So what are you supposed to do? Where’s the handbook? Where’s the guiding hand that shows me how to integrate back into society? Where’s the blood tests or the psychologists to tell me, yes, you are in remission, and yes you can rejoin society after 12 years of utter exhaustion brain fog nausea bloating etc.So this is me in August 2022, I feel alright, that’s right you heard it, I actually feel alright, not in the sense that I can run a marathon, and not in the sense of that 40 year old I left behind 12 years ago, where energy and brain power was never an issue. As the saying goes, this is ..read more

  So here I go again on my quest for a better life with my Crohn’s disease . I have a consultation this evening with a registered dietician; the topic of the conversation will be the IBD AID diet. The IBD-AID is founded on the principles of nutrition and the immune system, and updated with current research on the human microbiome. Research has shown that IBD patients have an imbalance of gut bacteria, which contributes to inflammation.  This diet helps to restore balance between helpful and harmful bacteria while promoting good nutrition. The IBD-AID has three phases (listed elsewhe ..read more

In my 30 years of dealing with Crohns disease, the dreaded stricture has been the culprit behind my two surgeries. In fact, one of the most common complications of Crohn’s disease is the development of an intestinal stricture.  An intestinal stricture is a narrowing in the intestine that makes it difficult for food to pass through. At least one third of people with Crohn’s will develop a stricture within the first 10 years of diagnosis. If you are newly diagnosed or want to know more about intestinal strictures, read on to learn about what causes strictures and how they can be tre ..read more

I’ve often pondered the term ‘Warriors” when used in the context of IBD, there’s loads of Facebook groups with titles like IBD warriors support and awareness, Stelara Warriors, Entyvio warriors, you can even buy branded IBD warrior gifts! If I’m honest, I have been a little glib when it comes to declaring I am an IBD warrior, on reflection that’s because I’ve not had a serious flare for the last ten years, as I have been managing my CD with a combination of Meds and diet.  However, the warrior term becomes center stage when faced with the medication options. We IBD veterans have to batt ..read more

This is part two of my Crohns disaster blog, as I write I’m feeling the familiar side effect of entocort, I have developed oral thrush (nice) my tongue feels like I have been rubbing it on coarse sandpaper, which in turn means eating anything is a form of gastronomic torture, along with the cracks either side of my mouth, the head aches, nausea, and low mood, I think I may have a full house of entocort side effects, Bingo!! I had forgotten about my dysfunctional relationship with steroids, it’s not dissimilar to Russian roulette, if we see Crohn’s as the loaded gun, and steroids as the barr ..read more

Oh no! What an absolute disaster, after 10 years of some sort of remission, I am having a full on Crohns disease flare-up, stomach pains, fatigue, nausea, bleeding… If you know you know. I was going to start this months blog by discussing how well I’ve felt over the last 18 month, what does that mean to me in Crohns disease terms? Well, zero visits to my consultant, zero conversations with my IBD Nurse, less fatigue and no brain fog! Like actually zero brain fog! And finally, Zero trawling through Facebook forums, looking for answers I know I won’t find. However, if I’m being honest, altho ..read more

On a scale of 1 to 10, 10 being the worst, how guilty does having this dreadful disease make you feel? Over the years I think I’ve definitely been a solid eight when it comes to feeling guilty about how IBD has affected me and my family. Along with the ensemble of symptoms, weight loss, diarrhoea, nausea, crippling stomach pain, fatigue, mouth ulcers, anaemia, joint pain, inflammation of the eyes, and then there’s the side effects of the heavy medication, joint pain, respiratory problems, numbness, tingling, liver problems, the list sometimes feel endless.     So, you would think wi ..read more

Would seizing the moment and utilising the powerful technology at our disposal to create better outcomes for IBD patients? I’ve had CD for 29 years, and I can honestly say, apart from a few exceptions which I will come on to, the way we use technology hasn’t really change in all those years.  The COVID lockdown has been particularly hard for us IBD patients; increased anxiety due to consultant appointments being cancelled, medical procedures like colonoscopies being postponed, the time we have with our consultants being limited due to the huge back log of cases, and let’s face it, the ..read more

This month’s blog is about my needless ten-year struggle dealing with chronic diarrhoea and how I tracked down a simple medication that stopped my relentless, unnecessary trips to the toilet.  Before I begin, I need to put the follow in context, it was the late nighties, the Internet had just begun to permeate our lives and I had started to use it as a research tool as well as connecting with other IBD sufferers     I’ve had 2 resections in my 29-year battle with Crohns disease, for this post I’ll focus on the second, a resection of the small bowel, removing the termi ..read more

As vaccines are brought to our attention due to COVID 19 I thought I’d shine a light on the vaccine being developed for Crohns disease right here in the UK    We all know the simple fact that there is no cure for Crohns disease at the present time. I’m sure every person with Crohns has spent many hours searching the internet for a miracle cure, and let’s face it, some of the remedies that sellers are suggesting go from the obscure to the downright bazaar. Tree bark! Hook worms! (Disclaimer, I have myself tried hook worms), which on reflection shows how desperate I was to find the ans ..read more