Gastroparesis warriors

Anneliese 37 – Diagnosed 2009 Thirty-seven year old Illawarra resident Anneliese was finally diagnosed with the debilitating illness ‘gastroparesis’ in 2009 after years of chronic nausea and pain being dismissed as a viral illness or food poisoning. As a diabetic, she began her treatment by tightly controlling her blood sugar levels; however this did not improve her symptoms. What followed next was a series of different medication trials, all while being the mother of two young girls and battling the daily nausea and vomiting. Frequently in and out of hospital fighting dehydration and the repercussions of her disease, home often felt like more of a holiday than her regular residence. Currently Anneliese manages her gastroparesis with an NJ (nasojejunal) tube which is changed every 6-8 weeks and a surgically implanted ‘gastric pacemaker’. She feeds for 15 – 17 hours per day and continues to battle the relentless nausea, pain and vomiting. Anneliese can no longer work and misses the energy and social occasions that she could once take part in. She “Please do not judge a book by its cover – we are all different and it takes listening to the individual story to be able to see just a fraction of what life is like with gastroparesis”

Ashley 29 – Diagnosed 2012 The symptoms first started in 2011. I was finally diagnosed in 2012. I have Idiopathic Gastroparesis. I have no idea how I got the condition. I am still trying to find ways to help manage and maintain it. Having symptoms like nausea and reflux have been very difficult to have under control. For the last 6 years I have tried almost every medicine available as well as experimental procedures. I have tried electro stimulation, a balloon dilatation and even Botox. At present its difficult to answer how I live and manage my Gastroparesis; at times I have no idea how I manage. I eat, I feel sick. I don’t, I feel sick. I try to lie down as much as possible, I even go as far as to distract myself. There are days where I am in tears because I am so uncomfortable. I am so tired and exhausted. Having a very supportive family and incredible friends has made this a little easier. All I can do is take it one day at a time.

Emily 21 – Diagnosed 2014 Over the years I saw specialist after specialist, tried medication after medication, did test after test; MRI’s on my gallbladder, multiple endoscopies, a sigmoid colonoscopy, X-ray’s, ultrasounds, CT scans and so many more, and they all came back normal. It was so frustrating. I knew what I felt was real, but I started to really doubt myself, which took a huge toll on my mental health too. I got my first feeding tube, an NJ tube, at 19. I had 6 tubes in 6 months, and then got a surgical feeding tube, a PEG/J, that goes through my stomach into my intestines. I’ve had many complications since my first tube; including so much pain I had to stop my feeds, Now I can only tolerate a small rate per hour, the tubes clogging, and the tube lodging in my stoma and almost perforating my stomach but it has always been better than the alternative which is starving to death. I had 23 hospital admissions in 2015 majority of them was dehydration from vomiting. Every day is a constant battle with feeling sick, vomiting, and severe pain, though I have good days and bad days. My good days are equivalent to other people’s awful days. Gastroparesis has affected every part of my life, my job, my study, and my relationships. I have lost so many friends, but I have also strengthened so many relationships, and made some new amazing friends along the way. We need help. We need awareness, we need funding. We need doctors to know about it, we need nurses to know how to help us. So many doctors and nurses during the last few years have assumed I have an eating disorder, or that I’m lying, or just couldn’t wrap their heads around the disease. We need awareness, and we need it now. Until then, I will not stop advocating and I will continue to fight, every day, for the rest of my life.

Bridget 20 – Diagnosis date to be confirmed by Bridget Since the Campaign day Bridget has been very sick with ongoing health issues on top of her Gastroparesis. She is currently in hospital. Bridget had swine flu when she was 11 and afterwards is when her Gastroparesis symptoms started. Her Gastroparesis is very severe and she can’t even have water or ice cubes without vomiting and feeling sick. On good days she can suck on some lollies some of the time but even then they don’t always stay down. Bridget has a permanent tube inserted into her abdomen, with a tube into her stomach for draining and a tube into her small intestine for feeding.

Emily 22 – Diagnosed 2012 Devonport resident Emily faced years of chronic pain and bloating before finally receiving a diagnosis in 2012. The disease that had caused her so much suffering already, and would go on to alter her life so drastically was called ‘gastroparesis’. Emily’s stomach was paralysed, only able to digest 1% of the food she ate, leaving her incapacitated with pain after meals and battling the consequences of malnutrition. “It feels like someone lights a fire in your stomach of a morning that becomes hotter and spreads further throughout your body as the day goes on.” The diagnosis itself was a small comfort; Gastroparesis currently has no cure and many individuals who suffer from the condition find the treatments available inadequate in addressing their severe symptoms. Emily soon found that medication didn’t work for her. She currently relies on extreme dietary modification to offer her some relief, and knows that her last resort, an NJ (nasojejunal) tube, is just around the corner. “The unknown is cruel, not only for those who suffer but for the families and friends who feel helpless watching” Emily lives not only with gastroparesis and its daily onslaught of symptoms, but with a constant uncertainty. The unreliable nature of this disease means she doesn’t know how gastroparesis will continue to affect her life, or what her future has in store.

Jacinda 33 – Diagnosed 2015 Launceston resident Jacinda Turner’s life changed suddenly in 2015 when she found that she could no longer tolerate food. Feeling constant intense pain and nausea, it took numerous tests before she was diagnosed with the debilitating disease ‘gastroparesis’. Changes to her diet and numerous medications failed to remove the pain and nausea, causing Jacinda to deteriorate and continue to lose more weight. Numerous tubes were inserted, first through her nose and later surgically in an attempt to restore her quality of life. However, eventually these all failed, leaving her with the difficult decision to have a Hickman’s line inserted. This feeds her nutrients straight into her bloodstream, but leaves her desperately at risk of severe blood infections – of which she has already has two within one year of the line inserted. Today, Jacinda is back at her optimal weight, but still fights off the unrelenting and intense nausea and pain that persist each day. She can no longer work and her quality of life is poor, yet there is still no cure for her illness. “The incredible support of my family and friends… has given me the strength to speak out and raise awareness for this awful disease”

Kristen 25 – Diagnosed 2012 I was diagnosed with severe Gastroparesis in 2012 after years of unexplained sickness and endless doctors, scans and surgeries, not to mention money spent on consultations, tests and hospital stays. I am 25 years old and a mother of 3 young children. My children have come to an expectation that I will be sick after every meal, that I always have a sore tummy and that I’ll be going to the doctor constantly. They are no strangers to visiting me in hospital or getting someone else picking them Up from school and telling them I’m at the doctor instead of being there for them. I can go days without eating proper food and still need to vomit. I am constantly nauseous and have stomach cramps. I get migraines that last days. I am on 16 different medications, I survive off nutrition shakes on ‘ok’ days. I have days I can’t get out of bed. My clothes rarely fit me because of how bloated I can get and I am not the mother I dream of being. Instead I get controlled by a chronic illness that is unpredictable and there is a rare amount of people actually aware of it so I get judged and ridiculed for being ‘lazy’ or ‘bulimic’. With Gastroparesis I also suffer from depression and anxiety. I am a medical professional (RN) and I am ashamed at the lack of understanding that we hold for Gastroparesis!

Jodie 48 – Diagnosed 2015 Three years and three months. Two hundred and twenty six Hospital stays with quite a few Emergency Department visits on top of that. Every test, scan, and scope you can imagine. Finally it had a name; Gastroparesis. What does it mean? Imagine the worst hangover, sea sickness and Gastro all rolled in to one; welcome to my world. It means lifelong medication, extreme nausea, regular vomiting, dehydration, constipation, diarrhea, gastrointestinal obstructions, infection, lack of energy, lack of nutrients, malnutrition, continuous diet changes, tube feeding, cardiac issues, chronic debilitating pain. Yet looking fine on the outside the whole time it goes on. Being judged by Doctors and Nurses who do not know anything about this condition is hard. Being judged as a picky eater or being looked at like I am vane glorious for wanting to keep a slim figure by not eating. Hearing those words “I hope you are better soon” drives me insane. Hearing people say “Just eat”. I so wish I could just eat. My Husband; his life has changed. He married a healthy version of me and I feel guilty for everything this illness puts him through. He never falters, he is my strength and my heart hurts when I see how much pain he goes through from not being able to make things better for me. Understanding is the key. My life with Gastroparesis is my Life forever altered.

Sandra 44 – Diagnosed 2006 Mid 2005 I had a PE (pulmonary embolism) and this resulted in me being constantly in and out of hospital for a period of 6 months and resulted in copious amounts of reflux; more than usual (I suspect it was from the Warfarin). I was also diagnosed with ovarian cysts that required surgery but was not able to be safely operated on until I was off the Warfarin. It wasn’t until late 2006 when I was finally diagnosed with Gastroparesis after a GES (Gastric Emptying Study) was done. This together with the symptoms I was experiencing confirmed that I only had a mild form of it but yet I am still so symptomatic. I am lucky in that I only have it mildly. At the time that I was diagnosed not much was known about the condition and as such was basically told mechanical problem mechanical solution. The Doctor placed me on Motilium (Domperidone) and then asked me to take 5 tablets daily (2 morning, 1 lunch ,2 night) ½ hour before meals. No other instructions were given such as diet or a review date. I was pretty much just left there to fend and work it out for myself and was basically told that unless I had new symptoms that there was no need to see the Doctor. I thought why wouldn’t I need a follow up? Ten years on, I am still none the wiser with this condition. My diet was and STILL IS stripped right back to a semi-liquid, pureed diet with minimal proteins. I basically sustain life on pureed vegetable soup. I now eat the equivalent of a small kid’s meal any more results in nausea resulting in me not being able to maintain nutritional requirements on a daily basis. This is currently being addressed via a dietitian as well as being closely monitored to ensure that this does not result in me becoming malnourished causing further complications to this life changing incurable illness.

Justine 37 – Diagnosed 2016 From birth I had problems going to the toilet and maintaining normal bowel movements, all my life I had been on Coloxyl drops due to chronic constipation. Over the years I have had 23 abdominal operations for my digestive system and Gynaecological. 24 surgeries to fix all my bowel issues including a hysterectomy. Even with all the surgeries and years of ongoing tests I was still sick, bloated, in pain and also vomiting. I just could not get better and Doctors didn’t know what was wrong until one day I was tested for a parasite, it came back positive that I had d-fragilis. I had treatment and after it was finished I was still sick. The doctors decided to do a colonoscopy/endoscopy and to treat the parasite that way, however the doctor I saw didn’t believe I had the parasite he believed I had been fighting a debilitating illness called Gastroparesis. He was right but could not confirm this definitely until I did a gastric emptying study. My results came back and confirmed Gastroparesis, delayed half clearance time of >380 minutes, total percent clearance at 60 minutes was calculated at 1%. Prior to this test I was put on a fluid only diet which I was on for 5 months until I had Botox put into my stomach. This illness has taken over my life, the nausea, not being able to eat and when I do feel so sick. Some days are so hard to get out of bed due to having absolutely no energy, the constant pain and discomfort. I have in my upper belly and right hand of my belly, bloating, constipation is so uncomfortable I don’t know what to do with myself. I have been on motility drugs that don’t work, make me sick or cost a fortune to buy.

Kristi 38 – Diagnosed in her teens with Diabetic Gastroparesis. I’ve had diabetes for 31 years, since i was 7. I cannot recall when i actually got Gastroparesis as at first my vomiting was attributed to a virus and would only happen every 6 months or so. Gradually it became more constant and i was diagnosed with the Gastroparesis. But my guess is that I’ve had it about 20 years. I have had Botox injections into the stomach muscle twice to try and help. The first time was in June last year and extremely successful and i was nausea/vomit free for 3 months. This second round in Oct last year hasn’t been as successful and i am now tube fed but able to eat yoghurt, purees-stuff like that, in small amounts until the Botox wears off. I had 26 admissions to hospital last year. This has deeply affected myself and my family, particularly my children.

Lily 17 – Diagnosed May 2016 I’ve lived with Gastroparesis every day since early November 2014 when I woke up with what I thought was a stomach virus. I expected the vomiting, pain and constant nausea to go away & it never has. I also have Ehlers-Danlos Syndrome, an incurable genetic condition that causes my body to make faulty collagen, the glue that helps hold our bodies together. I’ve since learnt that my EDS likely predisposed me to Gastroparesis. It took 18 months of endless hospitalisations and specialist appointments before I was correctly diagnosed with Gastroparesis. I was repeatably referred to Mental Health Services and told I had to learn to live with my symptoms. No-one recognised that I had a severe motility disorder and so I was subjected to constant efforts to make me eat and drink. This lack of awareness of motility issues almost killed me and I felt blamed for my symptoms. It was scary to be seriously sick and have no-one believe me or family. In late 2015, my family and I knew I was running out of time. This is when I met my favourite doctor, local surgeon Dr Allison Duchow. She recognised immediately that I wasn’t making this up. Dr Duchow listened to me and didn’t just assume I had an eating disorder because of my sex, age and symptoms. She worked really hard with our local hospital to keep me alive with nasal feeding tubes and IV fluids and helped my Mum to keep pushing for a diagnosis. With my local hospital’s support. I saw Dr Vincent Ho a Gastroenterologist in Sydney who was able to diagnose me with severe Gastroparesis. It was such a relief to finally be believed. With the support of these two doctors I was able to start medications to increase my gut motility and my nasal feeding tube was replaced with a permanent PEG J tube through my abdominal wall and into my small intestine. I receive most of my daily nutrition and fluids through this tube every night, and even though I hate it, I rely on it to keep me alive. It severely affects my quality of life and it can be life-limiting, especially if left untreated

Emma 48 – Diagnosed 2002 I was diagnosed as having idiopathic gastroparesis (gp) in 2002, however my symptoms started after breaking my back years ago requiring 3 major surgeries, the last in 1998. Does spinal cord injury contribute to gp ? Might never know as there is so much to learn and there is no cure. I am a wife, mother and nan, but I have been robbed of these roles because pain and nausea rule my life. I almost missed my daughter’s wedding due to gp. I dont venture out much, at times going to the letterbox is a struggle. I’m a “frequent flyer” to hospital. The longest being 4 months straight. Christmas Day was spent in hospital. I started Nj tube feeding in Dec 2016 and the times I try being tube free results in extreme pain, nausea and weight loss…so I cannot see myself free from the battle of eating vs Nj feeding just yet. Financially it is hard. I don’t qualify for a pension card as my husband earns just over the threshold set by the government. This makes my chemist bill over $400 a month, many medications not on PBS. This is where change is needed. I loathe this disease for what it does to my life and those around me.

Kerryn 38 – Diagnosed 2014 I felt nauseous constantly, was never hungry, was vomiting between 14 and 16 times a day, had abdominal pain and bloating, constipation, gastric reflux, extreme tiredness and migraines and within 5 months I had lost 15kgs and was weighing 43kgs. I was formally diagnosed with Severe Gastroparesis in December 2014 after undergoing a Gastric Emptying Study, the test identified that my stomach was only digesting 16% of the food that I was eating (84% of the food I was eating was sitting in my stomach, undigested and rotting). I saw a number of Dr’s and specialists (3 in total, including a motility professor in Sydney), the first specialist I saw in Sydney told me at my initial consultation that “he didn’t know what to do with me, as I’ve never seen or treated anyone who has Gastroparesis, so I’ll have to do some research and you’ll need to come back’’. After being referred to another specialist in Sydney, I was then referred to a motility specialist in Sydney who conducted a variety of tests- abdominal ultrasounds, blood tests, stool samples, gastroscopies, colonoscopies, CT Scans, CT scans with contrast dyes, MR scans and MRI scans with contrast dyes to identify the cause of my Gastroparesis but even after all of these tests, the cause of my Gastroparesis was never found. Despite a range of medications being taken and trialed, I was deemed medically refractory so it was determined that my body would not respond to any medication treatment and after 6 months on an all liquid diet, most of which I was unable to keep down, I was referred to a specialist in Brisbane for assessment and was advised that the only treatment available to me aside from having the stomach removed and a feeding tube placed through the abdomen directly into the intestine was to have a gastric neurostimulator (pacemaker) inserted, which I did in April 2015. Although the gastric neurostimulator is not a “cure” for Gastroparesis, it has certainly improved the functioning of my stomach, significantly reduced my nausea and my episodes of vomiting and now allows me to eat smaller portioned meals several times (5-6) a day. I am still unable to eat all foods and primarily stick to my safe foods which are low in fat, low in fibre and easily digested. I currently take 8 medications a day to help manage my Gastroparesis symptoms and also take a number of vitamin supplements due to vitamin deficiencies caused by GP and the body being unable to absorb the nutrients from the foods I eat. Although the gastric neurostimulator has helped with the functioning of my stomach, I was informed in November 2016 following my fourth admission in 8 months for another bowel obstruction, that the paralysis caused by the Gastroparesis has moved to my intestines, the paralysis caused by the Gastroparesis has tracked from the stomach to the bowels. I have been on a number of medications, laxatives and enemas on a daily basis, unfortunately these have not helped with the functioning of the bowels and on most occasions, I am only able to have a bowel movement every 4-5 days and at certain times with the bowel obstructions it’s been 11-12 days. I am currently scheduled to undergo a FMT (faecal matter transplant) in May in the hope that this may help with the functioning of the intestines, failing this procedure I will need to have my large intestine removed and my small intestine joined up to my colon (Colectomy).