No help for the families of IBD and stoma surgery patients?

I realised after the fact that my family just had to get on with it all without any real medical  support, the support was all for us patients, and yes we needed it, plenty of it, but what of our families?

Most of us have been unwell on and off for years, and I don’t mean just a bit off, I mean full on housebound, bed bound, unable to attend events kind of ill. The year before my surgery I was a mess and my poor family rallied round and did things without me. I missed concerts that my daughter was in, quality time with my son when he was home from university, and my husband did everything and was marvellous. I had friends who did the running around for me too. Not everyone is as lucky and I cannot imagine how hard it must be for anybody who has to go through it alone. This would also apply for any type of chronic illness too.

My husband, wider family and friends watched me deteriorate over the year without proper support from anyone. The gastro team kept suggesting that although I had severe left sided disease I was also a bit depressed and should snap out of it. This was awful for me and my husband , because I thought he would believe them ( and he almost did, as they were the experts after all ) and I started to doubt myself, even though I was having temperature spikes, loosing a lot of blood and was constantly being sick. I couldn’t understand why I wasn’t being helped.

God only knows what my family thought. Yes I was ill, but was I as ill as I seemed? They had to wrestle with what they were seeing and what was being told to them. I had to wrestle with the feelings of illness and the thought that I was losing my mind.

Eventually my husband ignored the team and took me to A & E where I was admitted and was told by my surgeon that I needed a total colectomy within 72 hours ( it ended up being the next day, a Sunday). I remember my kids coming to see me before surgery was decided and I knew they must have been terrified even though we had discussed surgery within our family many times. My son said it would be the best thing and I would get off all those nasty drugs that I was given for the IBD. He was right of course, that was a good factor to consider.

As you can imagine, there were questions about why I had been left.  But they never really got answered.

After surgery I was very poorly with complications and my husband came every day for nearly three months with me in tears every time. We spent our 20yrs anniversary on the ward, I was going to try and get to the Costa downstairs as our anniversary date( we live the high life ) but couldn’t face it. The ward had bought me a cuddly toy and anniversary card to cheer me up .

It took it’s toll on my family, and although I knew this, I was too self absorbed with my own problems to realise. Whenever I cried he said he felt that all eyes were on him and that they would think he must have done something to make me upset as I  only got upset when he came. But in reality of course this wasn’t the case and the other patients knew I was in a dark place and very ill and often upset throughout the day, it just all floods out when a loved one comes to see you.  The doctors don’t really have the time to sit with relatives and explain everything so they only hear second hand from the patients themselves and that can get twisted like Chinese whispers.  I wasn’t doing very well so he arranged a visit from my sister in London as a surprise to see if she could help with my mood and get me moving more. I remember  seeing her peek around the curtain and again I cried. This was becoming ridiculous. She talked me into getting in the wheelchair and taking a trip to Costa with them all. This was a military procedure as I had a rectal catheter in and couldn’t get very comfortable without a mass of pillows in strategic places, blankets etc.

I promised her I would try and get up every day, and I did. I wanted to do it for my family. I realised that I had been so self absorbed with my pain and worries I hadn’t even thought about my family’s feelings, I felt awful for this. It was the hardest months for us all. Even after I was discharged the journey wasn’t over. My husband would take me out in the wheelchair by the river , and each day we would get a little further and I would get out and walk back. There were times when I would be sick at the side of the path and I said on numerous occasions that I thought I would never be the same , would never be able to walk the whole path, would never nip to the pub for a quick drink with him after work (this one sounds weird to put in but this was something that we enjoyed and I missed). I wonder if he thought the same. He certainly never said, he just said that of course we would and things would get better. He was absolutely right but he must have had doubts.

In order for me to be allowed home he volunteered to empty and measure my rectal catheter twice a day, he would make sure I drank and ate enough, take my pills and generally be my total carer until I was well. He was my total rock but really got no support . He even packed my wound on several occasions so that they would allow me to go away for a few days. He is a tough cookie so many people think it didn’t affect him, but I saw the odd time when he could have done with someone out of our circle to talk to, but there wasn’t really anywhere specific to the needs of relatives in this situation. I have read many a story like mine with people who are in hospital for many weeks/months and their families just have to cope with all the ups and downs.

My friends had also left visiting times in tears seeing me in such a bad way. Everyone cared so much but they also could have done with some kind of support network. Maybe some information about what was happening and why, or a support group within the hospital for relatives and friends of those who have complicated illnesses or surgeries. I know this costs money and, to be honest, I would love to start something like this with the support of the wards, but I have no proper medical background so don’t think it would be allowed.

But I do have the experience, and that could be enough.