Colonic Inertia. What is it???

Colonic inertia is when the colon does not work properly to propell fecal matter through it due to a lack of motility....

Here are my favorite links that explain what Colonic Inertia is:

http://www.constipation-remedies-for-all.com/colonic-inertia.html

http://www.youtube.com/watch?v=CSjA4ceg0m0&feature=player_embedded

http://www.aboutgimotility.org/

http://www.med.unc.edu/

When doctors don't know what to do next...

I'm at the end of my rope. Feeling desperate, screaming for help, searching for a treatment. NOTHING is helping and DOCTORS DONT KNOW WHAT TO DO!!!!

Just finished meeting with my doctor where he said he does not know what more he can do for me.  We discussed my motility disorder (I have had almost all studies done that can be done on my GI and the only one that i failed was the sitz marker study.)

We have tried miralax, stimulant laxatives, amitiza, reglan, and others nothing is helping. On miralax I am currently taking over 15 doses per day and nothing.  It just sits in my colon and collects there for weeks. 

My doc proceded to tell me that there is noting else out there we can try!! WHAT? NOTHING?...There has to be SOMETHING TO TRY!!!

He said to continue trying to use miralax and stimulant laxatives.He stated that he is a Miralax guy and that is his favorite thing to treat intractible constipation. But I'm left thinking "what if that doesnt work and makes be bloat even more and makes me super nautious????"

He said to just live with the pain, bloating, nausia, vomiting and my toxic colon.  How can i live with a huge distended belly and look like im preggo and ready to pop!  How do I live with the pain of not having a BM for 3+ weeks. How do I live if I'm constantly natious and vomiting when I try to eat.  Besides that he has had me on such a large dose of Miralax that every waking seccond im having to force the stuff down and it dosent even help!!! Also i have to take at least 8 stimulant laxatives for them to do anything and they make me horribly sick for days.

I have been praying over this a lot lately.  I have recently gaind back the strength I need to fight for myslef. This is not the quality of life I want, especially when i know in my heart that this is not the life I'm ment to live.  This is meerly a bump in my road.  

Do I go back to the colorectal suergon that performed anorectal and pelvic floor testing (which i passed with flying colors) to see if she has a more aggressive approach, medications or other treatments. Do i go to a different GI?  At least we have a real diagnosis so we can move forward with a real treatment. I want a full and happy life. 

Amitiza, could it be my miracle...?

I have been on amizita for three weeks. So far I'm more bloated then before but no movement yet. I will keep at it because I have tried everything else. I was very woozy with my first dose but I was also pretty dehydrated and did not eat anything with it. Today is going better and I feel just fine after taking it. I'm hoping and praying that this works. Miralax doesn't work anymore, gi had me on an entire bottle daily, plus 5 ducolax a day and that just was not working at all!!! I feel so hopeless and frankly a bit lost in life.

Small Bowel Study

Lucky me...I just had a small bowel study done.  Before the test started I was already looking so very pregnant. People at the hospital would open doors for me thinking i was about to have a baby....not what i needed to happen, i started to cry......This test was HORRIBLE... I had to drink so much barium liquid and I was nautious before I started drinking.  I would drink a little, then sit with the barf bag in my lap and my face pushed into the bag waiting for it to all come back up, then drink some more, hold the barf bag up to my face and wait for it to get better...it never did. But I just forced myself to drink it through the nausea. 

Once I had gotten it all down my abdomen became even more distended and my belly button began to pop out.  There was so much in my abdomen that it became hard to breathe and super painful.

Then they had me up and walking the halls in the gown and special socks.  Luckally the gowns can wrap around me twice because I was freezing walking the hallways. They had me take xrays at the start and then every 20 minutes to watch the barium go through my stomach and small intestine.  They noted the time to see if my stomach was slow to empty but luckaly my tummy did it's job in the correct amount of time.  Once the barium reached the end of the small intestine a doctore cam in with a special instrument that was like a paddle with a seethrough center, he pushed, poked and prodded on different areas of my abdomen to get xrays of all the main structural pieces of my small intestine.  This was so very painful but did not last long. 

Test showed a normal, healthy stomach and small bowel with a normal transit time. 

MIRALAX....I HATE YOU

Wouldn't it be wonderful if what the doctors prescribed actually worked for me... I'm praying...

My GI told me to take 10 to 15 capfuls (each capful is 17grams) of MiraLax per day, every day!!! So far 14 doses a day and no BM!!! Most people only take one capful per day.  All it does is sit in my colon and build up there causing me to become even more distended and more nauseous. 

This won't cut it, we need a different solution. 

My angel

Intuitive and Healing Pets...My own angel!

 

He has truely been my Angel, he spends as much time as he can near me, on me, sleeping with his head on my cheek. He looks me in the eyes and love on my face and I feel him saying "I love you more than anything". It's so unconditional, pure, and without any expectations. He acts this way mainly towards me, he loves my husband but not like he does with me. (can I say i like it that way? haha) He came in my life right when I was starting to get sick and has stayed literally by my side every day and supported me through the hardest of times, through the pain and misery. 

Colonoscopy and Endoscopy

Went in for yet ANOTHER colonoscopy and endoscopy... What horrible tests, well the worst part for me was the "clean out".  It took over 4 colon preps for me to get any movement in my colon and did not even have a "need to go" moment.  I was worried that the prep would not work so I started "cleaning out" a few days before. I am on a mostly liquid diet and still unable to eat much if at all. 

The first thing I remember after the tests, even before my eyes could open was that I was crying and in so much pain!! My belly was sore and i had extreme pain throughout. 

Right after waking up my bottom was in intense pain as well and i figured it would just go away (maybe my bum was a little irritated).  A week or so went by and the pain got so much worse...called the GI doc and his nurse informed me that I most likely have an anal fissure caused by the colonoscopy....um... excuse me? You guys caused this??? Now I usually dont get mad easily but when my bum is in so much pain all the time and they caused it...i got mad. Dr. prescribed rectiv (nitroglycerin based gel) 4%. Took four days to get it prescribed (Dr. is "busy"). That made me super frustrated. Every time we have a question or concern and we call it usually takes about a week before we get any answer from the Dr's. nurse.  But we figured out the direct number to the nurse and now we always get an answer and a much quicker answer.  Just don't call them every day and bug them they don't like it!  But, to get an appointment with the Dr. you have to wait at least 4 months.
Anyways, I put the prescribed dose on and immediately got sick with a HORRIBLE head ache, it was so bad I passed out and ended up sleeping for 6 hours straight and missing a full day of work. Husband called the doctor and come to find out they can't make the 1% cream anymore for some legal reason, so they had to prescribe the 4% cream.  What's even worse is I was told to use an INCH of the 4% when you only should use a small pea sized amount of the 1%. No wonder I got sick. Not only was i using like 10 times too much medicine but for my extremely low weight it made things worse.... call me crazy (sarcastically) but I feel like this whole thing could have been prevented if the GI Dr. was not so rough on my bum in the first place. 

Structurally everything looked good.  NO abnormalities.  And not any closer to answers.  AAAHHHH!

What's been going on with me

Where this story starts…

I was admitted to the ER with severe upper right abdominal pain, fever and chills with nausea and vomiting. Classic symptoms of gallbladder disease. 

In the ER I underwent testing for suspected gallbladder disease as I also responded with the “Murphy’s sign” during my abdominal exam. 

Next I underwent testing. I completed a chest/abdominal X-ray and an ultrasound. Both the X-ray and the ultrasound were unremarkable and the decision was made to move forward with a HIDA scan. 

The HIDA scan revealed a low gallbladder ejection fraction which indicated chronic cholecystitis. I have been dealing with intermittent pain in this area for about the last year which my physician determined to be biliary colic. Previously the pain has been manageable with OTC painkillers and rest.  This was the first instance of severe symptoms. 

My medical team determined that the best course of action would be to remove my gallbladder. I was given anti nausea medication and IV fluids and met with surgeon. We scheduled my surgery for the following morning and I was sent home to rest. 

Leading up to surgery went like clockwork (arriving at the hospital, check in and prep) until my surgery was pushed back almost 6 hours. I don't even remember being wheeled into the OR, they gave me an injection in the read room to help me relax because I was super nervous!!   

After surgery the first thing I rember is waking up in extreme pain and crying for help. The nurses where really good to me and i could hear them on the phone to the seurgon saying things like, should she be in this much pain etc. The seurgon perscribed higher doses of pain meds. But at this point I could not open my eyes. Then the shaking began, my body was acting like i was having a seisure, it was shaking so violently that i could hear the metal portion of the bed banging against the wall behind me. My jaw was chattering like i was super cold but i was not. Next i remember the head nurse coming over and yelling at someone to get this girl a room, she's going to be here for a while. Then i was out.

I woke up again finally in a room, hours had passed since hearing the nurse ask for a room for me. I was suposed to go home the same day as my surgery. Up in my room the shaking and chattering teeth persisted and I was shaking so very violently. My husband addressed the shaking with the nurses and they said it sometimes happens from a reaction to the anesthesia. But then pain set in, pain much different from the gallbladder pain and/or the incision pain. It was strong and stabbing at times and in other ares it was diffuse. I could feel "air" trapped in my belly.  Finally i got to sleep after the nurses called the seurgon for stronger pain meds. 

In the morning i was given another round of pain meds and sent home.  I dont really remember leaving the hospital I just remember the crazy old man the wheeled me to the care.  Then waking up at home screaming in pain the next day.

My stomach had swollen up to the size of a beach volleyball, we called the seurgon and he said it should go away and that it was trapped co2 from the surgery. Another day passed and i was getting bigger and unable to eat, anything i drank or ate would come right back up.  Nothing was coming out the other end either...  Went in to see the seurgon and the first thing he said when he saw my tummy was "Oh my god! Your tummy is huge!" Like i already didn't know this, ha ha. I was sent for xrays which showed an ileus.

I had a paralytic ileus...

From mayoclinic.com:

"Paralytic ileus can cause signs and symptoms of intestinal obstruction, but doesn't involve a physical blockage. In paralytic ileus, muscle or nerve problems disrupt the normal coordinated muscle contractions of the intestines, slowing or stopping the movement of food and fluid through the digestive system.

 

Paralytic ileus can affect any part of the intestine. Causes can include: abdominal surgery, pelvic surgery, infection, certain medications, including pain medications that affect muscles and nerves, muscle and nerve disorders, such as parkinson's disease."

Docs switched my pain meds from narcotics to a non narcotic nasal spray to help controll the extreeme pain I was in, in case the pain meds were the cause.

The trapped air was in my small and large intestines and stayed there for almost a month. I was trying to eat but only could get down small amounts and still vomiting. Now every time I would eat or drink my stomach would sweel up and then would go down a little after a long period of not eating (usually night time). The pain was still bad. Very constipated and was perscribed miralax, i worked up to taking almost one whole bottle a day...and it didn't help. Going BM less than once every 2 weeks. Nausea and vomiting and horrible, weight loss continued down.

I was sent for every test imaginable..

Origionally GI doctor thought gastroparesis and so did I because of the symptoms.  Now we are leading towards a functional bowel disorder because the only test that has come back abnormal is the sitzmarker study. 


My GI doc has been great and has been diligent in trying to find answers! Sick of all the normal test results and no improvement in symptoms, at my last appointment my GI told me that this may be my new normal, something i would just have to deal with.  Infuriating!!!

Right now thanks to a liquid meal replacement called Orgain I have gained some of the weight back. I get intense cravings for food, I eat and then my body gets mad and I end up vomiting. I'm so tired of this "life".  My life is pain, work, sleep and repeat.

Lets get some answers...I still have some fight in me!!! I'm going to keep on smiling! I just keep remembering that I want people to see and feel God's grace through me.

 Matthew 5:16

"let your light so shine before men,

that they may see your good works,

and glorify your Father in heaven."

Being your own advocate

I have had over 20 tests already and we still have no answers.  My doctors really don't know what to do with me and its frustrating.  I have learned that you have to keep on pushing the doctors, asking questions, and doing your own research.  My GI has been great so far but he has no idea what is actually going on inside me.  So I keep pushing him.  I know this pain and bloating in NOT NORMAL, so I'm going to keep on fighting.