Health Update – Bile Acid Malabsorption Diagnosed & More

Diagnosed With Bile Acid Malabsorption, Potential Crohn’s, And Arthritis

I started writing this blog post in April, if you can believe that, and I just couldn’t bring myself to continue writing it. I wasn’t in the mental headspace for it. But here I am, trying to make a bit more sense of things and trying to explain my health situation a little better.

I mentioned in my previous health update that my doctor preemptively diagnosed me with Bile Acid Malabsorption, based on my symptoms, and we were trying to figure out why I had this. Well, I had the official SeChat scan, and the results came back with 5% bile retention, which is considered severe. My bile doesn’t get reabsorbed in my ileum, and it’s causing me so many issues.

The SeChat test involved me swallowing a radioactive pill that mimics the absorption of bile acid. They scanned me an hour after I swallowed it using a special X-ray-type machine to see the amount of radioactive solution inside, and then they scanned me again at the end of the 7th day to see how much of the radioactive solution was left.

Above 15% is considered normal. 10-15% is mild, 5-10% is moderate, and below 5% is severe. I was convinced my reading would fail at one point because, out of the blue, I ended up constipated for 2 days, which is completely out of the ordinary, and I thought it would ruin the results, but it didn’t. So I do wonder if it would have been below 5% if that had never happened.

Bile Acid Malabsorption

I did touch briefly on how Bile Acid Malabsorption affects the body, but to reiterate that and explain it a bit more, it’s literally your body’s inability to reabsorb and recycle your bile, so it all ends up in the colon, where it causes cramps and watery diarrhoea that burns you. It’s bright yellow, and this happens multiple times a day. It’s extremely painful; it’s one of the worst pains I have ever felt in my life. It feels like fire, and it’s absolutely exhausting. You can do a quick Google to see what other symptoms are involved, but it’s ruining my life.

There are three different types of Bile Acid Malabsorption; these are:

Type 1 (Secondary): Caused by ileal disease or surgery, such as Crohn’s disease, ileal resection, radiation therapy, or cancer treatment.

Type 2 (Primary): Idiopathic, usually caused by overproduction of bile acids by the liver (often due to lack of FGF19 regulation).

Type 3 (Other/Mixed): Associated with other GI disorders like cholecystectomy (gallbladder removal), chronic pancreatitis, celiac disease, or medication use (e.g., metformin).

Type 3 is not on the cards for me, as I have never had any kind of surgical removal, I do not take those medications, and we were able to rule out celiac disease, despite me having gluten sensitivity, which does inflame my body. We were assuming at the time that I was type 2, which is idiopathic, based on the fact that my MRI came back normal, not showing any damage, and my Capsule Endoscopy came back normal. These didn’t show any visible damage at all to my gut, ruling out any damage from an IBD like Crohn’s or Colitis.

I was put on Cholestyramine at first, and this Bile Acid Sequestrant is a binder for the bile, which actually worked for around 5 months. Then all of a sudden, it stopped working. I was having awful symptoms again while taking the medicine, and this is where I am at now. I switched to Colesevelam, which is an even stronger medication to absorb the bile, and unfortunately, that has not worked properly. I was in such a bad situation a couple of weeks ago that I was trying to get any doctor to take me seriously, as I cannot do this anymore.

High Calprotectin

I took a new Calprotectin test (while I was flared up), and my new reading was 312. My first reading in December was normal, my second reading in March was 82 (slightly elevated), and now it’s 312. Anything above 250 is considered high inflammation and IBD territory, as Bile Acid Malabsorption alone does not cause your Calprotectin levels to go that high, so I have active inflammation in my gut.

I was only eating around 600 calories a day of really dry, fat-free food (fat triggers bile release), including dry gluten-free bread, dry Rice Krispies, plain potatoes, baked chicken, and not much more for about a week, and I’ve slowly been able to increase the calories to around 1000-1200. These are the only foods that I can handle that do not send me to the bathroom constantly, despite taking two doses of Coleveselam and also adding in Ondansetron, which I was recently prescribed to slow my gut motility. My flare-up was so bad that even drinking water, in sips, caused my bowel to give me cramps. I was getting woken up in the night with cramps and pain, and occasionally had to run to the bathroom too.

All I can do right now to keep the BAM under control is take my doses of Colesevelam and avoid high-fat foods, especially foods that are mushy or liquid with fat in. The easier the fat can be accessed, like from liquid, the worse it is for my condition. If the fat is inside something like bread or potato, something absorbent, or requires harder work to be broken down, it’s better for me. So easy fats are an absolute no; they send me to the bathroom. Absorbed, harder-to-break-down fats are better tolerated. The less fat I eat, the better. But none of this helps the major inflammation that I have. I legitimately look like I’m 6 months pregnant; see below. It’s so uncomfortable and hard to live with.

It’s Affecting My B12 And More

My B12 is still low, as this vitamin is only absorbed in the ileum. I am taking a supplement every single day of 1000 mcg, and it has only made a slight difference. So clearly, my ileum is broken, and this leads me to be concerned about my fat solubale vitamins: A, D, E and K. Bile Acid Malabsorption is notorious for making you depleted in those vitamins, and so is the medication, so I really have to keep an eye on this as I’m already starting to lose more of my hair (which is so sad). I have really sparse patches, and it’s thin. I’m going to have to switch to intramuscular B12 injections to actually absorb it.

My worry at the moment is that, with a reading of 312 and symptoms that took a lot of work to calm down, I have active IBD going on. I retook a Calprotectin test a couple of days ago, after having a much calmer bowel, and it was 249, so it’s still high, even without symptoms of running to the bathroom. It does run in the family; I have two family members with Ulcerative Colitis, and it does have a strong genetic link. From all of the research I have done, it’s looking like it might be early-stage Crohn’s, before it even shows up as visible damage, or it could be Microscopic Colitis, which doesn’t show any visible damage.

A Tricky Ileocolonoscopy Situation

I am very scared to have an ileocolonoscopy because the risk of bleeding and things going wrong is much higher in those with Ehlers-Danlos Syndrome, so I was hoping to avoid this and trial medications that would decrease the inflammation instead; however, my gastroenterologist won’t do this and said I need to have the ileocolonoscopy for the diagnosis. I found out that I also have to have a cannula for this, which is a big problem as my veins don’t work. They collapse when touched with a needle (common with my condition), and I pass out (which is made much worse with Dysautonomia).

This is something that’s happened my entire life; it’s never been successful, not even for blood tests unless a groin artery is used. So in order to have it potentially work, I need to be sedated and have someone trained in finding deeper, stronger veins. But this has caused a problem with having it done privately, as they didn’t have the capacity to do it and referred me back into the NHS system, and I’m on a waiting list of 20-41 weeks… The whole reason I went private in the first place was to avoid such long wait times. It’s atrocious to be waiting that long when I urgently need a diagnosis.

I will do anything possible to get a treatment plan. I literally cannot live like this anymore. I hardly ever go out; I’m so tired, I’m paler than usual, I can barely eat… I can’t take it. This isn’t a life. I’m really struggling to work. Since my stressful situation with an ileocolonscopy is bad enough with what I have to go through, waiting this long while I suffer is just horrendous. I’m trying to get some sort of anti-inflammatory medication in the meantime. I will let you know if I have any luck with it. If anyone else has any good information on managing potential Crohn’s without medication, please let me know.

Extra Health Information

And as an additional update, I got diagnosed with early-onset osteoarthritis in my neck. I’ve been having a lot of neck pain and bad migraines, so I went to a specialist chiropractor who deals with the neck. We did a full 360-degree set of X-rays, and they show the left side of my neck has a decent amount of osteoarthritis, where there’s no gap between the bones, so they’re touching. The right arrow shows no gap on my left side; the left arrow shows a gap on my right side in the image above. Unfortunately, there’s nothing I can do about this, but it is very common in Ehlers-Danlos Syndrome, and expected to be across a lot of my body. This was really sad to find out as I’m only 38, and it’s definitely tough with all the neck pain, but I’m not sure I can really improve this situation.

Then, to round it out, I am still taking Levothyroxine for my underactive thyroid. I was on 50 mcg, which actually ended up being too much, so we dropped me to 25 mcg, but that seems to be a bit low, so we are trialling 37.5 mcg now! Hopefully that’s the right dosage for where I am at the moment. But let me tell you, trying to fit all these medications in with the correct timings is so annoying! Coleveselam has to be taken 4 hours away from every other medicine, and I take two of these a day!

Anyway, sorry for the long update! I can’t believe this is over 1800 words. If you made it this far, I appreciate you. Thank you for supporting me and sticking with me during these tough times.