Misdiagnosing a patient isn’t something a doctor wants to do but sadly it happens. Doctors are only human after all; even if they do act like they’re better than everyone and everything.
I myself have been misdiagnosed a couple of times in the 3 years it’s taken me to finally get an accurate diagnosis. My chronic fatigue was easily diagnosed but diagnosing my gastroparesis hasn’t gone well at all!
3 years ago I started getting really bad stomach aches and would alternate between diarrhoea and then constipation with a lot of blood in my stool. I was also bloated and looked pregnant (I still do but the doesn’t matter at the moment). Anyway, mum and I went to the emergency room at the Royal Childrens Hospital 4 times because of my double over stomach pains and the blood in my stool and every time they would do a blood test and then send me home. They never did anything more than take my bloods and get me to talk to a doctor. They referred me to one of their gastroenterologists and got me to talk to a social worker. They really weren’t any help at all. Well, I saw the gastroenterologist and he put me on the waiting list for a colonoscopy and endoscopy; that was meant to happen in April and I finally got in in November (even though I was on the category 2 list). I got the scopes done and the gastroenterologist told me that nothing was wrong and to come back in a couple of months.
Of course mum and I weren’t happy with that so we got a referral from my GP to see a paediatrician and to see if he could help. We went and saw the paediatrician and he straight away diagnosed me with the chronic fatigue which was great because now I had an answer to that and also to my heart problems but we originally went there for the stomach issues so we told him all about it and what had happened. I think it’s important that I also tell you that I was in the psych ward at this time. Anyway, so he basically told me that I was obese and needed to lose weight and then all my stomach issues would go away. He also made me get an X-ray which he told me was normal but when I went to my new gastroenterologist he told me that it WASN’T normal and that I needed to fix the issue ASAP. So after telling me that I was obese, grabbing my fat, telling me there was nothing was wrong with me and making me get an X-ray and then saying it was fine when it wasn’t he sent me on my merry way and told me to come back in a year or never if I didn’t need to see him.
I mentioned before that I was in the psych ward and that I thought that that was important to mention because what doctor who knows that you’re in the psychiatric unit at the hospital and knows that you have problems with your weight tells you that you’re obese and that you need to lose all the weight and then you’ll be fine? I was obviously in the psych unit because I wasn’t doing well and I had told him that part of the reason I was in there was because of my weight gain. Safe to say that I never went back to him!
After that failure with the paediatrician mum and I went back to my GP to get another referral to see a different gastroenterologist (Lets call him Bob) because nothing with my stomach had improved and it was actually getting worse and not better. So off we went to see another gastroenterologist; this time it was privately and hella expensive. Bob thought I had ulcerative colitis at first and put me on steroids and another medication he also booked me into hospital for another colonoscopy and MRI. I ended up staying in hospital for a week while we tried to figure out what was wrong with me. I had the colonoscopy done and once again nothing showed up and nothing showed up on my MRI either. I was so frustrated when nothing showed up, I didn’t want ulcerative colitis but I also didn’t want to not have an answer. I was tired of seeing doctors and getting told there was nothing wrong with me when I KNEW there was something wrong with me. I got discharged from hospital and went back to see Bob. He told me that he didn’t know what was wrong with me and then sent me home and told me that I had to do a bowel flush out every month. If you’ve ever had to do a bowel flush out to get ready for a colonoscopy or just because like me, then you know how disgusting it is. I mixed it with apple juice and now I can’t drink apple juice, I also used a certain glass for the flush out liquid and now I can’t even drink from that glass because it reminds me of the flush out and how disgusting is. Yuuuck.
So I did that and it didn’t help with the symptoms at all so I went back and he told me to try this medication which I did and it didn’t help at all; it made me feel really sick. Sent me back home. I went back to Bob a few months later and he said that I should do a gastric emptying study. So I did that test and… FINALLY an answer! My stomach empties 1.5 to 2 hours slower than the normal stomach. I asked him if it was gastropareis as I had been doing my research and he said yes. So there you go, after 3 years I finally got diagnosed with a rare and horrible disease called gastroparesis. Bob hasn’t told me anything about it so I’ve had to learn what I can on the internet and through Facebook groups. He also said that I need to see a pelvic physio who I’ve been seeing and has given my exercises to help me relax my pelvic floor and to help my bowel motions come out a bit easer and for other stuff…
Bob put me on a new medications and it has really helped. I can now eat most meals without getting double over stomach aches and horrible nausea. The medication doesn’t work all the time so I still get the stomach aches and nausea but it’s not every meal I eat. I’m still bloated all the time and look pregnant which really gets me down. I pretend with mum to have maternity shoots and pose in funny positions because it’s easier to laugh about the way I look than to remember and think about the fact that I’m 18 and look pregnant even though I’m not and that I will always look pregnant and be bloated. Since Iv’e lost weight the bloating has become a bit smaller so I’m hoping that the more weight I lose the smaller the bloating will get. But that’s another thing, gastroparesis can cause either weight loss or weight gain and I suffer from the weight gain aspect of it so it is so ridiculously hard to lose the weight that I’ve gained. It takes me months just to lose 500 grams and that’s with walking every day. I also eat pretty well. I’m vegan and gluten free and I don’t eat much junk food at all. It’s so discouraging and annoying to try so hard and to not see results.
Since Bob hasn’t told me anything about gastroparesis and I’ve had to google it, I’ve come across some scary facts about it. I never knew it was such a serious illness! People die from it and it’s scary. I’m not saying that I’m going to die from it but I am worried that I will get worse and I’ll end up with a feeding tube in hospital not being able to eat or drink… Gastroparesis is scary and I’m scared.
So, here I am! Finally got my stomach issues diagnosed along with my chronic fatigue. Now I just have to get my fibromyalgia verifed and diagnosed.
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PS- I got a puppy! Her name is Asher and I’m going to train her to be a therapy dog and get her certified so she can go everywhere with me and support me out there in the scary anxiety inducing world!