Living with digestive problems

I’ve been contemplating doing this post for quite a while, but was a bit worried that it wouldn’t get a great reception because it’s quite specialised. But, after doing a bit of research, I was surprised at how many people I spoke to that had their own digestive problems. It’s not something that we tend to talk about, yet it’s a problem that can completely take over your life. Someone can look perfectly normal, but in reality be suffering horrendously or totally dependent on medications and feeding tubes to keep them alive. I wanted to make this as interesting and readable as possible for you, because I know it can be quite a complex subject but I think it’s something that we really should be talking about more. So, I spoke to a few friends who have very kindly shared their stories, which I will share with you, along with my own story. Let’s start with me!

My story

I have always had a ‘sensitive stomach’ for as long as I can remember. As a child I would often be tied to the toilet or unable to go for long periods of time, but no one really thought anything of it. Then, when I was 15 things went downhill rapidly. I was in severe pain most of the time, couldn’t tolerate a lot of different foods and was constantly being sick. I was losing weight quickly (which triggered an eating disorder and made things a lot more complicated) and becoming weaker by the day.

I had numerous tests to look at my blood, urine, poo and my digestive tract, but nothing conclusive came of them. Things never really improved and I was diagnosed with M.E, but my doctors weren’t particularly happy with the diagnosis because it didn’t explain my symptoms. Things plodded along and I had ups and downs over the next few years. But in 2012 things took a massive turn for the worst. At first I thought I had picked up a stomach bug. I couldn’t keep food in me, no matter what I ate it was going straight through me, and I was in a lot of pain. I began to lose weight again at a scarily fast rate and eventually saw a gastroenterologist (privately I might add, because the waiting times were ridiculous and I was going downhill quickly). She ordered more tests and, after several months wait due to my notes going missing, I finally had a colonoscopy and gastroscopy (basically they insert a tube down your throat, and up the other end, to take a look inside). The doctors found I had something called erosive gastritis in my stomach (the lining of my stomach is being eroded away) and inflammation in my colon, so biopsies were taken.

Waiting for the results was a nightmare. I was incredibly ill by this point and getting no support from the hospital, so my weight was now dangerously low and I was still struggling to eat. When I went back to see my gastroenterologist she was shocked at how ill I had become and admitted me straight to hospital, where an NG tube was inserted (a tube goes in your nose and down to your stomach, which you can be fed through). I had the tube in for about 6 weeks and because the stuff they feed you is so broken down, you are able to absorb it more easily than normal food. They also carried out more camera tests, but still couldn’t reach any conclusive answers. After 6 weeks the tube was taken out and I had to learn to eat again, starting with pureed food.

Since then my digestive system has never recovered. I was back in hospital earlier this year and ended up losing my appendix and gall bladder, but things are still no better. Since being diagnosed with EDS-HM type my gastroenterologist has started to come up with some new ideas. She now things I have a problem with the way the muscles and nerves work in my digestive system. It’s likely that my stomach doesn’t empty as quickly as it should, so food gets stuck in there and then doesn’t travel through my intestines so I get a backlog, making me sick and causing a lot of pain. I’m going to be starting a diet called the low FODMAP diet, which has been found to be good for people with IBS and similar bowel problems, so I’m really hoping it might relieve some of the symptoms. I am also waiting to see a specialist up in London, but the waiting times for that are crazy long.

I can honestly say that out of all my symptoms, my digestive problems are often the most debilitating. They consume all my energy, there are times when I am unable to work or study because I’m in too much pain or need to be near a toilet at all times and make socialising incredibly difficult. You don’t realise until you have problems with eating just how many social activities revolve around food! I strongly believe that my digestive problems have contributed to my eating disorder. Food makes me feel ill, so it seems reasonable to have developed an aversion to it. I’m pinning a lot on the specialist in London. If I can get some more concrete answers and perhaps even a treatment plan then maybe things will start to feel a little more manageable. But until then I just have to take life a day at a time and make the most of the days when I can make it to college, or go and see a friend.

Rachel’s story

I have over activity of the intestinal tract – not a very pretty name I know. Definitely not something at 17 I particularly want to be suffering with, but we can’t pick and choose these things! It’s not a glamorous lifestyle, but things could be much worse. I suffer from extreme diarrhoea, abdominal cramps, vomiting, fevers and weight loss.

Although it’s only one of several illnesses I suffer from, it is probably the hardest to handle/deal with. It’s EMBARRASSING. I honestly cannot stress that enough. It’s not exactly something you feel comfortable openly sharing with people.

It affects my social life massively. I used to cancel my plans, avoid going out. I ended up worrying so much that I would get diarrhoea whilst I was out that I ended up making myself ill. I couldn’t eat certain things; I didn’t want to eat for the fear of being ill. It was a struggle eating out with my family. I’ve lost a stone and a half so far – weight I never needed to lose.

I became very depressed, with a very low self-esteem during this period and finally plucked up the courage to speak to a doctor after putting up with it for over 6 months. With the support of my mum by my side, my doctor suggested some medication that I was very anxious about taking. I’ve had a long history of extremely severe constipation since I was born (evidently my insides hate me) – I was right about my concern. One tablet set me off track for nearly 3 weeks.

I am lucky to have such a supportive boyfriend throughout it all. He isn’t bothered at all and doesn’t find it embarrassing. Although I struggled about being open with him at first, after it all started happening in front of him he tried to make me feel as comfortable as possible, even if I was passing out and on the toilet for 3-4 hours at a time when I was with him. He would bring me a cold flannel and put it on my forehead and deliver sick buckets when needed.

Luckily I was recommended the Low FODMAP diet, which although very restrictive and challenging at times, it has made me feel 10x better and leading a healthier, happier lifestyle.

Molly’s story

From the age of 16 to almost 18, I lived with a type of stoma called an illeostomy. This is something I don't often talk about and in fact a lot of my friends (including some of those I made while I had my stoma) have no idea that I had one. For those of you who don't know what I'm talking about, an illeostomy is where rather than joining up to your large intestine, the end of your small intestine is brought out onto the surface of the skin on your abdomen & you wear a pouch over it to collect your poo - for want of a more eloquent way of phrasing it. Many people require them either temporarily or permanently for medical reasons. I only had mine for 20 months but found that hard enough psychologically. I found it difficult to hide the pouch under clothing (especially when it filled up after I ate) so had to wear baggy shirts & it often made embarrassing noises (like farts) at the most inappropriate/quietest moments.

I wish I could tell you how I learned to be at peace with it, but I didn't. I just counted down the days until I could get rid of it. I know some people who are open about their stomas but as a shy teenager trying to fit in at a new school I just couldn't be. I don't know what the point of me writing this is really as I can't imagine it being of much help to anyone with a stoma/thinking about having a stoma, but I guess what I want anyone in that situation to take away from this is that you're not alone and it's perfectly natural to have fears and insecurities about it. But you will get through it and hopefully having a stoma will greatly improve your quality of life/pain levels etc.

Until the age of 16 I wasn't able to eat anything. This made social occasions tricky as so many of them are centered around food. But family and friends adapted things for me. At children's parties I'd help the mum out with some jobs while the other children ate, I had my own special party bags made up without anything edible in them, family gatherings had other focuses as well as food, I always carried a book in my bag on holidays so I could read when my family stopped in cafés and restaurants... And I always made it clear to the people around me that I was happy with them eating in my presence and this seemed to make them more comfortable.

I currently suffer with a lot of bloating which I find really knocks my self-esteem and body confidence. I'm naturally skinny but with a big abdomen so am constantly nervous that people will think I'm pregnant. The only way I've found to manage this is to wear baggy clothes to try to hide the size of my stomach.

Everyone has experienced stomach ache and for most people it's just a fleeting annoyance. But for some of us it's more than that - when it's happening everyday, when it's so severe that it leaves you unable to straighten up or when it's so energy zapping that after it passes all you want to do is sleep. It's hard for people with healthy digestive systems to understand this. I can't really offer any advice regarding this - just speak to your GP to get the ball rolling with regards to trying to find out what's going on and how to lessen the pain. And if they aren't receptive then be assertive and tell them how much it's affecting your life. If all else fails see a different doctor. Things can be done to improve the situation.

Oh and wind and diarrhoea can be a problem for me too, but are such embarrassing things to acknowledge, let alone talk about! I'm sure it's not just me though. Yeah, I don't tend to talk about it.

It's a bit complicated but I'll try to summarise it for you. When I was a baby my small intestines telescoped in on themselves (called an intersucception), which cut off the blood supply to the majority of it, so the tissue died. In a series of operations I had all but 30cm of it removed. No one ever knew why the intersucception happened but the condition I was left with was known as short gut syndrome (also known as short bowel syndrome I think). I didn't have enough intestine left to absorb the nutrients from food so rather than eating I had to have all my nutrition in a liquid form which went through a tube into my heart and from there was pumped around my bloodstream. If I tried to eat anything orally (even tiny amounts), I'd vomit it back up.

As a teenager that method of intravenous (into my blood steam) feeding caused irreversible liver damage, which led to me receiving my small bowel, liver and pancreas transplant at the age of 16. So the doctors could keep a close eye on my new bowel (to make sure there weren't any problems with it such as rejection), they formed my stoma in the same operation. That meant they could easily see my transplanted bowel without having to put me through any invasive procedures. In the first couple of years post transplant the risk of rejection is at it's highest, so once the chances of that lessened they agreed to reverse my stoma.

I still have digestive problems now (although obviously to a much lesser extent than pre-transplant) but so far no one has come up with an explanation for them and various tests haven't shown anything. So at the moment it's thought to be IBS and/or food intolerances - but we still haven't worked out what the food triggers are/might be.

Kelsey and Alex’s opinions on the difficulties for people with Coeliac disease

Before being diagnosed with coeliac disease (an allergy to gluten) you are likely to experience symptoms like pain, diarrhoea and nausea. However, once you are diagnosed and know that you need to cut gluten out of your diet, the symptoms should completely improve.

Some of the difficulties associated with a coeliac diet are the fact that gluten free foods are so much more expensive than normal food! For example, a loaf of gluten-free bread, which is usually smaller than a normal loaf of bread, can be twice the price! This can make it very difficult to eat on a budget. However, if you are diagnosed with Coeliac disease you can get some food on prescription, so definitely ask your doctor or dietician about this. It can also make things more difficult if you decide to eat out. Places are getting better at offering gluten-free options, but generally there will be very little choice and gluten-free foods don’t often taste as good as the real thing. I’ve found it’s always worth ringing somewhere in advance to ask them about their gluten-free choices if you can.

So, there we have it. A few different stories for you, all from people with different digestive issues. I really hope that reading this will help you in some way. If you’re lucky enough to have a healthy digestive system, then hopefully this will give you an insight into what others might be going through, and if you struggle with digestive problems yourself, I hope you will feel a little less alone.

Have you found this post helpful at all? Do you suffer from digestive problems and have any advice for someone who might be reading this?

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