First Week

The first week home and out of the hospital wasn't good.  It was so discouraging to admit it, but ultimately, I was in the same place I was before I went into the ER 2 weeks ago.  When I left the hospital, the plan was to wait for my blood work to return and follow-up with the GI in a week to get my new medication started.  So, for a week, I was at home waiting.  And, in the mean time, struggling to keep my pain under control while dosing up on steroids to help temporarily relieve the chronic inflammation from my stomach through my small intestines.

Needless to say, we were very much looking forward to my GI appointment yesterday in Houston.  I anticipated receiving positive results from my blood work and getting my referral to Home Health so we can get this show on the road and get all this pain to disappear.

Babe and I left the house at noon to give us extra time to park.  My appointment was at 2pm, but they asked us to come by 1:30pm to fill out paperwork.  We were right on time.  And there we sat...and sat....and sat.  Let me be clear, between Babe and I, I am the patient one every time.  But, now, I am on Prednisone and it makes me irritable, short, and overstimulated.  I am well-aware. {Please take note so if I am snappy, you will forgive me:)}  We finally were taken back to our room, where we sat some more.  My GI, whom I think is a very good doctor, was in and out so fast, we felt pretty sure that this "Clinic" is not his forte.  (We had visions of Dr. House being forced into clinic duty.) He is a researcher, a very smart man and patient-care is not where his heart is.  He asked ME which drug I wanted to take, and what I wanted to do, but so much so that I felt like I had just treated myself...and I am no doctor.  And he was gone.  We waited and waited some more for the nurse to come in.  Evidently, I needed a few more vaccinations, so I received the first round of those.

I wanted to be weaning off my Prednisone, because I don't like the way it makes me feel.  The doctor, in his brief moments, said I could, but didn't tell me how.  When I asked the nurse, she said, "Are you sure you feel back to normal?"  Of course I didn't.  She told me NOT to come off the steroids.  As much as I want to, I agree with her, as the steroids are the only thing allowing me to eat any food at all.

As for getting on the Humira, she initiated my Home Health visit which she said could take up to a week...or TWO!  UGH!  They have to get it pre-certified with my insurance company (which will, of course change with Babe's new job in November) before they can call to make the appointment to send the nurse to my home.  

In our discussion with the nurse, Babe commented how busy they must be.  The nurse admitted that because they were so busy yesterday, that the doctors didn't know there were more patients around the corner...in additional rooms, despite being told.  Information, we really didn't want to know, that we had been sitting in that room while his other patients were being seen and we were forgotten.  When we walked out of the room, the entire office (which was huge) was shut down, not a soul in the waiting room, and the gates were already pulled so we were locked IN the office!  It was after 5pm....which translates to rush-hour traffic if you are headed ANYWHERE in the city of Houston.  We left our house at noon and returned home by 7pm for one fairly unproductive doctors appointment.

I feel better getting all that out.  So very frustrating, but still feel so grateful to at least be able to manage my pain and even have ONE option to help me feel better.  We are blessed.

Home

{Re-Posted from my Personal Blog}

It took a little bit longer than expected, but I made it home by 9pm on Thursday night.  I was exhausted just by the short ride back to The Woods, but beyond excited to be tucking my little toots into their beds once again.

Unfortunately, the pain that disappeared while at the hospital returned almost immediately.  Although my bed was like Heaven, I wasn't able to sleep and here I am at 3am on the couch tonight...Ugh. I e-mailed my doctor just now hoping to get an idea for what I can do.  I have an appointment with him next Wednesday, but cannot make it until then like this.  Amazingly enough, I was able to sleep almost all day. Not sure why. I hate taking too many drugs and am fearful, with my ulcers, that I don't have many options...

The quote I saw on Pinterest this week keeps repeating in my head:  "Until God opens another door, keep praising Him in the hallway."  And that is what I shall do. Thank you for all the prayers and encouragement.  We will beat this!

October 9th

{Re-posted from my Family Blog}

October 9th   is how it should read.  So sorry to those of you who think October 9th is special.  It was a rough day here.  I went downstairs thinking I would have a quick 30 minute scope so the doctors could see what they were working with.  As it turned out, I went out right before 11am and woke up at 4pm vomiting blood.  (Sorry!)  It was a scary moment for me, as I was woozy, but knew I had been out for much longer than anticipated and I have never thrown up blood before.  They put me completely under via intubation tube because they needed to put a large tube inside of tube down my throat...a total of 3 tubes with the intubation.  They anticipated the need to remove the food that was stuck in my stomach and needed to do that without my aspirating into my lungs.  Thus, the tube inside of a tube.  They said that took a majority of their time.  They were also trying to place an NG tube below my stomach for nutrition, but every time they attempted to remove the scope, it removed the NG tube, thus "traumatizing" as they so perfectly described my throat and nose...causing part of the bleeding.  They also dilated 3 different parts of my stomach and small intestine that appeared to be restricted/ completely occluded.  That is a temporary fix until the steroids kick in.  And the steroids are a temporary fix until I start my meds next week. I woke up in an incredible amount of pain...in my hips.  I was in a bad position for 5 hours and am still limping today.  No one seems to care about that part...

We concluded that it was time to take the drugs...the drugs that I originally had a great amount of fear for.  I still have fear of the side effects, but there is as much or greater risk in surgery and removing more parts of my stomach and still not solving the problem.  I am BEYOND thrilled to not be having surgery.  I am still fragile, still on paid meds and will be on steroids until I start my new, lifetime Crohn's medication.  But, I get to go home and snuggle with my 4 boys.

I have been covered in prayer from the beginning of this and never thought that God's answer would be NO surgery.  To have full abdominal surgery (which I have had twice before) is miserable to say the least, especially when your body is so sick.  The recovery is long and very painful and still brings me to tears at the thought of going through that again AND with kids and a husband.  I am still a bit in awe that I  won't miss the things I was disappointed to miss, but also well-aware that I still need to stay on the down low until I get all my drugs working and hopefully back to optimum health.

Again, in AWE of God's ability to take care of me...one single child of God.  And certainly stand before all of my friends in the greatest of appreciation for all you have done for Babe and my kids and for every sweet message and prayer that you said for me.  I could say it a million times, but even the smallest of words is SO encouraging when you are in the trenches and I have saved every one of them!

SO....I am going home today!  It seems a bit to believe, as I am still getting TPN and I still have a central line to remove, but they said I can go home...carefully.  The care I have received here has been stellar.  From the kindness of the nurses to the attentiveness of the doctors...all the doctors, residents, and med students involved in my care.  Even the wonderful surgeon who ultimately worked himself out of a job.  I am SO grateful for his desire to exhaust all possibilities.

First stop...a SHOWER!!

Thank You!!

{Re-posted from my Family Blog}

So...I am in the hospital.  The history is HERE.  I went to the ER last Tuesday morning having been in pain for 4 straight days, unable to sleep.  I couldn't take it anymore.  From there, I was released to the care of my GI, who referred me to a surgeon in The Woodlands, who referred me to a gastric surgeon in Houston, who admitted me to the hospital for testing this morning.

I haven't eaten food since last Monday night.  I wasn't all that hungry this week and thus not thirsty, which has put me in a dehydrated predicament.  I have a new GI who has ordered a scope tomorrow morning and we will make some tough decisions from there.

When I am in the hospital, I am worrying about home.  I am wondering if JBS is reading his 20 minutes and remembering to write it in his log.  I am wondering if JLS will remember to put his library book in his backpack and if Babe is putting enough fruit in their lunch boxes for tomorrows lunch.  The reason mother's are often considered control freaks is because we CONTROL everything.  Probably not by choice, but by the nature of the job of being a mom!  I anticipated having to stay today and I took care of everyone except myself, who needed to pack a bag to spend the night in the hospital.  I made lists of who does what  and when and discovered HOW MANY things we do in a day are NOT things that are written on the calendar.  Taking medicine, book logs, library books, required computer work, flash cards, and the list goes on.

So...I do worry more about home than I do about me.  It's my nature.  I am so incredibly grateful for my mom who swooped in to take care of us and for Babe, who is off work for the rest of the month.  What a God send!  I have been brought to tears at least a dozen times this week, not about my possible surgery, but about the love and support and kind words that have all come our way.  The words...they mean SO much more to the receiver than I think the givers ever realize.  Support is so AMAZING when you are in the trenches.  And, for me, when I am in the trenches, I unfortunately bring my family thru the trenches with me.

Babe, Mom and the boys came to visit me tonight at the hospital.  I don't have any unsightly tubes yet and I am still coherent so we thought it was a good opportunity for the boys to see that I am OK.  When they returned home, I got an excited call from JBS and I could hear JLS in the background saying, "Cool!"  Why?  Because my amazing neighbors left the sweetest bag of treats for the boys on our porch.  I know it was nothing to them, but HUGE to me.  The boys are SO excited to have a nice surprise on our porch all for them.  It is great to know their minds are not on me and on that bag of snacks...from Trader Joe's no less!  Thank you SO MUCH sweet neighbors.  You know who you are!

Of course, it doesn't take much to get their mind of Mommy in the hospital when food is involved...

Surgery

Ugh.  The last few months have been a challenge for me health-wise, but the last 5 days, it all came to a head.  I haven't slept since Thursday night, as the pain in my stomach has been so great.  I can't lay down, and if I have any chance of catching a wink, I am sitting up to sleep.  It's a bummer.

I have had a known Crohn's ulcer in my stomach for five years that continues to get worse.  In fact, when I went to Mayo Clinic last year, I was told that I had the most severe form of Crohns because it IS in my stomach.  I can't remove my stomach...My disease is all proximal which means my colon is beautifully healthy. (Blessing #1)  My problems arise when I eat because if my stomach is swollen shut, my food can't go down.  It is excrutiatingly painful and so frustrating to have to worry about my health and be a mom and wife and business owner...all three are my favorite things to be!

Yesterday morning, I finally couldn't take the pain anymore and took myself to the ER.  We are so blessed that in this time, my husband is between jobs and is home for four more weeks before his new job starts.  (Blessing #2) Thru tests, we discovered what I already knew...my stomach is completely obstructed and the ulcer I have is very ugly, large, and bleeding.  I count it as Blessing #3 that my ER doctor, whom I didn't know, turns out to have a daughter in my son's kindergarten class.  My neighbor is also and ER doctor at that hospital and called ahead to tell him about me  (hopefully good things :) and not that I am his looney neighbor).  Because of this relationship, he offered that I get to go home from the hospital if I felt comfortable and if I went straight to see my GI doctor.  Of course, I wanted to get the heck out of here and home to my family.  I did, indeed, go to my GI doctor and stated the obvious:  It is time for surgery.  I have put it off and put it off and I, too, albeit an awful time, am ready to get rid of the ulcer and give my weary stomach some relief.  It is the reason I have needed multiple blood transfusions, regular iron transfusions and probably my latest weekly B-12 shots.  It is also the source of an enormous amount of pain that often leaves me breathless and useless for hours at a time.  It sucks to tell you the truth.

All that said, I still firmly believe that God is in control and we works all things together for good.  The amount of people who have come to me to talk about their bowels are many and I know that I have grown immensely as I pray desperately for healing.  We all have hardships, we all struggle in many ways...this just happens to be my struggle and I choose to accept it and hopefully use it to help others and build my trust in the Lord.

My mom flew down yesterday the minute they knew I was taking myself to the hospital (Blessing #4).  I absolutely hate that my family and my husbands family put their lives on hold so often all because of me and my poor health.  I am so grateful to them, but hate so much being a burden to those around me. We have already had so many friends rally around us and support us with offers of dinners and help with the kids.  I cry as I type at how blessed I feel and how lucky I am to have such amazing friends who love us and want to help us.  (Blessing #5)  It is really beyond words...

I, unfortunately, have had to temporarily close my business, Tippie Toads, which makes me really sad. But I am hoping that my wonderful fans and customers will stick with me through these hard times and greet me on the other HEALTHIER side :)  So, I leave you with getting all my ducks in a row.  Making eternal lists for Babe (my hubs) so he can attempt to operate smoothly with 3 boys...homework,  library books due, allergy shots, carpool.  The list of all the unspoken things that moms do on a daily basis.

We have so much love and support and we are so grateful.  I will attempt to keep this blog posted on the road to healing and recovery!

Butter

Fresh Butter after squeezing it through the cheese cloth

I made 2 new friends this week :)  I actually made quite a few new friends this week heading up crafts at our church's VBS week.  However, these 2 special girls found me, by the grace of God, and we very quickly discovered that they, too, were both fighting GI disease.  It's no fun, but it's not often that I find 2 cute girls to sit around and talk about poop. :)  It made it so clear to me that this little blog is here for a reason, started from a stirring in my heart in the midst of a Beth Moore Bible Study, to share my story and hopefully help those fighting similar diseases.  They were full of questions that I was more than happy to share my experiences and everything I have learned in the last few years about diet and healing.  They prompted me to share some things on My Intestine-mony that I hadn't thought to share.

Today, it's B-U-T-T-E-R!  Yummo!  One major lesson I have learned in my healing process is to NEVER eat "Light" or "Sugar-free."  Nothing that is light or sugar-free is natural and it usually has bad additives, like fake sugars.  For me, fake sugars are worse than plain sugar.  My body revolts against them.  So, when it comes to butter you need to eat the REAL DEAL; not margarine, not butter that you can't believe, REAL BUTTER. Organic real butter, of course.  Real butter is made from milk that your body knows how to digest and it does a body good.

I heard someone once say that milk from the grocery store is basically Antibiotic & Hormone Soup.  Since then, I have not been able to stomach it for me or for my children.  I am fortunate enough to have my fabulous Yonder Way Farm that delivers fresh raw milk to me every two weeks.  I was nervous about it.  One day at pick up, I watched a man load 8 gallons of milk into his truck saying that the butter from the milk was the best butter he ever had.  Now THAT got me curious!  Now, it is a routine.  I order 2 gallons of raw milk from each delivery and use it to make homemade butter.

What you need:
1-2 gallons of raw milk
Mixer (unless you prefer to churn :))
cheese cloth
plastic wrap
Butter form (optional)

My grandmother's butter form

Making butter is NOT rocket science.  When you buy organic at the store, it is still great for you, but it only makes sense that there are preservatives in it....it has to have a shelf life!  Making it at home, is like making dessert and its a breeze.  As soon as I get home with my two gallons of milk, I pour them into 2 big bowls.  I let the cream rise for 24-48 hours.  The longer the better.  Then, with a measuring cup, I carefully scoop the cream off the top of the milk in the two bowls.  Get as much as you can, but if you get a little milk, it won't be bad.  It will eventually separate out.

At that point, I put the cream in my mixer on medium-high and mix it!  Add nothing at all....it takes anywhere from 20-30 minutes.  While it mixes, I use my funnel and poor the milk back in the saved jugs (that remained in the fridge so they didn't sour) and I freeze a gallon.  YES!  You can freeze milk until you need it.

The cream will thicken up to whipped cream...PLEASE take bite.  It is a piece of Heaven!  Then, the yellow in the butter will start to come out and the milk will start to separate and it will get sloshy if there's too much milk.  When it appears that the butter is stuck to the beaters for the most part and the milk is in the bottom of the bowl, it's time to stop.  Pour the milk out and drop the butter onto a piece of cheese cloth.  Squeeze the cheese cloth enough to squeeze out the extra milk, but not so much to squeeze the butter through.

At this point, I wrap the ball of butter in plastic wrap and put it in my butter form. (It was my grandmothers.)  Then I gently push the butter with the form and make a stick of butter that has no additives and is LOADED with probiotics!  Not to mention, it tastes out of this world!

Inside the form...

The finished product!

This butter is heavenly and if I choose to "cheat" a little, I smear it on my very favorite, Vinta crackers.  My eyes roll to the back of my head and I dream a little...for just a moment.  There is no butter that tastes as good as homemade butter...and it couldn't be easier!

I Survived

Last week, I started having more intense pain again in my stomach...ulcer kind of pain.  On top of that, I felt that it might be bleeding again.  UGH!  I was so frustrated, yet so determined to nip this cycle in the bud.

The fantastic thing about having a hematologist, if there is an up side, is that the lab in the office is open anytime and patients arrive with or without appointments.  So, I high-tailed it to the office, where the nurses are so kind and had my blood taken.  My mother-in-law was in town {she has the good blood} and I was fully prepared to have to ask her, yet again, to donate for me.  I hate it.  I hate that both my husband and my mother-in-law tell me that they don't donate because they never know when I will need their blood.  I am so grateful to have matches so close to me, but isn't there someone out there that might need it more than me?

I anxiously awaited their call on Thursday to tell me that my iron was low and I needed a transfusion.  I dreaded it.  I partially willed the call not to come.  I am just SO tired of being stuck and poked.  Again, SO grateful that I can get better because of the sticks and pokes, but just so tired of taking time away from my kids to have to go to the hospital.  I am still praying for that miraculous healing.  I WANT to be that crazy on the corner yelling, "I've been healed!"  :)

The call came.  However, it wasn't my iron that was low, but my B-12.  In the history of my fight with Crohn's I have never had low B-12.  That is a very common symptom of Crohn's Disease and have been asked about my B-12 by every new doctor I see.  But, I have never had a deficiency...until now.  The great nurses told me they would call it in...as if I knew what I was doing.  I  haphazardly asked if they were shots.  Why yes!  The syringes and vials will come together she said.  I interrupted before she ever finished.  "You mean I have to give it to myself?  Or do I come to you?"  She explained that she could do it, but they would have to charge me.  And that I would need to get this shot every week for quite some time.  I have endured lots of things, shots even.  But giving myself a shot is a whole new ballgame for me.  It was around 4pm on Friday and she said I had to have it today.  So, I raced to Walgreens to pick up my shots and raced straight to the open arms of my hematology nurses.  She went slow, but changed the needle (because hers were smaller), and did this and that and squeezed my tummy and it didn't even hurt.  I thought I could possibly handle it myself the next week.

So, here I am!  The next week arrived, I laid everything out in front of me and prayed that I wouldn't kill myself by pushing air bubbles into a vein.  Hard to do in a pooch on your tummy, but still!  My hubs was sitting next to me practically looking the other way saying, "Do you want me to do it?"  I said, "Yes" and he never moved and inch.  So, I "primed" (new lingo) my needle and pinched my tummy and pushed it in.  I felt it.  BUT, it wasn't so bad.

So far, I am still alive.  That speaks volumes to me!  And, my husband still hasn't moved from his position on the couch.  He does feel good in his heart, though, that he really did OFFER to help....whether he meant it or not.