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Jpk

I am 4 months after stem cell transplant autologous.i due to t cell lymphoma. Lost a lot of weight before and throughout treatment s. I tried an Ng feeding tube and it got my weight out of the danger zone, then tried eating food but saliva, thrush, small stomach all made it too hard.went back on Ng tube and seem to have gut malabsorption issues and now anorexic. I can't seem to stop having the runs was hospitalised but the are was so bad I self discharged! Very scared as the only option the gastro specialist says is an IV feed in hospital for months and months she is worried for my heart too. Any advice on tolerating the tube I have a dietician but we keep the flow low but I am getting so weak. I am on omeprodole, anti nausia and loperamide
They say I am too weak for steroids.

Answers

  • Hi Jpk

    My name is Michelle, a SCT recipient and one of the online community champions supporting patients and families going through cancer and SCT treatment journeys.

    Firstly, i wanted to acknolwedge the difficult time you are having and reassure you that we have Specialist Nurses here that can offer you some support and advise, should you wish to speak with someone.

    I can relate to the rapid and significant weight loss. I reached a point where i was being prepared for Ng tube feeding but opted to try the high calorie fortisip drinks provided by my dietician at the time. Is this something you have tried, even in small intervals, or discussed with your team?

    The anxieties and fears your experiencing are all valid and expected. It seems your primary goal is to find a way forward regarding tolerating feeds to gain abit of weight back and increase your energy.

    I can't offer any specific advise regarding tolerating feeds, however, our nurses and patient team will have experience and suggestions you may find helpful.

    Im sorry your journey is proving so tough right now. We have other members of the online community that may be able to offer some insight and tips into Ng feeding.

    Do keep in touch with us. We are all here to support you during this.

    Best,

    Michelle

    Tom_AnthonyNolan
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