Crohns disaster part 3, the plan that isn't a plan

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 battle through it, focusing on the end game and being ready for collateral damage along the way. 

After a flare up in August this year, my IBD Nurse got back to me and prescribed me a course of Entocort. Within two weeks I had the flare under control, and was feeling back to normal; I do have to caveat the “back to normal” with actually feeling like rubbish all day, but I’ll take that over being in pain!

The challenge comes when faced with the decisions we are forced to make, for me this comes with the plan from my consultant.

Here’s the plan…. it’s not a very cunning plan, and in fact it’s the same plan from when I was first diagnosed in 1992. It’s basically, Steroids to get the disease under control and then move on to biologic for long-term control of the disease.

Unfortunately, this plan is flawed, first of all when I reduce from 9 mg of Entocort daily to 6 mg, I can feel all the symptoms coming back: nausea, bloating, pain, and increase BMs. Secondly, the biologic of choice is Stelara which can take up to 12 weeks to begin working (if it works at all). This leaves me with at least eight weeks with neither the steroids nor the biologic offering me any protection. This makes me question the “plan”

The outcome of the plan, if I get on board with it, could lead me to being admitted to hospital, which considering the current status of COVID, I’d prefer not to be anywhere near a hospital. The other side of the coin is that I continue on steroids until the Stelara begins to work, the challenge is being immune suppressed with COVID still present.

My decision would be to continue with steroids until this medication kicks in, you have to take your chances with the long term effects of the steroids. My concern is right here, right now, and the reality of having that conversation in Covid times when I haven’t seen my consultant for almost 2 years seems unlikely. 

I find it difficult to believe that there isn’t a better plan to manage the disease in between medications; it appears nothing has changed in the 30 years since my diagnosis. It’s ludicrous that the NHS would spend £20K a year per patient on as an example, Stelara, but not consider a transition plan, from one medication to another.

As my disease is now actually older than my consultant (for reference he is a fantastic consultant) I will be pursuing the route that for now keeps me safely away from the hospital ward.

I do feel fortunate as I have access to IBDoc, which gives me the tools to report the level of inflammation directly to my consultant, for readers new to my blog, Calprotectin is a protein biomarker that is present in the faeces when intestinal inflammation occurs. Faecal calprotectin testing is helping to improve patient care. It prevents the need for unnecessary endoscopy procedures.

Please get in touch if you’re like me and are in between medications, I’d love to hear your stories.

https://twitter.com/IbdocMe

https://ibdocandme1.blogspot.com/

https://www.calprotectin.co.uk/

https://www.ibdoc.net/ 

 

Crohns disaster part 2, “Russian roulette anyone?

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 barrel that’s furiously spinning, sooner or later the game will be up.BI know the steroids offer me protection from a flare up, which in turn means I can vary my diet, I can eat out, I can have a little spontaneity in my life rather than making a flask of food to be taken with me everywhere I go.

The steroids offer me a false dawn - they tell me that I can have a ‘normal life, I can eat out when ever and where ever I want, they tell me that my energy levels will continue, at this pace, they comfort me with the promise that, I will always feel this good. However, that game of Russian roulette begins in earnest, reducing the steroids is loading the gun, the side effects kicking in is me spinning the gun barrel. This is where I put the gun down and come to my senses. I have just enough will power to throw myself back on to my rigid diet, and accept that fact I was only ever on day visits to the land of the normal people and that I need to get my act together and treat this disease as it is and always has been; a serious, life long chronic illness.

So, enough with the crazy analogies - I do have some quite interesting news. It all started with a phone call to my landline, I don’t know about you, but these days when my landline rings, it’s usually some poor soul trying to either tell me I was in a car accident, sell me green energy, or an automated system telling me my Amazon membership is up and I should handover all my passwords. For your reference, please don’t handover any of your Amazon details.

So the phone rings, I answer it with my usual indifference, however, this call was different, and this time it was my consultant. MY ACTUAL CONSULTANT!! I had to move fast from my deeply annoyed state, to my professional Crohn’s patient self, which I managed to do quite effortlessly. 

I know what you’re thinking; your consultant rang you on your landline? What kind of trickery is this? An NHS consultant using modernish technology to speak to his patients? Well I can assure you that’s exactly what happened, in fact, not only did my consultant call me on my landline, he delivered me the plan for moving from Vedolizumab to Sterala, and I don’t have to wait three months for the washout period, which would have resulted in a definite flare up, I can begin the loading doses of sterala in the coming weeks. 

I was so flabbergasted by this communication, I wanted to tell everybody in the house of this exceptional conversation, unfortunately, there wasn’t anybody home, I did try and tell the UPS delivery driver who rapped on my door just as I realized I was the only one home, but he was in a UPS hurry! His loss…. 

So, once again, I find myself on the Crohns carrousel of steroids, loading doses, blood tests, and landline conversations!!

Follow me Twitter: https://twitter.com/IbdocMe

Blog Ibdoc and me: https://ibdocandme1.blogspot.com/

                                  https://www.calprotectin.co.uk/

                                   https://www.ibdoc.net/ 

Crohns disaster!

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, although I felt the best I’ve felt in years, I had noticed my Calprotectin levels creeping up, “How did you know your Calprotectin

Levels were creeping up if you haven’t seen your consultant for over 18 months”, I hear you shout. The answer is simple; I use a home Calprotectin kit called IBDoc. I’ve written extensively about IBDoc and the life changing impact it’s had on the management of my disease in previous blogs. 

This does prompt to the question I think all of us IBDers ask ourselves, “why do I feel so well, if I have no symptoms” Of course, I have no idea why this is the case, I’ve had Calprotectin levels around 70 and felt absolutely awful day-to-day week to week, yet here I am, feeling fine, but with much increased inflammation levels. There’s loads of research around mindfulness, and meditation directed specifically at the gut to reduce symptoms I’ve also been reading lots of papers on CD disease and PTSD, but that’s for another blog.

Back to the flare-up, there are mitigating circumstances around this flare up, first up, and it’s always lurking in my blogs, its my inability to stay on my low residue low fiber diet, I’ve gone from strict compliance to around 70% compliance, which clearly isn’t good enough. Secondly, I believe the immune suppressants I’m on (Vedo) is no longer as affective as it was, these two factors combined resulted in a Calprotectin result of 900, increased urgency, pain in my tummy, that was followed by a temperature of around 39° for a day.

I knew it was time to take action, so now I’m back on the trail of the Lonesome Crohns disease person, ringing my consultant secretary desperate for an appointment, chasing IBD nurses for answers, chasing prescriptions from my GP. I’d honestly forgot how exhausting it was being your own PA when you have a chronic illness

The positives, if there are ever any positives around a flare-up, is that I’m able to test my Calprotectin levels via IBDoc this is a perfect example of how this technology works fantastically well for me. My last call protecting result was 925, after two weeks of being strictly on diet and the introduction of Entocort, my levels are down to 500, I’ll give it another couple of weeks and see where my 

Calprotectin levels are again.

You’d think I would have learnt my lesson by now, having CD for over 30 years, two resections and countless amounts of medications, The thing is, I think I’m smarter than my disease, I think I can out run it with diet and drugs, even after 10 years of relative remission, it’s caught up with me, it was always going to catch up on me at some point. I need now to pay it some respect and attention, I have to whether this flare up and get my inflammation under control with new medication, and little patients. 

Follow me Twitter: https://twitter.com/IbdocMe 

 

Blog Ibdoc and me: https://ibdocandme1.blogspot.com/ 

 

                                https://www.calprotectin.co.uk/ 

                                https://www.ibdoc.net/ 

IBD = Guilt

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 with all the hideous symptoms of IBD, and the punishing side effects of the medication, then throw in the countless hours spent being prodded and poked, the regular ? repeated MRI’s colonoscopies…. Let’s face it, the list is endless, then why on earth would I then feel guilty about having this disease? 

 

I mean, it’s not like I asked for the disease when they were handing out who got the chronic illness genes and who didn’t. I didn’t sign up for a life time of hospital appointments or the overwhelming feelings of anxiety waiting for my latest test results, but the guilt will not leave me in peace. 

 

The Oxford English dictionary defines guilt as, ‘a feeling of worry or unhappiness that you have because you have done something wrong’. 

 

Crohns disease isn’t the result of something I did wrong, nor is it something I should be ashamed of, but the feelings of guilt still linger. 

 

The things I feel most guilty about…. first up is undoubtably food. I’ve been on the LOFFLEX diet since 2014, the diet keeps me in remission, so you would think that I’d have the will power to stay on diet and not cheat. I’m 90% compliant, but as we know when using diet to treat CD you need to be 100% compliant, so the guiltometer is steadily moving upwards. The guilt about not having the will power is compounded when I come across the smiling happy people that seem to thrive with such restrictive diets as the SCD, or plant based diets, their, “it’s easy, everyone should do this” Instagram posts make my guiltometer practically ping. 

 

The guilt continues to flex with the way it affects everyone around me, particularly my wife and children. The fact that I sometimes can’t provide for my family, the financial inconsistencies of not working, the extra work my wife has to pick up, the fact that travelling is a huge challenge for me, constantly cancelling friends parties, feeling too unwell to watch my son play football or watch my daughter perform on stage in her latest role. I feel guilty about the close friendships I once had that no longer exist.  

 

Having IBD is a life-altering disease with no cure and without doubt you are going to feel many emotions. It’s important that you can discuss these feelings with your friends and family. It’s also important that if you have the ability to speak to a professional you will gain the tools to cope with the ups and downs it brings us. 

 

 

Follow me Twitter: https://twitter.com/IbdocMe 

 

Blog Ibdoc and me: https://ibdocandme1.blogspot.com/ 

 

                                https://www.calprotectin.co.uk/ 

                                https://www.ibdoc.net/ 

 

Has the COVID pandemic had a negative impact on the quality of care you receive from your IBD team?

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 face-to-face time we had with our consultant pre COVID wasn’t exactly ideal was it? In fact, the national average for time spent with an NHS consultant is 10 minutes. 10 minutes! no wonder I was always severely anxious pre meeting with my consultant.

 On reflection, I was, and am completely over the top when it comes to appointments with my consultant. As an example, I’d have my agenda typed out three weeks in advance of the consultation, constantly adding to it, re-writing it, running through different imagined conversations.

COVID has had that effect on me. I guess it’s having too much time on my hands to reflect on my CD and the care I receive. It’s hard enough dealing with the symptoms of this disease on a daily basis but when you throw the care, or lack of, you receive into the mix you can see why anxiety plays a huge part in A: the disease and B: the care we receive from our HCP. 

So how could the future look?

I believe that new tech should be a core part of IBD management, I’m sure if we asked the IBD community they would reflect this opinion. Imagine new systems of IBD care that are built on new technology that would be more patient oriented and less bureaucratic A perfect example of that is the tech I have used for the last two years, IBDoc which is an App based home faecal calprotectin test kit. 

This technology has completely changed the way I monitor my CD, and that ripple effect has implications on the way I interact with my IBD team: less calls, less invasive diagnostics, less time spent waiting and agonising for appointments. I wonder if a study was carried out on this piece of tech alone what the value in cost and resource it may save the NHS.

Tech tools that enable real-time 2-way communication between patients and health care providers will allow for a faster responsive service and should help to limit unscheduled, emergency appointments or needless visits to A&E dept. Delivery of app-based solutions is surely the next step in the medical tech revolution. This new tech will help to build confidence in patients and free up capacity for our time poor HCP. 

I don’t believe the AI is quite there yet, so using chatbots for conversations around medical issues makes me feel uncomfortable. However, Chatbots are being developed for IBD HCP to collect disease activity, update medications, and obtain information on FC levels. We have real time data as citizens using Zoom, Teams, or Skype for our work meetings and this can easily be applied to health care. 

Let’s wait and see what the tech future holds for us, I strongly believe we have a bright future on an otherwise overcast IBD day.

Follow me Twitter: https://twitter.com/IbdocMe

Blog Ibdoc and me: https://ibdocandme1.blogspot.com/

https://www.calprotectin.co.uk/

https://www.ibdoc.net/ 

Still going to the toilet 10 times a day even after a bowel resection. You could have BAM!

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 terminal ilium or in non-technical terms, the bit where your small bowel meets the large bowel. 

Although the operation was considered a success in terms of removing the diseased section of my bowel with no complications, I was now faced with a massive increase in toilet activities to over 10 a day with no formed stools. 

 

In my follow up appointments with many different consultants over the course of the next ten years, the answer was disappointing the same…” sorry there is nothing more we can do about your chronic Diarrhoea’ to add to this, I was also told not to take Imodium (loperamide hydrochlorideas) it could cause blockages due to the resection site. 

So, there I was, 2 bowel resections later, the toilet activates taking over my life with no hope for the future, as you all know this disease has the overwhelming effect of feeling complete hopeless. So, when I got a message from a fellow IBDer entitled “a possible answer to your chronic Diarrhoea’ 

I was intrigued to say the least. 

 

It was the first time I’d heard of the condition called, BAM (Bile acid malabsorption), which is extremely common when you have the terminal ileum removed as part of a resection. Based on my research and armed with a folder full of research, I made an appointment with a private consultant to discuss BAM and my toilet activates. 

 

If I’m being honest, I was upset after leaving the consultation, for a couple of reasons firstly, the consultant straight away suggested my increased toilet activity may be due to BAM, He was concerned that I’d never been recommend the medication for it. He suggested I have a SeHCAT scan, which is now the recommended diagnostic for BAM. He wrote up a prescription for a medication called colestyramine which is a powdered medication taken in the mornings. 

 

The second reason I was upset was that the consult told me I had been needlessly suffering with this condition for 10 years! Ten years! I know it's pointless looking back, certainly it's pointless looking back at your life with this disease, all the family gatherings, events, meeting up with friends cancelled due to feeling terrible or in my case not being able to leave the house due to BAM. 

 

Within a couple of day of taking one 4g sachet of colestyramine my toilet activities had reduced from 10 times a day to one a day!!! I couldn’t believe it and 10 years later I’m still on the medication, with zero side effects. I can leave the house freely without knowing where every toilet along the route will be. It's been a total liberation for me, I do and try and spread the word when I see posts about not wanting or not being able to leave to house due to diarrhea, of course this blog needs to be caveated with the fact not all increased toilet activity is due to BAM but if you’re in the situation I found myself in, make an appointment with your consultant to discuss BAM. 

 

Here’s a few useful links to BAM 

https://gutscharity.org.uk/advice-and-information/conditions/bile-acid-malabsorption/?gclid=CjwKCAiAyc2BBhAaEiwA44-wW1pRrol0lJeIe0UaMsLXBHTQpqauGUIqifhzsGMalV_xzZhkRGWl8RoCfg8QAvD_BwE

https://www.bad-uk.org/life-with-bile-acid-diarrhoea 

Follow me on twitter https://twitter.com/IbdocMe 

https://www.ibdoc.net/about-ibdoc/?lang=en

A Vaccine for Crohns

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 answer. 

 

However, there is potential light at the end of a very dark tunnel for us Crohns suffers, it’s in the shape of a vaccine that’s being developed right here in the UK by one of the most dedicated, knowledgeable and compassionate HCP, His name is Professor Herman Taylor and he has dedicated his life’s work to helping Crohns suffers. 

 

Before we talk about the Vaccine it’s important to understand how Prof Taylor and his team came to even consider developing a vaccine in the first place. 

 

Well, there is no cure for crohn’s disease and no cause is officially recognized however prof Herman Taylors team believe there is compelling evidence pointing to MAP as the cause of Crohns disease.  

 

https://crohnsmapvaccine.com 

 

MAP Facts 

 

MAP is a type of bacteria its rather convoluted name is, microbacterium AVM paratuberculosis or MAP, in short it belongs to a family of bacteria called micro bacteria, which also includes tuberculosis and leprosy.  

 

MAP is proven two cause Jones disease a form of inflammatory bowel disease affecting domestic lie Livestock that is strikingly similar to Crohns disease. 

 

It appears that we are widely exposed to MAP from the food we eat, (Livestock) to the milk we drink.  In fact, milk from infected animals often contains M A P and unfortunately the M a P is not killed off by the pasteurization process.  

 

MAP is also present in the poo of infected animals, MAP has also been detected in our rivers and in one study from Lancaster University their research suggested that MAP is also present in our water system drinking water and its even been detected in shower heads. 

 

MAP is incredibly difficult to detect in people because, get this, you cannot see it under an ordinary microscope, not only that, it’s very difficult to culture and grow. 

 

https://crohnsmapvaccine.com/treatment/map/ 

 

So, Crohns is not technically an autoimmune disease? 

 

It looks like us Crohns suffers have a wonky immune response to MAP, as When healthy people are exposed to MAP, their macrophages gobble up and digest MAP and their T-cells ‘see’ and eradicate any MAP-containing cells. When someone susceptible is exposed to MAP, it is a different story. Their macrophages eat MAP but cannot digest it and MAP remains, happily living inside our bodies. In addition, their T-cells are ‘blind’ to MAP; they cannot eradicate it and MAP is allowed to multiply unchecked, generating vast numbers of organisms inside the gut as well as other tissues (even inside the T-cells themselves). This is the person who develops Crohns Disease. 

 

http://crohnsmapvaccine.com/treatment/map/ 

 

How does MAP actually cause disease? 

 

MAP itself does not directly cause gross inflammation. Instead it initiates a cascade of events with disastrous consequences. The first is to cause dysregulation of the immune system, which then destabilises the gut wall, rendering it leaky. Leakiness of the gut wall allows it to be penetrated by other gut organisms (e.g. bacteria such as E.coli, yeasts and viruses) and irritant food residues. It is these secondary invaders and irritants that cause the massive inflammatory response which creates the Crohns pathology. The second is to damage and inflame the delicate nervous system in the gut wall, which makes the consequences of the immune dysregulation a lot worse. 

 

Immunosuppressant’s can reduce Crohns symptoms by lessening the inflammatory reaction in the gut wall (some may also possess some direct anti-MAP activity). Antibiotics like metronidazole can reduce Crohns symptoms by killing off other bacteria which invade the gut wall. Bland diets can reduce Crohns symptoms by removing some of the irritants which trigger more inflammation, but unless you treat MAP it, you are only treating the mechanism and not the cause of Crohns Disease. That is why we need this therapeutic and preventative modern Vaccine. 

 

http://crohnsmapvaccine.com/treatment/map/ 

 

I always look forward to the latest new on the Crohns MAP Vaccine, and just imagine for a second the positive impacted the vaccine could have on our lives. We are incredibly fortunate to have the world’s leading Crohns and vaccine specialist working together to deliver the vaccine. Unlike the COVID vaccine which has seen unprecedented cooperation and unlimited funds, the Crohns MAP vaccine requires funding at each stage of its development, so please tell your friends, neighbours and fundraisers to be part of the solution to this hideous disease. 

 

How to donate 

 

https://crohnsmapvaccine.com/fundraising/ 

 

 

Crohns and MAP FAQ’s 

 

https://crohnsmapvaccine.com/faq/ 

 

https://ibdocandme1.blogspot.com/