A Health Update Again – A New Diagnosis

A Health Update Again – A New Diagnosis

Hey everyone! I’m back with another update for you on my ongoing health issues, as it’s really been hindering my content creation. I’ve taken some time out over the holidays and for most of January to really focus on myself and try to rest up as much as possible. I have some good news, and some bad news, but I will categorise all of this, starting with the good news.

Underactive Thyroid 

As you know, back in November, from my previous health update, I was diagnosed with Hypothyroidism and I was put on 50mcg of Levothyroxine to bring my T4 levels back up and my TSH levels down. This is where the good news comes in! Within a couple of weeks of starting the medicine, I was already feeling better. I would say my thyroid symptoms are 90% gone now, and it’s a miracle. Comparing how I feel now to how I was back then is like night and day. I had zero energy to do anything and had to constantly take naps, among many other things, and I don’t do that now. I’m practically back to my old self!

I tested my levels last week, and my T4 is in the good range, and my TSH is just below halfway! So the medication is working, and I’m feeling so much better for it. I’m so happy! I’m waiting to hear from my Endocrinologist if he wants me to increase the dosage or keep it as it is, but thankfully for Thyroid, that’s all sorted out, and I couldn’t be happier!

Bile Acid Malabsorption 

Now, I did say back in my previous update that we thought I had SIBO again; however, after seeing a private Gastroenterologist, that is not the case. So the antibiotics didn’t work on anything at all, but I guess it was a good place to start. My new doctor diagnosed me with Bile Acid Malabsorption. I actually did think I had this back in July because I had all the symptoms, so it didn’t come as a surprise to me at all.

Bile Acid Malabsorption (BAM) is a condition where the small intestine fails to reabsorb bile acids, leading to excess bile in the colon, which irritates it and causes chronic, watery, yellow diarrhea, cramping, bloating, and urgency. Suffering from this has been one of the worst times of my life. I was at the point where I could not even leave the house. I couldn’t eat out. I was picking at bits of food because full meals would trigger bile acid production. I had no energy. My B12 was low (it’s increasing now with supplements), and it was literally ruining my life. I said to my doctor that I can’t go on, if this is how I have to live now, I can’t do it. That’s how bad it was. It’s not just the problem of having to go to the toilet and barely eat; it’s the pain that comes with it. The burning like I have never felt before because you are literally passing acid. I don’t want to be too graphic, but it’s horrendous, and I was suffering emotional damage from it, fearing cramps and going to the toilet.

However, the Gastroenterologist immediately put me on Cholestyramine medicine straight after my appointment, which is a bile acid sequestrant, meaning it binds to the bile acid in the colon, so that it can’t cause any issues. This medication started working on day 1! To my relief, I almost cried from happiness. It’s a horrible, sawdust-type of powder drink, so it’s not the best to swallow, but it works. I can now eat normal meals, I can go out without worrying (although I have had 2 or 3 urgent toilet trips while out), and I am back to living somewhat of a normal life again with food.

Unfortunately, this isn’t a fix; it’s just a mask, so we are trying to find out the reason why I even have BAM in the first place. Which leads me to the next section…

Testing

There are a few reasons that you can get BAM, and two of them I don’t have, as I haven’t had any surgeries and haven’t had my gallbladder removed, or any pancreas issues. My doctor is testing me for an IBD like Crohn’s or Colitis, and also testing me for Celiac. These are known to cause BAM, so I have to do more tests to figure things out.

I’ve been eating gluten every single day for four weeks now so that I can take the Celiac test in two weeks time. You have to eat gluten daily for six weeks in order to have a Celiac test, so that the antibodies can show up. I’m really hoping this comes back as negative, as Celiac seems like it would be so hard to live with; however, it might be better than an IBD. I don’t know.

I had an MRI of my small bowel a week ago, which was a terrible experience. I couldn’t have the Buscopan injection to stop your muscles from moving because of my Dysautonomia; I would be at risk of passing out and tachycardia, and I couldn’t have the contrast dye. We did the MRI only by drinking the Lactulose solution. This was 1.75 litres of water and Lactulose mixed in, and it was awful. I was vomiting after, and I could not stop using the bathroom every ten minutes. That was a violent drink! It took me 72 hours or so to recover since my digestive system is so delicate right now. Anyway, I am waiting to hear the results on this. I hope everything is ok.

I do believe further testing will be required, though, either with a capsule endoscopy or a biopsy; however, biopsies are particularly risky for Ehlers Danlos Syndrome patients, so I hope I don’t have to have that. I truly hope we are able to figure out the cause of my BAM and start to fix the situation.

So, this is where I am at right now, awaiting tests and trying to figure out the reason for BAM, while I remain on Cholestyramine until it’s figured out. I am still bloating almost every day, though, that has not gone away, but the cramps and diarrhea have, so I’m just trying to take things easy, not do too much, not worry too much (which is hard), and try to keep positive. If any of you have any input on BAM or IBD’s (IBD is in my family genetics), I would love to hear your thoughts or how you’re dealing with it. I will also give you an update again once I know the outcome of everything.

P.S. – I absolutely love books and always have since I was a child, so I started a brand new Instagram called @LornasBookShelf, and I share everything about my love of books there. If you are also a book lover, please do follow as I post daily!