TPN and Adjustments

Aug. 27, 2014

The last few weeks I have felt like a zombie. Sleeping hours on end, too sick to move or feel like myself, low blood sugars and severe nausea. Hubby sometimes having a hard time waking me. Covered in hives under my port dressing from adhesive allergy. Has not been easy for me lately. Pretty sure my body is not tolerating something in my TPN (my main source of calories and nutrition). But I do feel like the TPN has been working and helping with my starvation.

We believe maybe the lipids (protein and fats) part and the main source of calories in the TPN that could be making me sick. Lipids are mostly made up of soy oil and I have noticed over the years I have become very ill after having soy from my body not tolerating it. Same reason I do not do well with feeding tube formula or almost all protein drinks. And from what I heard, only soy based lipids are approved for use in USA. So does not leave me with many options. Yesterday I took a day off from TPN and it was the first time I didn’t feel deathly ill in few weeks, but also left me hungry. So my body is really reacting to something in the TPN that my body cannot handle. But I still need the nutrition. Tomorrow adjustments will be made. Talking about removing the lipids, so feeling a bit more hopeful. Most say it takes time to adjust. I am still grateful for having the TPN and for nutrition and calories. Because without it, it hurts and is scary to starve. So hoping my body will do better soon with new adjustments. Thankfully, I have started to be able to eat some soup and a little bit of simple and plain foods in very small amounts. Baby steps. Thanks for all the support. It has been a scary time for me. And has not been easy talking about all of this. I tend to say I am ok when I am struggling because I just don’t know what else to say. But it has become clear I am pretty sick and this is just part of my life. Trying to stay alive each day I wake. Just thought I should give an update since many have been asking. Thanks for reading. Good thoughts to everyone.

3 Responses to “TPN and Adjustments”

  1. Casi Says:
    September 10th, 2014 at 2:48 pm

    OMG, this is terrible. Yeah, I wasn’t able to consume any animal products, soy, wheat or processed food. When I was at my worse, I ate apples, raw almonds, and chickpeas…basically only raw nuts, fresh veggies, some I juiced, and some fruit…too much fruit made my blood sugar drop. Chickpeas were the only beans I was able to eat. But you sound like you need to spend a few days hooked up to an IV in order to have you vitamins directly administered into your bloodstream, by passing you whole digestive system.

  2. Stacie Says:
    November 2nd, 2014 at 6:38 pm

    Hi Julie,

    I am so sorry to hear you are struggling so much. I am hoping you’ve had some improvement since your last post. I know how exhausting it can all get. I have been sleeping a lot & wiped out just with the little things. Therefore, I haven’t felt up to reaching out much, but I wanted you to know you are on my mind often.

    As long as you can tolerate, keep sipping on soup and small amounts of solid food. Otherwise, your intestines can forget how to work. This was one of my major issues when I met you (in MN) after my bowel obstruction surgery/GJ placement and right before your TP-IAT. My body had forgotten how to digest solid food because I went 10 months on boost alone. Followed by 3 months of TPN & unable to tolerate anything by mouth. It’s all a catch 22, isn’t it? I know throwing in gasgroparesis complicates everything! You can only do what your body allows. I remember people telling me just to force myself to eat. They couldn’t comprehend, the fact, my body rejected anything & everything by mounth due to numerous adhesional strictures/obstructions. Plus, the re-sected opening from my stomach to my intestines was the size of a pinky finger (as a complication from my TP-IAT). If I ate it, it came right back up. As if I could control that…….right?

    Stay strong & I hope you can start feeling a little better at least for awhile, you deserve a break! Some of your pictures are super crazy (your flexibility) ouch! Thinking of you!

    Much love,
    Stacie, xoxo

  3. juliebernal Says:
    November 7th, 2014 at 4:12 am

    Thank you Stacie. It is so nice to hear from you. I miss you! Many have been asking about you in the groups. So many are thinking of you. So sorry to hear you have been so tired. I can totally relate and understand. It is not easy living with all these health issues, is it? Thank you for the advice. You always know what to say and how to make me feel better. I am just so thankful that we met and are friends. You are such a beautiful person, Stacie. Miss ya and sending you my love. xoxo – Julie

Leave a Reply