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.