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Monday, June 25, 2012

Part 2: Crohnies

A comment was left elsewhere regarding an interest in hearing more about Issac and I's Crohn's.I had not intended to go there yet but maybe a sidetracking of things will work out in the end.

Issac and I both have Crohn's that is easy enough to say but it's not really enough of an explanation.Crohn's can be located anyplace between your esophagus and your anus.The body's autoimmune system is confused when you have Crohn's,it decides that a section along your digestive track is a germ or foreign invader and attacks it.Crohn's can also cause inflammation through out the body,this inflammation is kind like the "side effects" of having Crohn's.My doctor once told me that you could wall paper a small room with a list of these.Because Crohn's is an autoimmune disease it ends up doing some wacky things,like the big black goose bump looking things I had on my shins in high school.Charming when you are 17 and wanting to fit in with your school mates. 

At this point in time there is no known or proven cure for Crohn's Disease.Some people say they have done it with diet but there is no solid proof of that.There are plenty of meds to control the disease some of them are dang scary,like the chemo Issac was on. Flare ups (that's when your disease is active) can happen on or off of drugs,there can be weeks,months or even years in between them.Both Issac and I are currently in what is called Surgical Remission, remission brought on through surgery.I have been off of drugs for 5 years now,not common and a mystery to my doctor.Issac has been off his meds for a year now.Is it luck or our diet?No one knows.

Ok,this is how I look at Crohn's,why it is hard to pin point and why it is different for each person.You have a deck of cards that is called Crohn's,each time that deck is dealt out it is first shuffled giving different results each time.Each person with Crohn's body is already unique through it's genes, life events or even the environment it lives in these things in my mind are part of how the Crohn's will present it's self.Yes,you have these set symptoms that make up the Crohn's but they get shuffled each time making it hard to make that winning prediction of this is the cure.Maybe that is a crazy crock of who knows what,sometimes I know something but getting it out in a nutshell is weird.  

Here Issac and I are, two Crohnies with the same disease located at the same spots in our bodies,right at the terminal ileum. That's right near your appendix,from the point of your right hip bone turn about an inch to the left.But that is where the sameness stops for us.

Issac has the kind of Crohn's that will burst his intestine and is the most unpredictable and very dangerous.When Issac's Crohn's is active it turns his intestine into tissue thinness and as of yet we don't have any idea what his warning symptoms are.Four years ago when Issac's bowel ruptured we had no warning other than he was in great pain,his bowel had already burst when we got to the E.R.

A lack of warning is common,some people are lucky and their bodies send warnings like weight loss,pain,no bowel movement or too many.Those black goose eggs I had in high school,those were one of my warning signs but the doctors were not paying attention,also common.

My Crohn's is the kind that causes my intestine to slowly swell shut.Leading to nothing passing and then I am in pain.If I am lucky and it is caught before it is completely shut the doctors can medicate me to open things back up but twice I have had surgery to remove parts of my small intestine because it was too damaged. I don't always get any warning a flare up is happening.In high school I lived through one for a year and a half with no idea what was going on other than if I ate anything my gut would kill me.Half a sandwich had the feeling of a 10 course meal in my stomach. The doctors just would not believe I was sick,they thought I  just wanted to skip school.Ha! Me the nerdy geek with straight A's. I ended up in the E.R and stayed in the hospital for 2 months under going 3 surgeries. But since then if I am having a flare up I just go from zero to the E.R.No time to prepare or prevent.

It all sounds scary doesn't it? And it can be if you let it be.That sounds a bit glib.Don't get me wrong here,I have panic attacks at times that I have to stop and check myself over.I  know my routine,I know what to predict,what the questions will be in the E.R and how it all should go.There's an odd comfort in that but it can still really,really suck.Having a disease that people can't see is like it does not exist,that I am just wanting to get out of living life somehow.People can be very quick to judge you.

 As a Mother there is nothing more horrid to hear the doctor tell you and your son that he has Crohn's too.It was a whirlwind flash of a moment,I could feel all the pain I had been through,all of the social awkward things that had happened and the wishes to be dead came flying into my Mother's heart.I was ready to melt into a sobbing puddle on the floor right then and there,my heart was shattered.

But my son is an amazing person,he turned to me and said "It's ok Mama,you have learned to live with it and so will I." What blind faith and courage. Ah man,how could I fall apart,here was this kid ready to take this on and I was going to have to lead the way.Pull up your boots Mama there's work to be done.

So now I am really at the beginning of my blog,how could we make a positive change in our health,we would grow it ourselves that's how.I had known that food impacted my health for a long time just not exactly how but how was I going to get my young teen son on the bandwagon with me was the bigger question.And how was I going to get the whole family in on this? (Chance and I try our best to make sure Sol does not feel like the Crohn's factor in our house overrides his needs and wants.Parenting is an act of balancing between your children,keeping things seemingly fair and equal but when one is sick for a long time that juggle gets harder.)

Sometimes when I think of the how and why we started to Urban Homestead I feel like we were giving the "system" the bird.There is no medical proof that changing your diet will cure our Crohn's but I am going to try anyway,or at least prolong the inevitable.That's kind of giving the doctors the bird,I am putting trust into myself,I got this handled if I need you I will call.You can keep your nightmarish drugs,please pass me some organic veggies instead.Homesteading is a bit radical in some circles,we are not buying into the big food systems and we are not buying into the lies about crappy food being safe.

From here on out the rest of my series will be about the positive changes we have seen over the past three years.Writing this post was hard to do,I am kind of superstitious about talking too much about the Crohn's,don't want to jinx things.I have also faced tons of negative judgement,been through trauma that has left me with panic attacks and pain of body and heart,as a fairly private person I would rather remain silent.


1 comment:

  1. You are very brave to write about this. I understand those superstitious feelings. It is really hard for me to write abiutnmyndauter's health problems. Life is a fragile business, that is for sure. And a hope yu homesteading does you all nothing but good.