Loop or end ileostomy??

Ok, so the good news is that i have finally been booked for my ileostomy for 18th August but it's almost 2000km away from home and i'll be away from my kids and hubby for between 2 1/2 to 4 weeks :-(. (Recap: I had total colectomy 7 years ago for colonic inertia and have been battling ever since with regular flare ups of distention and cramping, only eat fluids / soft baby foods and require bowel washouts 2 x per day as cannot evacuate on my own due to decreased rectal nerve sensitivity)

I have just been discharged from hosp after another flare up with severe distention, abdominal pain, vomiting etc and it's day 3 post discharge and i still look 6 months pregnant and cramp terribly on clear, clear fluids!!! Time to call the dr again!!

Anyway my doc was away on the day of discharge and another surgeon saw me (he has also previously treated me on numerous occasions and is aware of my situation). He said he could perform the ileostomy here which would mean i would be in a hosp 500m down the road from my house and could see my kids daily!!! Only problem is, he thinks i should go straight for the end ileostomy as it's not worth having 2 major surgeries within such a short time if i were to first have loop and then have reversal few months later! He says rectum isn't working in any event!

The only light at the end of the tunnel and the only thing that was kind of convincing me to go ahead with the ileostomy (vs staying the way i am for the rest of my life) was that i could always have it reversed if i couldn't cope with the bag or if it didn't solve my regular flare ups! If i opt for permanent ileostomy from the beginning, there is no back door out!!!

Any ideas or suggestions from anyone out there??

Lolly
xx

Well basically my rectum doesn't function at all, so they feel that an ileostomy would be the only solution. They feel i am not a candidate for a j or k pouch and suggested a temporary ileostomy to see if it alleviates my problems (not being able to eat normally nor to evacuate on my own, and to alleviate the flare ups which occur 2 - 4 times a year with recurrent hospitalizations). If the ileostomy works, they would then opt for a permanent ileostomy. If it doesn't work, they would reverse it and i would just go back to my current way of life (poor quality of life). The end result is to basically have an improved quality of life.

Hi LL

There is no reason why you can't have an 'end' ileo reversed. A loop is usually done when the plan is to reverse it. It's EASIER to reverse than an end as the bowel is 'looped' through the abdominal wall rather than severed as in an 'end', but an 'end' can still be re-connected.

A loop is normally meant as a temporary measure while the bowel heals elsewhere. It can be harder to pouch and you can still get stool slip past. Not that that is essentially a big issue. As Karen says, an end is more 'spouty' and easier to manage... less leaks and you generally get a better pouch fit. I've had both types and the end is definitely easier to pouch.

I have an end ileo now, but still have most of my colon and rectum which is just sitting there inside and is simply diverted. I also had colonic inertia/dysmotility last year (after having perforated colon and peritonitis which seemingly damaged the bowel) and virtually begged my surgeon to put my bag back. I was in a different situation having already had an ileo and knowing what I was dealing with and I knew that I felt better with it.

There is NO REASON why they can't reverse an 'end' ileo, so long as they leave your rectum. As you've already had a colectomy, they'll just form an 'end' ileo and leave your rectum in place.

A true 'permanent' ileo is where they remove all the colon, rectum and sew the anus closed.. an operation called a proctocolectomy and is a big operation. Much bigger than simply forming an ileo and diverting the colon/rectum.

With an 'end' ileo you'd still be able to have a reversal, so long as they leave your rectum. So that would still be an option for you if you find you're no better - although I suspect you will be!

As you have had colonic inertia/dysmotilty, they don't need to remove your rectum even if it's not working. The main reason for doing that is in colitis patients who may have colitis in the rectal stump which would continue to cause issues even after the ileo. You can probably leave yours there. You'll just need to have a regular scope every couple of years and you may get some mucous but that's totally normal.

I'm in the same position and a reversal may still be an option for me too. Although for the most part I'm much better with the ileo than I was before, so for now I'm leaving things well alone.

Given your situation and the closeness of the hospital, I'd go for the end and stay close to my family. The end ileo sugery is relatively simple from a surgeons point of view and you really don't need to travel 2000km. Just make sure the surgeon gives you a nice spouty stoma and get him to 'site' it so you have a choice about where it will be. I was in hospital for 3 days and home with my family. I was climbing up a mountain in the summer holidays only 7 weeks later.

Have you had any small bowel motility tests? presumably they've checked for strictures and other issues in the small bowel?

It sounds like your rectum is the main issue though, so hopefully you'll be much better off.

Let us know what you decide and fire away with any other questions.. S

Oh and just spoke to surgeon, he said if no better by the morning, he'll have to re-admit me for rectal tube and IV antibiotics in the event i may have small bowel bacterial overgrowth at present causing the excessive bowel sounds, distention and cramps :-(

Sarah, I had my small bowel motility checked in march and all was fine, just delayed transit through the anastamosis.

Karen, how are you doing post op? thinking of you!!
xxx

thanks lolly. i had mine open sarah had hers laparascopically. it all depends on what your surgeon likes to do they all have their own choices for whatever reasons. my discharge summary details i had "Elective laparotomy + adhesiolysis + split ileostomy". no idea they were gonna remove any adhesions and i never had any symtoms of adhesions that i noticed. you have at least done a lot of research. i am unsure about why some leave the rectum and others dont like to. it has never been mentioned to me but i dont have an end ileo so may be that is why.

Hi Sarah and Karen, thanks for the info!
I tend to agree though, think removing the rectum is a bit hectic at this stage, or at any stage unless it's proven to be necessary. The doc here wants to do surgery laparoscopically. He said if it were too difficult due to adhesions then he'd open up during op and do laparotomy. Recovery time so much quicker - wow 3 days in and out sounds fabulous Sarah!!! The doc down south would do a laparotomy and said 7 - 10 days in hosp and then 1 - 2 weeks nearby for regular check ups before being allowed to fly back home.

Tracy.... look forward to hearing from you soon

I had a slightly better night, still cramps and distention but not as bad. Will wait until i've had some more clear soup (can't stomach that for breakfast) so will wait until a little later. If it doesn't react too badly will stick it out at home, otherwise it's back to hosp. Will keep you posted...

Thanks guys, it's so reassuring to know that there are ladies out there who actually KNOW what i'm going through!!!

xxxxx