Endometriosis surgery resulted in a colostomy

hi, im 19 and about 2 weeks I had laparoscopic surgery to remove extensive endometriosis (described as stage 4). All this has come as quite a shock, from the time between my diagnostic laparascopy and the surgery to excise it the endo had dramatically spread and my bowel was severely stuck. The surgery had seemed to go well and I was happy to finally feel like my life was going to get back on track. A week later however I ended up in hospital and having an emergency operation which has resulted in a temporary colostomy bag. My bowel had been left too thin to cope with food and there was a hole in it also. I don't know what happened but the hospital will not let any of the endo team even get in touch with me. I'm about to start my first year of uni again after missing too much last time due to health reasons and I'm worried the same is going to happen again. However I'm staying positive, things can only get better now right? I don't know how many other young girls there are in this situation or just anyone else but I'm here to talk to if there is.

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  • I'm so sorry to hear you have been through all that, and so young too. I'm 38 with stage 4, with a severely stuck bowel, so I expect I will be going I for an op too soon, although hangin in there as long as possible - I'm terrified of surgery!

    I hope you will be able to reverse your colostomy soon, and begin to get on with life again. You have been so brave x

  • Hello. I'm in a similar situation to you, where i have an ileostomy post bowel surgery for endo. Many people don't realise how bad endo can get, i had to have about 12 inches of my sigmoid colon removed

    How are you doing now? I assume that you are out of hospital? Are you getting on with your colostomy. It took me a while to get used my ileostomy, but now I almost forget that it's there, i'm pretty much back to my old self.

    I would really recommend joining the Colostomy Association UK facebook Group. They are an great group and give amazing support and advice. Overall they are an older group, but there is one younger girl from Australia who i chat to a lot, i would love to introduce you to her. She also has her stoma due to endo. She's really open about the impact the endo has had on her life, but she's also really positive about her future. She's a real inspiration.

    If you do join the Colostomy Association UK facebook Group, look out for me, my name is Sue Hill, i might miss your post if you log on as another name to leahsg

  • Hi Leah, I had the same happen to me when I was about 24 went in had it all removed then suddenly got very ill and a hole had opened between my bowel and vaginal wall. I had a emergency operation and woke up with a colostomy!

    I totally know what your going through,but I was lucky to have mine reversed just 7months later. After a couple more ops.

    It's amazing though how many young people have them,look for any local groups.

    Your welcome to add me on fbook if you want to chat anytimeūüėä.

    It's rah Holden

    Xxxx

  • You poor thing and you sound very brave !

    I've had a total hysterectomy now for Endo but my daughter still has to have Laparoscopies for it, she has just recently had one and I know it is one of her worst fears to have her bowel damaged. I hope you soon get your colostomy reversed.

    Staying positive is really good, my Mum is a positive person and has been through many things including Bowel Cancer and I am certain her positivity has helped get her to the great age of 92 !

    Good luck, thinking of you. xx

  • I'm so sorry to read what happened to you. It's one thing when it's planned, but to have it happen as an emergency is awful. Anyway, you mentioned that the hospital won't let you get in touch with the endo team or they won't let your endo team speak with you. Did they say why?

    If you are unhappy with this you could complain to PALS at the hospital you are at. Also if you want to get in touch with the endo team yourself you can call, email or write to them - if you look their info up on the internet or if you have a past appointment or hospital letter you should find some contact details. Another option would be to discuss this with your GP who might be able to liaise on your behalf.

    I think it's terrible when the medics leave us in the dark, and especially when you've had such a major operation. I wonder why the hospital team doesn't want you liaising with your endo team - it seems fishy (like they don't trust them or are blaming them or something?!).

    Regarding uni - health should come first. Get yourself well enough.... If you don't feel well enough then speak to the uni and see what they say. Perhaps you could defer again or else do part time or something more accommodating (I guess depends how far away you live as to how cost effective that would be). I did uni as a disabled student (other health problems to the endometriosis at the time) and while I loved it, I probably should have done 1 or 2 years of it as a part time student rather than trying to run with the herd and ultimately making myself sicker and feeling dreadful.

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