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    • #23276
      Brittany Foster
      Keymaster

      I am sure many of you have been aware of my saga with feeding tubes. It seems as though every tube I tried failed because of my anatomy. I tried a G tube and my stomach didn’t move well enough to support it. I tried an intestine tube and the tube would get backed up because of how slow my colon and large intestine is. The GJ tubes I have been having just get coiled back into my body because it’s as if my body is moving things in the opposite direction. The only choice that I have now to get nutrition and restore calories and essential energy in my body is through parietal nutrition through a vein. I will be getting a port placed soon to receive this type of therapy.

      Does anyone have experience with nutrition given this way? This is the solution for me right now because it just doesn’t make sense to open up my body and do a surgery to place a tube that is not going to function well.

    • #23301
      Jen Cueva
      Moderator

      Hey @brittany-foster, I am sorry that you need to do this but hoping this will help your nutritional needs. I hope and pray that using the port versus the previous tubes will help alleviate some of your pain. You need this to gain some strength back, too.

      I have not had experience with either for myself but patients when I was working. I think hat usually TPN is for those who cannot eat anything and PPN is to help improve the nutrition of those who may eat some but not enough for adequate nutrition. I hope that you can enjoy some solid food after this and not have issues. Is that the plan? To have the feeding and “pleasure feeds” whenever you can? Like McFlurries, hehe

    • #23307
      Brittany Foster
      Keymaster

      @jenc The plan for right now is to stop the tube feeding because the intestines and the stomach and even the colon just aren’t working well. It is as if the persitalsis in my body just kind of reversed or is in shut down. I am really hoping that the PPN will be able to give me the majority of what my body needs but I am worried about the monitoring of different organs that goes along with all of that. I know that I now really have to take any fevers or signs of sickness seriously since my body could attack that port at any time. That’s currently one of my concerns.

    • #23317
      Carol Volckmann
      Participant

      Brittney, I hope this is the answer for you – you have been through so much! Your fear of any infection has to be dire. I wish I knew more about this so I would be of help. And now with the fear of this new virus and hitting beautiful Rhode Island, the only advise I would share is when you have to go to the hospital, clinic, stores please do get a mask. Certainly don’t think you need one taking your fur child out! Both my husband and myself have masks when going to the doctor, clinic or hospital. Please keep us posted on how it goes for you. Lots of gentle hugs!

    • #23335
      Brittany Foster
      Keymaster

      @cdvol3gmail-com it is so unfortunate that it has hit RI and it also is in Mass which is where I will be going for my pre op testing and my surgery on Friday of next week. I really hope that this gives me some strength and nutrition and maybe even helps to get things moving again once I am given the proper therapy to heal the body. I feel like it has taken such a hit and I am surprised that I haven’t been more sick this season with things like the common cold (knock on wood) . I ended up with Flu A in January but honestly couldn’t tell the difference between that and my normal flare up fatigue feeling. Just goes to show how bad A** chronic illness warriors are when we can’t tell when we have the flu hahahah! thank you for all your support and well wishes

    • #23341
      Jen Cueva
      Moderator

      @brittany-foster, I hope and pray that the PPN will help you with your nutrition. I know that your body has needed something to help with healing from all of your surgeries. I can understand your concerns with the port, it is something to think about. Hoping and praying that your body accepts the port well and then you will get that nutrition. Please do update us next week when you go.

      I love that statement, “Just goes to show how bad A** chronic illness warriors are when we can’t tell when we have the flu”, so true, Hehe

    • #23351
      Brittany Foster
      Keymaster

      @jenc it’s so true! I was so shocked that I had the flu. I mean I knew I must have something when I did because I had a fever of over 100 and my usual body temp is pretty low honestly. So I feel feverish even with a 99 temp. CRAZY!

    • #23357
      Carol Volckmann
      Participant

      Your not crazy Brittney. My temperature has always been low 96.7-97. When I came down with that respiratory cold a month ago my temp went up to 103 – I know I have a fever if it goes to 99 like you. Sometimes I have a difficult time convincing a nurse or doctor that at 99 I am running a fever.

      On a bigger note, please keep us informed on how your surgery I know everyone is praying that this is the answer and you will FINALLY be able to get the nutrition your body needs. Now, if they could only add all the flavors you love!! Haha

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