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Fertility after Reversal surgery advice needed!

Welcome to MeetAnOstoMate
17,031 Members
Posted: Fri Sep 23, 2011 6:38 pm
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 Wink 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?

Fertility Question:

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 &

Bon weekend!

  Past Member
Posted: Sat Sep 24, 2011 1:03 pm
Have you thought about having children before considering a reversal.  Having a reversal was never a consideration for me but from what I have read, you don't need to make a decision now. You have time to have children first if you choose.

It seems to me every new surgery presents new complications and issues.  Reversal 'failure' is a huge topic.  Examine that topic carefully.  Failure seems to me to often result in an irreversable iliostomy which sees to me to be more difficult to manage than a primary iliostomy.  If you doctor is concerned, it might be important to think more deeply and carefully.

From everything you said - it all seems to be happening very quickly.  You are still new to this lifestyle.  You DO have time on your side.  Think things through carefully before making any decisions.  

Gathering information as you are doing is a wise way to proceed.  Consider reading post from the past.  This site is full of information.  Go to search.... and try different discussions over the years.  There is so very much good information available - sometimes you have to search a bit more deeply.  People with information may not be online much or checking in currently.

And, stay in touch - people here care. Carol 'dawneagle'
  Past Member
Posted: Mon Sep 26, 2011 2:59 pm

I am at the same stage as you it would seem.  I am due to have J-Pouch early next year now (had total colectomy due to UC in Aug 2010) and currently undergoing fertility tests to determine if my ovaries are working as they should.

I paid to see a specialist privately for some protected time to really discuss it fully, and my god it's complicated.  Anyway the next stage for me is a HSG X-Ray and this will determine if my ovaries are blocked or not.  If they are blocked whilst I am having my J-Pouch constructed he will also go in and unblock me as it were and then may also do a egg collection if possible.  This will also determine if I am eligible for an NHS funded IVF cycle.  I am not looking to have kids yet but my fiance and I would like to do as much as we can to ensure we have the best chance, so you are doing all the right things.

Next after the HSG I will have an ultrasound to see where my ovaries are and how easy it is to do egg retrieval trans-vaginally.   I think there are other steps to go but all depends on outcome of HSG.  I was due to have my j-pouch in November but this postponed due to the tests, which I think is worth it and I only have to wait til the early new year which I can cope with.

Please ask anything in case I've missed anything and let me know how it all works out for you.

Lauren x
  Past Member
Posted: Sat Oct 22, 2011 3:51 pm
Hello There,  I have been told, too many years too late, that all females should be - or should have been in my case - offered IVF on the NHS. This is due to the pouch operation directly. My consultant says that although there seems to be no physical reason, the pouch operation causes infeltility. being a woman I can only comment on this, unsure if the pouch operation causes male fertility problems. I cant mail you, coz I'm not a full member, but you could maybe mail me. I suggest you do much more research if you want a family. TC
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