Hey everyone - had my second op on 7 July. Had hoped it would be the last but it turns out they only created the pouch during that op (first op was 15 Feb in emergency following toxic megacolon after 2 years of UC - and left me with a sigmoidostomy a ileostomy ).
In June they removed the sigmoidoscopy and the rest of my colon and now I have the ileostomy while they are waiting for the Jpouch to heal up. I am waiting for the reversal around end September. I have been very poorly in the last week - feeling extremely faint and tingling with a tight band round my chest under my arms. Blood test yesterday showed v low potassium and I was told off for not taking immodium to reduce the output of the ileostomy (I completely forgot to take the immodium!). Luckily I had been drinking gallons of vichy water so was not (quite) dangerously dehydrated - especially as it is in the mid nineties here in Belgium and has been for week.
In the last op, the surgeon removed even my rectum as it was still so diseased. He kept the anus and the muscle around it and expects me to be fully continent after the next op. I am losing a milky like fluid from my anus. I am fine during the day when I have a pee or empty my bag but at night I can't control it and have to sleep on a towel. I am scared that I will be incontinent afterwards and have to go back to the ileostomy for life. Any words of encouragement? I do my exercises - sit and squeeze my bum muscles whenever I remember!