Chronic diarrhoea since childhood, NHS not interested

Posted , 2 users are following.

I'm 33 and female. Since I was a small child, I've had loose, urgent stools multiple times every day. My parents told me I'd grow out of it and gave me loperamide dissolved in cola to drink when we needed to go out. They never took me to a doctor. My dad and sister have similar problems.

The first GP I saw as an adult was very concerned that it was coeliac disease. I said that seems unlikely as it gets a bit better when I only eat bread and water. She ordered a blood test which was negative for coeliac and showed no signs of inflammation or vitamin deficiency. I was diagnosed with IBS and given mebeverine, which did nothing. I have no other symptoms of IBS, such as constipation, gas or bloating.

Since then, I've seen eight GPs, all of whom say not to worry about it and take loperamide as needed. However, loperamide is becoming less and less effective. The capsules take 4-8 hours to start having any effect at all, and even then it's not always reliable. If I need to go out around 8-9am I have to get up at 2am so I can take loperamide and then eat or drink something to get the morning's diarrhoea started, so it'll be done by the time I need to leave the house. Keeping a 7pm-2am sleep schedule puts a strain on my relationship and makes it difficult to have any hobbies. If I take the loperamide before bed it delays my morning bowel movements until later in the morning, leading to an emergency situation while out of the house.

One GP allowed me to try colestyramine when I suggested to her it might be BAD. The pharmacy only had the sugar-free version in stock, so they gave me that, saying they hadn't seen the full-sugar version she prescribed in months. It had no effect. All doctors I've seen since have dismissed the idea it could be BAD.

SSRIs (sertraline, paroxetine) made the diarrhoea much worse, and also introduced nausea and severe abdominal pain as symptoms, so I stopped taking them.

GPs refuse to let me try TCAs as "we don't prescribe those any more" or benzodiazepines as "that would lead to dependence." Once every couple of years, I use etizolam, bought years ago when it was legal, to deal with anxiety around major life events such as moving house. This doesn't stop the diarrhoeabut makes it dealing with it easier.

The most successful dietary intervention I've found is to restrict total fat intake to no more than 25g daily, out of a 2,500 calorie diet, and also cut out dairy and eggs. This makes eating out impossible. The low FODMAP diet made the diarrhoea worse, as did gluten-free. I find it difficult to eat enough to maintain a BMI of 18.5. This probably isn't helped by me being quite active, but exercise helps me to avoid despair!

Chronic diarrhoea is the only source of stress in my life. How do I get the NHS to take it seriously?

1 like, 9 replies

9 Replies

  • Posted

    With IBS you don't have to get constipation and bloating you can just get diarrhoea. Have you tried cutting out sugar and caffeine?

    • Posted

      I avoid caffeine like the plague. i haven't had tea, coffee, or fizzy drinks in at least 10 years. I tried cutting sugar but it made no difference so now I often eat it as a source of calories.

    • Posted

      Have you only seen GPs about this or have you ever been referred to a specialist?

      Either a gastroenterologist or colorectal surgeon? GPs are not specialists and if you are having this many problems you need to insist on seeing someone who is. You need to have further investigations by the sound of things particularly if you are struggling to maintain a normal BMI.

    • Posted

      GPs can sometimes try and stop you seeing a specialist but you have to be firm with them. Say you have chronic diarrhoea and you are losing weight and you need to see a specialist because you are feeling really weak and can not live a normal life as you are. You need to be firm sometimes.

    • Posted

      I have been firm, but it didn't do any good. The GP is larger than me and can physically remove me from the office. I don't see what I can do.

      I'm going to try some endo treatments in case that's the issue, as they're accessible without a doctor's visit.

    • Posted

      can you see another GP? Or maybe try and see a specialist privately?

    • Posted

      I've been taking norethisterone 5mg for three months and things are a bit better. I've gained 2kg! No periods means no uncontrollable flare-ups, although things are of course still generally loose.

      Loperamide continues to take several hours to start working, although I've discovered it's slightly faster (3-4 hours rather than 5-6) if I dissolve the capsule contents in water and drink it.

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