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Gastroparesis please help me

Posted , 8 users are following.

ambida
ambida

I'm literally at my wits end with all of this. I've been diagnosed with gastroparesis but because I am also diagnosed with anorexia, the gastro team are leaving my "treatment" down to the eating disorder team, whom are useless. 

I'm seeing my cpn next week and I'm going to beg to see the nutritionist. The lack of help due to lack of funding is ridiculous. 

I have a hiatus hernia aswell as reactive gastritis and the gastroparesis has been horrendous the past few months and I was only diagnosed in hospital a month or two ago, although it feels like a lifetime ago. 

I've been told to just eat and hope that my body will digest food. The thing is, its not. Each day that goes by its getting worse. I can't take anti emetics as I get severe tardive dyskinesia and dystonia. 

I'm unable to drink any fluids but full sugar coke, although some days that doesn't stay down. My weight has dropped 5 kilos in the past couple of months. I'm on medication including ranitadine and lansoprazole and its so hard to keep them down sad 

I've tried just eating crackers and bread. I've tried the gastroparesis diet but nothing works. Im so dehydrated and my mood is getting worse. I genuinely need help and I don't know what to do anymore. I've been told if I can't keep fluids down then to go to a&e to be rehydrated via iv but that's all they can do. 

:'( I really really need help. This is horrible. Thankyou for reading xx

0 likes, 14 replies

14 Replies

  • ambida
    ambida

    Posted

    The nausea is horrific too. Ginger used to help but it doesn't seem to work anymore sad I can't keep ginger tea down as I can only keep coke down. Its horrendous. I'm so weak from it all :'( 
  • Sexysimba
    Sexysimba ambida

    Posted

    Please listen and listen well, you need to redo your stomach by getting it back in flow. Try using an enzyme such as papaya or acidophilus and also probiotics these will help to get your gut back in play . You shouldld also drink room temperature water not cold back of of tonmuch sugar, stay away from chocolate and all gas forming foods. Eat eggs as they are very easy to digest. Stay away from any food that will make your stomach work to hard. Can you drink lemonade? If you can then drinkbmint tea with a slice of lemon
    • ambida
      ambida Sexysimba

      Posted

      Thankyou for your reply. I've tried probiotics, my mum bought me some really expensive ones and I've tried herbal anti nausea and anti sickness medication but it makes no difference. I've tried papaya but its just burned my esophagus and made me sick. Lemonade and lemons also make me sick .... Honestly I've tried it all sad 
  • Lovelane09
    Lovelane09 ambida

    Posted

    Hi.    I'm intrigued to find out what gastro paresis is exactly I have recently had an operation (I'm in the UK). I had the LINX procedure and since then whenever I eat I get these terrible burps, they're not noisy but very smelly and though I don't bring my food back up and there are no other symptoms I thought I may have gastoperesis I see my consultant on Friday so hopefully he can help but in the mean time could you explain what it is and of ots curable/treatable, what causes ot and what damage can it d if any ?

    in the meantime my heart goes out to you noones should be fobbed off and you just demand someone take you,serious       I will,support you all the way, your never on your own  and if I can help in ANY way please say.        Paul

    • ambida
      ambida Lovelane09

      Posted

      Thankyou, that's so lovely of you. The burps sound so horrible, I feel for you I really do. I hope your consultant can be of help on Friday. 

      Gastroparesis is the delayed emptying of the stomach. I started having acid reflux years ago but its never got to the point where food won't digest. I can literally drink something the night before and the next morning I'll wake up feeling sick and just throw up everywhere. Food just sits in my stomach and doesn't digest. The gastro team mentioned a feeding tube but the ed team want me to keep eating to keep my stomach "working" but its blatantly not sad 

    • Lovelane09
      Lovelane09 ambida

      Posted

      What about demanding to go to another hospital, how is your gp ? Are you in the uk ?    If they're telling you to do this and try that tell them your fed up with "trying" everything and you want to be referred to someone who specialises in your condition

      i don't know if I have the same condition but I do kmow that since my LINX procedure where they put a magnetic titanium band around the easophogus something's happened to the way my food is being digested

      please ambida don't give up   Be strong and I'll offer all the support I can

  • ann11007
    ann11007 ambida

    Posted

    Hello,

    Staying hydrated is  crucial.

    This works for me: when I have bouts of gastroparesis the best is to try to sip small amounts or even just wetting the toungue with rehydration fluids throughout the day and night then maybe. You could always dissolve some salt in your mouth too,  make sure you don't get dehydrated.  The dehydration feeling and exhaustion from not being able to keep food down is absolutely awful.

    When you can, small amounts of light soup or blended food at least 6 times a day may help.

    When ginger stopped working for me I reluctantly tried cyclizine available by prescription and over the counter. Suprisingly It worked, I had tried other pills without success.

    Also please note that not all probiotic combinations and strengths are suitable for you. Best to get someone like a nutritionist or medical herbalist to prescribe specifically for you.  Beware, Lansoprazole made things worse for me, it only helps if you have too much stomach acid.

    If you need to go to A&E make sure you contact your GP first before you go, it can help them to have a better picture of what is going on.

    • Lovelane09
      Lovelane09 ann11007

      Posted

      So what exactly is gasroparesis and how do,you develop it ?

      os there no cure, treatment ? What are the symptoms and what's the long term outlook ?

      sotry so many questions 

    • ambida
      ambida Lovelane09

      Posted

      Its ok, I developed mine from having an eating disorder. The easiest way to find information about it is to Google it, that's all I know of it since being diagnosed. Sorry I'm not of much more help. I am in the UK. Im in York. I was on holiday in Cornwall and they were absolutely amazing and wanted to help so much but I'm not a permanent resident there and I've only in my mid twenties so moving there isnt an option sad I'm sorry to hear you are struggling. I really couldn't say what it is, it could be gastroparesis but it could be a side effect from the operation that the consultant can help you with 

      Sorry I'm not very helpful. 

    • ambida
      ambida ann11007

      Posted

      Thank you. I did wonder about lansoprazole and whether it made things worse for me but the drs told me that's impossible. When I had my pH test though last year it came back normal. Thankyou for the tips about rehydration and soups etc, I'll try that today if I can get through this stomach pain. The anti emetics sound good and I really wish I could take them. I'm just so badly allergic to them, otherwise I think I would be half way sorted by now! I'm sorry you struggled sad I hope you are doing better xxx
    • Lovelane09
      Lovelane09 ambida

      Posted

      Amnida please don't apologise, I'm just gratefully can listen and support you.  You do know you can demand to be treated at any hospital,of your choice

      dont accept what they say, if your I'll you have a right to be treated properly 

    • ann11007
      ann11007 Lovelane09

      Posted

      Gastroparesis literally means stomach paralysis, as explained above it is delayed stomach emptying.. It can mean that nothing is being digested or not moving through the small intestine. This can lead to severe nausea vomiting and dehydration also other digestive issues. It is not clear why someone would develop this condition. Unfortunately it can only be managed not cured as such. Learning how to stay hydrated makes a difference to recovery. Some people find avoiding certain types of foods like gluten, dairy, fats or fibre, helps. Resting and if possible avoiding strain and stress may help.
    • Lovelane09
      Lovelane09 ann11007

      Posted

      That's horrible especially to the extent of ambida. It surprises me how many illnesses were unaware of but that cause so much stress and pain, I just wish I could be of more use thanks for enlightening me though
  • Bill1159
    Bill1159 ambida

    Posted

    I definitely feel ur pain. I've been going thru this stuff for over 6 mos now. My local GI dr. just kinda gave up and I talked to a specialist office today, who is supposed to b one of the best, and they said they don't give second oppinions but I could send in my info from my local GI and they would review it and get back with me. WTH is that about. It's frustrating as hell, I know.

    I wish I could help u with the diet and all but I'm not sure what to tell u. I'm a little on the opposite end. I like to eat. Sometimes too much. My issue is, I use to b a bodybuilder and power lifter, but after years of it I stopped due to injuries.  Now I'm back in the gym after 8 yrs and getting back in shape and my muscle is back, but it's hard to stick to a high protein, low carb diet and still eat the right stuff for this disorder. I didn't eat for 5 days but got weak. I tried chicken broth and crackers and protein shakes for a week and I thought I was gonna go insane, plus I was real irritable. Right now I'm trying lean ground beef with rice, protein shakes, and egg whites with cream of wheat, it's not working well either, plus I like my pizza once and awhile. It's like none of these drs. care. They haven't even tried any real meds or procedures on me, just tests, then the gastroparesis diagnosis. Then it's like, "sorry bout ur luck", and send me out the door.

    Sorry about rambling, but if u have any new ideas please let me know.

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