Wow. What’s this? A personal post? Something new that isn’t sponsored or a recipe/craft? I KNOW, RIGHT?! I hope you will all forgive me. I’ve had a lack of time for sure, what with my kids starting school and our whole schedule changing. But more than that, I’ve had a lack of… inspiration. The truth is that I’ve been battling a lot of health issues lately that have meant that I’ve just not been up to writing. I haven’t wanted to get into this personal stuff because I know that no one really wants to know about bloodwork and biopsies and stuff like that. And since I’m still short of answers, I didn’t really want to make any updates until I had definitive news to share.
But here’s the truth – the last nine months have seen me going through a whole host of tests and workups from an entire TEAM of specialists. They know something is wrong, maybe a lot of somethings, but they aren’t really sure of what it is.
Some of you may or may not know that I had bariatric surgery in June 2008. I was morbidly obese and pretty horrifically unhappy about it. I was in a bad marriage with severe depression and had just been told I had diabetes. Rather than put in the work to lose weight and get my life together, I acted out of fear and laziness, and I booked in a surgery in the Czech Republic and had doctors who didn’t speak English cut out 80% of my stomach.
I lost 120 lbs in a year, left my husband, met Mark and started over again. Almost exactly two years after my surgery, I got pregnant. Over the next four years, I had three kids. Between each one, my weight stabilized somewhere around 160-165 lbs, and I felt pretty good. But after Chester was born, I started having problems. Heartburn, which had been so bad in all of my pregnancies, was now at a peak. I took 2 – 4 TUMS after EVERY meal, and I then took more in an hour or so because it didn’t take away the pain. I started having issues with my belly, experiencing pain and alternating constipation and diarrhea. I also began to put on weight. Even though my diet hadn’t changed, and I was eating little and often, I gained 30+ lbs in about six months. I went to a few different doctors who were unhelpful and basically told me to lose weight, and I’d be fine. I tried to explain that I couldn’t lose weight – even starvation didn’t work – and they told me I needed to be more active. But since I was also indescribably tired all the time – to the point of serious exhaustion – working out wasn’t something I could really do.
In February of this year, I started having pretty severe pain in my right side, right up under my ribcage. I ignored it for a few days, but eventually it got so bad that I went to Urgent Care. The doctor on call was convinced I had hepatitis or some other liver problem, but all he could find was a UTI and an E Coli infection. I was put on steroids (which actually made me feel GREAT for the three days I used them) and told to go to my GP.
My new GP looked over the test results from Urgent Care and said that my liver was fine. He proclaimed that I had costochondritis, or Tietze’s Disease, which is inflammation of the rib cage cartilage. He gave me some pain pills and told me to do physical therapy to help.
Since I was there, I decided to ask about the stomach issues that had been plaguing me for so long, as well as the chronic GERD I’d been experiencing. My doctor took a long time listening to my concerns, and he suggested we get a full workup including blood tests, urine tests and the ever-fun stool tests.
The blood tests showed that I was pretty moderately anemic. Other tests showed that even though the doctor suspected Celiac Disease, C Difficile or H Pylori infections, none of them were a problem. However, I was definitely lactose intolerant (which I’ve known since I was a kid), and my calprotectin was off the charts, which is a sure sign of an Irritable Bowel Disease such as Crohn’s or Colitis. A test looking for blood in my stool showed that I had more than 10x the normal amount. I also had a ton of split fats in my stool, which is indicative of malabsorption, meaning I wasn’t getting my nutrients. I was referred to the hospital for an endoscopy and colonoscopy, and I was referred to a hematologist at the cancer center to discuss my anemia.
The team who did my scopes were less than helpful. They kept commenting that I didn’t look ill, and they didn’t think these tests were necessary. As you can imagine, I didn’t feel great. It isn’t as though I asked for the tests or was eager to have hoses stuck up my bum and down my throat, but my doctor wanted to find out for sure whether I had IBD or other issues.
As it turned out, I had none of those things. The doctor said that all she found was a mild esophagitis and nothing else. Back to the drawing board.
Meanwhile, I went to see the hematologist at the cancer center, and he did a full blood workup. As we knew, it showed that I was incredibly anemic, and I was told I need iron infusions, as my iron stores were completely gone. Besides my hemoglobin being way low, I also had next to no ferritin in my entire body, and my transferrin saturation was as low as it can be. It was also noted that I had gastric partietal cell antibodies, which is something that can indicate pernicious anemia. However, since I did NOT have intrinsic factor antibodies and my B12 was normal, the suspected diagnosis was autoimmune gastritis.
Are you keeping up with all of this? Because I’m only giving you the tip of the iceberg! So many other things were going on at the time, with so many little tests that came back suspicious, but my doctors only acted on these ones. Ready for more? Here we go.
As we set up the iron transfusions, my gastroenterologist booked me in for a capsule endoscopy. This is a large capsule with a camera in it that you swallow. It takes photos/video as it goes through your system so that it can see things that a normal endoscopy would miss. It would be a great way to discover if I did have gastritis or not. However, there was some concern (based on an earlier test I’d had) that I had some form of pyloric stenosis, so it was decided I would first swallow a patency capsule, which is a dissolvable capsule of the same size that they could use to make sure the real capsule would get through. I swallowed the patency capsule, and in 24 hours I returned to the hospital for an xray. It turned out that the capsule had gotten stuck – not in my pylorus, as we feared, but in my small intestine! Had that happened with the actual pill, it would have meant major surgery. As such, the capsule endoscopy was canceled.
I was instead booked for a CT scan of my abdomen, though it came back clear with no signs of any issues.
Finally, after months of waiting, I finally got in to see the hospital’s bariatric surgeon, who would be able to tell me if all of my issues were due to complications from my surgery eight years ago. After looking at the CT scan, he said that he noticed some issues with my stomach, including that the upper part had either stretched or been left too large from the beginning. Also, the bottom part was far too narrow. He said he didn’t think it was what was causing my GERD, but it could definitely be a contributing factor.
He didn’t want to put me through another endoscopy so soon after the last one, but he said he may do one later if a change in my diet and new medication didn’t help. Right after the appointment, I met with my gastroenterologist, who said that she wanted to do an endoscopy so they could biopsy my stomach again and see if they could definitively diagnose autoimmune gastritis. It was decided the best thing would be for my bariatric surgeon to do this since he was keen to get a look at my stomach anyway. A date was booked.
Finally, last week, I had the endoscopy. It was supposed to take about 30 minutes, but it ended up taking over an hour, as lo and behold, there was much to be found! Despite having had an endoscopy only five months ago, the new one showed unexpected results. First of all, the “mild esophagitis” that the first doctor had noted was actually something called Barrett’s Esophagus, which showed severe damage to my lower esophagus. This is likely due to the chronic GERD I’ve been dealing with for years.
But more worrying than that was that the second endoscopy found “multiple sessile polyps” in the first part of my duodenum. These are pretty rare to find, and even moreso given that they don’t seem to have been there in my first endoscopy. In fact, I went back through my first set of results and found a note from the doctor which says “The duodenal bulb and 2nd part of the duodenum were normal.”
Anyway, the doctor biopsied the polyps, as well as taking the rest of the biopsies from the different areas of my stomach and small intestine. I am still waiting for results.
Funnily enough, I had an appointment this week with a dietitian which works with my surgeon. He’d wanted me to meet her to go over my diet. As we spoke, she made me aware of something that no one had bothered to tell me. In addition to the esophagitis the first endoscopy had found, the colonoscopy had actually found diverticulosis in my sigmoid and descending colon. While this isn’t the worst news, it does make me uncomfortable that I wasn’t actually made aware of this at all. Diverticulosis can be very serious if it turns into diverticulitis, and there are certain foods you really should be careful of when you’ve got it.
Anyway, for now, I am waiting, as I have been patiently doing for nearly 9 months. My anemia is being managed well. My last tests a few days ago showed that my hemoglobin is exactly on the bottom line of normal, which bodes well. There are a few abnormalities in my cells, including quite a lot of variant lymphocytes, poikilocytosis, anisocytosis and smudge cells. Let me tell you something – if you see these on your test, don’t google them! You’ll only freak yourself out, as all roads lead to leukemia! I had to ask my doctor to explain because I was so fearful of these results. Thankfully, he explained that in my case, these were the result of my iron transfusion making my cells a little bit different as they try to recover. I am assured there’s no cause for alarm.
However, until my biopsies come back from these polyps, I know that I’m going to be rather fearful. I normally subscribe to the “no news is good news” way of thinking, but for all I know the pathologists haven’t even started on my biopsies yet, so until I hear back, I’m pretty sure I’m going to be worried.
As it is, whatever the result may be, good or bad, it’s going to be hard for me. If it’s bad (ie – Cancer or something else worrying) then that’s an obvious hardship. But if all results are normal, what exactly does it mean? Why am I in constant pain? Why do I have all of these crazy test results? What is actually going on?
Time will tell, I guess. In the meantime, any prayers or good thoughts are appreciated more than you can know.