Any one with Gastroparesis out there?

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I have had Gastroparesis for almost 5 years now and have subsequently put on 6 stone as my body constantly thinks I am in starvation mode. Trouble is I also have acid reflux which makes eating almost everything a bit of a pain in the bum. I have found that the only times I lost weight I was literally eating carrots and killing myself at the gym an hour a day. I know this isn't the way to go and would like to maintain a healthier balance. Was wondering if anyone else with the illness (particualry those who have gained weight) have had any success balancing their meals and exercise. Any advice would be appreciated :)

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  • Daffydilly
    Daffydilly Posts: 29 Member
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    I'm interested in any replies as my mum has just been diagnosed with this as a result of poorly controlled diabetes.
  • avendu
    avendu Posts: 5
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    I am sorry your mum has been diagnosed with this, do you know what kind of medication they have put her on? I found that a lot of the anti-acid or anti sickness pills only aggravated my stomach further. I would suggest your mum makes a food diary and eats small amounts of different food groups to determine what is safe for her to eat. I have found that I can eat Warburton’s bread fine but Hovis and Kingsmill makes me very ill, so I guess it is up to each person’s body. If she has trouble at night with nausea suggest to her lying on her left side with a pillow underneath her so she is slightly raised. I went weeks being ill through the night before I caught on to that one, it may not help if she has acid reflux in the morning but at least it stops you being so nauseous you cannot sleep. Thoughts are with her and I hope she learns to cope well with it, in many people it is a very manageable illness.
  • kenyabloodstone
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    I have gastroparesis and have been diagnosed with it for 7 years now. I am only 26 years old. I have gained weight because of the limited diet that I can eat. What little I can eat I still usually end up throwing up. I also have horrible reflux and was just diagnosed a month ago with Barrett's esophagus which is a precursor to cancer. I am currently on liquid erythromicin 4 times a day and zantac 150 2xs a day and prevacid 30 mg 2 times a day and compazine 4-6 times a day. I usually eat around 600 calories a day because I get so sick from eating that I am afraid to eat. I have to push myself to even make 900 calories which my doctors want me to at least reach.

    I am having gastric bypass surgery for my gastroparesis. They say that with bypassing the stomach there can't be any stomach mobility issues. My gastroparesis is pretty severe (sick every day for the last year/ year and a half). Its a drastic decision but I have been told that if I don't have the surgery I'll get esophageal cancer within a handful of years and the gastroparesis will keep getting worse.

    I don't know if I helped at all but I wanted to share my current story. I am going to be having the surgery in early September.
  • avendu
    avendu Posts: 5
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    I hope surgery goes well for you and I am sorry you have been having a rough deal with the illness. If you ever need someone to talk to my mail is always open.
    I was on Metoclopramide and then they moved me onto Domperidone, and I felt worse than ever, so I stopped taking them, silly I know but if you can't keep the pill down bit of a pescription waste. I have been through 4 different anti-acid pills to help with the reflux and none of them helped much either. They put me on anti-anxiety pills as my doctor told me the more I worry that I am going to be ill the more I will be ill. They helped to some extent but I still struggle to keep food down. I have been trying to average 1200 a day in calories, but I can just about keep food down for 30 mins on a good day so who knows what I am actually taking in. I find that some weeks it flairs more than others, this week I haven't been able to keep down so much as a glass of water, but last week I managed 3 meals a day for 3 days in a row :)

    My GP doesn't seem to be interested in my gastroparesis, he thought I was making it up at first because I was gaining weight *rolls eyes* He sent me to a dietician who just told me to avoid juice and maybe if I exercised and ate less I wouldn't feel as sick...thanks for that one lol. I really do have to force myself to eat sometimes as I get so fed up with being ill, but I end up making myself ill sometimes especially if I am going out for the night because I would rather be hunger and not feel sick than keep my food and feel like crap the whole night. It is a bit of a social life downer as I can't go out and eat with friends and half a small glass of wine is enough to set me off. I really appreciate you telling me your story, I do not know anyone else with this and it is nice to have someone to share with, most of my friends don't realise how upsetting it is, they just see it as me being boring for not wanting to drink :S
  • kenyabloodstone
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    Yeah I know the feeling. I get teased all the time because I don't drink. I've had many doctors over the years tell me well obviously you are eating something and keeping it down or you wouldn't be fat. They also sent me to a dietician and to a nutritionist who told me to exercise more and eat less. Well I eat 500-900 calories a day and I walk the dog for 30 minutes a day 2-3 times a week, go to tae kwon do 2 times a week for an hour each time, run at the park with the kids at least 30 minutes 2-3 times a week, try to hit the gym 2 times a week, plus cleaning and remodeling my house and my grandparents' house. I never stop moving until around 11pm. I had 2 doctors tell me I was lying about what I ate or did until I had family members (mom, sister, and grandma) come in and tell them what all I did then I switched doctors lol.
  • avendu
    avendu Posts: 5
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    I hear you there, I am a uni student so I often have a lot of downtime, enough to go to the gym an hour 4 times a week, swimming twice a week, zumba once and I walk everywhere. When I first started feeling sick and putting on weight my parents just said it was too much drinking (I don't often drink) and that I was making it up. They couldn't understand why I was telling them I was always ill but I was gaining. Even now with a diagnosis they think it is made up, it doesn't help that my sister is pregnant and has Hyperemesis gravidarum, so she is ill at every meal same as me, only difference is she has lost 4 stone :/ so that is more cause to say I am telling fibs. I am going back to the doctors soon to ask if there is anything else I can do to try and lose weight, if she says exercise again I will throw my gym log book at her lol. It seems extreme but I wanted to know if there was a surgery that could be done to help me. My other sister has Cystic Fibrosis and had a terrible reflux, she had her stomach twisted and has been fine with eating ever since. Seems drastic but I am getting sick of being sick.
  • kenyabloodstone
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    Yes I know the feeling and yes I am SO SICK of being SICK lol. I hope the doctors are able to help you. It took a cancer scare for them to start helping me. My parents always believed me and knew I was sick but then again I live with them and I was getting sick so much I didn't have any form of social life aside from work so they saw when I'd eat and then get sick. Some other family members didn't believe it until I was at a family gathering and ate about 5 bites of dinner and got sick. Its a very hard thing to go through and even harder without support. You can always ask your doctors about a surgery to help it they may not even think about a bypass or something as a solution. My first 5 doctors didn't until I asked them and they were like "oh well yeah that would work because it would bypass the stomach so your gastroparesis wouldn't matter anymore". I was like DUH lol. Good luck :D
  • cas122777
    cas122777 Posts: 33 Member
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    I am 34 and just got out of the hospital with the diagnosis of gastroparesis. I had at least 6 tests and this is what they found. I have had trouble in the past with digestion, gas, bloating, vomiting, and nausea. i attributed it to a very poor diet. Turns out that it was poor diet AND not knowing for my whole life that my body does not digest like a 'normal' body. i am on the 'first stage' of the diet. I have been on liquids only for 12 days. I am feeling a little better. I did cheat a couple of times with soup and mashed potatoes and am severely ill from them. I couldn't take not eating normal food at this time. lesson learned - back on track. i have found many sites while doing research over the last week. the sample meal plans are helpful but i am not sure how long to stay on each 'stage' until i can eat normal food (albeit softened or pureed). Is it more of a tolerance thing? obviously i am not tolerating much given my two cheating experiences. So like i said, lesson learned, and if anyone wants to friend me to compare stories or just to talk, feel free.