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Not coping well: recto/entero/intussusception

Posted , 6 users are following.

edith-
edith-

I posted last year that I had been diagnosed with rectocele, enterocele, internal rectal prolapse/intussusception and perineal decent, after 9 years of incorrect IBS vs IBD investigation.

I've seen a colorectal and urogynae surgeon twice now and each time I'm told to wait another four months to see if the bowel straightens out improving things and if not, they dangle the carrot of talking about possible reapairs in the four months time. They have said that they are hesitant to perform the surgery when I am relatively young (28) and without children. In the interim I've had biofeedback (beyond pointless for me) and I'm now using peristen irrigation which means I am able to clear my bowels most of the time in one or two attempts, rather than up to 15 times a day without it. 

In the last couple of weeks however, I feel like the rectal prolapse has slipped further down and I am truly at the very last threads of my ability to cope. Even when my bowel is empty via the peristeen I am stuck in this horrendous cycle of being incontinent of mucous and blood causing almost incessant thrush, fissures, terrible tenesmus pain that keeps me up all night passing the aforementioned every half an hour and all the other symptoms of dragging pressure and pain I know so many of you sufer with. 

My bowel nurse has arranged an urgent appointment to see my consultant this Friday and feel that I now need to demand they do something about this. My Mum will be attending with me also, she gets so upset and angry to see me suffer, so perhaps that will help relay just how bad things are. With other things that are going on in my life I think I might speak to my GP as well about feeling quite a change in my ability to cope and have resilience to things. 

I'ts cathartic enough in sharing this with women that understand, but if anyone has any advice it would be greatly appreciated! 

3 likes, 15 replies

15 Replies

  • edith-
    edith-

    Posted

    Also, I know every trust is different and also severity of cases, but what waiting times did you experience once you had the go ahead for surgical repair? 
  • Jan999
    Jan999 edith-

    Posted

    Hello edith I remember you posting last year. You are having such a horrible time and something in my opinion should not have got to this stage really. I can see why there's bee some hesitation in dealing with some of your issues because of your age but it has got to the stage where it's unreasonable to let things carry on as they are......in my opinion of course. I think you have to wait to see what your consultant has to say. You probably do this anyway but write all your questions  down beforehand so you don't forget to ask anything and document how your days are. As far as waiting lists are concerned well how long is a piece of string? Most Health Trusts are struggling to meet timescales, your consultant will have some idea but if you are in the London area it can be about 6 months in some cases x

    • edith-
      edith- Jan999

      Posted

      Hi Matron, thank you again for your invaluable support and kindness. 

      He has said that things are past the point and that surgery was really all that could be done now, but wanted to bide as much time by conservative management. I'm not able to do that anymore so I suppose I am just saying to him that this is enough now and we need to progress to whatever repair I'm indicated for. I am indeed so good to get on the list as soon as possible x

    • Jan999
      Jan999 edith-

      Posted

      They were my thoughts exactly but I'm always cautious responding. I think surgery is the only option for you and on past experience (mainly professional) there's every reason it will be successful then you can get on with life.

    • edith-
      edith- Jan999

      Posted

      I'm fortunate that I used to work in the NHS and have a bit of a natural stoical disposition so that does help me position what I'm going through and understand the pathway to some extent, but do understand that you don't want to upset or scare anyone. Hopefully things will be set in action on Friday and as you said I can get on with my life (getting back into clinical nursing!). Thank you, Matron x

    • Jan999
      Jan999 edith-

      Posted

      Do you know I forgot you are a nurse. You need to be well because you are needed so much. Let us know how you get on xx
    • edith-
      edith- Jan999

      Posted

      When I am eventually in the position to return back the wards, I hope to be under the leadership of someone like you, Matron. 
    • Jan999
      Jan999 edith-

      Posted

      That's very kind of you. I'm retired but wish the NHS was the same as when I started nursing. Fortunately I can pick and choose what I do now but not for much longer because I intend to stop the consultancy  and urogynaecology work from the summer. I hope you'll be able to return to work soon. I can imagine you miss it.

    • edith-
      edith- Jan999

      Posted

      I do indeed; I was in biomed before so lucky to be able to return to research but I so want to be patient facing again. I was examined today and my consultant said that my rectum is completely occluded now, the enterocele is palpable and the rectocele is a lot deeper. He said that they'll discuss going forward with a ventral mesh rectopexy at MDM on Monday and hopefully the surgery can be performed within a month.

    • Jan999
      Jan999 edith-

      Posted

      It is good news that your surgery can be performed very soon edith. You will need time to recover obviously but hopefully you will be back to work once you have fully recovered x
  • brie95061
    brie95061 edith-

    Posted

    Hi Edith, i just wanted to let you know there is light at the end of the tunnel, unfortunately some peoples tunnels are a lot longer than others. I had my first child at 23 and had an episiotomy because he was big. Almost straight away i started having problems and was always told by my gp it was minor and stop worrying. Anyway im now 38 and in march 2015 i had a hysterectomy at the same time i was supposed to have prolapse repairs but my surgeon informed afterwards she didnt think they were bad enough so left them. Needless to say i was gutted but the surgery was done. A year and a half later (nov 2016) i finally had my repairs. i too had rectocele and cytocele repairs as well as sacroscopinous fixation and my perineum reconstructed.

    Believe it or not that is very short version of events but the wait jad been worth it.

    I was signed off work for 3 months and ny first day back was today. Im being phased back in so only doing 3, 3 hour shifts this week so nothing too heavy.

    Just wanted to give you some encouragement because im like a new woman, the repairs have all worked, i can go on long walks without any pain, dropping or dragging feeling. I can laugh, sneeze and cough without wetring myself and im pain free for the first time in years!

    I hope this gives you some comfort and i hope you the answer and surgery you need soon.

    Keep us updated please.

    Brie 😀

    • edith-
      edith- brie95061

      Posted

      Hi Brie - thank you so much for sharing your story with me. I know that women like us so often have years of suffering, being bounced from incorrect referral to GP time and time again. I'm so pleased to hear that you had successful repairs and have a new lease of life. I was told today that they want to go ahead with a mesh rectopexy so I feel relieved that there might be some respite for me too x

  • Imnotadoctor
    Imnotadoctor edith-

    Posted

    Hi Edith

    I'm sorry you have had so much to deal with at such a young age. I can't add anything more than Matron has said but I just wanted to send you my best wishes. I hope your surgeon can help you.

    Sometimes you do have to be assertive & push for action to be taken. You shouldn't have to live like this. Good luck & let us know how you get on. Xx

    • edith-
      edith- Imnotadoctor

      Posted

      Thank you so much for your support. Thankfully during my appointment today I was examined at the beginning and he realised just how bad things have got for a so recommended the repair without me needing to beg, essentially!
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