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

 

 

Anxiety, the invisible disability

 

 

#MentalHealthAwarenessWeek

Anxiety disorders are debilitating and I wouldn’t wish them on anyone. I have been a sufferer of anxiety for many many years, have seen a few counsellors, and have tried many things to overcome it. In my case the only thing that really works in any real sense, is antidepressants, and even they can’t fully control my anxiety.

Mine really kicked in when I was diagnosed with IBD. The uncertainty and fear really got to me. I can’t remember which was my first full blown panic attack but I do remember each one.

I went to London with some friends to see a show ( We will rock you ) and we were stopping over, I was looking forward it a lot and off we went on the train. I was fine up until we came into St Pancras and the panic hit me like a brick. I was a mess and what made my anxiety attacks unbearable was the fact that instead of feeling nauseous I would actually vomit.

So I jumped off the train and tried to find somewhere to be sick, I just had to go behind a bollard type thing, it was awful. These attacks occurred whenever I was going somewhere new. I went a few times to London to do a show and each time I suffered with an attack, which stopped me going away again for many years. When we were in the show, I came out in the interval and couldn’t go back in. I was crying and really was struggling. I convinced my friends to go back into the theatre fro the second half whilst I just sat in the bar on my own ( this felt better than going back in there). I rang my sister and she chatted to me until my friends came out. I had a similar one in Madame Tussauds and knew that my trips London were coming to an end for me.

I was invited to see Paddy McGuinness at a club in Nottingham with two other friends, I didn’t know the girls all that well at that time ( Since then we have become firm friends ) and one of the husbands said he would take us. I remember standing at the window looking for them and starting a panic attack. My husband tried to calm me and said it would be fine and I tried to calm the rising nausea and anxiety. I decided I would be ok and off I went. Well, in the car I spent the whole time keeping myself from being sick, it was scary and I just couldn’t get myself over it. We got there in one piece and finally my nerves calmed and I enjoyed the evening, being pleased that I had pushed myself through it. I don’t think my two friends knew anything about what I was going through in that car journey.

I used to go to adult tap dancing at my daughters ballet school, and we were going to perform at their annual show. We rehearsed all year and sorted outfits and logistics of where we were all going to stand etc, then at the dress rehearsal I was again struck down with this bloody awful debilitating panic and sickness, I managed to do the dress rehearsal and then a couple of days before the show, I just knew I couldn’t do it. The feeling of letting the team down was immense, and I felt a complete failure, a failure in life. I hated myself and the fact that I just couldn’t control my anxiety. It was time to see a doctor, and I was referred to a counsellor. I told her that I had got to the point that I would have to take a bag with me just in case I was sick. Because I knew I usually was sick, I really needed that crutch.

I had a course of counselling, which was fine, but it really needed me to do the work still, I knew what I had to do but no one can really tell you how to do it no matter what they say.

Years later and I was going to do a car boot at the local racecourse ground, I filled the car and me and two friends went in convoy with our cars. It was early hours and we had to queue to get in, I was in front of my friends and I got the panicky feeling again. My back went so hot it felt like it was against a radiator and I started to feel sick again. I was so cross with myself as I just couldn’t control it. I rummaged round for a bag to be sick in but didn’t have one. I had to phone my friend in the car behind and ask her if she had a carrier bag. She managed to find one and ran round to me so I could be sick in it. My friends are amazing and have always supported me, but I hated the way I was.

 

I was put on Citalopram anti depressants for my anxiety and have been on them ever since. They have helped me so much so that I can go abroad with my friends and am fairly ok. I say fairly because sometimes I have had those feelings but they have been so much better. Usually at the airport on the way there but I haven’t actually been sick.

I don’t think you can totally be free from anxiety disorders, you just have to manage them the best way you can. I really do believe that it is a disability because it impedes on your daily life. Just because you can’t see it, doesn’t mean it isn’t there.

 

 

Trying to control high anxiety-#WorldOstomyDay2018

It is #WorldOstomyDay so I thought I would write about something that affects many IBD and stoma patients, which is anxiety and / or depresssion. It is a taboo subject that needs more exposure so instead of telling my stoma story I thought I would share this important message instead.

 

Knowing you are booked in for surgery is a scary time, no matter what surgery or how many you have had previously. The nearer it gets, the more nervous I am. I have had other scarier surgeries where I was extremely ill, but it doesn’t matter, to me this next one is just the same. One of my worries about surgery is getting through the anaesthetic, I always think that maybe I have developed a heart complaint since last time and I might not make it. I know it is probably irrational ( notice I say probably, another one of my things is if I think it will go ok , I jinx it) It doesn’t matter that I have a pre op, that just makes me think they missed something.

 

I have high anxiety levels, when I had counselling they said it was very high. I have lived with anxiety for years and had panic attacks if I was in a situation my mind couldn’t cope with. Luckily with meds the panic attacks are much less severe ( I used to actually be sick and that caused more panic when I was going anywhere in case I was sick). This seemed to all start when the ulcerative colitis started, I would panic incase I needed the toilet when out, or if I started with a flare I would worry how ill I could become, as my first few flares were terrible and I was in hospital for ages, and being in my early twenties and never having been in a hospital before, I found it very overwhelming and scary. I thought I would die. They didn’t know what was wrong for a while and it was awful, so I am sure that is why I became the way I did. It ended up that if I was going anywhere away from my normal life, the panic would set it. I went to see We Will Rock You in London with some friends and remember sitting there in this big theatre feeling very sick indeed and looking around searching for toilets. I got through the first half but in the interval we all went outside for a drink and a break, I just burst out crying saying I couldn’t go back inside the theatre bit. I insisted I would be ok in the bar on my own and waited there for them. I rang my sister and told her what was happening . She wanted to come and fetch me ( she lived in London at the time) but I decided not to as my stuff was at the hotel. It was weird that I felt slightly safer in a very quiet bar than go back into that theatre again.

The panic feeling lasted all through the night and all the next day, and it wasn’t until I got home that I felt better. This has happened to me many times and I would even turn down some invites away because I just couldn’t control the attacks.

I remember taking a plastic bag out with me on the simplest of nights out, just in case, and the counsellor said I was using it as a crutch and I needed to stop taking one out otherwise I wouldn’t get better. I totally understood the reasoning and gradually, along with meds ( although I think the meds did most of it) I improved dramatically. The only problem is I don’t ever want to come off them incase it returns, a vicious cycle. I have had to increase them occasionally since my initial surgery as depression sneaked in and I went through a very dark time in the hospital. You can feel yourself slipping, I have never had it before but you can feel it coming like a dark cloud and don’t know how to stop it. I couldn’t stop crying either and I wasn’t the only one on the ward to feel like this at times. I am glad that I am ok now, and I understand how easily depression takes over. It doesn’t make you a weak person, it means you are going through something that you need help with at that time.

The kind of surgery that I have had is traumatic and has big implications on body image, anyone who has had a major surgery, especially one where your body has been altered ( and I don’t mean cosmetic ) is a candidate for mental health issues and needs all the support they can get. I do think that we should get some form of counselling BEFORE the surgery and after. I know if it is an emergency then that can’t happen, but in my case I was an emergency, but knew stoma surgery could be a possibility the weeks leading up to it, and the doctor must have known that too, but it ended up being a very quick chat with a stoma nurse whilst I was on the ward ready for surgery the next morning

These are life changing surgeries and more pre care needs to be done to help patients come to terms with what will happen to them.  I also feel that having IBD is life changing and more needs to be done to support those with these hideous diseases. I have been there and it’s not pretty. Helping the patients make the decision for stoma surgery is a must, you really don’t know if you are making the right choice to have one or not. If you had asked me if I would have had surgery sooner, the answer is a resounding “YES”. I was left to become so ill that the surgery became an emergency and the decision was taken from me.