end ileostomy ulcerative colitis

My Surgery – Subtotal Colectomy and End Ileostomy

After chatting with my mum, I realised that as I natter away about my surgery, that it can be quite confusing as to what I have had done, so with the help of google I thought I would do a little post about the surgery.

I had a subtotal colectomy and end ileostomy.  This is an operation to remove the colon, leaving the rectum behind. It is most usually performed for patients with inflammatory bowel diseases.  The surgeons removed my colon (also known as large intestine or large bowel) and then formed an ileostomy which is an operation to create a stoma or an opening in the ileum (last part of the small intestine), which is stitched to the skin.

Before

subtotal colectomy ulcerative colitis

 

After

 

end ileostomy ulcerative colitis

 

 

So I have no colon.  My food goes from my small intestine out through a hole in my stomach (my stoma) and I wear an ileostomy bag attached to my skin at all times which collects all the poop.  I still have a bum but it isn’t attached to anything!! Which means I no longer fart or poo from my butt…

In the next 6-12 months I have a decision to make.  That decision is whether I have a further surgery that will remove the rest of my rectum and means I will have the ileostomy and wear a bag for the rest of my life.

Or whether I have an internal pouch made out of my small intestine which over the course of two operations would be reattached to my anus.  This would mean I no longer have the bag and that I would poo from my butt again.

I am currently not going to make that decision.  My goal right now is to recover from this surgery, get off all medications and get myself strong, fit and healthy.

Some people decide that the stoma and bag are just so convenient and easy for them to live with that they would rather not have more surgery and deal with all the consequences of reattaching the bowel.  For others it is entirely the right thing to do.

For me? Im not too sure right now.  I can’t even begin to think about these things and so Im not going to stress about it.  Ill make that decision in the coming months with the support of my doctors, nurses and family.

So I hope this helps a little to explain what I have had done!  For more information take a look at the NHS website or feel free to ask my any questions and Ill do my best to answer them!

 

Love Sam xx

 

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16 thoughts on “My Surgery – Subtotal Colectomy and End Ileostomy

  1. I know you explained your surgery to me when I visited you in hospital but it’s interesting to see it written down with diagrams too (ever the scientist me!). It was incredibly brave to have the surgery done and I think you are right to give yourself time to get fit and well before making a decision about what to do next. Cx

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  2. Thanks Sam, tho i have been googlin myself ( a habit of mine when i want to understand something) but you are still amazing and brave and i can see you in the future helping others thru their tough times. I hope your recovery i short and your life is long, healthy and happy. you, Timm and the kids deserve it. xxx

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  5. Hi sam my name is john and I had the same operation as you did I had mine in October 2013 after being really ill with ulcerative colitis over 2 years , it’s been tough but now I feel really good after having the operation and back to Being healthy , and taking no more tablets which is a good thing and I enjoyed keeping fit and working hard. I want to ask you what you are going to do have you decided to have it reversed or will you leave it , because this is racking my brain I don’t no what to do my self, my Docter has given me more time to decide , it’s going into hosptial again and I’ve heard things that it not the same as before you know so I just don’t know what to do for the best,
    Thank you john

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    • Hi John

      I am having it reversed! I’m going in for pouch surgery next Wednesday.

      Talk to doctors, stoma nurse and read up everything you can. It’s such a personal decision but so important that you make an informed choice and feel happy with your decision.

      Some people decide that their bag is so convenient that they’d prefer to keep it permanently and other want to try the pouch.

      Best of luck to you, I’ll be updating the blog over the next few months with how my pouch is suiting me so keep reading!

      Sam x

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  7. Hi Sam i had colon removed 1st July 2014 which resulted in an ileostomy. I know its early days but i too cannot decide on reversal surgery. However the thought of having a stoma for the rest of my life fills me with dread.
    I hope your surgery goes well and I look forward to seeing your updates

    Kindest regards
    Wendy

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  8. Hi Sam – I had my stoma formed in May 1999 and it has been a part of my life so long now I forget about it nearly.

    I opted not to have the J pouch but I still at present have my rectal stump in place but I am currently having big problems with an major flareup. I am currently in the stage of considering having the stump removed but really not looking forward to the joys of not being able to sit for a few weeks but a few weeks seems a good sacrifice for life long pain if I don’t get it removed

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    • Hey Kelly, I was told that rectal stump removal was for the best due to the increased risk of cancer. Also for you dealing with rectal flare up must be rubbish when having a stoma too! Best of luck in your decision making, hope everything goes well for you x

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  9. Hello Sam & Hello Kelly.
    I’m in exactly the same position as Kelly, having had my stoma formed in 2001. Currently things are a bit sore again but, because I had a rough time with MRSA after my main operation, what should have been a couple of weeks in hospital ended up as six, with the next six months spent sitting in an armchair, I’m scared of repeating that situation.
    I no longer have the annual endoscopy to check my rectal stump, but I’m told you can now have it removed with keyhole surgery nowadays. Has anyone been through this operation and, if so, how was it for you?

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  10. Hey Sam!

    I just had the same surgery 6 weeks ago! How’d your reversal surgery go? Would love to hear more.. I have an appt booked in for the 10th of September to discuss my plan which will be about reversal etc.

    Emz x

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