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Has any one else benefited from this?

Posted , 6 users are following.

ibdhell12345
ibdhell12345

Hi,

I've been diagnosed with UC a couple of months ago. I had a few hospital stays, serious reactions to medications ( mp6 put me in hospital one of the times and asacol was given me when I just had IBS,  it caused a severe reaction and gas and may have contributed to me getting UC) . I am reducing on steroids for the second time and on sulphasolazine, which is giving me bad headaches. I have very bad joint pain and have been completely ignored by my consultant since it became diagnosed as a chronic illness and I went on the NHS once my insurance stopped.

In complete desperation I have been constantly researching and I have found something that is starting to help slowly. I went online and Googled ' Breaking the vicious cycle ' and then found Legal and illegal food list. Then I bought the book. I just read it yesterday and it really related to my situation. I've been sort of following the diet from the online list, but realised when reading the book there is a specific way to do it, hence I'm going to try it fully.

After 5 days doing the diet badly my symptoms have halved( I'm still bad though) and I feel a tiny bit in control for the first time in months. I'm also going to read the GAPS diet as it's supposed to be helpful also, continue with specific vitamins and get a second opinion on the Sulphasolazine. Also, my bloods showed a low vitamin D, which can be caused by gut disorders and can lead to joint pain.

I'm just posting this to firstly, see if anyone else has done this and is further along the diet than me for advice and also secondly, share my path in case it helps anyone else.

I'm no longer relying on doctors alone, all they are good for  it prescribing Russian roulette medications or indeed lying under this awful disease, but it makes sense to me food has contributed and if that's the case it will continue to damage and hence I'll never heal if I don't stop.

Keep fighting 

0 likes, 5 replies

5 Replies

  • Suffolk_Carole
    Suffolk_Carole ibdhell12345

    Posted

    Hi ibdhell12345

    Good to hear your diet is helping with your symptoms.

    Like you I was only diagnosed with UC a couple of months ago - obviously not as badly as you as I've not had to stay in hospital. I was prescribed mesalazine and this has worked well for me and I am lucky to be able to eat most things now with no bad symptoms.

    I've also been researching online to find out more about this illness and I now take a pro-biotic, Vitamin D & Vitamin B (high potency) and am more or less back to my normal self.

    If you look here:    https://patient.info/health/ulcerative-colitis-leaflet     and scroll down to the aminosalicylate medicines it says that    " The older one, sulfasalazine, had a higher rate of side-effects so is not commonly used these days."    which may explain the headaches.

    Hope you keep improving

  • gabe99
    gabe99 ibdhell12345

    Posted

    I would just add that I've found cutting out sugar and insoluble fibre can help.  Look up the difference between soluble and insuluble fibre.  Stress reduction can also help reduce symptoms, so it's worth trying some relaxation techniques that again, you can read up on online.

    Good luck!

     

  • Lauraaliceflo
    Lauraaliceflo ibdhell12345

    Posted

    Hello there

    I was in a similar situation - after a hospital stay and lots of courses of steroids I was put on Azathioprine but it gave me pancreatitis (was off work for nearly a month), then more steroids I ended up dependent on them and told I wouldn't be prescribed any more I really panicked as biologics would be the next step, so I tried the Specific Carbohydrate Diet. I'd read a lot about gut flora, bacteria, probiotics etc and I just thought the diet made sense so I seriously went for it, the into diet was pretty awful and the die off part I felt like I had flu for a day or two, but symptoms cleared up almost immediately. I did get some muscle pain in my back and shoulders but that went after a couple of weeks - I'm 3.5 months into the diet now, symptom free and just take a few supplements plus maintenance dose of balsalazide tablets (similar to pentasa etc) - I cannot believe changing my diet saved me!

    The diet works by changing your gut bacteria - by cutting out grains, sugars and starches it starves and kills the bad bacteria whilst the foods you can eat encourage good bacteria to thrive. I never thought I'd be able to stick to the diet properly - it seems so extreme I think when you first read it, but actually it's not that bad - you have to be a bit organised with what you've got in the cupboard, but batch cooking is a great help and I've made bread, cookies, muffins etc with nut flour and they're great, so it's not like you have to deny yourself!

    I don't know why doctors don't suggest it at the outset - I think it's worth a try for anyone with IBD.

    Really glad it's working for you - keep with it! :-)

    • ibdhell12345
      ibdhell12345 Lauraaliceflo

      Posted

      Thanks all.

      Laura,  How long do you plan to stay on it? They say 2 years maybe?  I had a set back today, think it's because I ate way to many nuts( before I knew you are only supposed to eat nut flour)  and it aggravated my pain hugely.

      Hopefully my symptoms will go with the diet too eventually,  but each day is still a struggle. I think use the doctors to prescribe medications and try to find natural solutions that work for the individual is the only way to survive! 

  • Maryjo
    Maryjo ibdhell12345

    Posted

    Hi , I've had uc for 25 years and just this year I discovered psyllium husk....(Lepicol with probiotics) and psyllium seeds bought at 'just ingredients' online on a 1 to2 teaspoon  ratio once or twice a day has been my saviour. Put in glass and leave for bout half to gellify.butyrate acid is released which is anti inflammatory . Have a research round Internet  on this. I also take various supplements but this is what has worked Bleeding I had has totally gone .
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