Post surgery experience - colostomy. - Endometriosis UK

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Post surgery experience - colostomy.

Eve7 profile image

Hi everyone, I'm new on here but lived with endometriosis for over 10 years pain controlled with medication. I am facing a decision about surgery to aid my pain and chances of conceiving but have been warned that I may need a temporary colostomy. Has anyone else been through this and could give me any advice on their experience please? I'm looking from a physical and psychological perspective. Has anyone conceived post surgery? Or not .... And how did you cope with this? I am 37 years old and have not intentionally left having children until later in life....just not found the right partner.

Thank you for any advice you may have. Xx

8 Replies

Hi, is this your first surgery? I am guessing you have had a laproscopy if diagnoised. I don't know about colostomy bag but I assume this is a listed risk as it is in your bowel area? It is good you are considering this 'informed consent'.

There is some good information I have found very helpful here on user 'Lindle's' area about deep infiltrating endo and why some types of excision are better than others/ bowel endo. Also -I am not in UK so it does not make sense to me but fom reading this forum for info I know there is also alot of good information on pathways to the specialist BSGE centres if you are in UK ?

I would be interested in replies from anyone with bowel involvment that have had surgery too. It is something I have decided against for now.My experience with excision of D. I.E. from utero sacral ligaments was reduction in pain for a few years after I had it. These were happy times for a while for me but did not last. I know there are lots of ladies on here with fertility stories too. Hope that has helped. Good luck let us know how it goes.

Eve7 profile image
Eve7 in reply to Hope264

Thank You for taking the time to reply Hope264. .. I am trying to do further research before I make my mind up regarding such intricate and complex surgery. :)

Hi. Hope you are well today. I had a temporary ileostomy then colostomy after emergency surgery about ten years ago. I didn't have time to think about it before hand, so but different to you, but can honestly say for me it was a life saver and best thing I ever did for my symptoms. It was s shock to wake up to find a bit of my insides sticking out and a bag! But you can prepare yourself in advance. Personally, as long as you've got s good sense of humour I'm sure you will be fine. It takes some getting to use practically, and be prepared for done frustrations and mishaps while you get use to putting bags on and off. But honestly I got so use to mi e I considered keeping it when it was time to plumb me back together again. It made my life so much better in terms of my painful bowel symptoms. And mentally I had got use to it. But I did get it reversed after about 6-7 months. Iv got cracking scars but I'm proud of it. It saved my life. I have other problems now with my Endo, unfortunately. But for my bowels it was the best option. Just keep reading up and get lots of info. My stoma nurse was awesome and I always remember telling me to remember about 1in 10 people sitting on the train with me would have a bag too but I'd never guess! (Figure might have been higher actually I can't remember now!). Good luck and take care x

Eve7 profile image
Eve7 in reply to

Thank You for taking the time to reply Liverbird75. You have been through alot and I hope you are currently feeling well in yourself. I am doing lots of reading but there is nothing like speaking with others like yourself who have first hand experience of this surgery and treatment....its invaluable and I'm grateful. I have some deep thoughts before this surgery as it would be more for helping with conception and the impact of whether it would aid this (or not!) And how I deal with things. Hearing first hand experience from you is the best thing I've come across so far so thank you for sharing with me. Hope you continue to stay well. Hugs x

You need to find out from your consultant if all of your endo is likely to be removed with the proposed surgery. That's the best thing for improving your fertility and overall improvement, as far as I'm aware. Unfortunately, my endo has remained very aggressive and spread, despite the successful bowel surgery. It improved my pain and symptoms, so I'm absolutely glad I had it done, but despite several attempts at IVF we have not be lucky enough to have children. No definitive reason for this but possibly because the endo had blocked my Fallopian tubes and effected my ovaries. One thing you might want to try is acupuncture? I found it good for pain but it was also recomended by our fertility clinic for helping your body be as healthy and effective as possible. I have just undergone a hysterectomy in the hope of further improvement of my symptoms, as we have drawn a line under trying for a family now, but there are no complete guarantees fortunately with this condition. You just have to do as much research as you can, listen the medical advice, and weigh up the options as best as you can. It's not easy, but I always believe if you follow your gut feeling and trust your instincts you can't go too wrong. Take care x

Eve7 profile image
Eve7 in reply to

Hi Liverbird75 ... again I thank you for taking the time to respond. I completely agree regarding information gathering and trusting your gut...its the best we can do in the circumstances as endo is still such a mystery! I've been told my endo is severe and that one of my fallopian tubes are blocked so I know naturally or with IVF it will potentially be an uphill struggle. I have also thought about what I can do if I am not successful at getting pregnant. Got some heavy weight on the shoulders at the moment, but I'm strong and I know other women have faced the same/similar.

I'm pleased to hear you have good symptom control from the surgery but I'm sad to hear of your difficult IVF journey. Sending a hug your way as a little moral support. Thank you again for sharing your experiences and helping me on my journey. Take good care xx

chezza1 profile image
chezza1 in reply to Eve7

Hi. I replied to another post about stomas. Here's the link to the discussion - I hope you find it useful:

Eve7 profile image
Eve7 in reply to chezza1

Hi Chezza1. Thank you for the link it is so good to read other people's experiences.....probably the most valuable information around for this current situation. Hope you are keeping well at the moment :) x

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