I have literally been wanting to do this post for aaaages! But I have really had to lean on 00Steve to do this because although he is incredibly supportive of everything I do to raise Ostomy Awareness, he would rather do it in the background where he can just listen to me whinge! But I thought it might be beneficial to hear what it is like to live with someone who is chronically sick.
00Steve and I have been together for just over 7 years, married nearly 6, have one beautiful daughter and baby Button due next month. We have been in and out of each others lives for 18 years as I went to school with his older brother. But 00Steve would come to the rock nights I went to and worked in a local shop but the town we came from was tiny so it was inevitable that we would cross paths again just so happened to be from mutual friends dragging us out on a night out (above picture!!) We have been through a lot together but I never really knew what it has been like for him, maybe that’s selfish. Did I just expect him to go from having a relatively healthy wife that had had previous surgery for Ulcerative Colitis, to be thrown in the deep end with constant hospital admissions, worrying about me, having to completely look after our little girl at times because I physically couldn’t do it? To be perfectly honest yeah I did because we both take our wedding vows very seriously and for us nothing has been tested like “in sickness and in health”. I felt it was only fair to ask him what it’s been like for him, even though he literally whinged his butt off about having to answer these questions. Now you and I may have a tiny idea what it is like for your him or partner. I say tiny idea purely because every single person/experience is different and it could vary hugely from example to example.
What is the hardest part of living with a chronically sick person? For the most part I didn’t find it hard, but watching them suffer being in pain would be the hardest bit.
What advice would you give someone in your position? Don’t let the stoma define them, as they are still the person they were before.
Did you ever expect your life to change as much; from before to now? I don’t think it has changed other than I have a happier wife now she has the stoma. But other than that we have had a good life and now she isn’t in as much pain which is better.
Would you say it has changed your opinion of your partner? No.
Were you aware that your partner would get really sick again? Of course not, even she wasn’t aware she was going to get really sick again.
Is there something you wish you knew when they first started to get sick to help make life easier for you both? I wish we knew that the stoma would have made life so much better so much quicker rather than trying the medication.
How did it make you feel when your partner started to get sick? I was concerned although from the get go we knew what it was most likely going to be and the two options for the treatment (medication or surgery)
How do you feel about the support they got from medical professionals? James Cook University Hospital team was appalling, we were messed about for 6-9 months. The Friarage Hospital team was excellent and once she had been seen by the team here within 3 months surgery was given and all the relevant tests done.
Do you ever regret staying with your partner? No I don’t regret staying with her. In truth if I was ever close to feeling like that I wouldn’t still be with her.
Have there been any positives from them being chronically sick? Since having surgery it has allowed us to conceive Baby Button.
Do you have an example of when it has been really hard? Just before her surgery because she was at her worst and really suffering.
Do you have an example of when it has been easier? After surgery, as she is suffering a lot less and is so much happier.
Do you think life has been better since surgery not just for you but for Ra-Ra too? Yeah now she isn’t suffering it’s better for me and Ra-Ra because we can do things as a family again.
Does the bag cause any issues? No.
Did you ever worry about your partner having a bag/stoma? No.
Did you ever feel overly worried or scared whilst your partner was chronically sick? No I don’t think I did to be honest.
So there we have it, straight from 00Steve’s mush in truth I don’t feel like I am surprised by any of his answers. Sure he isn’t made of stone and is a man of very few words unless it’s a topic of his choice! But I think he obviously just always honest with me throughout rather than keeping things to himself and doesn’t dwell on things.