Life With A Chronic Invisible Illness by Guest Blogger Ashley Sellner

'If you have a stomach issue then why aren't you skinnier?' This is probably the
most offensive question I've ever been asked since I was diagnosed with
gastroparesis...ever heard of starvation mode? Yes, some GP patients are skinny,
some are in between like me, and some are very overweight. I like having a little
extra weight, especially for those weeks when I can't eat and lose 10lbs. 

I've always been really weird about my weight and self conscious and having
gastroparesis has only made that worse. Ever been starving, down 10lbs in 7 days,
unable to eat, and so bloated you look pregnant? I have...I had to go out and buy
a whole new wardrobe because of it. It's miserable to be bloated and nauseous all
the time. It's unbearable to feel that way AND feel horrible and uncomfortable in
everything you wear. My very supportive husband let me buy new clothes to help me
out and it means the world to me. I try not to let my condition control my life,
so it's nice to look 'normal' and not be in sweat pants and baggy shirts all day.

  Out of everything that gastroparesis has changed in my life, I think the thing
that aggravates me the most is to hear how people, loved ones and friends, aren't
supportive of the person suffering. It's hard to battle this condition 24/7, stay
perky and friendly, and feel all alone. I'm lucky that I have my husband, family,
and friends. Some people aren't that lucky and have 'loved' ones who have actually
left them because they said they couldn't handle it. 

 I started a new job last week and it's definitely made things harder. My employer
knows about my issues, but not how badly I'm affected at times. Starting a new
job is an exciting experience and I love my new position, but working is very
hard on me. Not only am I fighting the urge to vomit and dealing with constant
pain and nausea, but I'm also trying to keep up and focus and that can be
difficult. You wake up with a fever and a stomach ache and call out of work; I
wake up with that and it's just another day. It amazes me how much we adapt to
our situations. Millions of people every day walk around and live trying to
manage their GP and you'd never even notice it. 

 The biggest fear I have with GP is the fear of getting worse. The fear of feeding
tubes and pumps, disability; of having no other options to try. I have friends in
this situation and it's so sad. They just keep getting sicker and sicker and no
one can do anything. I'm also scared for when I get pregnant. I have the
possibility of feeling a little better, but I also have the possibility of
getting worse. Getting worse scares me more then anything. 

 If there's one thing us GP'ers have leaned it's that we never give up. The
people I know with GP are the strongest, most beautiful people I know. I'm sad
that there are so many of us but I am glad that I have them because there
support and encouragement and understanding can be the best medicine sometimes.
   

My journey EDS and CIP by Guest Blogger Lucy Watts

My journey with Chronic Intestinal Pseudo Obstruction (CIP) began around my 15th birthday. We initially thought it was only oral thrush and food intolerances, then IBS, and then things spiralled out of control. I also have Ehlers Danlos Syndrome (EDS), a connective tissue disorder, and secondary Postural Orthostatic Tachycardia Syndrome (POTS).

My gut problems started in the Autumn of 2008. I was overweight (very) but was eating healthily and had lost a pound or 2 each week for a few weeks. We thought things were going well but my tongue had this horrible white coating on it, which would break off in patches leaving red, raw areas of my tongue underneath. It was unsightly and painful too, as were the mouth ulcers I kept getting. No amount of nystatin would clear the "thrush" up, nor could we stop the mouth ulcers from developing. It got so bad that I began cutting foods out of my diet which seemed to trigger or exacerbate them, namely milk, bread, sugary foods and limited the acidic fruits I ate as much as I could - hard for someone who loved fruit. This continued through the early part of 2009, adding abdominal pain, early fullness, nausea and trouble swallowing. 

Although we did not know it at the time, I ate my last meal in March 2009. It was potato with baked beans, and I struggled to eat it, not even managing half. Between March and July I only managed to eat 1 small bowl of carrots per day, which were cooked until they were so soft that I could wash them down with fluid. My GP organised for me to have an abdominal ultrasound, which inevitably came back clear. When my symptoms did not improve, an endoscopy was arranged which was also clear. Biopsies taken at the time were, you guessed it, clear. We had no answers as to what was going on or why I was having such difficulty.

In August things took a turn for the worse. I was now eating nothing, drinking very little and in bed all of the time, exhausted. My mum used to come in to check on me fearing I wouldn't be breathing. I was admitted to hospital after a trip to A&E (ER) malnourished, severely dehydrated and with my kidneys on the brink of failing. I had lost 6 stones (84 pounds) in as many months, which took me down to a healthy weight for my height, and I think my appearance counted against me, as I looked healthy. After proving that I did not have an eating disorder, my paediatrician signed off on an NG tube to begin enteral feeding. I was started on medication to speed up my gut to help with the constipation, Movicol, Lactulose and Senokot, and the nurses spent a good few days flushing my body with fluid to get my kidneys working again. I came home a week later, NG still in place. 3 months later my PEG was inserted for long term enteral nutrition.

My problems didn't end there, however. The weight loss continued, albeit slowed right down, and I still struggled with pain, especially related to the feeds. I was needing ever increasing doses of Movicol to keep my bowel moving, and I wasn't tolerating my feeds very well. At the advice of my rheumatologist, who deals with my EDS, I was referred to a top Neurogastroenterologist called Professor Qasim Aziz. He specialises in unusual and difficult to treat gut motility problems, especially those seen in patients with EDS. I saw him for the first time in April 2010, and have been seeing him ever since. Tests he ordered, including a small bowel manometry, oseophageal manometry and barium swallow, showed generalised gut dysmotility. He gave me a course of erythromycin, followed by starting a daily probiotic called VSL #3 as he was sure I had Small Intestine Bacterial Overgrowth (SIBO). I was also started on Domperidone to help with gut motility.

My gut problems slowly continued to deteriorate, and I was losing weight more and more rapidly. We tried many different high calorie powders and fat emulsions to no avail. We also tried putting an extension through my PEG so I could be fed into my Jejunum (small bowel) but this was not successful either. 

By May 2011 my weight had dropped to 7 stone (98 pounds) - extremely low for my 6ft tall body - taking my total weight loss to 11 and a half stones (165 pounds) in less than 3 years. My red blood cells, white blood cells and platelets were low, as was my potassium, and I was very dehydrated. I was admitted to the hospital where my GI team are based (The Royal London Hospital in Whitechapel, London, UK) and was started on TPN on the 13th May 2011, with my Hickman line being placed a week later. After 5 weeks in the hospital I was discharged and we were trained in how to administer TPN and care for my line at home. My weight had steadily increased ever since; in fact, I've gone the opposite way now and need to lose a bit of weight. It's hard to believe I've been on TPN for over a year.

My gut was still causing me a lot of trouble and I kept ending up in the hospital with bowel obstructions. The decision was made to have an Ileostomy formed, and so in February this year I had the operation to form the stoma. It was definitely a step in the right direction; my surgeon said that it could only be one more obstruction until my colon perforated. It was so severely impacted because nothing was moving. I was taking 36-40 sachets of movicol every week to try and flush it out but it was going around the impaction instead of clearing it. Even the dreaded bowel prep did not work.

Unfortunately my small bowel keeps "obstructing" (pseudo-obstructing, there is no actual blockage) which keeps landing me in the hospital. They usually have to put a catheter through my stoma into my small bowel to drain it off, give me IV fluids to replace what I've lost and monitor me before sending me home. I am currently waiting to see my team, possibly as an inpatient, to decide how we move forward.

My bladder is also affected by both EDS and CIP, it holds up to 2 litres and I have a constant UTI which we cannot seem to get rid of. I have just been started on a 3 month antibiotic course, which will alternate every 2 weeks between different antibiotics, and I might be having Botox injected into my pelvic floor to try and help me to go. I currently self catheterise when I am unable to urinate, but I don't do it as frequently as I should.

So this is my story so far with CIP. I am at the severe end of the spectrum, in intestinal failure, but I hope my story will help others. I want you all to know that you are not alone. I have met some wonderful people through my illnesses, and despite the many downsides to this illness I can say, with my hand on my heart, that I have had some wonderful experiences. I regret that I am too ill to pursue a career in medicine, as I dreamed of doing, and that I am too ill to get back into education or have a career at the moment, but I am hopeful for the future.

May today be a good day for you.

For those who do not know about my other conditions, below is a description of what they are.

Ehlers Danlos Syndrome is a connective tissue disorder caused by a defect in the protein collagen. Collagen provides the structural framework for the body, connects body tissues (e.g. tendons, which connect muscle to bone), protects the organs and stores energy. It is often described as the "glue" of the body and is present in bone, organs, blood vessels, cartilage, muscles, tendons, ligaments and corneas. When there is a defect in collagen, connective tissues are weak and stretchy. Think over chewed chewing gum: when you stretch it, it does not spring back; it tears easily; and the more you stretch it the weaker it gets. It causes joint hypermobility, joints that dislocate easily and frequently, low muscle tone, early osteoarthritis, flat feet, joint deformities, weak blood vessels, bowel and bladder problems and problems with vision, and many more problems which are widespread and can be debilitating.

Secondary to Ehlers Danlos Syndrome I have a form of Dysautonomia, which is dysfunction of the autonomic nervous system. The autonomic nervous system controls all the unconscious functions in the body: heart rate, blood pressure, digestion, temperature regulation/perspiration, respiratory rate, salivation, urination and sexual arousal. The form of Dysautonomia I have is called Postural Orthostatic Tachycardia Syndrome (POTS), which is an increase in heart rate of at least 30 beats per minute upon standing or changing posture, often accompanied by a drop in blood pressure. It means I spend a lot of my time laying down, as my body doesn't cope well with sitting up and I can only stand to transfer with help. I am on medication to control this, but they have not had the desired improvement.

Tummy Troubles by Guest Blogger Maureen Ray

Gastroparesis: what is this they ask? It’s when my tummy doesn’t process the food I eat and it causes pain and bloating I look like I am 6 months pregnant but I am not. You ask me why don’t you look like you don’t eat? Well since the food stays in my tummy, it causes me to be overweight then I go through periods of weight loss.  It is a rollercoaster!

Three years ago I finally found out what was wrong with me for years.  I have suffered from constipation and getting full quickly. I thought I ate too fast and always had to use laxatives to go and no one ever questioned my problems. Then I turned 50 years old and they did the colonoscopy and found Gastroparesis.  I finally found out where the fullness, nausea, and constipation came from – they were a part of this awful disease. I used to eat salads( my favorite) and  lots of fresh vegetables.  Now I can’t have any and it is indescribable how my body craves the vegetables and fruits.  When I am at family gatherings and someone makes fresh salad, or chocolate dipped Strawberries , which by the way are sinful and delicious, I have to pass them up. Everyone ask me why I am not trying them and I have to try to explain that they are not good for me. Wow, they are amazed that something that you are supposed to eat to be healthy is not in my diet.  Potatoes and lean meat are the things that I have to eat, no fresh oranges or tomatoes.  Family members think if I would just try to eat healthier I would feel better.  Oh how I wish they were right.

Family and friends need to educate themselves about this disease.  We need support, not constant nagging about eating better. A medication needs to be approved so that our standard of life will be more than what we have now. Tummy troubles never stop but I shall keep on praying for that miracle cure of Gastroparesis.

My Story Continued from Monday - by Guest Blogger Charlene Johnstone

My story continued from Monday…..

I had been accepted in December 2009 for a trial Gastric Pacemaker (Electrical gastric stimulation) which uses an electric current to cause stomach contractions bit like a heart pacemaker. Even though this was what I needed I was too unstable to have the procedure due to daily seizures and vitamin deficiencies due to malnutrition. Finally in February 2010 I was taken to Glasgow’s Stobhill Hospital and the temporary pacer fitted. Success is the only word I can say. I was eating orally and the vomiting was minimal and my gastric emptying study had improved from 3% to 76% which was massive. Five days later it was removed and I was transferred back to Gartnavel. It was heart-breaking as I was back to zapped energy levels and vomiting constant. I was told I was eligible for the permanent pacer but funding had to be approved after all patients have had temporary trials then we were told there was 11 candidates and only funding for 5 pacers that year. Sounds ridiculous eh, all to do with money! The thought of another year like the last one filled me with dread! Privately i could have had the operation done by the same surgeon but for £22,250!! A lot of money your thinking and I was too but my family could not bear to see me like this anymore and they were considering loans and re mortgages! However my Mum spoke to MPs and my Consultant pushed things as I was deteriorating quickly and they agreed to fund the operation and I was transferred to Glasgow Royal Infirmary for the permanent operation on the 18^th of March 2010. One month later, shows you how much influence managers and politicians have these days in our NHS.

Agony is all I can say, but pain was well worth it. After a few adjustments I was off enteral feeding and capable of eating and drinking orally and was discharged home in May 2010 with no artificial feeding and no medications. Apart from a few tweaks I was pretty much independent and went on holiday with my son, my friend and her son. The kids loved it and I was so happy to be free from everything. 

Healthiness continued then in December 2010 I went into urinary retention and was admitted to hospital for investigation and catheterisation. It turned out my bladder was paralysed and my bowel at that point hadn’t moved for 3 weeks. By Christmas Eve 2010 I was so ill and was due to get an operation to remove most of the paralysed part of bowel and see how much was contracting, however I spiked a temperature on Christmas day and had what I thought was a migraine until I was vomiting, rashy and my neck was aching and that night it turned out I had Meningitis. I do not remember Christmas at all and I was transferred to The Brownlee which is an Infectious Diseases Unit. I was terrified and in pain but was in and out of consciousness and doped up on Morphine. 5 days later I was transferred back to the Western Infirmary but kept in isolation. My bowel was causing significant problems and I had a NG tube fitted to decompress my stomach. I got a central line placed in my neck 3 minutes before midnight on New Year and I brought it in covered in sterile sheets with a few doctors, although being on the 10^th floor I could see the fireworks from my window. I also had a femoral line placed on the 3^rd of January as I was put on TPN through central line and iv fluids and meds through my femoral line. Constant morphine made me nauseas so was put on regular IV cyclizine for the sickness to. Despite several operations, interventions, and no matter how many procedures, my Intestines had totally failed and I was told I would be on TPN, nil by mouth and catheterised for life.

I was transferred after 3 months to Gartnavel General Hospital where my own consultant was and he carried out some last ditch attempts to get things going but to no avail. I then became septic due to my 5^th central line at this point and was quite ill for some time. I was also referred to Salford Royal Hospital where they have one of two UK Intestinal Failure Units. I was transferred down for a review from their team and it was agreed that I needed to carry on with TPN but to be admitted to their unit when they had a bed but there was a 3 month waiting list so I was transferred back to Glasgow where it was agreed that I would be trained on TPN and allowed home. My Nutrition Team and nutrition nurse Lynsey was fantastic. I couldn’t ask for any better. I went through a couple of ups and downs with 3 line infections but in May 2011 after 7 months I was discharged home on TPN thanks to my consultant and nutrition team and of course BUPA.

It was short lived as in June 2011 I received a call from Salford to say I was to be admitted the following day to their unit for investigation. I wasn’t happy as I was just used to being home and spending time with my boy but I wanted to get down there and get some investigations that they do not have here and to see if there was any chance of a normal life. I was admitted to the unit and testing carried out straight away. The nurses cared for everyone’s Hickman and Picc lines and were very meticulous in their technique and care. My TPN was increased and I was improving until the 3^rd week when I developed respiratory failure and ended up in ICU which even though I was only in England I had no family there at that moment and was very scared. I was unconscious for some time but when I woke up and my Mum and family were at my bedside I felt relieved I was alive and safe because they were there. I recovered respiratory wise and when I could breathe for myself and became stable I was transferred back to the Intestinal Failure Ward. Most tests had been completed by that moment and it was confirmed that nothing could be done and I would have Intestinal Failure and be TPN dependant for life. The following day I spiked a temperature and it was thought I was going into respiratory arrest again but it later turned out I had Septicaemia for the 4^th time. This was pretty disheartening so it meant further IV antibiotics for 3 weeks but the good thing was they transferred me back to Glasgow to my local hospital for continued treatment and rehabilitation. I was finally discharged home in September 2011.

I woke up on the 14^th of January this year, 3 hours after putting my TPN on, shivering, shaking, nauseated and with a temperature of 40.2. I stopped my feed and flushed my line. This made things worse but instead of going to hospital at that point I administered some PR Paracetamol and left myself disconnected. I remained in bed until morning by which point I felt dreadful. I was wary of going to A&E in case it was just a basic urine infection so I held off(which is something anyone should NEVER do with a central line in place). By lunchtime I was feeling even worse and when I set up and locked my line this made things deteriorate further. Cutting a long story short, I found myself in High Dependency Ward in Glasgow Royal Infirmary as I had went into septic shock. The bugs had spread so much my line needed removed immediately and a PICC was placed for antibiotic treatment due to poor peripheral access.

I was in hospital for 6 months, I didn’t respond to antibiotics and my family were called on on 3 occasions and told to prepare for the worst. I now have a port and use heparin locks and I am still on TPN 7 nights a week for 14 hours a day.

I recently made a video on my journey for more a personal reason but I did post it to youtube . The global widespread of the video has been amazing and I've also done my piece in the UK for the tabloids to raise awareness.  I hope we can continue to raise awareness of this awful condition and knowing we have each other for support is very re assuring. Hope you are all ok….

Daily life with an invisible disease by Guest Blogger Diana Schaffer

Many of the patients with Gastroparesis (GP) or any other form of digestive tract paralysis will tell you that it’s nothing if not unpredictable. Like many, my symptoms tend to cycle up and down, which often means changing plans at the last minute. It means never knowing what will hit you the wrong way, what will decide to not agree with you that day, and bouncing back and forth between the few solid foods that are tolerable and liquids. Many require feeding tubes or IVs to live.

Personally, my symptoms have been putting me in a bit of a slump for the past month or so. Nausea and pain increase means just not eating enough, and that means a 15 lb weight loss in one week for me, and an additional 5 lbs over the following 2 weeks.

Not everyone who goes into a flare has the weight loss though. Twice, I have gained 50 lbs or more, each time, during and after flares. The first time is what confused my doc. The vast majority have tremendous weight loss, not gain. Although it seems to be becoming more common to gain, not lose.

You Are Inspiring! by Guest Blogger Megan Kondilas

One of my favorite quotes is “You can’t be brave if you’ve had only wonderful things happen to you.” My name is Megan Kondilas, and I’m twenty years old I live in New Port Richey, Florida. I have had some not so wonderful things happen during my life, when I was sixteen years old I had a horrible stomach virus that lasted for two-three weeks. It wasn’t such a “sweet sixteen” because this stomach virus landed me in the Emergency Room and my health has only gotten worse since. It took me a year to get diagnosed with Gastroparesis.

I had gone through so many tests, hospital stays, and different opinions from people in the medical professions on what I had. I heard the whole “its all in your head”, “you don’t look sick” or “you’re making it up for attention” thing from so many people.  That really hurts to hear that from anyone, no matter what age you are. I lost several friends and that was difficult, especially when you are faced with this illness that you find out there is no cure for and you will have it the rest of your life. You need to have people to lean on and support you through the tough times. I have had to grow up pretty fast with having Gastroparesis.  Instead of going to high school, football games and prom I was going to doctors appointments, having hospital stays and surgeries.

With having Gastroparesis, there were two options I could do with what I have been dealt with. I could 1. Be down , upset, and depressed that I am sick and feel sorry for myself or 2. I could make the most out of what I have been given and try to stay positive and maybe help others.  Well I’ve tried option one and that didn’t really work out that great for me. Option two has allowed me to still feel good… not good health wise but good emotionally. With having Gastroparesis it is so easy sometimes to be upset with the cards that I have been dealt.  I find that even though I may not be feeling well, that if I try and find something good in everyday and it helps lift my spirits.

This is an everyday choice that I consciously have to make. There are some days that I still do get upset about being sick. I do have those days where all I want to do is stay in bed or cry and I think that is okay. It okay to have those moments where you do dislike what you are going through and especially when its one thing after another, it does get challenging to look for some positives. You don’t have to be strong all of the time. So go ahead and have those days it is alright, but then pick yourself up. Find something to be thankful for each day, think of something positive to help you get through the tough times. Right now think of three things to that you are thankful for or three things that were positive today.

I love the fact that G-PACT strives to provide education, awareness, and support to others with this disease. It is so helpful to have support and the people that I have met with Gastroparesis whether it be in person or online inspire me to keep going and to keep fighting against this disease. I consider these people some of my best friends.  I help with The Gutsy Teen Lounge, one of G-PACT’s support groups, and that is one thing that helps me keep going is to know that even though I may be sick I can still make the most out of my situation and help others. This disease can get so lonely at times and it helps to know that you are not alone in this disease. There are others out there fighting against Gastroparesis that you can relate to, build friendships, and support each other. 

Anyone that has Gastroparesis is a hero to me. You are all so brave and even though we don’t always have wonderful things happen to us, we get through it. You are a fighter, you are brave, and you are so strong. You go through more than most people do in a lifetime. Don’t ever give up, you are a hero and your strength and bravery is inspiring.