What's the Pain Like?

I have had several people ask about the pain.  Oh, the pain! :)  This could be long...

Just a little history... most people with Crohn's Disease have a diseased colon, which causes chronic issues with needing to go to the bathroom which leads to malabsorption, weight loss, and lots of pain and fatigue.  I am in a very rare group of patients that has a beautifully healthy colon.  (Blessing #42) My doctors are always impressed!  Unfortunately, what makes me even more rare is that my stomach is affected.  I didn't know this until I went to Mayo Clinic last year, but I have the most severe form of Crohn's Disease BECAUSE it affects my stomach.   Most of the research involves the colon and small intestine, which means most of the drugs for Crohn's target the more distal portions of the GI tract.  This is why all the medications I have taken in the past have not worked for me and why I need a medication like Humira that is more systemic.  My issues lie in the front side of eating.  The inflammation in my stomach is so severe that my stomach is completely swollen shut, thus I have difficulty with my food getting down and often coming back out.:(

When I was in the hospital this month, and I had to go for the eternal scope, they anticipated the food retention from what I told them about my history.  They put me completely under, as opposed to the regular "loopy" so they could put a special tube in to remove food from my stomach.  At that point, I hadn't had ANYTHING more than chicken broth in 8 days and they spent 4 1/2 hours removing food from my stomach with a grabber contraption.  The in and out of the equipment, of course, is what tore up my throat and caused secondary bleeding and trauma.  Eight days of opportunity for that food to pass and it never did.  That is something a normal person does in a matter of hours.

As a drug rep, my sister was in training for a new GI drug.  The instructors told the reps that people with GI disease can feel their food at any stage from top to bottom.  Wynne said everyone was in disbelief when she raised her hand and said, "It's true!  My sister knows where her food is at all times."  They couldn't believe it.  To think of what a miracle it is to have a healthy body and NOT know those feelings.  I think "my Crohn's people" won't mind me speaking for them, but while you are counting your blessings think of even the small ones:)  My favorite GI in the world who took the utmost of care of me told me that when his Crohn's patients talk, he listens intently. He went on to say that people with Crohn's were the most aware of their bodies of any patient he had because of our ability to know and describe multiple feelings in our guts.  I am sure this is a dream to a GI doctor, as a normal person doesn't have those feelings.  Now, if there was a way to make money with those feelings...

The feelings I have are not one, but many.  To start, when I eat something solid, I feel it enter my stomach, as it passes the end of my esophagus.  That is because I have a hiatal hernia from all the inflammation in my stomach. Throughout the day, I can feel my food rumbling around in my stomach, which apparently stays there for weeks.  With that feeling, I get reflux and burning, sometimes vomiting.  I get bloated, which causes discomfort and pain in my stomach.  Your stomach retrains itself to accommodate its food.  Of late, I haven't been vomiting as much because it just got so used to having so much food in my stomach...which isn't good.  I was at risk for aspirating the food into my lungs and even bigger problems.

If the food ever moved out of my stomach, that was really where the intense pain began.  Since I have had 2 reconstructive surgeries of my stomach already, I have an extra exit hole in my stomach that was made to alleviate the pain from my God-made hole.  Now, I have not one, but two blocked exits.  When the stomach is trying to do its job and push food out the door (peristalsis for the medically inclined), it pushes and pushes and hurts and hurts as the food just can't all squeeze through the tiny space that is there, which equals lots of pain.  Then, it gets worse when you drink liquids on top of that.  The weight of the liquids push harder on the food that can't move through and that begins the sleepless nights.  There's no chance for lying down and even if sitting up, there's little chance for sleep with the chronic pain and discomfort.  Many, MANY times I have dozed off in the bathtub at 2am, as the buoyancy of the water allows some relief in the pain.  When my body gets over-tired, my stomach starts to hurt as well.  So, then I am exhausted, wanting to sleep, but can't and the vicious cycle continues.

From my stomach thru my small intestine there are multiple strictured areas throughout.  Every time food tries to pass one of those strictures it causes a great amount of pain, just as it does when it exits the stomach.  When the food gets stopped and doesn't pass, it causes a lot of gas to build up and it gets trapped...absolutely excruciating.  That was actually one indication to me that I needed to go to the hospital when I did.  I could feel the gas bubbles, I could see the bloating and I couldn't burp.  I knew that meant my stomach was swollen shut and there was no release.  Pain, oh the pain.

On top of the strictures I have multiple ulcers.  To see them in the pictures, they are like little scabs in my stomach and small intestine...and the source of my blood loss over the past 2 years.  I can't be certain, but in the last two years I have had to get 4-6 pints of blood, multiple iron infusions, and more recently weekly B-12 shots.  All because those little sores are "weeping"...like a scab that won't heal.  And in that weeping, I am losing blood, which caused my blood levels to actually plummet to dangerously low levels.  (Another story, but we discovered that when the very different and unexplained pain in my abdomen was so excruciating I took myself to the ER down the street at 3am and literally collapsed at the front desk.  They scooped me up, took one look at my blood tests and loaded me in an ambulance to admit me to the hospital for a blood transfusion.)

If you have an ulcer, you know the pain that can cause.  An ulcer alone causes indigestion, nausea, burning, and bloating to name a few.  Food hurts it, not having food hurts it.  An ulcer is never happy.  To have multiple ulcers only increases that pain and I firmly believe the gas in my stomach only intensifies the pain of an ulcer.  It's like your stomach is a balloon with a scab on it and when you blow the balloon bigger it just stretches that sore and breaks the scab, causes it to bleed and hurts like the dickens.

I just hate reading back over this and divulging all the pain I endure, but there are so many different kinds of pain.  I think it even helps for my husband to see the differentiation.  It's not like it's just a tummy ache.  "No, honey, it's not pain #34, it's pain #52."  I struggle SO MUCH with being patient while I am in the midst of the pain.  My husband desperately wants to help and understand, but when I am in a moment, it's very hard to make it a teaching moment for him.  In that moment, I am usually just trying not to pass out and breathe in and out, in and out.  Over the past month, all that pain has come all at once, at such great intensity, that my sanity started to slip.  I couldn't think straight, I couldn't find my words, I couldn't function.  Chronic pain will change you.  It has changed me.  

For the first time in my life, I understand first hand the glorious promises of being renewed in Heaven.  I dream of my earthly body being made perfect and without pain.  I know the deepest desires to be pain free and to be whole again.  It's a concept I always knew and could regurgitate (no pun intended :)) , but now I FEEL it and I know it with intimacy.

Our bodies are buried in brokenness, but they will be raised in glory. They are buried in weakness, but they will be raised in strength. I Corinthians 15:43

It has now been a month since this all began.  I think it was October 2nd that I went to the ER that began this journey.  I have received so many messages about friends and family members who struggle with various GI illnesses.  I hate it for every single one of them and it breaks my heart that GI issues are becoming the norm instead of the exception.  I started this little blog to support anyone going through any sort of illness, especially GI-related disease.  However, maybe this little post will help those people that LOVE someone who is going through anything of the sort.  I know how hard it is for my husband to see me in pain.  I know he wants to fix me instantly and he can't.  I know it is incredibly frustrating for us both.  I hope he never EVER fully understands what I am going through because I wouldn't wish it on anyone.

That said, because of who I am in Christ I know that God will use every ounce of this for His purposes, and for His will.  I know that suffering does not come from the Lord, but He will turn my lemons into some tasty lemonade!

And we know that in all things God works for the good of those who love him, who^[a] have been called according to his purpose. Romans 8:28

And I do love lemonade...