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Type1. I feel in complete despair.

Discussion in 'Other Health Conditions and Diabetes' started by sd29, Jan 17, 2017.

  1. sd29

    sd29 · Well-Known Member

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    Apologies in advance for moaning, I know I'm a lot better off than a lot of people.

    I have t1 diabetes, severe anorexia nervous, reflux disease, and have recently been told I have stage 4 kidney disease. Apparently they are thinking I may need dialysis in the near future. Neuropathy has damaged my bladder, stomach, and I have those awful fizzing feet and hands. I am mobility limited and have had cataracts removed from both eyes but apparently need further treatment. I've been having such severe hypos that I'm facing losing my driving license, which is another worry as I live in a semi rural area, alone. Basically, if I were your pet, you'd probably have me out down!

    I have been in hospital since the end of August and am going to be allowed home soon, which is great as I can start to think about having a real life again. I'm trying to think positively, but for the fact I have been told I need a permanent catheter and I'm devastated.

    I feel like an old woman, but I'm only 34. I hate having to have carers, and I feel disgusting and untouchable because I will have to live the rest of my life with a piss bag strapped to my leg. They have been talking about a suprapubic catheter, but I don't want a catheter at all. I struggled enough with a nephrostomy. However, I know what we want and need are often two different things.

    I was wondering if anyone else out there has experience of living with a long term catheter and how they cope with the day to day things like going out or how to dress to hide the damn thing? I just really want and need to have some hope right now.

    I don't want to feel this is it for the rest of my life.i feel that illness has taken everything from me. I used to have a great job, was totally independent and a productive life. Now I feel I'm facing a very uncertain future.

    Please, if you can offer any advice, I'd be eternally grateful.
     
    • Hug Hug x 8
    #1 sd29, Jan 17, 2017 at 9:53 PM
    Last edited: Jan 17, 2017
  2. CherryAA

    CherryAA Type 2 · Well-Known Member

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    I am not a Type 1 and you clearly have a lot of problems and things to deal with, I hope you find someone on here who can give you a bit of advice , but I'm sending moral support - little use that is I know ! ) hang in there
     
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  3. catapillar

    catapillar Type 1 · Well-Known Member

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    @sd29 I don't have any experience of living with a catheter, but you migh want to look into flip flo catheters - my understanding is they can be used without a bag, you just have to go to flip the valve and empty your catheter.
     
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  4. samantha13

    samantha13 · Well-Known Member

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    Hi @sd29 I'm so sorry to hear of what your suffering. I don't really have any advice to offer but sending you love and hugs! Hopefully someone will be able to share experience with you soon xx
     
  5. sd29

    sd29 · Well-Known Member

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    Thank you so much - sometimes kid words make more of a difference than any medicine can. I'll ask about the flip/flo. Thank you.
     
  6. Diakat

    Diakat Type 1 · Well-Known Member

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    Tagging @asortafairytale she is one of the eating disorder mods so may know people who have wider experience.

    I know a little about dialysis, my dad was on it for 30-years on and off around two transplants. You can still have a decent life if it comes to dialysis.

    I was catheterised for a while in hospital during pregnancy but it was temporary so I had the bag as a 'handbag' I am pretty sure they will have better solutions for longer term use, and my advice would be talk to your team about it. You'll need to watch out for infectious from the catheter.

    Edited by mod to activate the tag
     
    #6 Diakat, Oct 11, 2017 at 9:34 PM
    Last edited by a moderator: Oct 11, 2017
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