Mother of a son with UC

[JSDevon]

My son is 48 and has had UC for over 20 years, he lives in USA. His latest flare has been severe for an unremitting 2 years, his treatment has been steroids, Humira and Methotrexate but his symptoms persist severely restricting his life whilst having painful and debilitating side-effects. He is a self-employed massage therapist who is very health and body conscious, he attends the gym frequently and gets depressed when his condition stops him going. He hangs desperately onto the fact that before this episode he had a symptom-free 5 years and is determined he will get there again. Meanwhile we watch from a distance as he looks older and older and as his life-style gets more restricted, although he remains optimistic and tries to approach his situation cheerfully, as his close family we wonder whether his life would be better if he had a colostomy. He will not contemplate a colonostomy, he is full of negative thoughts that his social and working life would be over if he had one. What I am asking is if there is anyone willing to to offer their experiences so that we all  be better informed

[Nimmo]

Hello, you must be so worried, it's horrible being so far away from the people we love when they are ill. I think that a lot of your sons treatment is probably governed by the fact he's in the states where they try and avoid ostomies at all costs because they know people prefer to keep their bums, and their health economy means that patients are boss. I had an ileostomy made when I was 23. At the time I was seven stone heavier than my usual weight because of steroids, as well as the other cytotoxic kind of drugs he's on. The side effects of those are probably making him feel like hell as well. Before my illness and surgery I was relatively healthy but not sporty. Since having my ileostomy formed I have done triathlons and run ultra marathons. I exercise nearly every day and there is nothing I can't wear apart from low slung trousers and bikinis that aren't high waisted. I can't imagine that he is anything other than worn out and worn down after such a long illness. Remission is lovely, but sometimes gets harder and harder to achieve as time goes on. If you've got other questions or think he'd find it helpful to chat about it with people who've been there and know what he's struggling with then just say. I would say that for most people who have had a long battle with crohns or UC surgery is a huge relief. There are obviously adjustments to make but he won't be ill in the way he's got used to being in bad patches. It's like fixing the plumbing by removing the faulty pipe, not rearranging the broken ones. It's simply not possible for him to have UC ever again if he has his colon and rectal stump removed. In the US they will probably try and persuade him to have a pouch made but my experience, though obviously only anecdotal, has been that people with recurring UC that's hard to control with drugs find their rectal stumps get so diseased that they don't get the whole benefit of being completely free of UC. I wish him, and you, all the very best.

[JSDevon in reply to Nimmo]

I couldn't have wished for a more thoughtful and helpful response, thank you so much for taking the time to reply. You have addressed all of my concerns, showing a clear understanding of the issues. He has been ill for so long, and has coped so well that he has got used to living like this, but to us watching him it's not living but surviving, it's like watching someone stuck in an abusive situation. But, and it's a huge but, he is an adult with his own decisions to make and I am there to support him whatever he decides to do, at the moment he chooses to carry on. Realistically there  may well come a time when an emergency ileostomy is necessary and I want him to be able to envisage that as a positive step rather than the horror he pictures at the moment, at which time I will put him in touch with you as you have so generously offered.

Meanwhile, your response has gladdened my heart, I am so happy for you that your experience has been so positive for you, you sound such a good role model for anyone in his dilemma. It is wonderful to read your description of your active and sporting life, I wish you all the best and thank you from the bottom of my heart for taking the time to so fully address all our concerns.