The smallest room in the house

You can’t hide from the fact that as IBD sufferers we spend a considerable amount of time in the bathroom. We are taught to monitor and examine our bodily functions in an attempt to grasp a hold on how our condition is going. Bowel movements (BMs) are a good indication of what is going on inside; from the frequency of visits to the types of visits we are having an on regular occurrence. Increased BMs can mean many things: inflammation, infection, bad diet, flare up triggers; where as a decrease in BMs can mean strictures and blockages. For myself, I’ve yet to encounter the latter two.

An increase in BMs is usually the first indication of a problem, either as a new patient (of course, coupled with many other symptoms and problems) or as a reoccurrence of old problems for a seasoned Crohnie or Collie. Right now, I am talking about BMs as if there is no medication or diet involved at this point (please, bear with me), going to the loo is a sure sign of something untoward occurring. This happens quite frequently in a patient who is suffering from a diagnosed (or undiagnosed) flare up. Usually the patient is prescribed steroids to help calm the internal inflammation and booked in for tests to assess the extent of the damage inside. There are also over the counter medications which help aid the pain and frequency of BMs: Imodium – a favourite of mine, loperamide hydrochloride which claims to “relieve diarrhoea in under 1 hour” has always helped me when I was in desperate need of not wanting / needing to go, yet again. Many anti diarrhoea medications are usually just rehydration solutions as much water is lost through the bowel in cases like this. Being hydrates is severally underappreciated in these cases. It should always be taken seriously.

On the other end of the spectrum is when you can’t go to the toilet. For the most part, medications used to treat Crohn’s and Colitis symptoms (long and short term) provide side effects of either giving you diarrhoea or making you constipated. I find that natural remedies help alleviate this problem better than any medication that can be prescribed or brought over the counter (OTC).

FOOD.

Most advice for constipation is the sentence under “lifestyle choices” which suggests “you increase your daily intake of fibre”. With IBD fibre is the last thing that you will want and if anything, will cause more problems that it will solve. Fibre is the enemy. They also suggest training you bowels into a routine of a bathroom pattern, so that the natural urge to go happens in a comfortable environment. Now, for a health person, this is all sound and solid advice, and it used to work for me before I got diagnosed. But as we all know so well by now, every piece of medical advice we had before has to be looked at differently now. Our bowels are not “normal, healthy” bowels that respond well to tried and tested, conventional therapies. And the nature of our conditions is determined by the body function of poo. The advice we need needs to be tailored to meet our specific problems.

Here is my wisdom, which I’ve considered and tested over the last year or so whilst being on Humira. So please, take this advice with a pinch of salt, as I was on an immune suppressant drug that changed alot of my diet within 4 months of my 13 month stint on it. By that I mean, I could tolerate, or was gradually able to tolerate, small amount of the bad things suggested to me in the beginning as a Crohn’s patient: such as some fibre (here, porridge) and fizzy drinks (very occasionally I had major problems with them). I was willing to adapt and able to test what worked best for me. I suggest that if you can, you do the same.

I now know that if I am sensible in what I eating I can limit my BMs to three times a day. If I have been lazy or just silly, that increases, and of course, is accompanied by pain, bloating and major discomfort for a couple hours. Sometimes, that was acceptable and I took responsibility for what I put in my mouth and what it did to my insides. But by the end, I learnt a great deal. If I was due to work the following morning, I would eat something abit fibrous the evening meal before in order to clean myself out so that accidents and pain didn’t interfere with my work that day. For me, the food that helped me go would be baked beans, tomatoes, eggs, salad, spicy chicken, sweetcorn, whole wheat pasta, uncooked cheese. Foods that would help me stay blocked up for a while longer would be white bread, pasta, cheese sauces (weirdly), potatoes, red meat, cream cakes, milk, and biscuits. I would know when I was off because the day before I would test out another new “treat” that helped keep me away from the bathroom until the middle of the next afternoon.

Now, why am I writing this? Well because, I’d like to think I’ve learnt something about my body and my diet in the last twelve months. And I’d like to add that sometimes, the Humira and the small time where I was still on Pred and underweight, I would eat alot of food because I was absolutely starving and mostly it wasn’t healthy. That was my regret of last year, being utterly stupid with food for the first couple months of Humira. It set me off down a bad path where it took far longer to get off it that it did to get on it. Without thinking about it, I subconsciously consider what I eat and how it will affect my butt the next day. I am a planner and sadly this way of thinking is ingrained in my mind and helps me plan when I need to, especially when I go away from home. I know better now for it, that I have safety foods that help me maintain a good distance from alien and foreign bathrooms. It’s that comfort zone thing, that without my own bathroom to let rip (so to speak) in, I really don’t know how I would be able to be as confident as I am; to not be scared and fear going out without knowing where the loo is 100% of the time. It’s let me feel abit more free at work and helped me relax back into my job. It’s ultimately helped me get better.

Please note that despite my advice, this is only for guidelines. This might not work for you. What triggers you off might be completely separate and unrelated to what I have described above. Please do not be disheartened at how long it has taken me to learn this, I think we are all always learning about our bodies and what foods and dietary changes help us best. I can honestly say that some things that used to sit well with me before now do not. That is mostly down to my coming off the Humira in January and being back on the Pred until a new stable medication is found for me. I am still learning and reaping the failures of my “try and see” method, even now. So, please, don’t give up! One day always passes into another, and we continue on.

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