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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

 

35 replies
  1. motherscuffer
    motherscuffer says:

    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

    Reply
  2. motherscuffer
    motherscuffer says:

    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

    Reply
  3. Lynn Lyons
    Lynn Lyons says:

    Thanks for the explanation, it does get a bit confusing. Plenty of time for you to make those decisions once you are back to health.

    Reply
  4. Lynn Lyons
    Lynn Lyons says:

    Thanks for the explanation, it does get a bit confusing. Plenty of time for you to make those decisions once you are back to health.

    Reply
  5. Anita
    Anita says:

    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

    Reply
  6. Anita
    Anita says:

    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

    Reply
  7. John
    John says:

    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

    Reply
    • sam
      sam says:

      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

      Reply
  8. John
    John says:

    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

    Reply
    • sam
      sam says:

      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

      Reply
      • Gareth willuams
        Gareth willuams says:

        Hi Sam, I’ve had the same operation as you from colitis. I’m in the same boat as you where wheather to have the reversal or not.what is life like with the pouch? Thanks…

        Reply
        • sam
          sam says:

          Hi Gareth, I had the jpouch surgery done a few years ago but unfortunately it didn’t work for me, I had chronic pouchitis and ended up having it removed and now I have a permanent ileostomy.

          Reply
  9. wendy Moore
    wendy Moore says:

    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

    Reply
  10. wendy Moore
    wendy Moore says:

    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

    Reply
  11. Kelly Kira
    Kelly Kira says:

    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

    Reply
    • sam
      sam says:

      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

      Reply
  12. Kelly Kira
    Kelly Kira says:

    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

    Reply
    • sam
      sam says:

      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

      Reply
  13. Bruce Kirkman
    Bruce Kirkman says:

    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?

    Reply
  14. Bruce Kirkman
    Bruce Kirkman says:

    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?

    Reply
  15. emmataylor920
    emmataylor920 says:

    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

    Reply
  16. emmataylor920
    emmataylor920 says:

    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

    Reply
  17. Greta
    Greta says:

    Hi Sam, wondering how your reversal went. Three years ago I had simple Rectal prolapse surgery. I had already had subtotal collectomy in 2008 after a lifetime of sever constipation my colon enlarged 4 times normal z it was removed emergently. My small intestine was connected to rectum. Problems persisted and was referred to a colal Rectal surgeon in San Francisco who removed the prolapse and I was healed for 24 hr. I was unable to per so I went in for them to drain bladder by time I got there I was hallucinating and taken strait to operating room. I’d gottem an infection in bladder and an abcess in rectum that caused rectovagunal wal to dissolve. Doctors inserted tubes and stitched tissue to them. I spent 57 dats in hospital not allowed to eat I lived off of Fluids. I was released but within a week I went to poop and it came out my vagina I was infected again and taken to surgery I woke up with a loop illeostomy. After 8 months the stoma recessed an was flush almost concave. I was told it’d need revision. But afterband MRI it was determined the fistula holes in recto vaginal wall had closed so they reversed me in three months more stool outbwrong place anotherbilleost. I was also TPN with I’ve in heart to give nutrition. I didn’t eat but vomited liquid and stomach fluids constantly also under went 12 procedures to close fistula. This stoma prolapsed and my intestine fell into bag. ER of course they went back in. So after 4 more attempts to close the fistula that bag was reversed . Luckily because due to the recessed stoma I had raw skin to try and stick bag too. Excruciating. So I was told a fistula had never been cause to live with an illeostomy and I’d had two fail. Which means bags just came iff 2-3 times almost every day. Doctor said we can’t expect you to live with illeostomy if your stomas keep failing as you can only have so many revisions. I had to have a third illeostomy because there was one procedure being done involving pulling your immentum between vagina and rectum forming a damn. That’s been done. I was told 2-3 months after I’d be reversed and get my life back well this stoma was an end one think it’d stay functional. Six months ago it started inverting going inside me causing stool to pull up under bag eating skin and increasing bag changes. Now doctors say I only have enough bowel to rebuild stoma once or attempt reversal with chances I’ll start to see stool in wring place which you can’t live with. There’s no sphincter in your vagina sonif just pours out having no colon. Now do I have the revision and wait until it fails like past three or attempt reversal and pray the damn they built holds as if not sepsis is definite and with not enough bowel to put bar back And even so that would probably only last as long as other thre have. So convenience appearance none of that matters. Do I go for the chance the rare procedure holds but for how long or have stoma rebuilt and hope it doesnt fail which would render me home bound and prone to infection and excoriation. I have a son. I want the one that gives him even a short period of time with me more normal that he had to seen me last 3 years. Any idea what you’d think if Facing this ? You seem levelheaded. If love to hear how you are doin with reversal. Thanks and best wishes…Greta

    Reply

Trackbacks & Pingbacks

  1. […] learnt about together through the years.  Last year I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new […]

  2. […] learnt about together through the years.  Last year I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new […]

  3. […] you believe it? It has been six months since I had my colon removed, on 3rd September 2013 I had a sub total colectomy.  Six months of having my ileostomy bag, six months of no going to the toilet for a poo, six […]

  4. […] you believe it? It has been six months since I had my colon removed, on 3rd September 2013 I had a sub total colectomy.  Six months of having my ileostomy bag, six months of no going to the toilet for a poo, six […]

  5. […] I had my first surgery on 3rd September and that was a subtotal colectomy with ileostomy. […]

  6. […] I had my first surgery on 3rd September and that was a subtotal colectomy with ileostomy. […]

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