I've seen some really amazing responses in these threads and am both very happy and reassured to know there are so many people willing to offer their support and advice; this website is a valuable resource!
I'm hoping to find some further information on ileo-anal, or j-pouch, surgery (for an ileostomy reversal - as if you guys didn't know I had an emergency total colectomy in May this year (family fun for the UK bank holiday!) which was an awful, painful nightmare of an experience - as many of you will know/can imagine. I'm coping well, with only 2 'leaks' which were mostly due to me eating too much chocolate and other lovely food too late at night. Anyway, to spare you the gory details, I'm fine now & haven't pooed on myself in a meeting or anything like that, so all is well!
I've been informed by my surgeon that on analysis of my large bowel by the pathologist, I have 'indeterminate colitis', which importantly means that they can't be sure that I don't have crohns and therefore am at higher risk of the reversal surgery 'failing'. (to be honest I think the reason for this prognosis was because I was so poorly, the bowel was literally completely wasted away)
I believe 'Failure' of this type of reversal surgery is deemed as one or more of the following:
- holes/leaks in the 'joins' - causing abscesses
- pouchitis - sounding fun
- crohns appearing elsewhere - we all know the risks there
- having to go to the bathroom, let's say 6-8 times a day i.e. no better than before surgery
I personally wouldn't mind the latter point too much, as this is pretty much how many times I empty by bag anyway. It's actually become pretty interesting for me.. maybe that means it's time to go!
Do you know of any other risks/complications associated with this surgery?
I was told by a female consultant at my IBD outpatients clinic to be aware of the risks to fertility, quoting a 3 fold reduction in your chances - now I'm not sure whether this means conceiving, or of giving birth, any thoughts? I know it would need to be a C-section and that my gastro surgeon would need to be there to sew anything back together.
Are there any ladies or husbands/boyfriends/mums/dads who have been through this or who are going through something similar?
I know that the risk is to do with 'pushing' on the formed 'pouch' which will obviously be at risk with all that soft small-bowel stitched-up surgeon delicate handiwork!
I looked into freezing my eggs, but apparently fresh eggs are much more likely to conceive.
I want to get rid of this bag, but I'd be very upset if I seriously risk my only chance of having children. I never thought in a million years I would have to have my large intestine removed in an emergency fashion, and need to make these kinds of decisions - it has thrown me a little bit and I'm greatly in need of some ostomate-love!
Does anyone have any thoughts they'd like to share? I'd be enormously grateful to hear any advice/experiences.
Thanks very much &