Hello ladies and gents,
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
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). 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 or 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 and 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 Crohn's 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:
I personally wouldn't mind the latter point too much, as this is pretty much how many times I empty my 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?
Fertility Question:
I was told by a female consultant at my IBD outpatients clinic to be aware of the risks to fertility, quoting a threefold 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 &
Bon weekend!
Xx
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
🔒 Login to see image
). 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 or 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 and 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 Crohn's 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
- Crohn's 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 my 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?
Fertility Question:
I was told by a female consultant at my IBD outpatients clinic to be aware of the risks to fertility, quoting a threefold 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 &
Bon weekend!
Xx