluten they could eat EVERYTHING else.  But if they consumed gluten they had to eliminate tons of things that are not allowed on the typical IC diet.  That person had said they would gladly eliminate ONE thing rather than a million others.  And while it appears difficult to avoid gluten, it does seem to get easier as you get more experience with it.  And I think I would have to agree, I would rather give up gluten & be able to eat everything else.  Especially when I'm learning that gluten free baking is actually really good.  I had gone into this thinking it was hopeless.  It's amazing how good it is & the fact that more people aren't aware of this fact.

And I still have to schedule an appointment with the urologist & get the results of the tests I had done.  I am assuming that if there was anything serious I would've already heard about it, but I will follow up for sure.  I am taking my time on this because I need my hubby to watch the toddler while I see the doctor & he's been really busy lately. 

I think that's all the updates I have for now..........

Turning the Table

So this morning I woke up feeling quite good.  I'm referring mostly to my frame of mind.  I feel like the Lord has given me a fighting spirit once again.  I have to admit I was feeling like my bladder issues were controlling my life.  And I was feeling mighty weary & tired & like giving up.  All I could see was the negative of it all.  Even in the fight I was focusing on the negatives, what I had to give up, what I could no longer do, etc.

But this morning I suddenly see that I have a choice.  I can allow my bladder to control my life or I can make an effort to control it instead.  I have turned the table & am ready for a good fight. 

I got myself some pH strips & am going to dip my urine each morning & aim to keep it slightly alkaline.  (For those who don't understand this, there are wounds in my bladder-assuming I do have interstitial cystitis-& acidic urine is the equivalent of pouring acid over an open wound--very painful indeed.)

I am once again keeping a food/voiding journal.  On the days I do have pain I can look back & see what I have eaten & drank & try to determine what I need to eliminate.  (I did this once in the past, when I was first diagnosed, about 2 years ago or so) 

I still also have to focus on healing my gut as well as my bladder.  A friend of mine has introduced me to the art of fermenting foods naturally with good probiotic bacteria.  I've been working on that & had my first serving last night (& again this morning).  They taste very acidic & I was worried they might hurt my bladder, but my friend says they are actually alkalinizing & I have no pain as of yet.  I am also really excited about giving these to my son since he has leaky gut & candida issues as well.  I also started taking l-glutamine.  It's an amino acid that is used to heal leaky guts. 

I'm still remaining gluten free.  I made myself a loaf of gluten free bread the other day.  I can actually live without bread  per se, but I wanted to start somewhere.  I will continue to explore from there.  But my hubby tasted it & even said it wasn't bad.  It does have a slightly different texture to it, but it really wasn't "bad".  Hopefully I can continue to do well in this regard.

As I sat & pondered this situation this morning I was reminded of a few years ago when a family member was very ill.  This is a person who refuses modern medicine & medications at all cost.  And yet he was in the hospital (for over a month I might add) & he was laying in the bed & actually requesting more morphine on a regular basis.  We were all terrified, thinking we were going to lose him forever.  But then suddenly he woke up it seemed & was ready to fight.  I don't know what happened to make the tables turn like that for him.  (I can't actually say that I know what did it for me this morning either) but we were so grateful to see it happen.  He made a choice to fight & control the situation instead of allowing the situation to control him.

This also makes me think of a book I read in the past about cancer treatment.  It was a whole bunch of alternative medicine doctors being interviewed for their thoughts on how to best treat cancer.  There was one doctor who insisted "you choose whatever you believe will cure you".  He believes that the biggest factor in the outcome is in your mind.  If you believe you will be healed then you will be & if you believe you're gonna die then you will.  I find that very fascinating & I think it's possibly true.  Although there might possibly be some cases that are just too far advanced for hope.  Or is there?  Is that only because the person believes it too far advanced?  I think often on this topic, it's very interesting to me.

Ok, I'm done rambling for now & I'm praying I continue in this frame of mind.  I'm hoping it's connected to the fermented foods I consumed last night.  :)

One Week Into The Gluten Free Life

So a week ago today I made the decision to go gluten free in an attempt to see if it's a contributing factor in my bladder issues (most likely IC, but having diagnostic tests done tomorrow to try to narrow down the possibilities). 

My hubby seems to strongly believe that this is NOT the problem & going gluten free is a waste of time (& money when it comes to buying new things that I need to survive this way of life).  I'm not sure WHY he feels that way, but he's mentioned it a few times now.

I have to admit that I don't strongly feel like this is definitely an answer to my problems.  But I'm so desperate for any improvement that I am willing to give this a try.  It's not gonna hurt me, so why not is the way I see it. 

My biggest issue is that I LOOOOOVE to bake.  Bread, cake, pie, cookie, you name it I bake it.  And I LOVE to bake it.  And of course I don't JUST bake, I also eat it too.  I am determined to try my best to bake decent gluten free items.  I know there are donuts that I sometimes buy at the health food that are gluten free & they are sooo good & I would never even know that they are gluten free if not for the huge label on the box.  So I think it's doable, I just have to learn how.  So that's a new project for me.  Especially since I HAVE to make a birthday cake for Jesus soon!!  Oh the pressure!!!  I'm sure I'll come up with something.  Worst case scenario I'll make a normal cake & just not eat any myself.

I am planning to do this for 3 months & see where I'm at then.  And then to possibly at that time reintroduce gluten into my diet & see how I do.  In 1 week I can report that I feel less bloated, especially in the abdominal area.  For the first time in I can't even remember how long I don't have that horrible feeling of pressure pushing on my very sensitive bladder, which is a very good thing.  And I do notice one other thing--for the first time in I can't remember how long I can urinate freely without any hesitancy.  That is a glorious thing. 

If I see any other changes in the next 3 months I will most likely post blog updates.  It's mostly just my way of keeping a record of things, so I can refer back to it later on.  I'm certainly not looking for pity or sympathy.  In fact that's why I've tried to keep quiet about this issue for so many years.  But in the past couple of years it has escalated to a point where I feel I can't really hide it anymore.  It's interfering with my life to a level that can't be hid now.  And then there are times where I could try to hide it & make excuses, but I worry I might offend someone by doing so.  Actually strike that, it has already occurred.  I have offended people already by trying to hide my health issue & they misinterpret the situation & are offended.  Now I could certainly just not care about offending people, not care what they think, but these are people I care about & don't want them to think that I don't care about them.  So I am now trying to offer honest explanations (in as brief a way as possible, I don't want pity or sympathy either as I think I said already).  I still feel a good deal of guilt for affecting those around me due to this.  And I still feel embarrassment & some shame, although I can't really pinpoint why when I analyze the situation.  I just wish I could wake up & realize this was all a bad dream & over with once & for all. 

High Power Blenders

For some time I have wanted a high power blender, but since my son was born I have REALLY wanted one.  It has gone from a want to a necessity, at least with MY son.  I am sure there are plenty of people out there with kids who never touch a blender ever & don't understand what I'm talking about.

Before he was born I was wanting to make home made formula for him (because I am unable to breast feed), but it didn't work out.  Had it worked out a blender was a must & the better quality the blender, the better quality the final product.  But once he was just over a year old I started making him all sorts of healthy drinks.  My son definitely prefers to DRINK his calories than to EAT them.  And I know a lot of people love pediasure, but my son can't tolerate cow dairy (which it is made out of) but I also just don't like those type of nutrition drinks that are sold (all of them, not just the pediasure).  I believe we can make drinks that are far more healthy than those created by scientists on our own with a blender. 

The base drink for my son has changed a few times, but it's always some sort of milk (goat, rice, almond, etc, he can't tolerate cow) & I blend it with fruits, veggies, & supplements typically.  Not to mention the rice & almond milks I also make in the blender.

As for WHICH blender I wanted, that was always undecided, up until very recently.  I had sort of assumed I should go with the VitaMix simply because it's the original & it's been around for so long.  I've seen people online saying they've had their VitaMix for 20+ years with NO issues at all.  That's pretty awesome!

Of course there's also the BlendTec & I've seen an infomercial with Montel Williams (I think that's his name??) & there's the new Ninja one that I "think" is a competitor, but I could be wrong about that.  Peronsally I don't trust infomercials much.  And I also don't trust really new stuff, like the Ninja.  So for me the issue simply comes down to the VitaMix & the BlendTec.  I should add that I've heard really good things about the NutriBullet, BUT it's much too small for my needs. 

So I was still leaning towards the VitaMix & I had told hubby I wanted it for Christmas.  Then one day we were at Costco & BlendTec was there, doing demos.  I told hubby to ask the guy why you should choose a BlendTec over the VitaMix.  The guy said he didn't want to & wasn't going to bash a competitor, but he did mention the fact that the BlendTec was designed to fit under most kitchen cabinets & the VitaMix doesn't. 

As for things I had learned on my own in the past: the VitaMix has TWO jars, a dry jar & a wet jar.  Being that my kitchen is VERY small & we don't have a lot of storage space I have to admit I don't like that idea much.  The VitaMix has a "stick" (I can't remember what it's called.....a dowel??) that some people love & some people hate.  The BlendTec has preset buttons for specific things (ice cream/frozen yogurt, ice crush/milkshake, soups/syrups/fondues, sauces/dips/dressings/batters, whole juice, smoothie), although you don't HAVE to use them.  The VitaMix doesn't have preset buttons.  The advantage to having them is when you want to recreate something or when you want to tell someone else in the house how to make something you made.  So I see it as a benefit in my household since I am not the ONLY person using the blender & I often want to recreate something I already made.  There is also the simple fact that the BlendTec is less expensive than the VitaMix.

But the final decision maker for me & my hubby?  We like to watch this show on TV called "how I made my millions"  It shows how wealthy people got started & how it went from there.  It's very interesting, at least to us.  And guess who was on there?  Right after we saw the BlendTec demo at Costco?  Yep, how the BlendTec guy got started & got wealthy.  So what was the bottom line?  The BlendTec guy (I can't remember his name, sorry) had invented a blender jar unlike any other.  He patented his jar & began production & just as he was about to roll them out for sales he discovered that VitaMix already had the exact same jar out there.  Of course he sued VitaMix for patent infringement & he won & VitaMix paid him a ton of money for that.  But simply the fact that VitaMix would blatantly steal his patented idea like that really made me lose respect for VitaMix & when I mentioned it to my hubby he said he felt the exact same way. 

So yes, we are the proud owners of a BlendTec.  And we LOVE it & couldn't be more pleased.  I LOVE that it can liquidy & "juice" veggies & fruits.  It blends the rice down so well for the rice milk that I'm actually getting more milk out of my rice milk batches & I am sure the milk is better nutritionally for that reason. 

Since buying it (it's my Christmas gift, but I opened it early, LOL, couldn't wait!) I have started each morning with a smoothie for myself.  Our last blener, a Cuisinart, could never blend small amounts of things well.  So I was never able to just blend for myself personally like I can now.  I put in a little almond milk, a handful of blueberries (one of the very few fruits my bladder can tolerate), a banana, a green (I was doing spinach, but now doing broccoli), flax seeds & chia seeds, & sometimes I also add protein powder.  It's super yummy! 

Ramblings on gluten, IC, etc.......

So I am reading a new book about Interstitial Cystitis.  It's "The Better Bladder Book" by Wendy Cohan, RN.  It presents a lot of theories on the causes (& thereby the treatment of) IC.  This book is recommended highly by the IC network.  When I was first diagnosed with IC I had gone looking for a book on treating it naturally & bought two books.  One on the IC diet & one on treating it naturally.  That book theorized that IC is caused by a toxic body.  This theory makes sense to me, but none of the treatment (detoxes, etc) got me any relief.  And then I noticed that this book is NOT recommended by the IC network.  So I'm not sure what to think about that anymore. 

Just a month or two ago I was doing more research online (I do this periodically, most of the time finding nothing new) & found two new theories on IC.  One was that a gluten allergy or intolerance can cause it.  The other was that a parasite, the Schistosoma parasite, can burrow into the bladder wall & cause it.

As I'm reading this book I see the gluten connection explained in detail.  It does mention that a gluten issue can go on undetected for a very long time.  And it does say that prolonged bed wetting as a child (which I definitely had) is usually a sign of a food allergy or intolerance.  The biggest part of the gluten connection is the fact that gluten very simply causes inflammation in our bodies.  And if that inflammation occurs in the bladder you can have IC.  During an IC flare the lining of the bladder is inflamed & irritated, so this does make sense.  It is becoming an accepted fact that inflammation in & of itself is the link to many health problems & that diet is the biggest factor of inflammation. 

My first thought is that I've NEVER in my life suspected a gluten issue for myself.  But at this point I'm desperate & willing to try just about anything (as long as it isn't HARMFUL) to see if I can live my life pain-free.  So as of last Tuesday I went gluten-free.  The interesting thing is that in 4 days I dropped 3 lbs.  I feel like I'm no longer bloated.  Prior to getting pregnant I had lost weight on the South Beach Diet & was weighing 128 lbs.  But as I look back at photos of that time period I have to admit I think I was a bit TOO thin.  So since having my son my goal weight has been 135 lbs.  But I just haven't been able to get there.  The absolute lowest I've been is 138 lbs, but most of the time I am 140.  I don't think I'm fat at 140, but I do always feel a tad bloated & I feel like if I could get down to 135 I wouldn't feel that way.  So I am now 137 & feeling good, feeling like I'm not bloated.  But I digress, none of this is about weight at all, I just thought that was interesting that I did nothing aside from giving up gluten & 3 lbs just magically disappeared.

This book I'm reading now says to give up gluten for 3-6 weeks & see if it's made a difference in your bladder symptoms.  BUT I know I was recently reading a book (The 4-A Epidemic) that stated gluten must be removed for a minimum of 3 months & then reintroduced to see if there are gluten issues.  Now the 4-A epidemic has NOTHING to do with the bladder or IC, I was reading it for health issues related to my son, but I still think I should probably follow the 3 month period to really see if there's a difference or not. 

Additionally, there is no question that I have gut issues.  All these antibiotics for my entire life has really taken it's toll on my gut.  And I know that I have increased gut permeability (a leaky gut) & systemic candida issues.  So I am wondering if my issue with gluten is simply that my gut permeability is not what it should be & gluten is leaking through & going where it shouldn't go & my body isn't liking that??  I am trying hard to heal the leaky gut, but it's near impossible when I have to keep on taking antibiotics.  It's like a vicious cycle that I just can't get out of.  If that's the case though, I have to wonder if I was able to heal my gut if I would then be able to tolerate gluten?  I would think so, but I see an awful lot of people online saying that they have to choose between gluten free or a typical IC diet FOREVER.  The IC diet eliminates a ton of stuff.  There are TONS of things that I can't eat or drink now because of this.  So what these people are saying is that once the bladder heals they can then eat EVERYTHING BUT gluten, or they can eat gluten & have to eliminate all the other bladder irritating stuff.  I do wonder if these people have leaky guts & if they do if they have tried to heal them?  I have always wished I could spend my life just doing all sorts of research on all sorts of things.  A lot of medical things, such as this.  I would love to send out surverys like this or interview everyone with IC & see what I find in regard to this sort of stuff.  I know that of all the people who say they have gluten issues & are gluten free only a small percentage actually have celiac sprue disease.  So I have to wonder if the others simply have leaky guts??

As for the parasite cause, it did seem plausible to me I have to admit.  And the parasite is usually carried & transmitted by snails & slugs.  I have to admit I kept snails as pets as a little girl.  And as a young adult we found we had slugs living in our drinking water & we aren't sure how long that was going on for before we discovered it.  So between those two situations I think that's a possibility.  BUT so far I'm not seeing much info on this link.  I don't know how credible this theory really is.  And I know if I ask my regular doctor she's just gonna think I'm nuts.  I will probably discuss it with the naturopathic doctor when I go there.  I know someone who had told me in the past he could get me any prescription med I want or need because of someone they know.  So I asked him for the first time about the med for getting rid of this parasite, but he said he wasn't able to get me that one. 

Another huge issue that definitely contributes (if not causes) is stress & tension.  When I get stressed or when I'm in pain my whole pelvic area tenses up & it's like a vicious cycle of tension.  So the pain can cause the tension, but then tension continues the pain.  Stress can also begin the tension & then the tension can cause pain.  As I reflect back on my life I have to admit that nursing school was a tremendous stressor in my life.  And marrying into a blended family has been an incredible source of stress for me.  My stepkids have never wanted to accept me no matter how hard I have tried.  And sure, I can just not care & be stress free, but then my poor hubby is caught in the middle of it all.  It's a complicated situation & no matter how hard I try I can't win & it is definitely taking a toll on my health.  I am trying hard to learn how to RELAX (having a toddler also makes it hard to relax) & I go to sleep at night listening to a guided relaxation recording.  When I was a kid growing up I always had a really hard time sleeping.  When I was about 12 or 13 my mother had guided relaxation tapes for some reason (she never listened to them) & I started using them & they REALLY helped me fall asleep.  I don't know where those tapes ended up, but I never knew what they were called so I never knew how to get more.  As I started googling & searching I found that they are called "guided relaxation or guided imagery". 

I guess that's all the rambling I have for now.........