Reflections for Father’s Day
To celebrate Father’s Day, we asked our ambassador Keith to share his experience receiving family support as an ostomate.
Suffering with ulcerative colitis
I have often thought that having a stoma is not just a huge deal for the person receiving it, but it also has a huge impact on the family of the recipient. I was fortunate in a way as my stoma was at least planned, giving me the opportunity to talk to my family beforehand to explain my decision; yet for so many people this life saving operation has been performed as an emergency procedure and therefore more difficult for the family to come to terms with.
I had been suffering with ulcerative colitis for several years and my parents were understandably concerned when they knew the procedure I had opted for. But their biggest wish was to see me well therefore they were nothing but positive about my operation. My children’s reactions, however, were varied. After the operation one of my daughters was particularly reluctant to embrace it. I think it was a psychological hurdle she had to get over in her own time. She was clearly pleased to see me recovering and to see me being much more upbeat but she had no desire to see my bag or talk much about it. I was initially very conscious of showing my bag and therefore a need to cover it up when people called or if I was in the garden without a shirt on for example.
My two grandsons had been told by their mother that they had to be careful when they visited as Bampi had a “bad belly”. They were going to have to curb their clambering and be extra careful when they gave me cwtches. Those instructions actually made them really inquisitive and they were intrigued by my bag, keen to see it for themselves. They were not fazed at all! I think that may well be because they had no preconceived ideas about colostomy bags and were blissfully unaware of taboo connotations that go along with them.
Mending broken bridges
During my illness, way before my surgery, my whole demeanour changed. This had a really negative impact on many of those around me; I went from being the life and soul of the party, to being an unknown person who shut himself away from loved ones. It was because I felt so bad about the way I was feeling that I did not care about upsetting others. I suppose the people who really knew me realised that this wasn’t who I really was, but there are others who have never forgiven me. I was very intolerant of my teenage stepchildren and their typically attitudes to life. I found it really difficult to cope and they in turn found it really difficult to cope with me and my black moods. This is something that we are continually working at – to mend those broken bridges.
Importance of family support
Having the support of family and friends at low times can make such a difference to your outlook and recovery. Recently my eldest son and one of my grandsons have been diagnosed with Crohn’s Disease. Battling with infusions and injections, they are also dealing with pain and fatigue at work and school respectively. It brings back difficult memories. I do think that because I have always been so open about my illness and what I went through, it hasn’t been such a shock for their respective families. I believe they have a far better understanding of what IBD is, what to expect and also know that I am always here to share advice and give them the support that comes from personal experience. My grandson’s school is gradually accommodating his needs and he is now doing his bit (along with his mother) to raise more awareness around this hidden disability.
Ultimately, we are a big, supportive family who are always there for each other. Whatever the struggles we have had and are still having regarding IBD, we are in it together. It can be difficult a lot of the time, but we are strong and we know that things are not insurmountable and can be overcome with the love and support we have for each other.