Where is the post surgery counselling for patients and their families

I feel the need to express my concern about how little help ostomates and their families get about coming to terms with life changing surgery. I am starting a petition which I intend to take to the government asking them to make it part of the policy for post surgical care,  that we receive help mentally post surgery from someone who has knowledge of life changing surgeries, until we can cope for ourselves. This would also help with any complications that have arisen from surgery as I would also like the counsellor to have access to the surgeon and stoma nurses to quick refer any physical difficulties we may have back to them. Surgeons can’t just leave people to suffer with complications like hernias and fistulas for years on end before they get repair surgery, as quality of life is reduced so much by these things.

I have met and spoken to many people who have had this surgery and who feel lost once at home on their own. They don’t feel able to go out much because of body image, (a big concern for most ostomates )as well as leaking, pain, and they think that this is their life from now on. They don’t like to bother medical professionals all the time if the bags don’t work or their skin is raw they feel there is nothing to be done. They don’t realise that it is not normal and they should keep going back until it is sorted. Post surgery counselling and care would help those many people in this position.

I had counselling that I had to ask for myself, and I had to refer myself which seems the way nowadays, it is wrong on so many levels. My main concern is the amount of time it takes to get a first appointment, mine was months after my surgery and I was really really struggling. Secondly the counsellors themselves have absolutely no idea what it is like to live with a stoma and the lifestyle changes that involves. I was given cognitive behaviour therapy which didn’t really help me at all, after my sessions ended I just pretended they helped so I could get out of there. I know I had some post traumatic stress but CBT doesn’t do anything for that ( at least that was my opinion for me and my mental health) People need to be put in touch with stoma associations and groups, as I have also met people who were not aware they existed. It would have made so much difference in their recovery.

After a couple of months at home it is generally assumed that we can get on with things and don’t need as much support, but it is exactly that time when it is needed the most. Any concerns have become apparent by then, folk have had time to dwell on the enormity of there surgery, body image issues have surfaced and family concerns may be bubbling away, sex, relationships and seeing your partner/parent/ family member who was once bubbly and active, become reclusive and depressed. If you haven’t got a partner you may be worrying about telling someone, and what will happen when you do.

These are all real concerns that may not go away without support and help from a professional counsellor with the right skills.

I am drafting a petition to the government to get funding for tailored counselling specifically designed to meet the needs of ostomates. I will post it on social media and my blog and I hope I can get as many signatures as needed to make this possible.

Thank you

 

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6 Replies to “Where is the post surgery counselling for patients and their families”

  1. Hi,
    Completely agree with this. I had my ileostomy 35 years ago, luckily no complications. However 5 years ago I developed life changing complications following a hysterectomy, bowel perforated and I ended up with a enterocutaneous fistula. I was in hospital 3 months fed through my central vein. Attempt at repair two years later failed.
    It’s been devastating and my mental health has deteriorated massively yet there is no help and no understanding, it’s made my horrendous situation so much worse.
    Happy to support any petition.

    1. Hi, thank you so much. I know there is counselling out there but nothing as specific as we need. I will post the petition once it’s available x

  2. Oh how I agree with this!! I had a terrible time, felt suicidal, kept reaching out for help. I saw a counsellor who compared my iliostomy to her being car sick!!!! I never went back. My second consultant wanted me to see a psychiatrist, but received a letter telling me this was only available for people with a stoma due to cancer. Surely we would feel the same mentally, for whatever reason we had a stoma!
    I could go on for ever! Please contact me if you think I could help.

    1. Hi Marj, thank you so much, I will post the petition once it’s done, they are actually helping me word it the right way for it to get okayed x

  3. I’m Becky 2016 I had liver transplant then took hep c pill got rid of viruses I got stopped
    up got gangrene Had ileostomy 10months ago 2018 its changed me for the worst

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