Transverse Myelitis and Diarrhoea

This is not a pleasant topic to address in public. In addition, I am not sure how many of you with the various forms and expressions of Transverse Myelitis will share my experience. So you will have to decide whether this is relevant to you or not.

Diarrhoea is unpleasant at the best of times. We all get times when we pick up an infection from food, be it Escherichia Coli (E. Coli), or the more serious forms of Salmonella. These are fairly easy to deal with in the sense that you take the prescribed medication, and perhaps something to calm the gut, and within 24-48 hours you know you are on the mend, but have decided you will not return to a particular restaurant, or will take more care with your own food preparation.

However, when you are handicapped it is all more difficult to manage. The recurrent urgency to go to the toilet means you have to plan journeys around your knowledge of where toilets are likely to be, and then you may want to be close to a toilet so you can get there in time. Travel and public gatherings become difficult, and we all have that sense of relief when we see a handicapped toilet sign, knowing that we will not have to wait in a queue.

I did write a book chapter (Chapter 4 in ‘Taking Charge’) about my own spectacular experience in the early days of my first hospitalisation (http://www.familyconcernpublishing.com.au/product/taking-charge-a-journey-of-recovery/), but that was a ‘one off’ experience after escalating treatment to deal with several days of constipation. What I did not realise then, but do now, is just how problematic toileting can become every day when you are handicapped, when you have lost normal sensation from the waist down, and find difficulty not just with getting to a toilet, but also the whole business of undressing and cleaning up. I did not realise just how anxious the whole thing can make you, and how that has an impact on socialisation.

I have always been a very physically fit and healthy person. I have been fortunate to have had the formal training to become a doctor. In addition, I have had the good fortune to be married to a Dietitian. Between the two of us we have been able to solve most of life’s day to day problems. However, something new has entered my life in the last year that has made it more difficult, and now stops me from attending many public gatherings. I have always been able to eat anything. But recently, I seem to have developed a food sensitivity.

The first thing I noticed some years ago prior to getting TM, was that I seemed to be a bit sensitive to milk, and this stopped when I began using lactose free milk. In the main it meant using lactose free milk on my morning cereal, but gradually over the years seems to have become more serious. I became aware of being sensitive to lactose in ice cream, and then lactose in certain cheeses. Now I have to be aware of anything containing lactose. I am not claiming it has been caused by TM, and most likely it is part of the aging process. But it sure makes life difficult when you are handicapped.

In the last year, I seem to have had more frequent episodes of diarrhoea, even avoiding lactose. There is a cycle of several days, or even a week or two, of being OK, followed by a windiness, then explosions over several days, gradually calming down. This has been harder to track down. We have had to explore FODMAP sensitivity in a detailed way (and you can find lots of detail on the Internet (of course). FODMAPS are Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols (so there!). Effectively, they are types of sugars broken down (fermented) by bacteria, mainly in the large bowel.  ‘Fermentable Oligosaccharides’ include Cereals like Wheat, rye, and barley as well as vegetables like onions, leek, shallots, garlic, legumes, lentils and artichokes. Disaccharides are basically Lactose. Monosaccharides include honey and fruits like mango, watermelon, apples, pears (you know, all your favourites). Polyols include more favourites like apples, pears, apricots, nectarines, plums, and (rather quaintly) cauliflower.

So what we had to do was become diet detectives, and reduce my diet to very plain food like rice and green vegetables with small servings of meats, and then gradually add things from the list above. One of the first things we added was a daily Probiotic capsule, in an effort to help my gut flora recover.

The upshot of our detective process was that Lactose remained the prime suspect, and I seem to be sensitive to even very small amounts (even if it is hidden in the fine print on food labels). Of course when I am in a sensitive phase, a good curry can lead to my spending large tracts of the day on the toilet (very unproductive!).

Personally, I have concluded that I may also be sensitive to nuts including Cashews and Macadamias, but that may relate to the age of the nuts, and whether they have begun to deteriorate.

I am currently in a phase of being reasonable comfortable. I am back into attempting to recover my exercise program, which has been a shambles in the last three months. But I do find myself continuing to be anxious about what I eat, and the possibility I may be stranded somewhere with limited or no access to a toilet. From my point of view as a retired psychiatrist, it is clear I have developed a form of Agoraphobia. Technically I do know how to fix the problem; but it is always hard in practice. It is a strange world.

So, does TM make you more likely to get a gut that has food sensitivities? Or is it just the fact that being handicapped makes life almost impossible when you have food sensitivity induced diarrhoea? I would be interested in your feedback.