Thread by @writesJW

Have tears in my eyes writing this. I didn’t realise verdict had come and the man involved had now died. I did not live in his shoes. All of us bowel patients have different stories + experiences. But this is so desperately sad. So really achingly sad 1/ bbc.com/news/uk-englan…

When I had my stoma op in Aug 2014, it came having put it off for years and years. I lived with poor health from #Crohns for far longer than I should or could have. I was scared. I feared coping with it. I was worried what people and potential partners would think. I delayed 2/

I worked & built a strong career despite my health battles. My amazing consultant and I both agreed he’d let me choose when the time was right. But warned also I may have that time chosen for me if I got very sick or my bowel ruptured. So I delayed. Out of fear. Putting it off 3/

I got engaged/married and put it off further. Even though I lived with a major shadow of ill health/pain over me. But it was my norm and what I knew and there’s a weird comforting fact in that safety. You get used to it. It’s your “new normal” to borrow an oft-repeated phrase 4/

My mum also had cancer and I did not want to be laid up recovering from major surgery and unable to care for her. But even when she died in 2012, I still put it off. Unable to face the grief and then the fear/stigma around a #stoma and bag too. Way too much to cope with 5/

Eventually the pain and symptoms got too much. And amid a very complicated personal situation, I chose to have the surgery. It felt I could outrun it no longer. After the surgeon said my colon was on fire with disease and fit to burst. He was amazed I had coped/lasted so long 6/

It’s coming up for six years now. Life has changed for me. An unrelated divorce. A second parental death. But having a stoma gave me back the one thing I’d not had since I was a child, good health to live my life with. It’s not perfect but it has been transformational for me 7/

I know others who have had the same. Living with a stoma is not without its issues but it’s never held me back at all. It’s why I find it so sad the man involved felt he had no choice but to die rather than face having one. It’s so terrible that was the choice he faced/made 8/

So, if you’re facing that choice, or if you know of someone who is, I’m happy to talk through my experience with you. I know countless others who would to. Because when I was facing that decision, they stepped up to share and talk to me - not least @mjseres who recently died 9/

He devoted his recent life to making having a stoma easier to live with. Many others do too. It’s not the end. It can be a beginning. And it’s important we break the stigma around having one. I know many who devote time to that cause. Speak to them. Speak to me. There’s help 10/

I hope the man involved is resting easy now. I wish heartfelt condolences to his family. Many like @Blake_Beckford @GetYourBellyOut @rocking2stomas @DoctorOstomy @ColitisCop @so_bad_ass are great sources if you’re facing this decision. Reach out. A community is here to help /end