So, my friend, I'll call her "A.D." I've known her for about 30 years. She was diagnosed with Crohn's not long after I'd met her. She's been dealing with this for about 28 years, and I've seen how it's progressed. Fortunately, it was still at the beginning stages of when All Saint's took over, so the competitive drive for quality care still existed. Unfortunately, the good doctor she had retired & passed, and the next one moved to Texas. Since then, it's been a roller coaster...
Since then, she'd go years without seeing a GI doctor, first, the excuse was she doesn't need a colonoscopy until she is 50. Then she was diagnosed as having ulcerative colitis. Then supposedly normal, then both, then inconclusive, and IF it was in remission temporarily, she was considered "normal", just to show more severe symptoms. They can't seem to decide if A.D. has moderate Crohn's, mild, remission, ulcerative colitis, both, but neither makes no sense, since the symptoms have been going on for 27 years, and her mother had ulcerative colitis & maternal grandmother had Crohn's. Considering these are things that run in the family, it's ridiculous.
I'm inserting this link as an education link to Crohn's: https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/
And another link for ulcerative colitis: https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/
The most recent "regular" G.I. doctor is the one who talks in circles, so I come along, to try to make sense of it all, clarify with questions, and this guy keeps doing the runaround and wanted to say it's IBS. Sorry, as a person who had IBS due to a lactose issue, I guarantee this is NOT IBS. And for 27 years? And if so, why prescribe the meds that are good for Crohn's or colitis but bad for IBS? I also found this doctor to be arrogant, dismissive of questions, but then wants to schedule a colonoscopy to "see if she actually has it or not". I definitely got the feeling that he was only doing it to appease us. So, a couple days later, I bring her in for the procedure. We were told that her test was "normal" but he took 3 samples anyway. We were utterly confused as to why a biopsy was needed for "normal tissue" and he never followed up. He just wanted her to get a CT scan of her abdomen (didn't explain why) and his nurse told her that it makes no sense to do it if the scope was normal, so we didn't schedule that.
A couple of weeks later, A.D. ends up in the ER due to abdominal pain so severe she had mild chest pain that radiated into her left arm, and better safe than sorry, went in to ensure it wasn't a heart attack in progress. Fortunately, no heart issues (at least for the moment). They told her that her liver enzymes were elevated, referred her to a different G.I. doctor. We go in today, the nurse has nothing about the appointment with the other doctor, just 2 days prior to her colonoscopy, and got argumentative. I had to insist that yes, it happened, because I was there, and we made the colonoscopy appointment in person, at the office. The nurse had to actually leave the room, go to a different computer to actually see it. Then gets argumentative about the liver enzymes being normal - I had to ask why there were two different sets of information. She also started lecturing about how it's important to stay with one doctor. Okay... how do we go see a deceased doctor, or living in Wisconsin, a doctor in Texas? Then a Physician Assistant working with this doctor said they wouldn't do anything for her, and I told the nurse that as a patient, we ARE entitled to get a second opinion, in or out of this same network. She acted as if she were going to cry.
Anyway, I asked A.D. to bring up her e-chart on her phone, and voila. Here is the E.R. info showing elevated liver enzymes, the doctor's appointment just a couple days before the procedure, and another note from the previous doctor stating one thing, that was not on her chart at the office. This particular doctor got quiet, agreed it made no sense, and I mentioned that she cannot be treated correctly if there is incomplete or wrong/different information on their end. He nodded. I don't know if this doctor will actually help, but at least he heard us. This doctor said that the biopsy revealed collagenous colitis, which we never heard of. I guess it's also referred to as microscopic colitis. I'm going to have to read up some on this, so the next appointment (which he's saying only make if the symptoms get worse, prescribed a different med she's never been on before) and come back at an unspecified later date... Even if it's 2 months from now, I wish there was a follow-up.
But seriously... 28 years is a long time to be dealing with this, and it's enough to make one a bit nuts. I will continue to advocate for further resources, treatment options, support, etc.
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Another contact of mine has low estrogen levels. She came to Wisconsin from New England, left everything behind for a broken promise from other people who ended up abusing her instead, and she became homeless (though she does live on her bus which is converted to an RV) but with no permanent address, it's difficult. She is plugged into a neighbor's place, and I'm grateful. Other neighbors have stepped up with a little cash, cat food & litter, extra blankets, etc. and she comes over during the day to charge her phone, connect to the internet, make the appointments necessary to get through to the next month, as well as bathe, eat, do laundry, etc.
While I've only known her about a year & a half, she's been going through this for about 14 years, and since she's been here, hasn't been able to get the proper support to get the hormone therapy, support services, etc. and that affects being able to work, to get done what she needs to get done to move forward with short, mid & longterm goals. Even something simple as counseling is difficult and trying to find a PCP to make the referrals shouldn't be this difficult either. I'm doing what I can to provide a stable place, but, it's not easy for us, either, especially since it seems as if mental health & other social services she needs are nonexistent.
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I could go on to talk about mine, but I'm working on my healthcare story that needs its own book. so that's another entire post (or more). But seriously... even if you don't agree with people receiving Medicaid, the system shouldn't be set up to deny treatment to people just wanting to function in society, and if we were able to get "better", whatever that may be, maybe we could work enough to get private insurance to get out of the public hair, rather than to get further entangled into it. It's actually expensive to be poor, and getting more sickly by the month isn't helping, especially for those of us who always tried to be healthy.
