No analgesic can lessen the ache
No opiate can numb the pain.
No analgesic can lessen the ache
No analgesic can lessen the ache
No opiate can numb the pain.
4 years later and I finally have the answers I’ve been waiting for.
After seeing a pain consultant at UCLH, I was told I had damage to my abdominal wall, most probably as a result of my operation in 2013. This would explain the consistency in daily pain and the multiple admissions to hospital. The methods of dealing with this are somewhat complicated – there is no “cure” as such, as surgery runs far too many fatal risks, not to mention the risk of furthermore pain. I’m on medication for chronic pain, and hopefully by steadily increasing the dose if I experience severe pain again, it should make a considerable difference to my quality of life. The only downside to the medication is their sedative effect, so I spent 90% of my day resembling that of a zombie. I’ve now been referred to the complex pain team at UCLH, where I’ll undergo physiotherapy to help live with the pain, potential local anaesthetic shots to numb the pain of my damaged abdominal wall and ultimately methods which will ensure I don’t have to visit the a&e department as frequently, and hopefully in time, at all.
Over the past 4 years, I’ve gone through just about every single test possible for abdominal pain and the lack of answers completely destroyed me. I was living in a constant state of not knowing what I was suffering from, with doctors, or “specialists” in the private healthcare field not willing to act on anything. 2015 was by far the worst year of my life – 11 admissions to a&e over 12 months, where they could only manage the pain with opiates left me feeling at my lowest. Many people, healthcare professionals included, underestimate the debilitating impact of chronic pain. I’m always asked to rate my pain – how do I measure it, when I’ve experienced the worst kind this world has to offer? To this day, I’ve never measured my pain at a 10/10 because I’ve become so desensitised to the excruciating nature of a relapse.
I’ve always had people commending me for my bravery and strength, but ultimately this is 90% of the time a facade to help me survive. I’m so far from brave, compared to those who suffer from terminal illnesses and what not. There are days where I’m overcome with anxiety over how I’ll live with the pain when it gets bad, and how isolating the pain can be. There are days when I criticise myself for pitying myself when I’m so lucky compared to the plight of others. I’m filled with guilt at the sacrifices my family have made for me, and the pain they’ve had to helplessly witness, all the while encouraging me and supporting me. But I’ve slowly come to realise that it’s perfectly okay to feel sorry for myself here and there. It’s okay to feel like absolute shit. It’s okay to cry my heart out. Because pain is soul-destroying.
Ultimately, I survived these 4 years solely because I have an incredible support system. My immediate family and close friends have saved my life.
So, thank you. Thank you to the specialists at UCLH for giving me the answers I’ve waited so long for. Thank you to my close friends who’ve shown me so much support recently. Thank you to the friends who’ve become family. Thank you to each and every one of you who have contacted me on here and offered advice, encouragement and so much more. And thank you, a thousand times over, to my family. God bless you all.
It gets worse before it gets better, but it does get better.
“…suffering has been stronger than all other teaching, and has taught me to understand what your heart used to be. I have been bent and broken, but – I hope – into a better shape.”
– Charles Dickens, Great Expectations
There are times when my health brings me to my knees, both physically and mentally. Sometimes, it does feel like things will never get better – the risks, the waiting, the bad news, the symptoms… It’s hard to put on a brave face when you’re looking at the possibility of a future of pain worse than I’m enduring now.
But then I realise: other than my pancreas being a slight disaster as of recent, and my bile duct muscle failing to work properly, I’m pretty healthy. I can walk, run, go about my daily activities properly, albeit to some extent. My condition is not terminal. I’m not going to die. (Hopefully!) There are people out there, some much younger than me, who are going through traumatic experiences, unbearable pain and are suffering incomprehensibly from terminal diseases. Their chances of survival are increasing with new technology and research dedicated to finding cures, but they’re still low.
Family and health are the two most important things in my life, and ultimately, I have both. My body may not be working perfectly, but it’s working nevertheless.
The waiting game.
It appears I spend most of my time waiting for things to happen; currently, I’m waiting to be seen by a specialist in the field of Sphincter of Oddi Dysfunction at Harley Street. Sadly, the NHS route proved to be an absolute disaster; I spent two months waiting for the appointment to come through to see a consultant who had an “interest” in the field of SOD at a tertiary centre hospital, only for him to tell me there was nothing he could do about my condition due to a substantial “lack of evidence” excluding my pain. It’s safe to say that I was livid after that appointment. His reluctance to do anything about my condition pretty much summed up why I have no faith in doctors – for over a year and a half, my condition has worsened yet they seem to intentionally brush over my three year-long suffering.
Sphincter of Oddi Dysfunction is a tricky little condition; for one, the Sphincter muscle in my bile duct is so tiny that the best way to assess whether it’s working properly (or not, in my case) is to go inside and undergo a procedure. The problem is this procedure carries the risk of inducing pancreatitis; having already suffered a bout of it two years ago, I’m not too keen to risk any chances of having it again because the pain is horrendous. Pancreatitis also runs the risk of inflicting life-long damage onto the pancreas, creating furthermore health problems. However, having exhausted many medicinal routes to tackle to pain I’m in daily with SOD, I’m running out of patience and options. Being bombarded with pain relief doesn’t solve the issue and it appears the doctors I’ve seen are almost reluctant to cure it, opting for a safer, non-invasive method of treating the symptoms.
Another problem is the relapses. Whilst I was away, I suffered from an episode of severe pain which landed me in hospital – not ideal when you’re in another country. The relapses occur almost every other month, drastically impacting my life with its unpredictability. Doctors perhaps perceive my desperation for medical intervention as just another kid who comes in with pain in their stomach. They don’t realise how badly this condition has ruined my life for the past three years. They can’t imagine being in pain for a solid 18 months because they’ve never been there.
I know it’s wrong to desperately hope for something when I’ve already been disappointed so many times before, but I sincerely hope this consultant will give me some answers this time. If not surgical intervention then at least another option to consider would be preferable. Being written off has destroyed me, physically and emotionally.
So, hopefully, in ten days I may just get some answers!
2013: Laparoscopic Cholecystectomy. 2014: Pancreatitis. 2015-present: Sphincter of Oddi Dysfunction.
I’m stuck in a kind of stand off between myself and my doctors; they’re aware of how detrimental my condition is to my physical and mental wellbeing, yet they’re reluctant to take any action due to the potentially life threatening complications associated with it. It’s made furthermore frustrating by the fact that SOD is so rare in patients, especially at my age, too.
2015 was a year completely dominated by pain and I hope never to relive the experiences I endured that year again. When you’re in a situation such as mine, it’s incredibly difficult to adopt a facade of positivity and automatic “I’m fine” responses to the repetitive, rhetorical “are you okay?” In short; no, I’m not okay. It appears I’m fighting my body on a daily basis in the hope that it’ll stop trying to reduce me to my knees from unrelenting pain. But that’s not what people want to hear.
Thankfully, I appear to have inherited my parents’ strength and willpower; I am a survivor and I will fight this to the end, but its left me questioning – at what cost? I’m unable to go about my daily activities without being crippled by the pain at least twice during the course of the day. I can’t eat properly. The prospect of a (second) good university experience is hampered by pain. My anxiety is through the roof. It’s all a vicious cycle with no bright light – yet.
I’m a strong believer in things happening for a reason, by forces greater than us. There is a plan for me, I just need to trust in myself and those forces that I’ll make it through to the other side. It’s been a traumatising road these past few years and I’m incredibly tired of fighting, but I’m also desperately hoping this won’t continue for much longer and that this is just the final stretch in a (literally) gut-wrenching battle.
Throughout this ordeal, I’ve managed to retain a somewhat positive outlook on life fundamentally thanks to the strong support network of friends and family I have around me. I say this time and time again to the point where these words almost come across as empty but it’s thanks to my loved ones that I have come this far. My mother raised me to be strong, positive and almost certainly not a defeatist; my father raised me as a fighter. It is because of their support and unrelenting positivity not to mention belief in me that I’ve managed to make it this far. My true friends stood by my side and helped me battle against my health during my darkest hours, giving me the strength to fight when I thought I could fight no longer. I’ve come to know some truly wonderful people over the past few months who have completely changed my outlook on life, not to mention made me a better, stronger person. I cannot thank them enough for simply being in my life, and I know I’m blessed beyond words to have compassionate people around me. It’s because of these people that, during the dark hours, I can see a light. Perhaps it’s not the light at the end of the tunnel, but the promise of light is good enough for me.
So, amidst a sea of uncertainty, I’m going to give this illness everything I’ve got and battle through to the end, armed with a positive mindset and determination to overcome it before it has the chance to consume me. Forgive me if I backtrack every now and then, though.
On a final note, thank YOU to everyone who’s taken the time to simply read my blog, not to mention commenting on it, too. From my work colleagues to best friends to family friends: your support means the world to me. I don’t even need to tell you I love you; you already know. Without you, I would not be half the person I am today.
I’m so excited to start this post off with a positive! I’m 19 days into January and PAIN FREE! This is such a huge deal for me, I can’t even process it.
Okay, so I’m not 100% pain free; more along the lines of 70% but it’s still a dramatic improvement from 2015. Thankfully, it’s less frequent and doesn’t last very long either, meaning I’m not exactly disabled by the pain as I was last year. I’m still getting my head around saying last year. I actually survived 2015.
After well over a year of being seen by multiple private specialists in and around London, my parents and I lost hope in the private medical care system simply because nothing was being done. I’d had countless tests done, all coming back negative meaning the doctors had literally nothing to go on in order to make a concrete diagnosis other than my pain. Considering there was no visual evidence to support the pain, it was hard for them to figure out what was going on inside me and I think they pretty much gave up after increasing my daily pain relief and putting me on 3000 units of Creon a day.
During my hospitalisation in November last year, I was referred to a hepatologist at Royal Surrey County Hospital – a tertiary care centre. Because I wasn’t getting anywhere privately, we agreed it was best to get another specialist opinion and I had the consultation last week. (Downside to the NHS: everything takes at least a month or two to happen!) I was seen by and am currently under the care of the hepatology surgical team who informed me that the Sphincter of Oddi Dysfunction (SOD) diagnosis has been confirmed. WAHEY.
After having a procedure in December, they discovered slight inflammation in the bile duct which suggests a possible latent gallstone (from my laparoscopic cholysysectomy) had recently passed through. This would explain the recurrent attacks of excruciating pain which landed me in a&e so many times last year as well as my intolerance to codeine and morphine. The slight issue with SOD is it’s unpredictability; I have no way of knowing when another attack will take place or how destructive it will be. The surgeons have come up with a potential solution, one which has been brought up by a number of my surgeons and consultants: surgery. A cutting of the sphincter muscle will reduce it’s overactivity which is the fundamental cause of pain everyday, however there are many risks associated with such a rare and risky operation. Most importantly, it carries the risk of internal bleeding and pancreatitis. Having had one attack of acute pancreatitis already, I’m not too keen to have another one as it left me in hospital for a week, attached to a IV opiate drip. It also carries the risk of severely damaging your pancreas, another obstacle I’d rather avoid.
The next step is to be seen by a hepatologist consultant who will discuss his opinion on the surgery and whether the pros outweigh the cons. He’ll then liaise with the surgical team and they’ll come to their professional conclusion before consulting with me. It sounds awfully similar to my last consultation with my private specialists, but this time round I’m definitely more positive as they’re going to get to the root of the problem regardless of the methods they choose. Knowing what health condition I have and that something is going to be done about it has put my mind at ease already!
Clarity. That’s all I needed. And now I’m much happier and more optimistic, too. The possibility of a pain free future is looking increasingly likely!
I’m back! (Ish)
After what seems like forever, I’m finally getting into the swing of things again with regards to university assignments and blogging 🙂
The last time I updated you all on my health, it had a rather dreary tone to it; I was left in the lurch with what I was actually suffering from and there never seemed to be an end to the pain. Not all that much has improved with regards to the pain, but I have a diagnosis!
Sphincter of Oddi Dysfunction. It sounds complicated (and it is) but ultimately, it all boils down to the after-effects of having my gallbladder removed. My body is currently struggling to process the flow of juices flowing from my liver to my pancreas, and the muscle which controls the flow of pancreatic juices from my bile duct into my duodenum (eh, such technical terms) is overwhelmed with stress to regulate all these juices, so it goes into spasm. Thus, the pain hits. Every time the muscle spasms, the pain hits my left side, where my pancreas is located, my right side, where my gallbladder used to be and my shoulder; I’m still unsure as to why and how my shoulder comes into this. At times the pain becomes disabling to the point where I cannot move, sit or stand without doubling over but most of the time, it is a background pain which is awfully uncomfortable.
After having a consultation with my former surgeon, he agreed on the above diagnosis which is apparently common with people who have undergone a cholecystectomy such as myself. The only problem is how to tackle it!
Having explored every avenue possible including CT scans, MRI scans, X-Rays, ultrasounds and an endoscopy, which all came back with no indication of a latent stone or any obstruction to cause such pain, I was put on chronic pain relief. Having been on medication since the beginning of the year, both medical professionals and myself believe it’s time for something to be done. The next possible avenue to explore, however, is surgery. Nothing elaborate, a simple cutting of the muscle which is causing the agony. The only problem with this surgery is the risks involved; they’re slightly worrying! I have an appointment in 2 weeks time with a specialist in this area of surgery to discuss the pros and cons of the procedure with my parents and I.
So, thats the update so far! It’s not all doom and gloom anymore, despite being in pain for two and a half years 🙂
Ciao for now,
I always thought there was something romantic about fighting for someone. About winning them back, eventual happiness. But as I sit here with stones in my heart, where hope used to lie, I have come to the realisation that there is nothing lovely about having to continuously convince someone to love you.