UC and ME – who to believe? #2

It’s been about six months since my initial UC diagnosis, and I wanted to share the story so far and update on the battle with who/what to believe.

One of the most infuriating things about UC is that nobody knows what causes it, or how to cure it (at least not yet). It is commonly believed to be an underlying genetic thing (in the medical community) – so if you’re meant to get it you probably will at some stage or another. I don’t know how much I believe this, and often wonder what life would be like if I hadn’t gotten food poisoning just over a year ago and awakened the beast.

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But it’s easy to look back and say ‘what if’  – what I need to do now is look forward and say ‘Ok UC, you little son of b**ch – I’m going to OWN you’. (Beyoncé style)

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To do this, I’m still taking mild anti-inflammatories (3x tablets daily) called Octasa, and have a backup supply of suppositories if I feel a flare coming on and need some extra help. It still gets me down having to take tablets every night before bed, feeling more like an old lady than someone who should be their ‘prime’. However, I appreciate there are cases of UC a lot worse than mine – A LOT worse – and my heart really goes out to those people.

My confusion/annoyance currently comes from medical opinion vs holistic opinion, as I’ve had consultations with various specialists and it seems nobody really knows what you (as the patient) should do for the best.

My Dad is quite a fan of the ‘detox retreat’  – the whole juicing, exercising, meditating shabang! And as a concept I would quite like to try it too, but when I enquired with the clinic they go to out in Spain, I realised that just going for a detox wouldn’t be as simple as I thought.

It was suggested to me by the woman who runs the retreat (when I explained my UC diagnosis and current state of remission), that I am not in fact in remission at all and the tablets I’m taking are just masking the symptoms of my illness. It was suggested to me that should I want to come on the retreat I would need to come off my meds immediately and begin a strict two month diet before the trip, as well as having coffee enemas as part of the detox which were strongly suggested (despite me saying that this worried me due to my UC and anxiety about causing a flare up by aggravating this area).

I sat back with this email chain in front of me feeling very confused, I’d never felt better since taking the tablets, so how could my remission not be real? This therapist was in a way telling me everything I wanted to hear. ‘Come to Spain, it can all be cured with diet and lifestyle, we’ve cured UC patients before..’ etc

A tablet-free existence sounded like the dream, but in reality I knew that the medication I had been given was enabling me to feel like a human again and after three months of hell last year I didn’t want to take three steps back by coming off them altogether without a medical second opinion.

Luckily (very luckily) I was able to access free private healthcare through work, and not to knock the NHS but it made me feel SOO much better. Just to be listened to and actually get an opinion from a professional about what to do for the best was so up-lifting. I often feel with my local GP that I’m in an out in under 5 mins and they don’t ever really give me a balanced view. I know the great strain the system is under, but that doesn’t help me to feel any better when I’m freaking out or need to just talk to someone.

Needless to say, the private GP very much took offence to the advice the retreat had given me and was horrified that they’d suggest daily enemas for someone like me with a sensitivity to caffeine. In his words:

“If you know you have a sensitivity to caffeine and a cup of coffee or fizzy drink is likely to unsettle your tummy, you can imagine what a litre of caffeine inserted directly into your bottom would do??”

He had a point! He also cited that this therapist had no access to my medical records, no knowledge of my background and that her advice to come off my meds was simply dangerous.

He reassured me that if the NHS could cure UC with just food and lifestyle – did I not think they would be doing this instead of spending money on lots of medications and expensive treatments that the NHS really can’t afford? Again, he had a valid point – and it very much solidified the doubts I already had about taking a holistic route this soon into my treatment.

Whilst he agreed that looking after my diet with FODMAP, being sensible with my lifestyle and reducing my stress levels would all help to control my UC – at this stage it isn’t recommended for me to come off my meds. He also said that a week’s holiday in the sun was just as likely to give me the same boost in overall wellness as a retreat, and suggested a lot of it is just a placebo effect from focussing on yourself for a week and chilling out. He also stated that whereas my Dad (an overall healthy person with no underlying medical issues) would be fine to go on a detox, it wouldn’t be recommended for someone like me as it would only weaken my body in his view. However, he did commend me for not just taking the first solution I was presented with, and encouraged me to keep reading around the subject as much as possible to stay super informed.

So, I’m next seeing my assigned NHS Gastroenterologist in June (having not seen her since my initial diagnosis in December), and I’m keen to hear what she has to say about my condition and future prognosis.

In the meantime, I continue to live life as normally as I can and follow the FODMAP diet considerations I’ve talked about before. I also continue to read around the subject of UC and gut health, which I’ll talk more about soon. As well as my mission to become more mindful in the hopes it will help me accept my UC and be a happier person.

Thanks for reading.

XOXO

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