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Flare and advice about next steps

Hi everyone,
I was diagnosed with Crohns 14 years ago when I was 17... I had a tough few years on steroids which didn’t help me and then went on a prescribed elemental diet followed by the specific carbohydrate diet which really seemed to heal my gut. Symptoms have been manageable over the years and I have just had to be careful with what I eat. I always referred back to the SCDiet if I needed to and that tended to do the trick after a few days of chicken broth.
For the past three months I have been experiencing what I think is a flare up, I had a bout of food poisoning or a virus in September and since then my gut just isn’t doing well and isn’t calming down no matter what I try diet-wise. I can feel my lower bowel inflamed and moving, gurgling and I am in quite a lot of discomfort most days, bloated abdomen and feeling of lots of pressure. I’ve been to the GP and they have run two lots of blood tests and stool tests and basically have suggested that it’s a Crohn’s flare as they don’t know what else it could be. They have referred me to a gastroenterologist but that could take some time to get an appointment. I feel generally ok in myself energy-wise but I feel really down, can’t sleep due to discomfort and it’s now been 3 months of being in pain most days and I can’t eat so I am rapidly losing weight. I’ve started taking CBD oil to try and help relax and sleep.
I’m not very good at reaching out for support but I just don’t know what to do next and can’t continue like this. Back when I was 21 I went on an prescribed elemental diet for a month which I do think helped to give my gut a rest... would a GP subscribe this? Should I get some other private tests done or does anyone have any suggestions?
I’m based in the UK.
Louise

  1. Hello there . We're really glad that you reached out to us- we know it is not easy to open up and we commend you for doing so. We're sorry to hear that you're experiencing a flare right now, and for quite a while now. I know that you mentioned being referred to a Gastroenterologist, so we really hope you're able to get an appointment soon as they will be able to discuss treatment options with you. Do you know when your appointment will be? In regards to a diet, each person living with Crohn's is very different in what foods help and don't help- especially during a flare. Has the foods you've been eating made any difference for you, either positive or negative? Thinking of you and sending lots of love your way. Please keep us updated with how you're doing. Gently, Ashley (Team Member)

    1. Hi Louise. Sorry to hear you're feeling so unwell. To be honest, there is very little I can suggest as you are still waiting to see a Gastro. I am surprised that you haven't had a Gastro consultant this whole time though? When you have IBD in the UK, generally speaking, you are then under a Gastro and an IBD nurse (I gather from the IBDSuperHeroes Facebook group that not EVERYONE has access to an IBD nurse).
      Everyone is different, so it's hard to ever advise anyone on what they should do. For me, a low fibre diet was good for reducing the frequency of stools, and it was useful again later when I had strictures. That said, I would often end up with nutritional deficiencies because it was so hard to have a balanced diet! I always recommend a food diary! https://inflammatoryboweldisease.net/living/personal-food-boundaries/

      - Sahara (team member)

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