Hi everyone
I am a newbie to the forum and I'm so glad I have found it as I don't know anyone else with a pouch and I have felt quite alone with this for the past 19 years.
A bit about me: I had my colectomy, followed by J pouch creation, then reversal of ileostomy, beginning in 1997. I developed an abscess at the anal anastomosis almost immediately, however my team would not listen to me and the result was septicaemia, an excision through my buttock, an unplanned second ileostomy to allow healing, and another reversal.
I was pretty well for many years until I began to have problems with adhesions & strictures, resulting in episodes of total obstruction, faecal vomiting and trips to A&E (ER - I'm in UK). I've had several surgeries to remove adhesions. I'm currently waiting for another dilatation, however I have already waited 18 months to see my surgeon on the national health service so I am having to go private, which will cost me £2500.
To my curious (and embarrassing) question! Every since I've had my pouch, I have been unable to pass gas in an upright position. The only way my pouch will allow me to pass gas is if I am lying face down with my forearm beneath me to create some pressure, and a lot of wriggling. No-one seems to know why this is or how to correct it....it is just positional with my pouch. As you can imagine, this makes travelling, working in an office and being in other people's houses quite difficult, and I am often in pain because my environment is not conducive to my 'antics' and I have a lot of painful cramping due to trapped gas. Also, when I finally do get a chance to do my thing, it is quite explosive as it has sometimes built up over the whole day. It also makes my belly ridiculously noisy.
This has really affected my confidence. My initial reaction to any invitation to go somewhere is 'what is the bathroom like and how will I cope in that situation'. I am 47 and was widowed 6 years ago....I'm really struggling with a brand new relationship because I am embarrassed and ashamed. I cannot share this gas problem as I do not want my partner to have a visual in his mind of me doing this. I need a lot of privacy. I cannot even visit his home because he has a minuscule WC, which is separate from the bathroom, whereas I need space to move around and stretch and lie on a towel on the floor in between sitting on the loo. He does know all about my surgery and all the other various associated bathroom/dietary problems. However, what should be a wonderful invitation to spend a romantic weekend in New York, for me is a terrifying panic of 'how on earth can I share a hotel room with this man'. I'm a ball of fear of being trapped in an embarrassing situation.
Does anyone else have this particular positional problem with gas?