I’ve missed you all terribly. I apologize that my posts and blogging participation has been erratic this year. As you know, I had surgery then complications following the surgery. Here’s what I’m dealing with (and I apologize in advance if it’s too long… I’ll try to keep it brief.):
Throughout 2015 – I vomited five or more times a week, my hair was falling out, my tongue was coated all the time, I was exhausted and freezing all the time, my vision was blurry much of the time, and I generally felt like crap.
Late 2015/Early 2016 – I started undergoing every test imaginable to man. This included numerous bloodwork, barium swallow studies, an endoscopy, a colonoscopy, a large and small bowel study with barium, multiple x-rays, several ultrasounds, and probably some more stuff I’m forgetting right now. I was diagnosed with low iron anemia and low B-12 anemia, so I had to start taking supplements twice a day – Not surprising considering how often I vomited and how few foods I could actually eat in the first place. (The really sucky thing was, with all the puking I was doing ALL YEAR, I only lost 10 pounds!)
The truth is, I was convinced I had either esophageal or stomach cancer. Cancer runs rampant in my family, and I’ve personally already had cervical pre-cancer twice, so I was prepared for it. In fact, at one point, I felt my life ebbing, and knew I didn’t have much longer. I started getting things in order to prepare for the worst.
Late January 2016 – I was diagnosed with an extremely diseased gall bladder, and was still waiting on results for most of the other tests.
February 2016 – My gall bladder was removed, and I felt SO much better — better than I had in YEARS! I mean seriously, I had actually forgotten how it felt to feel that great! For the following two weeks, I ate food I hadn’t tasted in months or even years because it had always given me a negative effect in the past. WOW! This was amazing! I didn’t throw up anymore. My hair stopped falling out. My vision was perfect. I had energy. Life was wonderful! (If you didn’t read about it already, I detail it more here: https://rachelcarrera.wordpress.com/2016/02/15/things-are-looking-up/)
1 Week Post Surgery – All my other tests came back, and while I had some stuff show up, nothing especially egregious was noted. Since I was feeling so much better, the doctor said it was likely that everything I had experienced was due to how incredibly diseased and infected my gall bladder was. Only then did he confirm that was indeed at death’s door before my surgery. He said at best I was only days away from it having ruptured had it stayed in. He told me I could discontinued the iron and B-12 supplements because my body should be getting back in order. What great news that I didn’t have cancer!
2 Weeks Post Surgery – Something went horribly wrong! I puked black sludge and some hard objects that I hadn’t eaten and were never identified. I had an x-ray that showed a “mystery object” inside me. And excuse the language, but I felt like complete shit! I mean I seriously never felt worse in my life! (I documented that horror here: https://rachelcarrera.wordpress.com/2016/02/25/things-are-looking-down/)
I appreciate all of you who encouraged me to get myself to the emergency room stat, and that’s exactly what I did. (Though, the $1,000 E.R. co-pay hurt almost as bad as my belly did!)
You can see the “mystery object” above the hip bone.
The hospital gave me a CAT scan, and the “mystery object” showed up again, though it had moved. However, the E.R. doctor didn’t seem concerned, and he told me I was probably only having pain from a tiny hernia that was likely caused either by my surgery or by my level of activity following my surgery. He sent me home with some mild narcotics and told me to take a few days to rest.
(I was highly peeved. This didn’t feel like $1,000 worth of treatment! Of course I felt much worse a few days later when I received a bill for an additional $500 because apparently my insurance has a separate copay for imaging!)
Early March 2016 – I had a doctor friend of mine write me a script for another x-ray at a different facility, and the “mystery object” was still there, but it had moved. This was 12 days after the original x-ray. He told me it could be a calcified gallstone that dropped during surgery and was floating around in my peritoneal cavity. Great.
Twelve days later, the “mystery object” is now close to my spine.
Mid-March 2016 – I saw a doctor at a different facility. For some reason, he got stuck on the part about the small hernia, and didn’t hear anything else I said. I was back to vomiting almost daily and sometimes twice a day, my hair started falling out again, my vision was blurry again, I was exhausted all the time again as well as freezing, and to add to my misery, now not only was I every bit as sick as before my surgery, but there was a thing in me, and after the awful black sludge and hard things vomit, I was terrified to get sick!
This doctor x-rayed only my lower abdomen and said the object was gone. Actually, the x-ray tech tried to tell me that I must have – now get this – swallowed buckshot, and it had passed! Yes, really! When I told her I don’t eat meat, other than the occasional fishsticks or tuna sandwich, she then tried to tell me I must have swallowed a metal button! (The fact that I own nothing with metal buttons notwithstanding.) The fact that they didn’t x-ray the entire peritoneal cavity made me wonder if the object really did pass, or if it’s still floating around in there.
Early April 2016 – Things were really getting old for me as well as others around me. In fact one “friend” told me to “get over it and move on already.” (Thanks.) My “quality of life” (What quality of life?) was non-existent. I saw a new surgeon referred to me by the Mid-March doctor. He ordered an MRI (with another $500 copay!) and suggested that if my bile duct still had infected gallstones in it, that could be the reason for all of my misery. I was hopeful. He also offered to operate on the hernia. I declined.
Mid –April 2016 – I got the results back from the MRI. It seems the bile duct was fine. Furthermore, they failed to look at any other section of my abdomen for that “mystery object.” At this point (and with no offense to anyone who has battled cancer), I almost wish cancer would have been my diagnosis – at least then, they’d know what was wrong with me, and I could have hope for treatment.
Late April 2016 – I went back to the original facility that did the surgery and saw a GP there. I told him my symptoms are: daily vomiting, hair loss, exhaustion, coldness, coated tongue, pale face, pain in abdomen, blurry vision, and general malaise. Plus I fear there could be a thing floating around in my peritoneal cavity. He told me, and I quote, “No, that’s too much. Pick your top three symptoms, and we’ll try to deal with those.” Yes, really! So I chose vomiting, hair loss, and blurred vision. He then decided exhaustion needed to trump hair loss, and told me to see an eye doctor for my vision, and he said I didn’t need any more x-rays to see of the mystery object was still present, and that it was a “ridiculous request.” He then ran another thyroid panel, as well as a CBC, and checked my iron. Later that week, he claimed all the bloodwork came back fine.
So… I started taking the iron and B-12 supplements twice daily again despite the bloodwork being fine, and guess what? My vision is back to normal, I am still really tired, though not as much, and my hair loss is still more than normal, though not nearly as bad as it was.
However, I still vomit at least five times a week, and sometimes twice in a day. Anxiety courses through me every time someone asks, “What’s for dinner?” I now judge and select food not by how it tastes going in, but by how it might taste coming back up. I still have constant pain in my gut. I often puke so violently, it causes nosebleeds. And I have tiny broken blood vessels all over my face from throwing up.
As far as the “mystery object,” maybe it’s still floating around in there somewhere. If so, from what I’ve read, I can expect it to eventually puncture an organ or cause an abscess, and I guess at that point, someone will remove it. Or, maybe it really did get in my digestive tract and pass. If that’s the case, I have to think it’s more of whatever the hard things were I puked with the black sludge. As a few medical friends have said, it could only be metal or an extremely calcified stone to show up the way it did in the x-rays. I have to wonder if something happened during surgery for stones to slip into my belly somehow, though that seems unlikely.
I don’t know. But what I do know is, I feel miserable, and no medical professional that I’ve seen seems to care. Many of my “friends” make jokes about having me committed because I’m “crazy” and “it’s all in my head.” And that gets old, too.
Anyway, I know I promised to try to be brief, and I already failed at that, so I’ll close now. Thanks for reading and sticking by me. I miss you guys! xoxo