IBD, Hysto, Frustration

It's December!  I want to say, how did we get here?  Wasn't it just April?  I feel as if I just blinked and the months have gone by.  And, by the same token, I feel as if I had been sidelined yet again while life passed me by and I could do nothing but watch.

When Moxie (my stoma) entered my life and half my guts left, that was supposed to mean the end of at least half my pain, the abdominal pain.  It didn't end.   I had the colectomy in March of 2013 and in the summer of 2013 started trying understand why I was still having low pain.  No, it wasn't a urinary tract infection.

I think I was tested for every kind of infection a woman can have including several that I would probably have gotten divorced had the result been positive.  Once again, tests leave you feeling violated and humiliated.  An ultrasound.  That doesn't sound bad.  Yeah, until you get in the room and discover how and what.

So after being subjected to tests that rob you of any dignity with IBD, when having to do them at a GYN looking for a problem it was NOT any easier or any more dignified.  And you know what?  The pain was the same.  I don't know how I would have known the difference between the two abdominal pains.  In fact, I wasn't sure that I did know the difference except that I kept a calendar and charted pain.  One pain made the other pain worse.  I already had the ileostomy so there are less guts to be inflamed for me.

Once again, I started reading and researching and found this is not an uncommon issue for women.  Cysts, endometriosis, heavy bleeding and painful periods are very common for women with IBD.  So why do our doctors not work together and ask us these questions?

Why must we go from one to another and search for answers?  Why do specialists stand alone like they are on islands miles apart in the ocean rather than being linked together like the paper chain around Christmas trees?  Why do we call or go in and report a symptom, only to be told, "you will have to see another doctor for that."    And once you already have a chronic illness or condition, then the doctors get even more complicated.

I want simple!  I want easy!  I don't want anyone else to have to go from their GYN to another higher risk GYN only to find out that if surgery is necessary, another doctor will needed, another office, another wait, more forms, more history (yeah this electronic stuff is not that good).

I want the doctor's we need to be like a mall.  They just refer you right next door and you get in next week, your paperwork is already there.  No filling out all new forms.  No bouncing back to the first doctor, you just go on to next one you need until they get it right.  Maybe we could save some time and energy in our healing.

In September, I had a total hysterectomy.  Because I have an ileostomy, I had a complex pelvic/oncology gynocologist treat me.  It took from April, 2012 to September, 2013, five doctors and me telling the doctors that something was wrong, I was having pain.

I'm healed from the surgery and I would like to say that I am pain free.  However, I still have arthritis, I may have another IBD surgery in my future and it's insurance open enrollment.  That's causing me pain at the moment.

Frustrated.  That one word describes how I am feeling with doctors, insurance, pharma, hospitals, and even the big "foundations" that are supposed to help us all.  Do you feel it, too?  There are so many individuals that have worked hard in grassroots efforts to reduce the stigma associated with our diseases and conditions and yet the big people, the ones with the real power don't seem to be hearing.  How do we change it?