Living with a Chronic Disease – Tony Fagelman

Living with a Chronic Disease

Many people who see me or listen to me would never know I suffer (literally and figuratively) from a Chronic disease. To many I look fit and healthy (albeit maybe a little too slim, skinny if they’re not being kind). Work colleagues and customers know I am fit and active and do a lot of sport, (I’m a former trampoline gymnasts and now coach) so put my ‘look’ down to my healthy lifestyle.

And while all that may be true and my sport and fitness does keep me health(ier) actually, in truth, my weight and my ‘look’ is in fact down to forty-one years and counting battling Crohn’s Disease.

For those of you who don’t know, Crohn’s Disease is an Inflammatory Bowel Disease (IBD), and it causes inflammation anywhere in the digestive tract. This results in a myriad of symptoms including diarrhea, fever, fatigue, intense stomach pain and cramping, blood in the stool, mouth sores, reduced appetite and weight loss and much much more. And for some this will lead to hospitalization, sometimes surgery and in rare cases death.

In my case, I have suffered all of the above (well death is probably an over-statement, but I did ‘die’ on the operating table, so I’ll count it as marker against the list…)

And that not just it, Crohn’s disease is known as the disease that just keeps on giving, it causes eye issues, skin issues, early onset arthritis, bone problems and so on. And any and all of these can affect any of the Crohn’s warriors out there.

For, me, I seem to have run the gauntlet of issues since being diagnosed as a 21 year old. At the time I was extremely fit and healthy, having been involved in high-level sport for the previous 12 years. Following a lake trip, where I tried water-skiing for the first time I started with diarrhea, of course, the obvious answer was swallowing the dirty water that used to be synonymous with the UK’s freshwater system. However, after a few weeks, and associated weight loss, I was admitted to hospital and not long after that, I was diagnosed with Crohn’s disease. I was lucky, many warriors I know have taken years to get diagnosed, certainly back in the last century (ohh that sounds odd writing that), diagnoses was poor, especially in young people and especially women, with the symptoms being written off as growing issues, or hormonal or whatever… I was lucky, I had a consultant that recognized the symptoms, and I had proper tests and imaging to confirm the diagnosis. Even today though I read of warriors being misdiagnosed and prolonged waits for a full and definitive diagnosis. Unfortunately, the symptoms are easy to write off and assign to all the sorts of other ailments I mention above.

And that was that, I thought, I went onto steroids, and I believed, I was going to be done with it. I didn’t tell anyone except for close family and a very small number of my friends. It was an awful stigma, I mean, who wants to talk about bowel problems, especially not as a 21 year old male.  I kept quiet and got on with my life. Except I couldn’t do that.

I was aware if the disease, my brother’s business partner, (I say business, they ran a mobile disco, a sure thing in the 1970’s and 1980’s) was diagnosed with Crohn’s just 3 years previously, and he was hardly affected at all. Although he did make a meal of (I thought at the time, anyway), and I was roped in to do the heavy lifting of the disco equipment, I didn’t mind, I got free access to some fun parties, especially at university medical student parties, they were wild 😊.  But the seed had been set, pah, Crohn’s disease, nothing to it… oh how wrong I was. (BTW, my brother’s partner hasn’t had a single flare ever since that initial diagnosis and treatment, just goes to show how it affects different people in different ways).

At the time of my diagnoses, I was running my own wholesale jewelry business and spent much of my time driving to customers to sell and replenish stock. I was a one-man band. But now, committing to hours in the car was just not doable, equally I couldn’t rock up at a customer and immediately ask to use their toilets, that’s just not professional (or so I thought). So, my business came to a fairly abrupt ending, and I was out of work, looking for a desk job. Thankfully I was soon back on my feet and I ended up in a role where one of my colleagues had just been diagnosed with Ulcerative Colitis, another one of the IBD family. And we bonded over our shared issues and diseases. However, neither of us shared our issues with others.

The next 3 years were pretty uneventful in my Crohn’s life, one hospitalization (on Christmas day 1983) to remove a huge cyst that had developed on my posterior. And I do mean huge, it was the size of a tennis ball! I had put off doing anything about it, as I was in denial… Nothing wrong with me, just normal stuff. But Christmas day at my mums, she saw me ‘perching’ on my seat and insisted I show her ‘my problem’… next stop the ER and admitted for minor surgery to remove the cyst and 5 days in hospital. Blimey, that was a painful post-procedure treatment I can tell.

Roll-on 1985, I was in a new relationship, with my future wife and I had started a new business (with my fellow UC warrior and my brother), and things were going well, and then as life is wont to do, it started to go wrong. I was losing weight, feeling fatigued and the frequency of toilet visits was increasing dramatically. Of course I didn’t tell anyone, that wouldn’t be the right thing, just kept on going. Until I couldn’t, I ended up back in hospital and had the first of my surgeries. Approximately 20cm of my bowel was removed, including my Ileum. This was going to affect me later, although I didn’t know it at the time. These types of surgeries are typically ‘open’, no keyhole surgery options, so this generally means a pretty long recovery time. But being me, I bounced back (for those who don’t know, I’m a trampolinist) and pretty soon was back at work and at coaching.

That was it, I had beaten the disease, I was in remission and feeling good, I put back the weight I had lost and managed to get to an impressive (for me) 154lbs/11st/70kg. I also took up body building, I was determined to look better.

You see here’s another thing about a chronic illness, it affects us all mentally in all different ways. On the outside, I’m an extrovert, out-going, gregarious and some would say loud. I don’t show any stress, anxiety or other similar issues. However, I internalize them, my stress and anxiety comes out in my Crohn’s flares, or at least in my bodily reactions, which may echo a Crohn’s flare. When under stress, my body reacts, so I look calm and controlled, but my body is rebelling, especially my bowels. (If we’re in a meeting and I suddenly excuse myself, well now you know why). I also have a massive body dysmorphia issue. I don’t ever see a healthy-looking body when I look at myself, my view is distorted by my self-image. Psychologically, I know this, yet its very difficult to rationalize the truth from the vision I see in a mirror, or at least what I project in my minds eye. Whoever said, the mirror never lies, has never looked at one through the eyes of someone with a psychological disorder. It’s a similar effect that those with eating disorders may have, when they see themselves as overweight, when in fact they aren’t.

Its now 1988, I’ve been just short of three years without any major issues. Sure, the odd flare here and there, but it was managed by my Gastro team. I was subjected to major changes in the steroids I used to combat the disease, as I flared, the steroids were increased and tapered off as the flare was brought back under control, so on the whole, it was all manageable.

I could have made a fortune in the body building gym when some of my lifters heard I was on steroids, they really didn’t know the difference between steroids and offered me a £1 per pill… But being conscientious, and of course knowing I needed them to keep myself healthy, I declined all offers to share 😊, while of course laughing at the possibilities.

Business was going well; we were growing quickly, we were successful, and I had got married the year before.  As always, real life decides to intervene, I started to rapidly lose weight, I was fatigued, and I was spending a long time in the smallest room in the house/office… Over approximately 6 weeks I lost more than 40lbs (3 stone/19 kg). I was also in complete denial. I had a business to run, I had my Trampoline Club to run, I had my newly married wife to keep happy, I didn’t have time for a Crohn’s flare.

I visited my Gastro team for my 6 monthly check-up. My doctor was horrified, he didn’t want to let me go home, he wanted to admit me there and then. I persuaded him I needed to sort things out with the business and my Club, and of course my wife and agreed to come into hospital at the weekend (3 days away). In hindsight that was probably a mistake, but again, in denial that there was anything really wrong, just another flare. So having reluctantly set-up cover for both my business and coaching I went into hospital on the Saturday. One customer, after seeing me on the Thursday, refused point blank to talk to me until I got out of hospital and said he’d deal with my co-directors, he was that concerned for me…

On the Sunday, I was out of it, I was talking nonsense (well more nonsense than usual) and drifting in and out of consciousness.  It turned out my bowel had perforated, and it was leaking into my stomach and into various other parts of my body. Which isn’t a good thing. I was away with the fairies, I have no recollection of the next 24 hours but was told later that I was in so much pain I was drugged up to the eyeballs, they took me down for X-rays on the Monday morning, realized my bowel had perforated and rushed me into theatre. What would have been a fairly standard 3-4 hour operation took 7 hours. I died on the operating table and was resuscitated, had pints of blood and was eventually sent back to ICU with an emergency stoma, well two actually, as they brought both sides of my intestines out of body to ‘rest’ my gut. I spent the next 12 days in hospital recuperating.

I was due to have the stoma’s for 6-12 months, so I had to get used to them. I’d love to say that this was easy and was a really good way to live as so many before and after me have said. For many it was a hugely positive change in their body and the treatment of the disease.  Unfortunately for me, it was the worse period of my life thus far. I hated every minute of it. It made my body dysphoria worse, and I struggled every day with the pain of the burns on my skin, caused from leakage and the regular bag fails. My wife was amazing, I would roll-over in bed, dislodge the bag and have to go and shower, while my wife changed the bed. Unfortunately, a regular occurrence. At other times, my bag would lose its seal, and it would be a change of clothes and another trip to the shower. Coaching was a nightmare as I didn’t dare to support the gymnasts, and I was reduced to coaching from a chair at the side of the trampolines.

There were some funny moments. My trampoline partner and I were due to perform a number of demos of our comedy trampoline routine that summer, but we had to cancel them. We cancelled all but one, an event we had attended every year for 5 plus years and we felt we couldn’t let them down. So, we did the event. Suffice to say, while our act was a smash hit (as always) when I went to get changed, I realized that the stiches holding the main stoma had split and I know had about 6 -8 inches of intestine neatly coiled in my stoma bag, looking somewhat like a Cumberland sausage (look it up if you don’t know what it is). Somewhat alarmed by this, I asked my wife to drive me to the hospital, note, I was still in my comedy outfit (Superman suit, made even funnier by the fact I was barely 7st (90lbs) at this point). She drives me (at breakneck speed) to the hospital and while she goes off to park, I run through the ER and back up to the ward I had left just a few weeks previously.  Picture the scene a massively underweight Superman, running through the hospital, cape streaming behind me, cupping my intestines in a small bag… I’m sure a few people were amazed/traumatized by the sight! Thankfully, no harm was done, and although they wouldn’t stich it back in, all was fine, just my Stoma would extend and withdraw at times throughout the rest of its extant life…

After 7 months with the stomas, I was able to return to the hospital for surgery to re-connect me. Thankfully this went well, and although they did end up doing a further resection, I was now back in one piece with the parts back on the inside where they should be. These operations meant I had about 30% of my bowel resected. So, it was never going to be plain sailing after that.

As I said previously, my psychological state throughout this was not the best. I am not a depressive person, but this was truly a down point in my life.  Post-surgery I categorically stated that I would never have another stoma, even if the disease would kill me, I couldn’t bear to go through that trauma again. I have mellowed these thoughts over the years, 10 years on from then, when I had three children and much, much more to live for, I has changed my thoughts, although now, looking back, it would be hard to contemplate having a stoma again. Even though I know the technology is greatly improved and the many issues I had are no longer common, the very thought of it gives me the shivers.

Post surgery was when I had my big epiphany. I decided that I could no longer hide my disability, although at that time it wasn’t classed a disability. I decided that people should know about these hidden diseases, about how they change your life and how accommodations need to be made to allow us to function to the best of our abilities and also and more importantly, how our hidden disabilities do not define us and that we are still capable of undertaking the roles and responsibilities allocated to us and that we have chosen to take on. I joined NACC (National Association for Crohn’s & Colitis), now known as Crohn’s & Colitis UK, and became the PR spokesperson for the charity. Looking to spread our message and make people aware of the disease and what we do and how to support. As a young man, I was asked to visit newly diagnosed patients or patients who had recently had surgery to give them the positive views about life after diagnosis/surgery. I did feel a fraud, but I gave the pep talks, and they were gratefully received. I hope I helped the young men and women I spoke to.

It is from this point on that I have continued to speak up about hidden disabilities. While I am no longer representing Crohn’s & Colitis UK, I continue my support for them.

I was hospitalized again 3 years later in 1991 after another major flare but managed to avoid surgery, just a return to inflated drug use. And then the years of remission. I managed to go 17 years without any further issues (well specific issues at any rate, lots of complications, but no flares). My steroids were reduced and finally I came off them in 2000 after 19 years of permanently being on them. This felt amazing, I was pretty much drug free.

All was great until 2008, when out of the blue, yet another flare. I ended up back in hospital, but once again avoided surgery. Unfortunately, this was the start of a period of flares that dogged me and that were managed once again by drugs. By 2016 I had settled down once again, and although biologics had been considered (the new somewhat tailored and very expensive drugs), my new consultant decided against it. Probably correctly as it turned out as went back into remission, where I have stayed for the last 8 years.

While the main Crohn’s issues have not arisen, I did end up back in hospital and back on ICU. In 2018, I had a massive attack of Pancreatitis, caused by gallstones, which are a common complication of Crohn’s Disease. 17 nights in hospital, followed by surgery two months later to remove my gall bladder and then subsequent hospitalization as I got sepsis one month later. I have to say, Crohn’s warriors have a huge threshold for pain, given what we go through daily. But I have never experienced anything like the pain from pancreatitis. That was off-the scale. But I live to tell this tale.

One last thing, I mentioned above that I had my Ilium removed in my first surgery, the outcome of that is that I no longer store Vitamin B12. This causes a range of complications, such as fatigue, impaired functioning and so on. I have to have an injection every 3 months, and it’s a bit like winding a clock, one starts to slow-down towards the end of the three months and lose energy etc, then when one has the injection, it’s supposed to make us feel revived and ready to go. Well, that’s what’s supposed to happen, with me, it’s a fairly flat affair, I don’t get the up-swing of the injection, nor do I get the energy drop-off that I know other get. Its been so long since I haven’t had my Ilium I can’t recall how I felt previously. I just know, I need to take my B12 this way and if I don’t, I generally feel worse.

Where am I today… A fit and mostly health 63 year old, living with Crohn’s disease and all its complications. I speak up where I have a platform to do so, Enable_All, gives me that platform, along with the support I get from those external agencies we have partnered with.  I still get flares, I still have mental issues surrounding the disease, I still ‘hide’ those mental issues behind a mask of bravado and a smile. But I get on, I love what I do for Enable_All, I hope that it’s making a difference. And through my work at the ERG, I have been given the opportunity to talk to other ERG experts outside of Xerox and that has allowed me to talk about disability support and what everyone can do to improve awareness and actions for disabled people everywhere.  I look forward to the next few years and whatever they bring, I will face them looking forwards with positivity and the strength from my family, friends, colleagues and ERG family.

 

Tony Fagelman December 2024

 

 

 

 

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