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.

  • Hello Mills and welcome.  Don't apologise; cancer can do nasty things to your body and we need to be able to talk frankly about it.  I have just taken a look on Amazon and find they sell a variety of pads suitable for fecal incontinence so you might like to buy them there online.  Others on this forum may read your post and have had similar experience so you may get useful information  from them too.  I am not impressed by your doctor's surgery not being able to help you with this; what are practice nurses for!   If you don't mind my saying so I am not very impressed by your husband either; you need support and love!   You are always welcome here to tell us your problems and how things are going.  Don't worry about any graphic details; if you need help then that is what you should request.  If you have any problems with obtaining the pads you need (you shouldn't have problems but just in case) come back and let me know.  Best wishes.  Annie

  • Thank you for your kind thoughts

  • While I have no experience of your particular kind of cancer (I had breast cancer), I too had a husband who was not just unsupportive but quite vile whilst I was undergoing treatment. I am now divorcing him and have found a man who loves me with all my scars, wouldn’t dream of being anything less than 100% supportive and who has changed my life for the better. Your only focus should be on getting well and not pandering to his selfish needs. 

  • I’m so happy for you that you have now found your ideal partner. After 46 years of marriage I’ve found it very difficult to understand why after all this time  my husband now vents his anger, and, it seems his hatred towards me.  I’d never have dreamed what a terrible impact this dreaded disease thrusts upon people, I thought I only had to worry whether I’ll make it through all this, without having to worry what his reactions will be each time I try to pour out my worries . I try to tell him that I’ve no one else to talk to, I can’t keep burdening my children who have their own little families to worry about. Just wish my darling Mum was still here, sadly I lost her a long time ago now, she would have been my rock. I’m trying to overcome the horrible side effects I’m experiencing, but I seem to go one step forward and two steps back. My husband constantly going on about having holidays and being imprisoned with me and my problems. I’m hoping for a speedy recovery and perhaps a happier life very soon.

    thank you for your kind comments

  • Hello Mills  - I haven't been on here for a while, but do dip in now and again and when I read your post I was so sad (and angry) for you.  I completely agree with Annieliz about your medical teams - what are they there for then?!  As for your husband, words fail me, he is a very selfish man.  If he wants a holiday, let him go on his own and leave you in peace. I am sure your children won't think of you talking to them a burden, they must be worried about you - though I do know how you feel not wanting to seemingly 'keep going on' about things, from my own experience.  I can't think where you can get help, but please do contact the Cancerchat nurses, they may be able to help - you can find them on the list of site sections.  

    My thoughts are with you, darling, and I send my love. 

    Hazel xxx

  • Hi there, thank you for your kind response. I am going to try and contact the Cancerchat Nurses for some advice on whom I could best speak to. It’s just so frustrating that I can’t   talk to anyone  nearby just to help resolve my queries. Not seeing my consultant till end of January, so can’t realistically wait till then, especially as I’ve spent most of the day in my loo, it’s a very nice bathroom, but there’s a limit to how much time you really want to spend  in there, isn’t there . I’m trying to limit what I tell my husband now, so that he’s not being inundated with it. I talk to my daughter every day either by phone or text and she is really good and tries to tell me not to worry all the time,she’s an hour away and is a lecturer so always busy, besides her having to keep a watchful eye on her hubby who has an enlarged heart and has lots of health issues.  My son is a brick, if it hadn’t been for him I’d still be waiting for the initial surgery when the cancer was discovered, he really pushed everything along,, he’s always ringing and popping down, he’s over 2 hours away, little love, and has his two boys to look after too. They are both very good and kind people.

    thank you again for your message, going to have a cuddle with my doggy now, he’s a little love, a daschhound, a cuddly sausage, he always seems to know when you feel down.

    You take care too,

    Love Sue (Mills) xx

  • Hi there ..

    I'm so sad your going through such a hard time, with a hubby thats so uncaring and crule ... my heart goes out to you ... I felt I had to add to the support you've got from our lovely members on here ...

    I was married to an uncaring man for 27 years and always thought one day he'd change ... he never did and the best thing I ever did was give him his marching orders ... I didn't know if I'd cope or manage to keep a roof over our heads .. one son still lived at home ... but you know I managed.. l learned how to laugh again .. and l think I did good ... yes it's scary ... I'd been married at 17 ... so it was like stepping out of a plane, not knowing if the parashoot would open ...

    Well I'm 19 years on .. and so glad he was not around when I got cancer ... he always told me I had a low threshold of pain .. well I proved him wrong ... I was braver then I ever dreamed I could be .. and I always thought .. good riddance to bad rubbish ...

    I hope when you kick cancers butt, you then kick his ... I know it sounds harsh ... but what your going through and the support from your kids, will get you through .. I think your a star, and amazingly brave .. wonder how he'd cope with going on this journey of ours ... everyone is so lovely on here .. you'll always find a hand to hold here ... so sending you a big vertual hug ... keep looking up at the stars and know one day, you'll get through this ...  Chrissie 

  • Thank you Chrissie for your lovely words .

    i know my husband wouldn’t be able to cope with anything we all are experiencing. Over the years I’ve nursed him through his haemorrhoid op, when he was a real wimp ! And latterly supporting him through his sleep apnea, and I know having to wear his mask all night is very uncomfortable for him, and by the way very noisy for m listening to it every night, and it gets on my doggy’s nerves too,  but as I’ve said to him on several occasions lately, when he says it’s all right for me! ,  given the option of the mask or what I’m dealing with, I know without doubt which one I’d choose, but don’t think he’ll ever understand. He’s a bigger baby than either of my children ever were, and always wants attention. When I think back to when my children were small, he was always jealous of them getting more attention than him! I should have known, shouldn’t I ! 

    Anyway enough of my bleating, sorry. Hopefully things will only get better, I’m trying to stay optimistic for everyone.

    Thank you again for your kindness

    God bless,

    Sue (mills) xx

  • Hello Sue, hope you enjoyed your cuddle with your sausage dog!  I love dachsies, I had one as my first ever doggie, bought from my first month's salary at age 16!  (Now 74!) 

    Have had a thought (ooh, bit painful!).  As you are still under your consultant, why not try phoning his/her secretary to explain things and see if you can get an earlier appointment?  I'm sure he/she wouldn't want you to be suffering as you are.  Worth a try, I reckon.

    Sending hugs, Hazel xxx

     

     

  • Hi there,

    sorry for the delay in responding to your message, I appear to have managed to mess up my internet connections here, we live in a small village miles from anywhere, connection in bad at the best of times, and I’ve made it even worse by messing it up even more! However, I’ve just managed to beat it into submission and hey presto I’m back on line! 

    I had actually thought of contacting my consultants secretary , but was trying to put it off, as I don’t want them thinking I’m a complete hypochondriactic pest., and the thought of them finding something else wrong, and saying more surgery petrifies which I expect everyone feels ,I’m a bit of a wimp really,  but having spent most nights awake worrying about things, I will take your advice and contact her, she’s not very good at returning calls, but failing her, think I might try and contact a colorectal nurse, I know my stoma nurse was completely useless..

    Thank  you again, and I hope you are keeping well. Ps. I’ll be 70 next year, so I’m not that far behind you :) 

    Sue xx