Fear and Loathing in My Belly

I love March. I love the smell of spring rain and the feel of the air on my face when it first loses its bitter chill. I love the flush of new green on the ground. I missed March this year because I was ill. I’m going to assume that the vast majority of people have no interest in my gastrointestinal goings on, but I’m also going to assume that somebody out there is in the same boat that I was – sick, scared, and feeling let down by their body – and hope they stumble across this while they’re trying to figure out what’s going on. If you’re there, there is a light at the end of the tunnel!

Early March

My guts are not working so well. I’m uncomfortable, but not too worried as I’ve suspected for years that I might have a touch of irritable bowel syndrome (IBS) (since I found out that it can cause constipation as well as the rest). I’ve tried eating super-healthy, drinking loads of water, taking various things, but nothing seems to sort it out. Still, I assume it will pass.

Mid-March

Things have gotten worse. I’m now alternating between no action and needing the toilet… urgently. I’m sleeping all the time and have started getting headaches. Food makes me feel nauseous and I’ve been sick a couple of times. I make an appointment with the doctor. I manage to go out to the shop for food, but by the time I get back I’m too tired to eat.

Three days till I see the doctor. I’m trying not to panic, but I feel really ill now and I’m scared. I’m in constant discomfort and sharp pains are roaming around my belly. The lower right quadrant has developed a weird burning sensation. Holding a hot water bottle on my belly helps. The headache is now constant and my skin is itchy all over. Apologies for being gross, but what I’m producing is not normal.

I go on the internet (despite knowing it’s a good way to scare myself silly) and become convinced that I have some kind of gall bladder disease. I have all the symptoms except for jaundice. If it is my gall bladder I will have to have it removed. I don’t want surgery, and I don’t want to lose an organ. I’m trying to be strong and not let this get me down, but I’m not managing very well – I’m really upset.

The Doctor

I weigh myself before my appointment and discover that I’ve lost over five pounds – this is 20% of my body weight and I am now clinically underweight. My legs shake as I walk down the stairs, and I am nodding off in the waiting room.

I tell the doctor all my symptoms and she agrees that some of them suggest gall bladder disease – she isn’t convinced because I’m not jaundiced but she orders an ultrasound just in case. She also orders bloods and urine analysis, which I get done while I’m there. She gives me a vial for a stool sample but says to hold off on it unless the diarrhoea continues. I’m to come back in ten days.

I’m pleased that she didn’t fob me off with the standard IBS diagnoses without doing any investigations, but also concerned that she didn’t seem to understand how ill I am. Or am I just being hysterical? I’m losing perspective on the whole thing, but I feel really awful and ten days seems like a terrifyingly long time.

I speak to a friend of mine who has Crohn’s Disease. Crohn’s has already crossed my mind as a possibility, but I discounted it because I’m not passing blood. My friend says she doesn’t want to scare me but my symptoms sound a lot like hers. She urges me to take the stool sample in to rule it out.

The day after the doctor’s is spent shuffling between the bed and the toilet – twelve times. I know I should eat but can’t face the inevitable nausea and pain. Halfway through the day my hot water bottle needs to be refilled but I don’t have the energy and put up with the pain instead.

The next day I make a smoothie with just banana, apple juice and plain greek yogurt. This seems to go down okay and I’m relieved that I won’t actually starve to death – I wouldn’t try to live on it alone long term, but in the short term it will provide all macronutrients (carbohydrate, protein and fat) as well as the main electrolytes (potassium, calcium and magnesium) and probiotic bacteria. I probably should have added a tiny pinch of salt, but didn’t think of it. Cucumber would have been another thing to add, as it helps combat dehydration, but I didn’t think of that either. I find over the next few days that between smoothies and juice I have a little bit more energy and my symptoms are greatly reduced. I try adding greens and other fruit, but that sets me off again. On one of my better days, I go to the health food shop and buy hemp protein powder and powdered greens and fruit for smoothies, and I start to feel even better.

By the way, dairy is a no-no for me in general, as I am lactose intolerant, but I have always been okay with yogurt. I assume it is because the cultures have already broken down the lactose.

Meanwhile I go back to the doctor’s office for my results and to drop off the stool sample (it feels a bit weird walking around with that in my pocket btw!). The receptionist tells me that my blood and urine were normal, but isn’t able to tell me exactly what that excludes. I don’t know whether to feel relieved or disappointed – I guess it’s good to eliminate things, but I know something is wrong with me and I want to know what! Plus, I know that if it is Crohn’s or ulcerative colitis these may not show up in blood and urine, but would in stool – and I really, really don’t want either of them. My reaction to the ‘good news’ seems to baffle the receptionist. Hey ho.

Late March

I have had nearly a week of feeling better on my smoothie-only diet. There are still some strange goings on in my tummy, but I am pain free and going to the toilet between two and four times a day, which is more reasonable. My headache resurfaces for a couple of days, and I suspect too much potassium and cut back to one banana a day and add half a magnesium tablet. It may be pure coincidence, but my headache goes away again.

I am now up and about, and starting to feel hungry again, which is a good sign, but presents the question of what I can eat. I decide to try congee, a rice porridge which is a staple of children and invalids in China and other parts of Asia. It is bland and low residue so I think there’s a good chance I can tolerate it. I boil rice for a long time, until it has the consistency of porridge, and add a white fish fillet from the freezer and a sprinkle of dried seaweed. I add a teaspoonful of coconut oil as I have read that it has a unique structure and may be digested more easily than other fats (and fat digestion has been a definite problem). To the slightly cooled congee I add miso paste for flavour and another boost of probiotics – I’m sure I need them after all the diarrhoea. Be aware that miso is a soy product, and a possible allergen. I decided to try it anyway as it seemed like the benefit outweighed the possible risk.

By this time, I’m really hungry, but also nervous about eating. I try half a bowl and wait. All good so I eat more, and still no adverse reaction. I’ve added another meal to the menu! And this one also contains all macronutrients. I’m not worried about vitamins, minerals and phytonutrients as the powders I’m putting in my smoothies are packed with an astonishing range of them.

Two days later the congee is still working well for me, but I’m craving more real food. Having been mostly symptom-free for a while, I give in to temptation and eat some tortilla chips and salsa. This brings back the cramps and some pain. The really dumb thing is that I have no idea what exactly caused them because I have eaten four new ingredients at once, and all of them are potential trigger foods. Fortunately, the symptoms go away the next day, and I determine not to add multiple suspect foods in the future – I will try one at a time and wait a day or two to see what happens.

All this time I have been caffeine and alcohol free because it was apparent earlier on that they weren’t helping. In another moment of weakness, I try small whisky. The result is a burning sensation and not feeling great the next day. Add another one to the stupid list. But hey, I’m only human.

Second Doctor’s Appointment

I go back to the doctor and report that my symptoms initially worsened, then improved when I went onto smoothies, and that I haven’t lost any more weight. She tells me that the urine and blood tests showed normal liver function and no signs of general inflammation, and that the stool analysis was negative for calprotectin – a marker usually found in people with active Crohn’s or colitis. On that basis she is diagnosing me with IBS, and prescribes peppermint oil capsules. She tells me that normal liver function makes gall bladder disease unlikely, but that it’s worth going for the ultrasound just in case. I tell her that I’m concerned about my nutrition and ask if I should be on a dietary supplement – a juice or shake – and she says she’s not keen on them and advises me to eat some of whatever I fancy. This seems like slightly daft advice but I don’t say anything – I can stick to my current regime.

I start the peppermint oil capsules immediately, and they do help. They are supposed to be coated so that they dissolve in my intestines rather than my stomach, but if fact give me a minty sensation in my throat and taste in my mouth. I read online that this is more common with the brand I was given – Apercap – but they are helping anyway, so I don’t bother going back to ask for another brand.

Dilemma

At about this time I have a decision to make. A Latvian friend of mine asked me months ago if I would walk some of the West Highland Way with her, and I agreed. She got time off and booked flights. She was due to arrive in a few days. If you haven’t heard of it, the West Highland Way is a long distance walking route from near Glasgow to Fort William in the Highlands. I’ve done most of it before, but of course I wasn’t ill, and hadn’t been sick in bed for weeks. My legs are still weak and I am still sleeping a lot. I have to admit that the idea of doing it in my current state seems ludicrous.

I know she would understand if I can’t do it, and she loves travelling around Scotland so I’m sure she would still have a good time, but I hate to disappoint her. I consider that we probably weren’t going to do very many miles a day anyway as she isn’t particularly fit and hasn’t done this kind of trip before. I decide to tell her that I’ll give it a try; if I’m way too slow she can go on alone or do something else. Worst case scenario is that I can’t do it at all, and she will still have the same options.

At this point my friends declare me totally insane, but that’s nothing new. If you want to know how it went (and what I did for food) see my next posts.

I assume that if you’ve read this far you are going through something similar yourself. Feel free to ask me anything, and to share your own experience. Do go to the doctor – although in my case it didn’t turn out to be anything too sinister, these things need to be ruled out, and the doctor can help with management.

See you on the West Highland Way!

 

Please let me know if you liked (or didn’t like) this post!  Your comments help me keep writing.

 

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