Late Effects

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Hi all,

 I hope everyone is doing well.

 I don’t know how to start this but here I go.

 I have radiation enteritis and I worry most of the time. I have two stomas (a colostomy and an urostomy) and I was diagnosed with a prolapsed pelvis last year. I also have a fistula (down below) which leaks constantly. Fortunately I have been given the all clear (yay and thank you) and I have been discharged from the cancer hospital too (yay and thank you). But the late effects are getting me down and I worry constantly.

 I have to take Laxido several times a day to keep my colostomy working. I worry if it doesn’t “go off”, sometimes it doesn’t go off after taking a laxative and I worry constantly. I am too scared to eat. I feel like I am having a breakdown and I don’t like feeling this way. I feel like no one understands and no one reassures me either.

Sending you all love and good vibes,

Lisa xxxxxxxxxxxxxxxxxxxxxxxxxxx

  • Hi Lisa, I have no experience in this but you may want to also post in the Ileostomy, colostomy and stoma support group as there may well be others who have experiences ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike ,

    Thank you for your reply. It is lovely to hear from you.

     I am on the page you mentioned. 

    My anxiety is through the roof and I worry a lot. It maybe a combination of worrying about my health, which is something I have done for a while and losing mum, who I miss dearly.

    Thank you for your kindness and sending you love and good vibes.

    Your friend, 

    Lisa xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

    Lisa

    xxxxxxxxxx

  • Dear Lisa,I’m so sorry you are feeling anxious.I wish I could help.It seems so unfair you are suffering with the after effects after all you have been through.I do understand about the grief.I miss my mum too.Sending love and hugs.Your friend Jane xxx

  • Hi Lisa, I’m sending you big hugs and prayers.  Having been told you are clear from the dreaded cancer is wonderful news.  Life after cancer can be different and difficult, especially if you have laHearte onset problems from your treatment.  I was diagnosed in Dec 2012 with vaginal cancer and had the surgery, chemo, radiiotheraphy and brachytherapy.  My problems started roughly in early 2015. Like Heartourself I have a colostomy bag I call it my alien lol, a parastomal hernia which has become massive after I was involved in a RTA.  I also have two nephroscomy tubes one into each kidney with urine bagsHeartperm. I too have a fistula which causes bleeding, gunk and a terrible odour.  Everything internal is stuck together and the pain can be unbearable. Bless you I’m sure you can relate to that too.  MyHeartanxiety levels are through the roof too, but I’m a survivor just like you YAY.  I have flippen awful days, not so bad days and pretty good days.  From my own experience the colostomy problem is downHeartto laxatives, laxatives and more laxatives lol.   I take between 4 and 6 every 24 hours recommended by my hospital. Plus I try to eat healthily. Even then it may not give me any little bags of pressHeartes for days lol.  You can message me any time.  If I can be a shoulder to cry on, someone to laugh with, I’ll try my best.     I’m sending you congratulations on the journey you have just came throuHearth.  You are amazing, never forget that! Here if you need to talk.  Much love and Blessings to you.  From Carol xxxxxx

  • Hi Jane 

    Thank you for your reply and I hope you are doing well.

    I feel a bit better today but I feel tired and I am putting that down to the hot weather.

    I miss mum and I know you miss your mum too. 

    Sending you love and good vibes,

    Your friend,

    Lisa xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

    Lisa

    xxxxxxxxxx

  • Hi Carol ,

    Thank you for your lovely reply. 

    Boy oh boy, you have been through the mill too.

    The treatment you went through was the same as what I went through. No one explained about the possible late effects.

    I take between 3 and 5 Laxidos. As I mentioned before I worry if my colostomy doesn't go off and I am mostly scared and I cry a lot. I sound a barrel of fun, ha, ha, ha.

    I don't trust people. That is down to our next-door neighbours who verbally abused my dad and I last year. They said awful things and I have flash backs to that. Another neighbour asked us to go to her house tomorrow for a cup of tea and I turned her and now I feel awful as I think I have hurt her feelings.

    I lost my mum a few months ago and I am finding that hard. I miss her so much. 

    I am speaking to my GP this week and I will have a chat about how I am feeling. 

    I do have a cavachon puppy. His name is Fernando and he is seven months old. He keeps me on my toes but I worry about him. He is delightful.

    Thank you for your kindness,

    Lisa xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

    Lisa

    xxxxxxxxxx

  • Hi Jane  and Carol ,

    Here are some photographs of Fernando, my dad and myself.

    I hope you like them.

    Sending you both love and good vibes,

    Lisa xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

    Lisa

    xxxxxxxxxx

  • Hi my love. I’m health concerns very similar. Colostomy and urostomy and other bits and pieces following radiation damage and chemo many years ago. Like you I also have what I think is a fistula (down there) and constantly leaking. Thankfully my cancer was many many many years ago and no recurrence Fingers crossed tone2

    I’ve totally had it with anything medical, I know I should tell Dr about the fistula symptoms but I can’t face with the merry go round of appointments tests etc. I feel I’ve hit a wall after many years of late effects. I know i should be grateful and stop feeling sorry for myself but im at my limit at the moment. Everyone says ‘you do so well’ ‘you cope amazingly’ but inside I want to cry and say I’m not!
    Sorry I wasn’t meant to take over your post… it just all came out. I just wanted to say as we are similar if you want to message me I’m ok with that .I get how you’re feeling  xxxx 

    When I’m having spells when I’m not coping as well I like to tell myself, yes your feeling rubbish right now, but it’s not going to be for ever, get through the day the best you can (even if that’s a day in bed once in a while), I know my health won’t improve but I know the feeling of being useless and incapable, and not feeling worthy will pass and brighter days will come soon. Just get through the day, today.

    I hope you’re feeling better than when you were writing this and brighter days have come around for you.
    take care. Xxx