The Joys of Chronic Illness: Forced to Think About it Even When You Feel Well!

As promised I said I would update as and when anything changes with regards to the fun and games that is my journey with Ulcerative Colitis, or Pancolitis to be more specific, meaning my entire large bowel is affected.

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I need to start by saying, or even shouting because its exciting progress……… I FEEL REALLY WELL AT THE MOMENT! Despite my wellness the results of the colonoscopy I had last month were pants so my new consultant was quite perplexed as to why I am suddenly symptom free and feeling great. I offered up the explanation that the camera test was done before I added a secondary probiotic into the mix so perhaps it was this that has helped me and if the colonoscopy were to be repeated (please god no) then signs of healing should now be apparent. My Dr seemed to accept this and was supportive of my use of probiotics but still wanted to put a plan in place for if I ever did flare badly again in the future. This sounds fair enough to me.

Before I tell you about the plan I will just say a few words about the probiotics I am on as I know I will get emails from fellow sufferers asking about them. I will happily tell you which ones have worked for me but please check with your GP or nutritionist first before taking them, they may not be suitable for everybody and as always, what works for one may not work for others.

I take two types by a company called Living Nutrition. I take their ‘Sensitive’ culture with peppermint and lemon balm and their ‘Terrain’ culture with aloe vera and slippery elm. I was informed they work best taken together but to try to cut down on expense I started with one but it wasn’t till I relented and added the second one in that I felt significant improvements.

I buy mine from my local store Glossop Wholefoods , it’s always good to visit a reputable health store like Glossop Wholefoods as the owners and staff are so passionate about their business and incredibly knowledgeable too so it beats buying online really.

For anybody not local to Glossop or close to a Wholefoods shop that stocks Living Nutrition products I’ve provided links to where you can buy online.

Here is a ink to the company webpage for you to do a little research regarding the probiotics. https://www.livingnutrition.co.uk/

Here are the links to the two I use: ‘Sensitive‘ this is from Amazon (affiliate link) and the cheapest I can find for you. ‘Terrain’ is not available on Amazon currently so can be found here.

Whilst I am well I am opting to change nothing with regards to my care plan, however we need to have steps in place to ensure a quick treatment if I were to go into a serious flare again. The options I have been given are surgery, this would be Colectomy surgery and I have been referred to a surgeon to discuss this with later this week and the second is to try yet another drug therapy. Its new and showing good results but I am so wary of pumping yet more drugs into my body, they all seem to fail and make me worse in the long run. The drug suggested is called Tofacitinib and I really know nothing about it so its time for me to do a bit of research. If anybody reading this is on the drug or knows somebody who is I would love to hear from you, you can email me via the contact section on the webpage.

With regards to surgery, I am happy to be going to speak to a specialist to find out more and at least if it comes to that then I have made the first steps in advance and I will have equipped myself with the knowledge to make an informed decision.

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Thanks for reading!

Sending lots of healthy, happy vibes to you all.

Em xxxx

8 Comments Add yours

  1. I can relate to so much of this post. I have more than one Autoimmune disease among other chronic issues. I currently am struggling with my Celiac Disease and a flare up of Microscopic Colitis. Thank you for this informative post and helping spread awareness of chronic illness struggles (and joys).

    Liked by 1 person

    1. Thanks so much for your kind words. Sorry to hear you are struggling at the moment, I hope easier days are around the corner. It really is a roller coaster isn’t it xx

      Like

  2. recoverytipsandtricks says:

    Amazing post❤️

    Liked by 1 person

    1. Thank you! Much appreciated x

      Like

  3. So glad you are having some relief. It’s wonderful you have found some probiotics that are successful for you. I have Lymphocytic Colitis and when you find something that works you hang onto it for sure! Thanks for sharing!

    Liked by 1 person

    1. Thank you so much! That’s so true, you really do. Wishing you all the best in your journey xx

      Like

  4. Jaime A. Heidel - The Articulate Autistic says:

    I understand the “dear God, no” feeling about getting a colonoscopy. I found out I had diverticulosis last summer, and it was worth it in the end, but GAH, was it horrible! I wish you nothing but the best in your IBD journey.

    Liked by 1 person

    1. They are horrid aren’t they! I’ve had so many now I should be ok with them but I will always be a total wimp with scopes and avoid like the plague 😂
      Sorry about your diagnosis, I hope you are feeling well now. X

      Like

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