Feeling alone

I am 5 months post op, having had illeostomy reversal. I still have strange pain in my left side, although my consultant assured me there was nothing untoward going on in there.  He said sometimes there is a ‘kink’ in the wall of the bowel which can sometimes stick, and I might have this pain permanently .  At first toiletry problems were bhirrendous, which I expected having read various horror stories, then it began to feel a little better, however I now seem to have reverted backwards.  I range from constipation one minute and then disastrous diarrhoea like explosions the next. The latter results in me not getting to the loo in time, as there is literally no warning, this can happen even after I have managed to go naturally. I’m beside myself as this is causing so many problems, I’m afraid to go out, and have experienced this whilst shopping, so am becoming a recluse. I try to use Tenna, but of course they are not designed for this problem, and don’t know what I could use, as we live n a small village, miles away from a big town, and can’t risk going out that far. My husband says I’ve ruined his life, as I’m restricting him from having a holiday or going out for a whole day. He hasn’t been supportive throughout these awful two years, and I feel very alone. I’ve tried my stoma nurse for help but she says I’m no longer under her care, although she wasn’t much help when I had the stoma, she only visited once in almost two years, when I had terrible excoriated skin around the stoma area. My GP is no help and the practice. Nurse says she can’t help either. Who do people talk to when they are having such problems. I’m at the end of my tether, I have two grown up children who have been very good but I can’t keep burdening them with my troubles, they have their own little families to care for. Any suggestions on who I could talk to? I would be very grateful for any suggestions. Many thanks for reading this and I apologise for the somewhat too graphic text.

  • Hi sue ...

    Wer all petrified at times and scared of more surgery or treatments ... and get the colly wobbles on every test ... appointment ... it's normal ... even those really strong ones still feel it .. and every extra ache or pain could be cancer knocking on our door ... that does not make you a wimp ... it means your just human ... I can read your strength through your thread .. everyone that has answered you can see you are wonderfully brave ... esp without the support of your hubby ... 

    He's the wimp .. he's weak because he can only see his own pain ... and never think your being a hypochondriac... we all have that a tad when we're on this journey ... it's your cancer ... never worry about asking them questions .. McMillan  and nurses on here both have a free phone number Monday to Fri...they sure helped me a few times ...

    Always here if you want a chat ... big hug as always ... Chrissie

  • Hello Sue, I can see how worried you are by the time of your post (though knocking some sense into your internet connection may also have contributed!)   As Chriss says, we all feel like that but look at it this way - if you don't contact them because you're scared of something else being found you'll still be worrying nonstop, but if you do contact them then at least you may get an answer to the problem, which may not necessarily be another op.  Even if it does mean more treatment surely that's better than sitting there not knowing and going through what you're going through now?  Do you have a colorectal nurse on your own team?  Good idea. 

    Okay, off my soapbox now and sending love, take all care, Hazel xx

     

     

  • Hello again,

    Thank you both for your messages. The last time I saw a colorectal nurse was almost a year ago, when I had the dreaded bag. Haven’t seen anyone since my reversal other than the consultant. I know the colerectoral nurses office is on the ward where I was, thought I could contact them perhaps. When I first came home after my first op a Macmillan nurse representative did call to se me, but that was just the once. I know they’re extremely busy all the time with people probably worse off than me, so I might try the colorectal nurses first, see what they suggest. 

    Sounds like I’m windging all the time, doesn’t it sorry if I give that impression, keep trying to think positive.  One silly good thing happened yesterday though! I managed to go into town and back home again without needing a loo, until I got home of course ! Think that impressed my husband. What a small achievement ! .

    Take care 

    Sue xx