Intestines–can’t live with them, can’t carry them around with you in a bag. Actually, most people can live with them, and do so perfectly happily, but for us unlucky lot who find that our intestines malfunction on a regular basis, they can provide no end of suffering.
My name is Sophie and I’ve had IBS for more than half my life. Since the age of 12 I haven’t lived for more than a few weeks without suffering from one symptom or another, whether it’s constipation, diarrhea or just plain old pain.
Hopefully any IBS sufferer who reads this will realize that there are many other people out there who are dealing with the same day-to-day hardships and frustrations and fighting with the same dismissive doctors. And non-sufferers may begin to realize that IBS is far bigger, far more difficult to deal with, than they had imagined.
When the world tells us that it is all in our minds or that we just need to stop being obsessed with our bowels, we need to fight back–and this is my contribution.
But I don’t want this story to be simply a flood of self-pity. I hope that it is also, in its own little way, a positive story. IBS patients may suffer for years and years, but they still carry on with their lives and make it through. The amount of strength that this requires is very rarely recognized.
This is my story about the beginning of my life with IBS.
Up until the age of 12 I had, looking back, an almost idyllic life. We had a nice house in a nice town, I went to a good school, had lots of friends, went on holidays, all that kind of stuff. I was good at school, had the same best friend for years, and things were actually very easy for me.
I took my health completely for granted, but then most kids–and even most adults–do. I don’t remember having any real problems with my stomach as a young child. Sure, I would occasionally get ill, but I would soon recover and be none the worse for it. I certainly never had diarrhea or constipation, and I don’t remember ever even thinking about my bowels.
But things change.
Like many other sufferers, my IBS began with a severe bout of food poisoning. When I was 12 I tried to get to sleep one night with a terrible stomach ache. Eventually I managed to drop off to sleep, but in the middle of the night I woke up to find myself vomiting all over the bedclothes. I went back to bed and managed to get to sleep. However, when I woke up in the morning things had got worse. Although my stomach felt fine, I was so ill that I barely realized I had suffered with diarrhea during the night and stained the bedclothes.
The whole of the next day I had to lie on a bin bag to prevent my incontinence form staining the bed sheet, interspersed with vomiting up into a washing up bowl. I am sure you are enjoying reading this as much as I enjoyed participating in it.
Anyway, after a constant cycle of vomit and diarrhea, I felt better after the second day, had the weekend off and went back to school on the Monday feeling grateful that the whole nasty experience was behind me. Little did I know that those few days had probably sown the seed for years of gut trouble and misery.
I never found out what caused the food poisoning by the way–no-one else in my family was sick. The only thing I could think of was that I had a vague memory of stealing a tiny piece of newly-baked cake from the kitchen.
If it was that piece of cake that caused the food poisoning then it was the most evil scrap of food I have ever eaten. And if 15 years of IBS was my punishment for taking the cake without asking my Mum first then I would suggest that the punishment was possibly a little harsh, God, if you’re reading this too.
Over the next few years I began to suffer from frequent stomach aches and cramps. One night at a friend’s sleepover party I couldn’t believe how much my stomach hurt, but I thought it could have had something to do with the fact that I had spent the evening being jumped on and hit with a pillow (we were 12).
I also began to notice that there was a correlation between how my stomach felt and whether I had been to the bathroom recently. I had never suffered from constipation before but I soon realized that whenever I missed a day’s bowel movement I would feel very tight around my stomach and generally feel ill.
I was way too embarrassed to tell anyone about it. I just plucked the courage to buy some over-the-counter laxatives, which helped somewhat, although they also made my stomach hurt and tended to cause major diarrhea rather than a normally-functioning bowel.
It was not just constipation and pain I was suffering from. Occasionally I would have dramatic attacks of diarrhea accompanied by the worst pain and intestinal spasms I had ever felt in my life.
I would get perhaps ten minutes’ warning from my stomach, and then I would have to use the toilet three or four times, with breaks of between a few minutes and half an hour between each trip. During these breaks I would be literally writhing around in pain. Sometimes I wouldn’t even bother leaving the bathroom, the symptoms were so severe. When these attacks happened all I could do was sit on the toilet sweating and shaking and just waiting it out.
Immediately after an attack was over, I would feel almost euphoric–I had survived another one! I wasn’t going to be in agony for the rest of my life! I could leave the bathroom!
However, this euphoria would quickly fade as I realized that I had had yet another IBS attack, and they weren’t going away any time soon. I’d start sulking about how much suffering I had to go through just to live and soon I’d be feeling pretty sorry for myself.
I also suffered from a bloated feeling that felt like my stomach was being inflated with a bicycle pump, as well as an increased awareness of the workings of my intestines. I would sometimes massage my stomach and I could feel the air bubbles moving around, and I would find relief for a few seconds, but then the bloated feeling would return. It was very difficult to concentrate on anything or fall asleep as it felt so uncomfortable.
On top of this was the actual physical aspect of dealing with an illness that is all about poop. There were perhaps half a dozen times when my beleaguered intestines wood give up on the whole digestion situation and churn out the most sticky disgusting substance known to man. I would then have to strip, wash myself in the bathtub, and get dressed again. Kind of like being teenage version of a two year-old, except that two-year-olds get to grow out of it.
I summoned up the courage to go to the doctor when I was about 15. I remember saying I had difficulty going to the toilet , and then having to clarify that I meant bowel movements rather than peeing. He said something like “And what would you like me to do about that?”
I think he must have been asking whether I had a specific treatment in mind, rather than saying “Leave my office at once you lying malingerer,” but it wasn’t very reassuring at the time.
I didn’t really want to go back, and the embarrassment of picking up the laxatives from the chemist had almost killed me. I had sat in the chemist waiting for the assistant to call my name, silently urging her not to give away the contents of the little packet she would give me.
My newly acquired gut problems began to affect every aspect of my life, and started to ruin experiences that should have been fantastic. One of the most memorable was a school trip where we were taken to the south of France. We stayed in campgrounds and I couldn’t go to the bathroom for four days.
Another time was there was a boat trip. By that time I had achieved my constipation record–only four and one-half days, which is probably not much to a normal person, but I think that IBS guts are so sensitive that even a small digestive upset can cause problems. For me it meant guaranteed pain. On this boat trip the seas were fairly rough and at point we all got soaked as the boat struggled through the sea. It was a good kind of soaked though, there was no danger and everyone was laughing and it was pretty exciting and without the IBS it would have been a great experience. With the IBS it was just depressing, thinking about how good it could have been if my stomach hadn’t felt like lead.
I am sure my friend ended up thinking that she had badly misjudged me–apparently this mildly amusing, normal girl turned into the greatest grump imaginable if you took her out of school, moping around everywhere and not wanting to do anything fun.
The truth was, of course, that it is almost impossible to act normally when your stomach is killing you, let alone act like you are having the time of your life. In fact the acting can be one of the most demoralizing things about the condition.
No one can see your pain and so few people believe it. You are left with a choice of either pointing it out to people all the time, quickly getting on their nerves and sapping their sympathy, or pretending like there’s nothing wrong, sometimes for hours or days at a time.
The most miserable times were when the IBS would spoil something that I knew would otherwise have been fantastic. Day-to-day school wasn’t that much of a problem–if one day was spoilt then there was always another one. But when it’s a day that you’ll never get back, it’s damn depressing.
As I reached the age of 17 everyone around me started to plan their future. Most of my friends were going on to university and I had decided to do the same, with some trepidation at the thought of being in a strange place with strange people and a stomach that didn’t work.
Still it was a more attractive prospect than working in fast food for the rest of my life, so I was just going to have to do it. Of all the students in the country, worrying about their social lives and academic lives and debt, I imagined that I was the only one worrying about her bowels.
In my first year at university I was staying in the halls of residence on campus most of which had shared bathrooms. There were a few rooms on campus that had en suite bathrooms, but they were much more expensive and were very difficult to get.
There were three toilets on my floor, for about twelve people, which is an OK ratio, but not an OK situation. The problem was that the toilets were anything but private–there were gaps underneath the doors the size of wildebeest, the doors themselves were so small you could happily peer over them, there were showers in the same room as the toilets, and there was basically no privacy to speak of.
This was pretty alarming. I had to stay in the halls until the end of my first year, when students would move off campus into rented houses. How was I going to cope without becoming a laughing stock, “that girl who lives in the loos?”
Bear in mind that at this stage in my life the IBS was still a closely-guarded secret. I had not yet told anyone, even my parents, and I really didn’t plan to talk about it at all if I didn’t have to. Looking back I probably could have saved myself some heartache just by being honest, but at the time I was far too ashamed and embarrassed.
Quite how I managed it I don’t know, but I tried to avoid going to the bathroom when there were already other people in the room. Not a good idea for an IBS person, but that’s what I did. I would have been mortified if someone had heard me in there, especially during a terrible diarrhea attack.
Whether it is from diarrhea or constipation, an IBS sufferer often needs to spend more time than usual in the loo and this can lead to strange looks and even resentment from people who are waiting to use the bathroom. And then there’s the prospect of smells or the state of the loo you leave behind....Basically I was just trying to protect myself from laughter.
In the end, my first year at uni was not that bad in terms of IBS, but I had managed to keep my secret rather too well. No -one knew I that I had IBS, but no-one really knew me either. If I met someone in the corridors I would often try to avoid speaking to them.. Whenever there was a party or a group event I would make some excuse because I didn’t have the confidence to go out. By the end of the year I have done a very good job of cutting myself off from the world.
