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,ย  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

 

 

Thank you for making my stoma journey less bumpy along the way

I think it is time I publicly said some thanks to those folk in my life that I couldn’t be without, and who have helped me get through the toughest times in my life.

 

You can become quite insular after stoma surgery, it’s all about you for a long time. How am I feeling ? what hurts? can I cope ? people running around after you whilst you are in hospital ( which in my case was almost 3 months ) help with taking the kids to various activities, some of which were not that close to home. Supporting me in my recovery which must have been an absolute nightmare, because it certainly was for me so god knows what goes through the minds of those close to you.

Firstly I would like to thank my husband, who has been amazing and pushed me through the tough times, which were many, having me crying every time he visited me in hospital because I knew I could cry to him. He would work all day and visit me all evening, then go home late and make tea for himself and my daughter, for three months, all whilst refitting our kitchen so that it would be ready when I got home. When I was discharged he sorted out a wheelchair so that we could go out by the river and I would walk a few steps then get in again, this would slowly increase each time we went out.

He even learnt how to clean and pack my wound when we went to my sister’s down south for her birthday party. ( Luckily she had it at home because I would have to lie down for a rest every now and then.) I had a rectal catheter in too and he would have to empty and measure it before he went to work and again at night. Not to mention my low moods, they were very dark times and he kept it together for me.

My mum is next. She visited nearly every day and again put up with my tears. She helped me wash, and took my soiled clothes home to wash. I could nod off if I wanted to because it’s my mum and she was there no matter what.

My wonderful friends need a mention too, I had many visits from my friends, again being there for me and my family. Jo and Helen would take my daughter to her choir rehearsal ( half an hour away) every week, sometimes twice a week. They cried when they saw me so ill, they cheered me up too. All my closest friends were wonderful and still are. A few of them came to clean my house when I was recovering at home, I love them all.

 

My children I thank for carrying on with university and school without falling apart seeing their mum in such a state. Helping dad at home, and being there.

The wonderful nurses on the ward who were amazing and never stopped looking after me to the highest degree. A few times I think I must have been a real handful, but they never changed their lovely ways.

A very special thanks to my stoma nurse, Kate, who came to see me just before my emergency surgery and then all through my hospital stay and beyond. I call her my friend because that is how she treated me, we laughed quite a bit, but she also saw me at low times. She held my hand when I had the NG feeding tube inserted ( let me tell you now, that is an experience ) and I can ring her anytime and she will get back to me.

To my surgeon, who saw how ill I was and got me to surgery and probably saved my life. He had a tough job because I was so ill and weak and I know that although it has been a journey and a half ( and still ongoing) I feel very safe in his care.

To my work friends and managers, your support has been lovely and has helped me get back to work much easier with your help and care. Being at work can sometimes be a challenge with my ongoing medical issues, but I feel able to cope much better knowing that I have that solid support.

I would like to thank ‘ A bigger life ‘ and TG Eakin for having me as a resident blogger, they have helped me get my story further, and I can give my help to others too.

To the Notts & Derby ileostomy team and young IA group. Thank you for accepting me onto the committee, I might not know what I am doing half the time ๐Ÿ˜‰ but I totally enjoy it, and I love the young IA nights out too ( thank you Helen from Salts for arranging these great evenings)

Finally I would like to thank my many new friends in the stoma world. Opening up about my journey has been a great experience and the support from everyone who’s own journey has been a challenge, is something I couldn’t be without. Support groups ( which I am with a fair few online ) are brilliant for the vast experience of stoma life, and stoma suppliers also come in to that category because they offer similar support.

 

THANK YOU EVERYONE

A look inside the bag- ( includes song performed and written by my daughter that represents my stoma journey)

WARNING- STOMA PICS

Having a purpose – My life has changed dramatically these last two years, firstly having an awful flare of ulcerative colitis that left me in such a bad way I needed emergency surgery. That in turn left me with major complications that are still a nuisance today. But despite all the bad bad times, I can now say that I feel I have a purpose.

That purpose is to spread the information about IBD and stomas. I started with a free blog site that I tailor made for Tomas, and decided to be very candid about my experiences. I couldn’t see the point of just sugar coating it as that would not cut the mustard. I am very sure my friends and aquaintances were surprised and maybe even slightly grossed out at first, I know I was, but it is like having a phobia, the more exposure, the less of a problem it is. I am sure if a friend of mine decided to write a blog about her rectum and poo styles , I would be surprised yet intrigued at the same time.

I would honestly have thought that if you had said two years ago that I would be writing about my bowel and poo at every opportunity, AND including photos, I would have laughed in your face. Absurd.

 

After quite a few months writing the blog and getting the odd hit here and there , I decided to step it up a notch and blow the cobwebs from my purse and pay for a half decent site with the name of my choice .co.uk. I was very excited as this meant I could use videos and links. So as soon as I was up and running I decided to post a video of my stoma moving, I know, I know, my husband said ” surely you canย  leave some things to the imagination ? “. But I knew this was what I needed to do. The traffic to my blog really began to grow, people made lovely comments and I felt I was making a difference. I won’t lie, it is a thrill when I get a lovely comment from someone going through a similar experience, but it is also disappointing not to get one on some posts, I don’t know if those particular posts are not as interesting or just that there is no need to comment. Either way, I will continue with my musings if only for that one person who needs it.

Oh and I am attending my first Ileostomy association meeting next week for Notts and Derby region, excited.

I am now nearly two years post ileostomy and I blog for my site, also for “A bigger life ” ( stoma information site run by TG Eakin, this is worth a look not just for my posts, although of course they are worth a peek too ๐Ÿ™‚ ) I tweet, and have joined many forums and sites. Although I haven’t met the people on them they feel like new friends. We all have that one thing in common that helps us all accept who we are now. Life does have it’s ups and downs, make no mistake about that, but generally speaking my life is much better and I almost feel it was all a dream in the hospital ( until of course, my stoma farts or leaks, and I remember thatย  my tummy is no longer svelte and smooth). I may be one of lucky ones that have been able to overcome the fact that I have a permanent stoma, and use it for my help and the help of others who may not have such a great time. Every single one of us is different with different needs and different issues so the help and support will be there for those ( including myself at times) who needs it. ( sounds like Gryffindor’s sword is going to appear).

I would also like to add my daughter’s song which she wrote and performed as a present for me during the hard times. I am immensely proud and absolutely love the song, I hope you do too. I am having a tattoo to represent who I am now and the song is based on that. I know I am plugging this too ๐Ÿ˜‰ but if you fancy having a look at more from her, please follow on youtube:

https://www.youtube.com/channel/UCJjPp6hrjmO-WI9duUWlvNQ

 

I will warn of stoma pictures etc, but I will not apologise for them. This is me, and this is my story warts ‘n all.

Colonoscopies

 

Colonoscopies can be performed for a variety of reasons but I will give you my take on them. I have had numerous with and without sedation.
The fear is greater than the actual procedure. There always will be exceptions to that rule but in general I find the whole thing not nearly as bad as I anticipated. The worst bit by far is the preparation.

You will be given some form of bowel preparation which is often a salty awful tasting mixture that you need to drink over a period of time, and because you can’t eat ,it is very nausea inducing I am afraid. But you just have to get on with it. After so long you need to start going to the toilet.
DO NOT PLAN ON GOING ANYWHERE as you will almost certainly need to go lots of times to clear your bowel out. Because of the timing of the prep you will be able to sleep, and in the morning you will need to drink one more sachet usually. You should be fairly clear after a while but the urges may still be there. As long as you have done as they asked you are ready. ( things may vary depending on when you are booked in, either morning or afternoon).
When you arrive at the endoscopy unit you will be taken to see the nurse before hand to talk about sedation and consent etc..you will be asked to get into a gown and you usually have to wait a short while for your slot, this is the time that most folk are nervous about the unknown, please don’t be, it is ok.
Next, you will taken into the procedure room where you will see a bed, a monitor and various other machines and items. Your doctor will there ready fro you , as will a nurse or two. One of the nurses will get you comfortable and look after you the whole time.If you asked for sedation this will be given now, you will have a cannula placed in your hand or arm and the sedation will be given.

The nurse will give you an oxygen nasal cannula or similar which is just a small foam piece attached to oxygen that you place in one nostril. You may get a different type but essentially they will be the same idea.
Once the sedation starts working you will feel very relaxed and may not remember too much, you are still awake and may even watch the monitor if you are not too squeamish. You will be on your side with your knees up and they will then insert the camera. Lubricant will be used to help it in and you should feel fairly comfortable.
The doctors ( as there may be two) will guide the scope around the bowel and may ask you to move into a different position now and again.

If they take biopsies you will not feel this. Sometimes you make be asleep and sometimes you may wake a bit. I do find some pain when they are moving the scope around the bowel corners, as they tend to use your tummy to help push it around, but in all honesty it is soon forgotten.
Eventually it is over and you are wheeled into the recovery bay where they will let you sleep off the sedation. You then get a cup of tea and biscuits and are on your way. You won’t be allowed to drive after sedation. If you are lucky you will be given a copy there and then of the report.
Good luck and don’t be scared, it’s a breeze. You have probably been through far worse with what has got you there in the first place.