health – Chronic musician

Health update – Gallstones

Around 6 -7 weeks ago I started experiencing worsening stomach pain that didn’t feel like my usual crohns related stomach pain. After a week of the pain getting slowly worse and very nearly giving in and going to A&E I decided to book an urgent appointment with a GP.

The GP was really great, he was really thorough, listened attentively to all of my concerns and my long history before performing an examination and deciding it seemed to be a gall bladder or liver issue. Due to the extreme nature of my pain and the fact that I had a rapid heart rate and a slight temperature, he decided to send me into the surgical admission unit at a big hospital.

They did some bloods and checked me over and agreed that it was very likely to be gallstones and sent me home with a referal for an urgent ultrasound. I got the ultrasound a few days later and a nurse called me that afternoon to tell me I have a nice big stone and need surgery to remove It along with the gall bladder. I was told I would see a surgeon within a couple of weeks to discuss surgery and decide the best approach for me.

Unfortunately a couple of weeks later I experienced really severe pain and it was decided by me and my family that I needed to try and go to the hospital. We attended A&E and after a very long night I was put on the list for the surgeons to review me. They told me that I definitely need my gallbladder removed but that because of my other health conditions they didn’t feel that it would be possible to do the surgery during that admission. The plan was supposed to be that I would remain there for a couple of days and get good pain management from the pain team, and that I would only leave once the pain was under control, but unfortunately this was over ridden and I was sent home as soon as the pain team had spoken to me, but under the impression that my appointment had been speed up and I wouldn’t have to wait much longer.

However I still dont have an appointment. I phoned the nurse line yesterday and was told it’s normal, and that although my appointment had been expedited, they hadn’t actually made the appointment yet. I was advised to wait another week and then call the appointment booking team and ask them. I was also told that I am not yet on the surgical waiting list, despite being given the impression that I would be on it from the date I was referred to the surgeon as seeing the surgeon is just a formality, and the list is quite long so it was very unlikely I would have been called up for surgery before I was the surgeon in out-patient clinic.

Unfortunately I am still having a hard time with pain. I have been told that most people with gall stones experience intermittent pain and flare ups with breaks in between them but unfortunately my pain is constant and persistent. I am currently on very high levels of prom relief that I have worked out with my GP, but the pain still frequently breaks through those meds. It is having a massive impact on my quality of life, I am unable to sleep more than a few hours at a time without waking up for pain meds, and I am finding even the most basic tasks very difficult. My appetite is all over the place and it is very difficult to juggle the dietary restrictions for the crohns and coeliac along with the suggested changes for gallstones. I am finding though that for me, it doesn’t seem to be high fat foods that are causing the issues, and it seems much more random, I am keeping a food and symptom diary to help keep track.

I have been told several times by GPs and the hospital staff that I should be a priority, so I am hoping that this will be followed through, I will definitely let them know how much this is impacting my quality of life and the rest of my health issues, and point out that I am at a disadvantage to other patients, because most people have the option of going to A&E and having them consider doing the surgery urgently if things get too much whereas it has been made clear this is not an option for me, also the size of my stone means I am in severe and constant pain and needing a lot more pain meds than I am comfortable taking long term.

Its never nice getting a new diagnosis and finding out you need surgery again, but looking back over the last year or so a lot of my symptoms and the things I have been struggling with could be explained by the gallstones. If this is the case, I may feel a significant improvement in my overall wellbeing after my surgery and although I am trying not to get my hopes uo too high, I can’t deny its a little exciting to think some of my symptoms might actually have a fix. Until then I am just resting as much as I can and using all the tools I can to look after my mental well being as much as possible to.

Alternatives to “Get well soon ” for people with chronic illnesses and disabilities

When we hear that someone is unwell, our first instinct is to wish them well, and hope that they recover quickly. This means a common response to someone saying they aren’t feeling too good is “get well soon” or ” I wish you a speedy recovery”. For most common ailments like the flu or a “normal” headache, this is a totally appropriate and often appreciated response.

This changes when the illness is chronic, and especially when the illness is known to be permanent and incurable. When you know that your illness will not get better, it can be jarring to hear “get well soon”, especially from people who you know well and have explained your situation to, but, its such an ingrained response, it can be very hard for people to know what else to say. Not responding or not wishing someone well can seem cold and uninterested, we want to show someone we care about them and want them to be OK, but sometimes the harsh reality is that they aren’t going to be ok for a very long time, and sometimes they won’t ever be truly OK again.

In this situation it is so tough to know what to say, so I would like to share my thoughts on what I would like people to say/ what I think would be helpful. As always, these are my thoughts and my thoughts alone, and do not apply to everyone, I speak for myself and myself only, not the whole chronic illness community, so be open to hearing other suggestions and/or opinions from the people in your life.

Suggestion one – I am sorry you are going through this, if you ever need to talk about what it’s like for you to deal with this, I will listen.

This lets someone know that you are aware that what they are going through is hard, and offers them a safe space. Very often people with chronic illnesses have to mask and pretend to be ok when really they aren’t, offering someone the chance to have an open conversation about what they are going through, with no masking and no worrying about being judged can be a huge gift. Only offer this if you can follow through, and remember that this is an opportunity they probably don’t get very often, so make sure it remains a safe space.

Suggestion two – I know that I cannot take away your illnesses, but is there anything I can do to make your burden lighter?

This shows you are aware that you cannot fix the person or their situation, but that you are willing to try and make it easier to bare. Asking what you can do allows the person to pick the thing they feel they need the most or are most comfortable allowing someone else to deal with. This could be something as simple as cooking them a meal, putting the hoover around for them, picking up a medicine from the pharmacy or picking up a child from nursery or school. Sometimes when your mind is overwhelmed with big things, the little things become a huge burden, and if someone can ease that burden it makes things feel so much more manageable.

Suggestion three – if they are cancelling an activity because they are too sick or there is a risk of the activity making them sicker, ask about an alternative rather than just not inviting them next time.

This is something I really appreciate when people do for me. Its one thing to miss an event because you have the flu, where you know you will get better and be able to join in next time, but when you are unable to join in because of chronic illnesses, you are very aware that you might not be able to join in for weeks, months or years at a time. There might be some activities you will never actually be able to do. I have had so many people give up on me, including people I thought understood, because I kept having to say no to specific activities, but everyone else wanted to keep doing them. Eventually they just stopped asking me, or making any attempt to make things accessible to me. People often think that if they can’t see why something is inaccessible, or why I am too sick to do something, then I am just making excuses. I often get told “get well soon and maybe next time you can join in”. I would absolutely adore it if sometimes they said “I’m sorry you’re feeling so sick, what if we come over and have a PJ day and watch movies all day” or ” I know eating is challenging for you, what if we did something crafty instead”. There are many ways hang outs can be made more accessible for your sick loved ones, it takes a little creativity sometimes, but it can be done. I am not suggesting that every hang out needs to be tailored to that person, but even one in every 3 or 4 hang outs being something they can join in with is so much more welcoming. Sometimes they may feel so sick that they cannot think of anything they feel up to doing, but thats ok, the fact you ask them will mean a great deal to them.

Suggestion 4 – I know this is really hard for you, and I know I can’t make it all better, but I have your back and you’re not alone

This is so powerful. Just knowing that someone has your back, that they understand things are hard and it’s not going to scare them away or make them think differently of you is so, so powerful.

Suggestion 5 – Do you need support to access medical help?

While there isn’t always something a doctor can do for chronic illnesses, if someone is having an acute flare of their condition and seems like they may be struggling beyond what is considered “normal” for that person, asking them if they need support to access medical care can be really helpful, provided you are respectful of the answer. I have had times where if I had access to better transport, I would book a GP appointment to get checked out , but because I am stuck with buses, I will wait things out and hope it doesn’t escalate far more often than I should. For me, going to the doctors and especially going to a hospital is something I do when I have no other choice, and the alternative is going to A&E because its heading towards and emergency. If someone was willing to help me get to the doctors, I would book more regular appointments to get check ups and discuss anything concerning me before it became an urgent issue. On the other hand, some people will ask me about going to the doctors when I am just experiencing normal aspects of my conditions and there is nothing a doctor will be able to do that I can’t do myself. I never mind being asked, but some people get really pushy, and this can be distressing.

Suggestion 6 – Is there anything I can get you to ease your symptoms?

This one I personally like. People are often quite quick to say to me “sorry there’s nothing I can do for you”, but they often haven’t actually asked me or thought about the types of things that they usually see me do when I am in pain. Some people though are very good at it, for example, I use a heat pad almost all the time to ease my pain, so , if I am in pain and I don’t have my heat pad, my fiancé will go get it or ask if I want it. My mother will ask me if I want my heat pad or a hot water bottle. This is a small thing, but it really helps. Unless you know someone very well or know what they need for specific symptoms its hard to anticipate needs like this, but what you can do is ask them if there is anything you can get to ease symptoms. These may include getting a heat pad, ice packs, pain medications, ginger tea for nausea, a blanket, a glass of water or something to eat, or a comfort item like a favourite teddy or comfy hoodie. These small things make people feel seen, and show that you are actively trying to ease their discomfort and care for them.

The biggest thing I would say with any of these is be consistent. Too many people with chronic illnesses feel like they are forgotten about after the first few months of illness. When you first get sick, you are often surrounded by people who want to help. There are visits and calls, gifts and meals, accommodations are made and everyone checks in to see how you are and what you need. After a while though, people go back to their lives, assuming that you are either better or “used” to the condition by now. The offers of help get further apart, people stop checking in, and instead of making accommodations people tell you to stop being lazy and to stop making everything about you. People actually get frustrated and even annoyed that you aren’t suddenly all better. So, the biggest gift people can give me is continuing to check in months and years after diagnosis, continue to offer help, to hang out, to show genuine interest in my well being and not make me feel like a burden or an inconvenience.

Gift ideas for chronic illness fighters

Gift giving can be tricky for anyone but when you’re buying for someone with a chronic illness it can be harder to know what they might find useful.

1 – Heat pads/ heated blanket

If the person you are buying for has any sort of pain linked to their condition or struggles with being cold, a heat pad or a heated blanket can be a really great way for them to ease some of the pain and protect themselves from the cold. Electric heat pads are even better because you don’t have to keep going to the microwave or boil the kettle to get heat, you just plug them in and off you go. Many of them have variable heat settings and safety cut offs to prevent over heating or burning.

2 – Comfy clothing

For many people with chronic illnesses, especially chronic pain or sensory issues, comfy clothing is such a blessing. This could be something small like some comfy/fluffy socks that don’t have cuffs or a cosy hoodie to wrap up warm with, anything that you’ve seen your loved one wearing that you could find a comfy version of. Clothing can actually be painful for some people with chronic illnesses and anything that makes it better is so appreciated, it’s also really comforting when you can just snuggle down in something comfortable and just relax.

3 – Fun mobility aids

If your loved one uses mobility aids then fun or luxury versions of those can be great gifts. I would always recommend asking before buying a mobility aid because preferences are so personal, but one way of doing it might be to take them shopping to get them a gift card for somewhere that sells mobility aids so they can choose what they think will work best for their needs.

4 – Skin care

Many chronic illnesses come hand in hand with chapped lips, itchy or irritated skin and dryness, once you have made sure your loved one doesn’t have any allergies, high quality and luxurious skin and lip care can be really nice as a gift. We get so busy taking care of our medical needs that we often forget to look after our other needs so getting something skin care related can encourage us to do other forms of self care and really look after ourselves.

5 – Cosy blankets

Similar to the comfy clothing, having a comfy blanket to snuggle up under when you’re feeling really unwell can be really comforting.

6 – Streaming service subscriptions/ gift cards

Being unwell a lot means lots of time in bed/on the couch with not very much to do. Having access to a good streaming service for movies/ tv shows can be really helpful. It helps to keep us occupied while promoting rest and relaxation. If your friend or loved one isn’t a bug movie lover then you could switch out a movie subscription for a music or audio book streaming service .

7 – Books

Another thing that comes with chronic illnesses is a lot of time waiting around in hospitals and doctors offices. If your friend or loved one is a book worm then a good book to dig into while they’re waiting around could be a great gift.

8 – Snacks

Easy to prepare and eat snacks that cater to any allergies your loved one may have are a great gift idea. One of the things I struggle with is having the energy to prepare food, usually by the time I have made my snack or meal, I don’t have any energy remaining to be able to actually enjoy eating. If I could have a never ending supply of easy to eat, low preparation snacks it would definitely encourage me to eat on those low motivation days.

9 – Fancy water cups/ bottles

Hydration is really important for everyone and many chronic illnesses actually make maintaining hydration more difficult. Many of us loose extra water due to symptoms such as vomiting or diarrhoea, or we deal with electrolyte imbalances due to the impact of our underlying conditions, so its really important we drink enough to keep us safe. Having an easy to grab and use water/drinks bottle to keep with us and keep topped up can really help with this, and who doesn’t love a swanky new drinks container?

10 – Chore coupons

For many with chronic illnesses basic chores become more difficult and sometimes even impossible. Chore coupons are a great way of offering help on the other persons terms, it allows them to choose the type of help they need on a particular day and they can ask for it in a non pressured way. It doesn’t have to be anything big, it could be something as simple as doing the dishes or walking the dog, or you could push the boat out and offer a deep clean if this is something you think they would both need and feel ok about. Our time is the most precious gift we can give someone and it will always be appreciated.

How do you do it?

” How do you do it?” is one of the most common questions I get asked from people who have just found out about the extent of my illnesses.

The honest answer is, I don’t really know. Chronic illnesses are weird like that, for a lot of people they just creep up on you, you wake up sick one day and don’t get better. Some people stay the same or have a long period of stability, some people get progressively worse, some people relapse and remit over time.

In my personal experience, my chronic illnesses have built up over time, at first there was only joint pain, then the coeliac and with that came a distinct lack of energy, then came the crohn’s with its nausea and stomach cramps, then I was officially diagnosed with arthritis, then I had my jaw surgery. then came the cluster headaches. I dealt with things as they came along and for a long time i tried to keep living my life as normally as possible, I kept going to school and then college, managing my pain any way I could until it just became impossible to do those things. When I look back over the last 19 years I genuinely don’t know how I have got to this point. So many things have happened, hundreds of tests, hospital stays, procedures, IVs, surgeries and injections. I have failed multiple medications and treatment plans and I have had constant debilitating pain in one part of my body or another through all of it.

When you stop and think about everything you are dealing with things it can be really overwhelming and there have definitely been times when I have thought I would stop functioning, where I couldn’t see how I was going to keep going for even another day, and then a new day comes, and I get up and brush myself off and go on with life. While you’re in the midst of the pain it can be difficult to see how much you’re actually going through, it’s almost impossible to take in every emotion, every bit of physical pain just merges together in an endless slurry. Its only when you look back with hindsight you can really see how much you’ve been through and for me those are the moments where I struggle to see how I am going to keep going.

The problem with chronic illnesses of course is that they never stop, so even when you stop and look back you’re still not seeing the full picture because it isn’t over yet. I think its because of this that I struggle to verbalise how I “do it” or really take in exactly what I have been dealing with. What I will say is that a lot of people think they would never be able to cope with a life like mine but the truth is when you get sick you aren’t given a choice, you have to fight if you want to keep living and that fight won’t suddenly stop. Most people would be amazed at what they could cope with if they really had to do it.

Generally you try to make the most of the things you can control, you try to forge a life for yourself the best that you can, you attempt to maintain relationships and surround yourself with people who love and support you. There is no secret to getting through or dealing with chronic illnesses, no secret to dealing with daily severe pain or coming to terms with knowing you won’t get better, but I promise you in the majority of cases you will find a way through. Putting one foot in front of the other is a good place to start. It’s all I’ve done for the past 19 years and it has got me this far. The one good thing I can say about living with chronic illnesses is it has taught me to be grateful for every day and every opportunity, because I don’t know when my last chance to do something will be. My health has been deteriorating steadily for a long time and I have had a few “lasts” that I didn’t know were coming, like my last 8 mile walk, my last meal in a restaurant without worrying about getting sick, my last pain free day, and I will have more “lasts” throughout my life, and although thats incredibly hard, it has taught me to enjoy every last second that I can.

Please don’t tell me it could be worse

Everyone has different ways of dealing with difficult things that happen to them, some people find it easier to remind themselves of all the good things that have, some try to focus on all of the things they have, some try to focus on people who “have it worse” and some have to deal with it head on.

Like many people with chronic illnesses, I get a lot of comments and advice about how best to deal with things, usually from people who dont know me and my full story. They usually mean well , but can be inadvertently hurtful or insensitive with their advice.

After spending the last 19 years of my life in one form of pain or another I have had more than enough chance to work out what helps me and what doesn’t. I have a history of bottling things up because I dot want to be seen as complaining or because I thought I shouldn’t say anything because “it wasn’t that bad compared to others”. It has taken me a long time and a lot of hard work to get to a place where I can now be more open when I am struggling and I have even started an instagram account where I share some of the ups and downs of dealing with chronic pain and chronic illnesses. Having said that there are still details that I choose to keep private, I don’t share much about what has happened to me in the past and I keep most of my personal life like my relationship with family and friends off account .

The last few years have been particularly tough, the pandemic had a huge impact on my life and continues to do so even now, I have also suffered two very close bereavements and my health has continued to deteriorate. There has been a big emotional toll as I have tried to learn to live in a new normal, in a world where I could still catch Covid 19 and end up very seriously ill. There have been a few occasions where I have attempted to share just how tough I have been finding things and instead of empathy and understanding I have been met with people telling me just how much worse they think I could have it.

Now, I understand that for some people this is a helpful way to look at things, and it brings things into perspective but for me it feels very invalidating. Technically things could always be worse for almost everyone, even those in the most heart breaking situations could theoretically have it better than someone else. Suffering is not a competition, it is relative. If there are two people in A&E with broken legs and one of them has also broken an arm, it doesn’t mean the person with “only” broken legs is suffering any less.

I am the type of person who doesn’t like to burden others with my problems, I will often do everything possible to carry on going and not show how much I’m really struggling, especially emotionally. On rare occasions, and in rare spaces (like my instagram) that I feel safe enough to share even a fraction of how I really feel, I really do not need to be told that it could be worse. I have gone though a massive amount in my life, including harmful relationships but these last few years have been the hardest of my life and I rally don’t want to loose one of the only places I feel able to be honest about how I am feeling.

World IBD Day 2024

Sunday 19 May 2024 is world IBD day,

To mark this important day I thought I would talk about IBD, the main types, symptoms, diagnosis and treatments.

IBD stands for Inflammatory Bowel Disease, it is a group of conditions that cause inflammation and damage to the digestive system. There are a few different types of IBD with the main two being Crohn’s disease and Ulcerative Colitis . The exact cause of Crohn’s disease is unknown, but it is thought that there is an auto-immune or auto-inflammatory component. One train of thought is that the immune system reacts to something in the gut – possibly bacteria- and starts to attack it, causing damage, research into the causes and mechanisms of IBD is currently on going and new theories are coming out all the time.

Crohns disease

Crohn’s disease can impact anywhere in the digestive tract from the mouth to the anus, it causes inflammation, ulceration, scarring and damage to all layers of the bowel, and it can cause complications such as fistulas which are abnormal tracts between one part of the body and another, such as between the bowel wall and the abdominal wall. In Crohn’s disease the damage can be sporadic, there can be patches of inflammation and patches of healthy tissue, which means that if you looked at only a small section of tissue, you might miss the disease and think it is not present.

Ulcerative colitis

Ulcerative Colitis (UC) impacts the large intestine (known as the Colon) and the rectum. Small ulcers develop on the lining of the colon which can bleed and produce pus. In ulcerative colitis the inflammation is continuous, and it only affects the inner most lining of the colon.

Indeterminate colitis

In about 10% of people with IBD, features of both UC and Crohn’s are present, making it impossible to distinguish between the two types of IBD, in these patients a diagnosis of inderminate colitis is made.

Symptoms

Symptoms vary from person to person and even between different flare ups in the same person. The most well known and more common symptoms include

Stomach pain
Nausea
Vomiting
Weight loss or weight gain
Bloating
Diarrhoea
Nutrient deficiencies
Bleeding from the gastrointestinal tract

While these symptoms may seem obvious for a digestive disease, there are other symptoms that may seem less obvious and these include

Joint pain
Fatigue
Eye inflammation
Mouth ulcers
Osteoporosis
Skin issues

Diagnosis

Because the symptoms mimic so many other conditions IBD can be hard to diagnose, unfortunately it often takes people a few years to get a proper diagnosis . Getting a diagnosis usually starts with speaking to a GP and getting some basic blood tests and a stool sample should be taken to look for blood, inflammation and signs of infection, there may also be a physical examination of your stomach to check for any other signs of issues,

After this, if the GP deems it appropriate, they will refer you to a gastroenterologist which is a specialist in the digestive system who may order further testing including an MRI and/or a colonoscopy or endoscopy. The best way to get a firm diagnosis is to get a biopsy of the intestine which can be done during a colonoscopy. The biopsy can help determine if you have Crohn’s or UC or if there is something else going on. Sometimes these tests will come back clear despite continuing symptoms. If this is the case, you can ask for other testing such as a barium meal follow through or a white cell scan which is a specialist scan where the white blood cells are tagged with radiation and a special scanner is used to follow them. If the white cells are seen to be concentrating in a specific area it can indicate inflammation which can be used to help with diagnosis.

Whatever tests you have, don’t give up if you are still having symptoms and feeling unwell, it’s important to stand up for yourself and not to let anyone put you off, getting a diagnosis is important for any illness, and its not ok for anyone to be left suffering.

Treatments

There is no cure for IBD, so treatment aims to control the disease and help to improve quality of life by getting symptoms under control.

Steroids

Corticosteroids like prednisolone or budesonide are used during the acute “flare” phase of the illness. A flare up is when the disease is active and causing more symptoms than the day to day baseline and steroids control these flare ups by reducing the inflammation in the digestive tract. Although they are usually very helpful and can get symptoms under control very quickly, steroids are not a long term option as they come with some quite significant risks including bone thinning, mood disturbances and the possibility of steroid dependancy.

Liquid diets

Liquid diets can be used at any age but they are most commonly used in children to give the gut a chance to rest and heal, they can also be used to try to help someone gain weight and nutrition if they have become malnourished as a result of their illness. Liquid diets use a very special form of formula food, which can be partly or fully predigested and may be highly calorific. They are tough to deal with, but they are a very low risk way of treating the inflammation and pain associated with IBD.

5 ASAs ( aminosalicylates)

These drugs have an anti-inflammatory component and they are chemically similar to aspirin, they dampen down the inflammatory process and allow the damaged tissue to heal. They are generally very safe drugs and they are often used as a first line treatment, especially in cases of IBD that aren’t very advanced or severe. The downside is they have limited effectiveness, so they aren’t appropriate for people with advanced or severe disease.

Immune suppressants

Immune suppressants work by calming down the immune system in the hope of stopping the damage to the digestive tract. The downside to immune suppressants is that they leave you more prone to infection and can have some serious side effects including liver problems, it’s important to have regular blood tests before and during treatment.

Biologics

Biologics are medications that work on the immune system and modulate it. Different Biologics work on different parts of the immune system, infliximab and adalimumab for example are both anti-tnf medications. Biologics block the part of the immune system that they are targeted at, with the aim of stopping any further inflammation from occurring. Like immune suppressants, Biologics come with a higher risk of catching infections and difficulty fighting them, they can also come with a higher risk of some types of cancer and they can lead to issues with organs such as the liver. Most Biologics are delivered by infusions or injections, the injections are usually self administered at home by the patient.

Surgery

Sometimes medication isn’t enough to stop the IBD from spreading or causing complications like abscesses and surgery can become necessary. There are a few types of surgeries that may be performed with IBD including bowel resections where a part of the bowel is removed and the healthy ends are joined together, stoma surgery where a part of the bowel is removed and the end is pulled through an opening in the abdomen, abscess lancing and removal and fistula repair surgery.

Worst case scenario

Although thankfully quite rare, people can die or be left with serious life long impacts from IBD and its complications . People with Crohn’s disease may experience a perforated bowel, which is a medical emergency or there may be complications related to surgery done to treat the IBD. People with IBD are more at risk of cancer, and some of the treatments also increase the risk of some cancers such as skin cancers, many of the treatments also reduce the function of the immune system which means patients are more susceptible to infections and may have more difficulty fighting off viruses like Covid and the flu.

This is why we need research for a cure and kinder more reliable treatments. Current treatments are much better than we had even 10 -20 years ago, but they don’t help everyone and they do have the potential to fail, and they all have potentially serious side effects. If you would like to help, just sharing information about IBD can be really helpful, the more people who know about IBD and its signs and symptoms, the better chance we have of getting people diagnosed early and stopping the worst of the damage. Increasing awareness will also increase funding as people will be more aware of the need to fundraise, and doctors becoming more aware will mean people are treated earlier and more efficiently.

Diagnosis story – Crohn’s disease

Crohns disease is a type of Inflammatory Bowel Disease (IBD) which a can affect anywhere in the digestive system. Common symptoms include stomach pain, nausea, vomiting, weight loss, bleeding from the bowel, loose stools and extreme fatigue. These symptoms are also common in many other diseases and this means that people with IBD often face months or even years of symptoms, testing and misdiagnoses before finally being diagnosed with IBD. I hope that by sharing my diagnosis story I can help raise awareness and hope during the diagnosis journey.

Part one – First symptoms and initial investigations.

The first indication that something wasn’t quite right came in the form of mild to moderate abdominal pain. At the time I was already under a paediatric gastroenterologist for coeliac disease so we told them about my symptoms and we did some basic testing. We started with some blood tests and moved on to x-rays, an ultra-sound and a barium follow through where I swallowed a barium drink and multiple X-rays were taken as the barium went through my digestive tract. We were told there was nothing significant on the tests but that we should closely monitor my weight and pain levels to make sure I didn’t deteriorate. We later found out that there were slight changes on the barium follow that could have indicated crohn’s but because of the newly diagnosed coeliac no one really thought much of it. We were told that the symptoms were possibly from my body recovering from the damage related to the coeliac disease and the big change in my diet.

Part two – watching, waiting, anticipating

After the initial tests were inconclusive, we decided that a watch and wait as my consultant didn’t want to put me through any more invasive testing as he felt I had already been through enough. Over the years the pain never really went away, and I began to slowly loose weight. My paeds consultant was concerned about the weight loss as I was already underweight for my height and it was beginning to become dangerous. Unfortunately at this point I aged out of paediatric care and had to be moved to the adult department and a new consultant. My paeds consultant had written to the adult gastro stating his concerns and advising close monitoring but unfortunately this was ignored. It took several strongly worded letters for me to finally be seen in clinic, and my concerns were totally dismissed because my blood tests were “ok”. I was told that my symptoms were possibly “functional” or that maybe my coeliac wasn’t being properly controlled and dismissed.

Part three – Begging for tests and worsening symptoms

Around 4-5 months after my 19th birthday my pain began to get significantly worse and was having major impacts on my day to day life. I was also continuing to loose weight despite eating as much as I could. At this point I knew something needed to change so I insisted on an appointment with my consultant and essentially begged him to do more testing. I eventually managed to convince him to organise an MRI scan. The scan took place in early August and I was told I would get the results within four weeks. Four weeks came and went but there was no sign of the results so I assumed there wasn’t anything important on the scan and tried to carry on with life.

Part four – Hospital trips and final diagnosis

After receiving no update about the MRI scan for 6 weeks I went off to Uni thinking it must have been OK. We don’t know if it was the stress of moving to a new city, starting a nursing course and being away from my family for the first real time or if it was just a coincidence but this is when things really went downhill. I lost a large amount of weight in a very short amount of time, my stomach pain became unbearable and I was struggling to eat or even drink enough. I was suffering severe nausea and vomiting and couldn’t even keep water in. At this point I decided I needed real medical help and went to the A&E at the nearby hospital where I was kept over night. This was the first of three admissions where they gave me pain relief and re-hydrated me. During the third admission they were discussing exploratory surgery to try and find out what was happening, but the consultant who came in the next day decided that this wasn’t necessary. Instead they diagnosed me with a ruptured ovarian cyst and instructed me to take a week off uni and go home with my parents to rest and be looked after.

While this was unfolding, I decided to try and contact my gastro consultant back in Wales to see if he could tell me if anything came up on the MRI scan. When I eventually got hold of him and told him what was happening, he told me that the MRI had shown narrowing in the bowel indicative of Crohn’s disease. He told me I would need further testing to make a definitive diagnosis. In November 2012 I had a colonoscopy with biopsies which found a narrowing called a stricture as well as active inflammation in the form of ulceration and redness. This confirmed the diagnosis of inflammatory bowel disease and because of the location (end of the small bowel) it was decided that I did indeed have Crohn’s disease.

Faith in the midst of chaos.

Something I don’t talk about as much as I would really like to is my faith. Growing up my parents allowed me to figure out for myself what I believed in, they didn’t want to push me towards a specific religion so they told me the basics of what they believed and then answered any questions I asked.

Most of my early exposure to religion was through school, my primary school had its own little prayer that we said in each assembly and we read child friendly versions of parts of the bible and some of the parables. We also had a visiting pastor from the local church who would tell us stories and explain parts of the bible in a really fun way and I really enjoyed those visits. While other children just thought the stories were fun and moved on, they spoke to me on a different level and many stuck with me throughout childhood. At that point I knew I believed in God and Jesus but I wasn’t really able to say much more than that, I couldn’t tell you if I identified as Christian, in fact many people who did identify as Christian told me that I didn’t fit in. I wasn’t baptised or christened, I didn’t go to church regularly and all sorts of other things that people told me I “had” to do. I did, however, believe that God was taking care of me, I believed that I could talk to him (although as a child my “talking” was pretty funny) and I believed that God could make real changes in my life.

When I was around 10 years old someone told me a story about a monster from a horror film. This monster scared me so much that every night before bed I would ask God to stop the monster from being real and ask him to protect me from it. I never called it praying, at the time I didn’t realise that praying doesn’t have to be perfect, but when I got a bit older I realised that my 10 year old self was indeed praying. While as an adult I know that the monster was never real, and that it would never have been able to get me, as a 10 year old that monster felt real, the fear whenever I thought of it was real, the panic when I first heard about the monster was real, and so was the comfort I felt when I asked God to take care of me each night. I now realise that although the danger was never actually there, the safety I felt in God, the protection I felt when I prayed was totally real, and that was my introduction to the peace of believing in Gods love.

As I got older, I began to question where I belonged. A lot of people made me feel like I wasn’t “allowed” to call myself christian because I didn’t do all the things that they did. This was especially prominent when I began to suffer with health problems. People would say that I must have been a bad child, that God was punishing me or my parents, that I wasn’t getting better because I wasn’t praying hard enough or because I didn’t believe it was possible etc. I felt like an outsider, I felt lost and alone. I still strongly believed in God and wanted to be able to express that, but I was being made to feel like I didn’t deserve it.

This impacted me so much that when my now fiancé (then best friend) asked me about religion I said I wasn’t a Christian. He was from a very Christian background and his parents had concerns about him being so close to a non-believer. During a later discussion, he mentioned me “not believing” and I was deeply offended. I strongly and forcefully corrected him – “I never said I don’t believe, I said I’m not a Christian because I’ve been told I can’t call myself that” .

That sparked a deeper conversation where I told him the things that I believe, I poured my heart out to him and at the end he turned to me and said “you ARE a Christian, those people who told you that you can’t be are wrong, they’re putting on a show but what makes you a Christian is what you believe inside and how you live your life, not just going to church or being baptised”. We have had many more conversations over the years and each time I feel more and more secure in calling myself a Christian, but more than that, I feel that my soul is being heard and that is amazing.

Something I have encountered many many times is people who can’t understand why I don’t want/ pray to be healed. They say I can’t really be a believer and not think I’ll be healed. Here’s the thing – I believe that one day I will be given a body that doesn’t hurt, that doesn’t make me sick, doesn’t make me cry, and that allows me to live without fear, but I believe that I am only promised that when I get to heaven. I believe that God has the power to choose to heal me now, but I believe that its not a promise, I believe that there is a reason I am sick. I believe that my life is more rewarding because of the experience of being sick. Having chronic illnesses is hard, having constant pain, sickness, exhaustion and fear is hard, but it is also beautiful. I believe that my illnesses have taught me compassion, empathy and patience, I have learnt to find happiness on the hardest days, I have had experiences that I previously would have been too scared to enjoy. I have learnt to see opportunities and seize them because I know I might not get another chance. I have felt serious fear but I have also experienced extreme peace. I don’t pray for my illnesses to be healed, I pray for the strength to face them.

There have been many times where I didn’t think I could cope any longer, long nights of severe pain where I have begged for relief, and although the pain never goes away, I have felt extreme comfort. I have felt the fear leave and my body relax, I have gone from feeling desperately alone to feeling loved and calm.

One of the most prime examples I can give is being changed from IV medication to injections. For around 5 years I had medication through IV infusions every 8 weeks. The medication did wonders for my crohns and improved my quality of life but my veins have never been good. I have always had small and weak veins that are hard to find and often “blow”. The longer I stayed on IVs the worse it got, I often had to endure 6-8 needle pokes before a working IV was established and then I had to be super careful or it would stop working. I often left the hospital covered in blood and bruises, my arms would hurt for days and the bruises would last for weeks. It was getting to the point where we were never sure if I would actually get my treatment because my veins were so damaged. It started getting to the point where I was having to force myself to go to each appointment. I never complained, I never expressed how hard it was, but internally it was getting harder and harder to walk through those hospital doors. The final push came when I attended an infusion appointment and we were seriously considering me having to come back a different day. We had one last attempt and got an IV in a really painful place on my wrist, and then I almost fainted. Coming out of that I was broken. I silently told God that I couldn’t keep this up any more, the mental stress of never knowing if I’d get my treatment, never knowing how many painful attempts they would need, how many bruises I would end up with was really starting to cause burn out. When the next appointment came, I silently begged for things to change, and it did. That was the day they told me I was going to be the first to change to self injection treatments. The relief of walking out of the hospital knowing that would be my last infusion made me feel like I was walking on air. Each time I inject it feels like a miracle. And that is how I experience my faith, I don’t wait around expecting God to fix me, but I walk through each storm and lean on God when it feels too much to do alone. I recognise the small miracles and I realise that even the smallest moments can create big changes. That’s how I maintain faith in the chaos.

I don’t believe I need to be “healed”.. here’s why.

When you have been dealing with chronic illnesses for any length of time you inevitably come across people who think you need to be healed/cured/fixed in some way. This can come from all types of people, there are people who think that if you’re a good Muslim, Christian, Jew, Hindu etc then you will constantly be praying for healing. There are people who think that you can’t possibly be OK with being sick or disabled and think that you should be constantly seeking cures, trying everything no matter how extreme or how little benefit it will actually have. Whenever I am faced with this I give my honest response – I don’t believe I need to be healed, and I’m going to attempt to explain why in this post.

Before I get to the explanation I just want to say that if you’re someone that really wants to be healed, that needs to hold on to the hope of healing to cope or to get through, or someone that believes in trying every remedy possible to try and make things better then that’s absolutely ok. I’m not judging you and I respect you. All I am asking is that you give people like me the same respect and accept that we have accepted our situations.

One of the hardest things about dealing with a diagnosis of a chronic illness is learning to accept that you will be living with it for the rest of your life. It can take months or even years to stop hoping you’ll wake up one day and it will all have disappeared. It often takes a lot of processing and hard work to finally be ok with yourself as a disabled or chronically ill person. I have been in some form of pain since I was around 12 years old. I have a long list of diagnoses and each one adds another layer of things I have to learn to live with. Constantly being told by society that I need to be fixed or healed makes that acceptance so much harder as it can make it feel like you’re not good enough as you are, or that you should somehow be making more effort to get better, and you are failing if you don’t.

For me, accepting that my illnesses are permanent and that I am not going to suddenly get better has actually helped me to enjoy my life in the here and now instead of putting things off. If you’re constantly waiting to get better you can end up putting off experiences and relationships because you think you’ll have chance when you’re better and that those experiences will be more valuable as a healthy person. I can say with certainty that having chronic illnesses makes so many of my experiences so much richer. I have learnt to make the most of every moment that I get. My illnesses teach me everyday to make memories from the simplest moments and I think that as I go through life they will continue to teach me more, so while I don’t want to be in pain and of course its hard, I wouldn’t ever give up the perspective having chronic illnesses have given me.

In addition to all of this, I believe that having a diverse population with a verity of experiences, abilities, needs and perspectives is good for society. Change happens when people from all walks of life are being represented and heard, without disabled people we would loose a huge range of experiences and thought processes. There are many inventions that wouldn’t exist without disabled people. Typewriters we originally designed by an Italian inventor who noticed that his friend was unable to hand-write letters because of her blindness. In 1608, Pellegrino Turri developed the first ever type-writer with metal arms and raised characters which allowed his blind friend to write. The inventor also invented carbon paper as a way to provide ink for the type writer. Other inventions originally developed for disabled people include Electric Toothbrushes, kitchen tools such as OXO good grips, speech to text recognition apps, fidget spinners, dropped curbs, bendy straws and audio books. This list is no where near exhaustive but provides good examples of products inspired by disabilities that have become integral parts of many peoples lives. Without the difficulties that come with disabilities we wouldn’t be driven to find solutions which would likely result in a vast decrease in innovation.

I also believe that having a diverse range of experiences in society helps to increase empathy and feelings of community which is really important for those wishing to experience and spread Gods love. It also takes a huge amount of faith to continue believing in God and his love while experiencing chronic and incurable illnesses, this type of faith is unending and cannot be rocked, meaning that those with chronic illnesses are a very valuable example of what faith can really do.

The agony of waiting in chronic illness.

Life with chronic illnesses is full of ups and downs, there are so many difficult moments and experiences, so many days that don’t go to plan and things you wish you could change. One of the most difficult aspects for me is the constant waiting and being in the darl about what will happen next. At some point everyone with a chronic illness will experience the agony of waiting.

In my case, it feels like I started waiting when I was 12 years old and never really stopped. Waiting for appointments, tests, diagnoses, treatments, results, improvements and declines, it all takes its toll.

Most recently I spent two years waiting for a neurology appointment after my original neurologist prescribed a treatment and then didn’t contact me again. During the period of waiting I began to suffer an increase in headaches and began to suffer with chronic cluster headaches. By the time I finally got to speak to my new neurologist I had been suffering with chronic cluster headaches for around a year and was really in need of a break.

The outcome of that appointment was a course of steroids and an increase in my preventative treatment in the hopes of settling the headaches and preventing a return. After over a week of waiting for the steroid prescription I finally started treatment and got a much needed break. Unfortunately the headaches came back as soon as I stopped the steroids and the cycle of waiting started again. This time I was waiting to see if the headaches would settle or if the extra dose of preventative would kick in.

When the opposite happened, I decided to call my neurologists secretary and she offered to ask him to call me. More waiting ensued. Thankfully he called me the next day so I wasn’t waiting long, and we set up a plan.

Now, a week later I’m waiting for that plan to kick in to action. I am currently waiting to hear about getting oxygen delivered to take during attacks, I am told that it usually takes days for this to happen, but so far there’s no sign. A week may not seem like very long but these headaches are excruciating and every day without the oxygen is an extra day of suffering that isn’t necessary. I am hoping I will hear something soon and get some relief, but it there is just no way to know and there’s really nothing else I can do but wait.

While I’m waiting I know that the phone could ring at any time, so I have to keep my phone with me and on loud so that I don’t miss it, I have a million and one questions about the set up process, how much longer it might take, who to talk to if the oxygen isn’t delivered soon, where to store the oxygen, if the delivery person can even put the oxygen in my bedroom or if they’re allowed to carry it upstairs or not and no one seems to be able to answer me. The need to be constantly available means I can’t ever fully switch off because I need to be able to answer their questions at a moments notice and this is all while dealing with extreme pain, made all the more difficult by the knowledge that there is something that could help right now but for some reason I have to wait longer.

I am also waiting for a nerve block injection to hopefully give me a few weeks or even months headache free. Again, I have no idea how long the waiting list is, so it might be a few months before I get this treatment or it could be a matter of weeks. All I can do is try my best to deal with the pain in the mean time.

To someone outside the chronic illness community it might not sound like a big deal, but this isn’t an isolated situation. I would estimate that I spend around 200 days a year waiting for appointments, phone calls, tests, test results, procedures, prescriptions, medications to work and all sorts of other medical admin. It is so exhausting constantly being in waiting mode, never knowing what will happen next and I think its massively underestimated. The NHS is an amazing system, but communication with patients about how long things will take really needs to be improved. There needs to be less onus on the patient to always chase and ask for information, there needs to be more information about dealing with conditions while waiting for interventions and I think there is a real need for patients to have access to someone to talk to while waiting for the answers and treatments they so desperately need.