Your Stories

This page is devoted to all of you who have your own stories. send me your stories so that we learn from eachother and support one another. I don't want anyone else to feel alone like how I feel, I hope that together we share and overcome this disease.

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Much Love

Hafsa x

Stephanie Willick   

I am a 29 year old living with gastroparesis and diabetes. I've been a diabetic since 1988 and I've had GP since 2007. In the beginning when I first started to get sick with GP, it was a STRUGGLE. It took a year to finally get a diagnoses. This was done by doing a gastric emptying study, which showed I had a 56% paralysis of the stomach. Two months after knowing what was wrong, I was still struggling  and was getting no help from the doctors and they weren't giving any insight into my condition. After two months of knowing what I had and no improvement my family took me to the Mayo Clinic in Rochester MN, USA. I was there for two weeks and they confirmed I had GP.  I started to see the only GP specialists in Canada, where I'm from. As soon as I started seeing him there was small improvements. I went 7 1/2 months with no symptoms at one point, which was great because I was able to work during that time. I lived a normal everyday life again. I came to the realization that a regular day for a healthy person is a dream come true for me!
  When a bad episode of the GP  would start I would go into the hospital with extreme pain and intense nausea and vomiting. I'd average 10 days in hospital for every bad episode. Many things can cause an episode, it could be something you eat or drink, stress, infections, or could be your blood sugars. I'd get home and only be there for 1-2 days then back in the hospital. If I was home for 5 days or a week it was like heaven to me! The longest stay I've had in hospital was 2 months and I've also had a 41 day stay. I went 2 years with not many improvement. In a 4 1/2 year span I spent 2 of those years in the hospital with 80+ admissions and emergency stays. Keep in mind that whenever I'm in the hospital I am not able to eat or drink anything, my stomach rejects anything and everything until the nausea and vomiting subside.
I went through rough times dealing with doctors about believing me about my symptoms because they didn't know what gastroparesis was and therefore didn't know how to treat it. For the first 2 years I'd say about 70% of the time my hospital stays were almost torture and a lot of suffering. I'd lay in bed not able to move because the nausea is so bad. It was very frustrating laying in a hospital bed in severe pain and no one would do anything to help, I just don't understand that especially being in a hospital.  The #1 reason they wouldn't give me pain meds was because they didn't believe in giving narcotics (morphine, diludid,or demerol is what I usually got) for abdominal pain. For me, the only way to stop the nausea and vomiting somewhat quickly, is to get rid of the pain, its as simple as that I've learned. The pain starts after vomiting a few times.  Giving nausea and pain meds quickly can shorten my hospital stay from an average of 10 days down to only a few hours or an overnight stay in the ER. After a couple years there was more improvement improvement. My endocrinologist stepped up and realized I needed the right meds. So she wrote a care plan for me for when I go into emerge so the docs have an idea of what meds and the dosages to give me.

I've learned what works for me as far as diet, and what doesn't work. I've learned that positive thinking is KEY!!, I reduce as much stress as I can. I exercise when I can. Whether its a little walk, stretches, yoga, pilates, anything to help keep my strength up. Rest is also key, if I dont get rest one night the next day could end up being a right off and I'm sick all day not able to eat or drink anything, and the nausea limits my mobility. I take nothing for granted anymore because without your health you have nothing. It doesn't matter who you are, what your age, sex or race is, health conditions and chronic illness don't discriminate. I don't let any opportunity pass me by. I try new things as often as I can and appreciate any and every experience I go through. Having a chronic illness, let alone 2 of them, is life changing. I have learned a new "normal". I will have bad days but the good ones do come, they might not stay long but the bad do eventually come to an end. Good days will hopefully become more frequent.
My #1 rule for living with GP is POSITIVE THINKING!!!!!!. The mind is a powerful tool!!!...and I've learned to take advantage of that and it really does make a difference!!!

Bobbi Zee
  1. I was diagnosed 6 months ago following bouts of very severe stomach spasms, chest pains, vomiting undigested food 5-6 tomes a day and generally feeling awful. Because since I was 16 I have suffered from mast cell stomach problems, stomach ulcers, IBS and dyspepsia, I just thought it was a flare up of my dodgy stomach. I had been diagnosed 2 years previous to this with Celiac disease. I have multiple food allergies and have always been sick on a weekly sometimes daily basis for years. 10 years ago I went back to my Gastro complaining of reflux and pain when eating and vomiting a lot, but after having gastroscopy was told my stomach was inflamed but apart from that looked healthy, so I just made diet changes and was given omperprazole to take regularly with my mebeverine and nalcrom. So jump forward to December 2011 when I started getting very unpleasant symptoms, feeling like my stomach was twisting, terrible burps, chest pains and palpitations, difficulty swallowing, vomiting continuously, nausea and dizziness. I couldnt cope with it for very long as symptoms were becoming unbearable and I wasn't eating and feeling very weak. I was referred privately to a consultant and after a gastroscopy, stomach emptying scan, Ultrasound scan, 24 hour PH and NG manometry, I was given the diagnosis of Gastropareis , esophageal dymotility and GERD, placed on 80mg of domperidone, 60mg of Ranitidine, 80mg of omeprazole, iron tablets,vitamins, ensure drinks and told to only have a liquid diet. I was told this would be a life long condition and that I would have to stay on liquids as my stomach was not working at all. I coped with this news fairly well, relieved that they had found something at long last and that all the symptoms I had been suffering with for years were not in my head, but there was an actual cause other than just putting it down to my EDS. I do have autonomic dysfunction so I guess it was only a matter of time before my stomach became a victim of this too. I went home and set the task of trying to creatively think of all the liquid items I could eat. It has been a real trial and error thing, I must say some days my stomach just has a massive hissy fit for no reason and I am left just being really unwell. But I know compared to some I am very lucky! Most days I only manage the ensure drink and if im lucky 40-60ml of soup, I am tired all the time and feel pretty dreadful. I did have a few months of the tablets working and feeling much better, the chest pains and palpitations have calmed down as has the constant vomiting. I vomit on a good week around 2-3 times and on a bad week its back to how it was. I do fear that things are not improving to how I would have wished and I have lost 18llbs and losing 1llb a week. 1llb doesnt sound too much now, much better than it was, but over a period of time I worry this will be detrimental to my health. I am small as it is, so cant really afford to lose much more weight.
    I had never heard of Gastroparesis and I have now done so much reading that I feel I know quite a lot! I am now starting to come to terms with the fact that what my dietitian said about feeding tubes may be eventually the only way for me, as my bowels have stopped working properly and every small bit of liquid I have is causing stomach spasms and pain and I just feel very unwell all the time.
    I wish it would calm down but I have come to the realisation that intervention may be necessary. I have been very strict with myselfl and the liquid diet not being tempted to try anything that would make me worse. I know some people manage odd treats and manage soft food etc but for me this is not an option. So I am back to the Dr to get advice and see what is next. I fear my journey in to the world of Gastroparesis has only just begun. On a positive note, reading other peoples stories I have been very lucky in that I got diagnosed within 4 weeks of seeing the consultant and put on liquid diet, I dint get rushed into hospital with a blockage or fighting for my life, or getting so emaciated before anyone would believe me or worse. So for that I thank my lucky stars!

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