I have been with my partner for 6 years now. He was diagnosed with Colitis in his teenage years, long before I met him. At the time of diagnosis he was seriously ill and had to have major surgery for an ileo-anal pouch. Many years on he has very recently been re diagnosed with Crohn's after becoming seriously ill with a fistula this year. He was operated on to treat the fistula and given an loop ileostomy to give his puch a rest and help recover from the infection caused by the fistula. Since his recent surgery, there has been talk of him starting on several drugs such as Methatrexy (no idea if that's how you spell it??) but due to the added complication of his fistula /infection they are holding off for now. Next year it is possible his loop ileostomy will be reversed or be made permanent, which would also mean that he would have a pouch excision. In the meantime he has been having bad bouts of Crohn's; generally feeling unwell, aching joints, pain from his fistula, severe mouth ulcers, fatigue etc etc. Inevitably, the constant barrage of illness is getting him very down and his moods can be very low, often feeling agitated and annoyed. I often bear the brunt of this, and I try very hard to remain understanding and patient, but I have to admit it's not easy. I feel guilty as I know that what he's going through must be horrible and incredibly frustrating when all you want to do is get on with your life. I feel terrible for him and so helpless - watching someone you love more than anyone in the world go through so much suffering is hard - I just want to do something to make it all better for him. I do anything I can think of that might try and help, and of course offer love, affection, understanding and moral support. My friends and family are aware of his illness and they always ask after him but it's hard to even begin to explain what he goes through on a regular basis so often don't even attempt to. I don't really have anyone to talk to about it.
I was wondering what other partners/families/friends experiences are? In particular how do you cope with the low moods/short tempers? I'm hoping that next year will offer him some reprieve and his health will improve once a plan of action has been decided by the doctors. Of course I know that this is something that will never go away completely but I'm wondering how others cope with the really diffcult periods of the illness - what ways do you offer support/help?
I was wondering what other partners/families/friends experiences are? In particular how do you cope with the low moods/short tempers? I'm hoping that next year will offer him some reprieve and his health will improve once a plan of action has been decided by the doctors. Of course I know that this is something that will never go away completely but I'm wondering how others cope with the really diffcult periods of the illness - what ways do you offer support/help?