My latest consultation

I got my letter from my GI yesterday. It's funny how, you can hear someone say something and think you are coping with it, but when it is written in words it's so much harder to take? I don't know why that is but for me having it written down makes it real...if that makes sense? I'm not posting this for mild entertainment, please remember that this is my life and not a soap opera! It takes courage to bear your soul to the world and share these intimate thoughts and feelings but I do so to help the thousands of other Gastroparesis patients who are battling this horrible condition. By sharing our experiences we can learn together and hopefully learn to live with the challenges that face us. So here it is: I reviewed xxx today. I am sad to say that the Nasojejunal tube feeding has not worked. She is only managing 17mls an hour and is feeling quite uncomfortable with this and sometimes in severe pain. She continues to loose weight and this is really quite worrying. She is also looking quite low and I thought she looked more down than I have ever seen her before. I am not surprised as we have really put her through a number of ordeals and nothing seems to be working. I am going to refer her for a further opinion to xxx in Manchester with regard to possible TPN as I don't see any other options at the moment. Dr xxx has considerable expertise in this field and may have one or two other ideas. I have asked him to see her as soon as possible in view of the continuing weight loss. We reviewed the fact that she has an 8mm gallstone. I did not feel that this was the cause of her symptoms and would only suggest removal of the gallbladder if she was having surgery for other reasons, but I have out this to Dr xxx in my referral letter to him. I have given her a further appointment in 6 months time. So that's the plan guys, I'm just waiting for my appointment to come through and we will take it from there. he also increased the dose of one of my meds which has helped me to sleep a bit better than I was and so now I can at least have a few hours of total rest from it all. All in all I'm doing ok, I'm just pushing as much as I can with the feed every day and resting a lot to avoid using my precious calories. I will be so glad when I find something that enables me to start living again xxx

Comments

  1. Jalee3 March 2012 at 18:08

    Sorry it is hard to see it written down! Let's hope the new doctor has some more ideas (hugs)

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  2. The Myasthenia Kid6 March 2012 at 02:49

    I am so sorry to read this hun. It is a living nightmare. Can you find the Manchester guys email address online? Try emailing him personally. Find out his secretarys number and call her daily to see if there are any cancellations. Im so sorry that yet again you are having fight all the time despite the little energy you have. You are an inspiration xxx

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  3. Minx6 March 2012 at 03:10

    Thanks for the support guys, it's so nice to have such supportive friends xxx You're right Rach, sometimes the only way is to pester like crazy but it's such a shame we have to do that. It's funny though because You come to accept that they can't fix you but when you have to fight so hard just to get through a day it would be nice for someone to acknowledge just how much of a struggle it is to keep on holding on. It's not just my life that's affected, my kids are really going through it and they just want their mummy back and poor hubs cops all the flack because I'm not able to help him. It's putting a massive strain on everyone and I just feel so so guilty for not being able to get better.

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