Please share to see if someone else can relate/help me out 🙂 Warning… I’m writing this post to see if the powers of social media/blogging can help me get to the bottom of some of my stomach/gut issues. So I’ll be talking about bowels and bowel movements! Maybe don’t read if you’re squeamish or eating 😉
For people new to my blog, I’m a female in my 30s who can’t work (since 2015) because of my illnesses. My ‘main’ illness is adrenal insufficiency, which means my adrenal glands don’t produce the stress hormone cortisol, which is a hormone necessary for life and I’m on daily cortisol/steroid replacement therapy. Because it’s uncommon, I’ve had to do a lot of reading around it and other things I’ve been diagnosed with, making me an ‘expert patient’. But I’ve also been told by my doctors that I seem to be a pretty complex/unusual case of an already uncommon illness (more on that later). One of the big things I’m having issues with at the moment is abdominal pain and chronic diarrhoea, and I’m not really getting very far diagnostically/treatment wise/symptoms management wise. Diarrhoea is particularly tricky with adrenal insufficiency because it puts me constantly on the brink of adrenal crisis, which is a life threatening state. I have regular hospital/a&e admissions to try to avoid adrenal crisis.
What I need help with:
Working out what causes the problem and how I can control my diarrhoea, nausea and abdominal pain because I feel like I’m permanently firefighting to stay out of hospital and I have a poor quality of life.
I’ll give a bit more medical info later for any medics reading who want to know, but here’s my daily (gastro related, I have many others) symptoms:
– stomach cramps
– diarrhoea (Bristol scale type 7). No blood, sometimes mucus. Sometimes green, mostly yellow/brown
– wave like/contraction like pains
– tachycardia, highest has been 180bpm. I also get funny heart rhythms
– feeling sick all the time
– feeling dehydrated
– feeling hungry all the time. I don’t think I am actually hungry, I think my body tells me I’m hungry because it’s lacking something. I feel better if I’m eating small amounts little and often
If I’m going to get stomach ache or diarrhoea, it’ll usually happen between 1pm and 4pm or later in the evening. But it happens other times right before I get admitted to hospital.
Things which I know make it worse:
– eating certain foods. I eat low carb, gluten free, no chicken, no pork because I noticed those make it worse.
– having a high heart rate. After eating some foods or eating too big a meal, I’d get tachycardia even if I wasn’t moving.
– if my temperature rapidly changes. If my body’s struggling or I go from cold to hot or hot to cold
– over exerting myself. Showering, walking too far and climbing stairs usually sets it off.
– alcohol. I don’t drink any now
– not eating. If I don’t eat, I still get diarrhoea, but it’s usually a million times worse and ends up with me in hospital straight away.
Things which improve it:
– drinking Coke Zero. I don’t know why. I’ve tried more healthy options like peppermint tea, ginger based things, green teas, but they don’t work.
– ready salted crisps. Again, I don’t know why. But when I’m trying to avoid a hospital trip, coke and crisps stop it or at least slow it down. I thought it might have been the salt in the crisps, but I’ve tried other salty foods instead and it doesn’t work.
– taking more hydrocortisone. Whenever I try to taper my steroids to my baseline, it gets worse, even if just 2.5mg. If I increase them back again, it goes away.
– lying down. If I lie down when my Apple Watch tells me I’m tachycardia then I’m less likely to have stomach issues.
– eating carbs in general helps. But it’s a short term fix and it definitely doesn’t help my endocrine problems.
– eating only a few mouthfuls at a time rather than meals.
I call an ambulance or go to hospital when:
– I nearly black out on the toilet
– if I’m dripping with sweat or shaking uncontrollably
– when I can’t put up with any more pain. When it’s really bad I get a ball-shaped pain on either side at the front below my ribs, so I’m assuming it’s 2 organs/muscles of something that I have parallel on my body.
– if I’ve had more than 5 movements in 24 hours and it’s not easing (trigger for sick day rules)
– if I get my ‘this is going to end badly’ feeling
– if I’m sick or more feeling sick than normal for me
– if I can’t eat anymore. Usually I can eat and drink normally even with stomach pain/issues
After lots of emergency admissions last year because of diarrhoea and the risk of adrenal crisis, I was referred to a gastroenterologist and had the following tests:
– colonoscopy with biopsies
– endoscopy with biopsies
– SeHCAT scan
– faecal calprotectin was positive once but negative all other times
– faecal elastase normal
– stool cultures all normal
– MRI small bowel
which rules out:
– c. diff
– microscopic colitis
– ulcerative colitis
– pancreatic insufficiency
– carcinoid syndrome/neuroendocrine tumours
– bile acid malabsorption
– Coeliacs Disease, although not eating gluten has helped a little
The gastro doc said I have IBS but wanted me to follow up with a hepatologist because my ALTs were high and an ultrasound showed Non Alcoholic Fatty Liver Disease. The liver doctor said she wouldn’t rule out Crohn’s disease completely because I’m on daily steroids which might mask it and sent me for a fibroscan which showed no scarring. Waiting for follow up.
I’ve also been to see a cardiologist because of my tachycardia and had a 72 hour holter test and ECG. He ruled out Inappropriate Sinus Tachycardia and SVT because he thinks I’m tachy in ‘an appropriate response’ to something else going on (but he didn’t know what), so he doesn’t want to start me on meds to reduce my HR because my heart is compensating for something else. I seem to have POTS-like symptoms in that my heart rate goes up more than 30bpm from lying to standing and it goes up more the longer I stand up. In reading some of the lifestyle advice for POTS and making changes, I’ve managed to improve my average heart rate but still have periods where I’m tachy quite a lot. I’ve had a read about autonomic system problems, because I know they can contribute to gastro issues, but my GP isn’t keen on looking into it.
My daily diet is pretty much the same every day (although not everything in one day):
– yoghurt and grain free, low carb granola
– sugar free squash
– tuna salad
– egg muffins/omelette
– homemade vegetable soup
– carrot and cucumber sticks
– dinners like meat and veg, chilli, curries, stews (without rice/pasta)
– olives/Mediterranean diet things
– coke and crisps
Other things which might be worth knowing:
– I had a cortisol day curve test on what my baseline of hc should be and it said that my cortisol levels were sufficient- upper normal at my dosing times. It feels like my body isn’t getting to use the cortisol that’s in my blood though, because my blood work says it should be fine, but I still have lots of low cortisol symptoms.
– my body works backwards, which is the bit confusing my docs. But I have data and I run ‘experiments’ on myself to make sure I’m right before I talk to doctors. So if I eat, my blood sugar goes down, and it goes up by itself if I don’t eat. My blood pressure goes up instead of down in adrenal crisis. I lose weight when I take more steroids and gain it when I’m on my baseline. Caffeine brings my heart rate down, as does IV steroids. Those are a few examples.
– I can usually tell as I’m eating something if it’s going to give me stomach ache. I get a ‘ feeling’ and it’s usually right. Likewise I can make my blood sugar drop from 7 to 4 in the space of 5 minutes by eating the wrong thing. It’s like my body responds super fast to food.
– I used to have really high cholesterol but eating low carb high fat seems to have rectified that.
– I drink a lot and feel thirsty all the time. ? Diabetes insipidus. I don’t have diabetes mellitus.
– my thyroid is checked regularly and is on the lower end of normal
– despite having diarrhoea for the best part of 18 months, I’m still overweight. But then I’m backwards- I lose weight when I don’t have diahorrea and stay the same or gain weight when I do.
– other medical conditions I have: asthma, reactive hypoglycaemia, hyperlipidaemia, hypertension, osteopenia, depression, NAFLD.
– medications: hydrocortisone, asthma inhalers, montelukast, amitriptylline, Cocodamol, antihistamines, citalopram, vit d, calcium, ramipril, omeprazole, loestrin.
It could be down to IBS like the gastro doc says, because the symptoms fit, but I’ve done a lot of food diaries and experiments and think I’ve narrowed down food or eating habit related triggers. Plus it’s a bit odd that it usually happens at the same times every day, improves with steroids and happens after I do specific activities. I’ve looked into the FODMAP diet and will try it once testing has stopped if I have to, but I’m not sure it’ll help from a blood sugar management point of view.
The thing I struggle with the most is I permanently feel like I’m on the edge of adrenal crisis, which puts a huge strain on my body. Aside from that, having daily diarrhoea and pain is really annoying and hard to manage with everything else, and my quality of life is very poor- I’m housebound most of the time. I’m not due to see my endo for a while and I’m being bounced between specialists from various departments who all seem to be scratching their heads a bit.
If you come across this blog, please share and see if any of it rings any bells with you or sounds familiar! A lot of my diagnoses were found by accident or despite other indicators being ‘fine’, so I wouldn’t consider anything too random or unusual at this point!
Thanks for reading 🙂