Bowel & Endo problems

So just had my lap op & that took 8 months. Now it's so severe/deep surgeon has to refer me to specialist . The words stoma bag / bowel resection were mentioned. Have to have another MRI of my stomach! They put in the mirena coil but it seems to have already spread to my right ovary as well. Hysterectomy is also likely. Just worried about another long wait!! Do Endo sufferers often have colostomy bags for life. That is my worst fear.

6 Replies

oldestnewest
  • Hello brooke2003,

    I have stage 4 endometriosis, but I've been put on prostrap injection, but ive started bleeding and weeing out blood.I'm in the same boat as you, I've been told it could be a hysterectomy and bowel removal. That's the scary bit not knowing what there going to do. I'm sure they only mention all this to make us scared. And bumble our blood pressure up. Sorry I can't be more helpful. :) x

  • You will be referred to see a bowel surgeon as well as a specialist gynaecologist. The bowel surgeon will let you know the likelihood of bowel resection and stoma bag. If you need a bag normally it is for a few months only . I was given those information at my consultation with the bowel specialist. I had my endometriosis removed without the need for one.

    Hope it all works out for you.

  • I've got stage 4 severe endo which has resulted in me having to have a temporary colostomy bag. This time last year i was in the hospital recovering from the operation, i still have the bag now which you do get used to. I've been told early next year for the reversal of the stoma plus resection of the bowel so i think it's rare to have it for life.

  • Hi Brooke

    I'm having an abdominal hysterectomy next week, and have been told there's a possibility I'll need a temporary colostomy. My right ovary and uterus are stuck to my bowel - everything's basically stuck together in a lump - unfortunately, my endo went undiagnosed for years and it's taken a bad toll. My right ovary is a complete write-off - my consultant has promised to save as much as she can - but it's possible I'll lose both my ovaries and uterus.

    I was given a % risk of colostomy, which because of the bowel adhesions, was 1 in 80 rather than 1 in 800. I was assured this would be reversible, but the idea of it really frightens me (I'm really sorry if this is upsets anyone reading this who may already have one ) but I'm hoping I will be able to go back to work fairly quickly, and I just can't imagine being at work with a colostomy bag.

    My consultant stressed it was a worst case scenario and would be reversible. I have to do a bowel prep the day before my hysterectomy and have been given a list of foods to avoid on the penultimate day, so will be sticking to this religiously - that's really all I can do.

    I'm sorry I can only offer shared fear rather than reassurance, but I do have faith that if it happens, it will be reversible.

    Best wishes

    H.

  • Are you being referred to a BSGE endo centre as that is what the NHS requires and is one referral to a multidisciplinary team that includes a colorectal surgeon already.

  • I don't know sweetie but am going to see the bowel surgeon tomorrow for similar discussions :(

You may also like...