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loops and end ileostomies

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Posted 5/15/2014 7:39 PM (GMT 0)
Hello all,

I currently have a loop ileostomy. SOme imaging studies have shown that there is scarring and narrowing right at the site where my stoma comes out. It is kinked fairly bad.

MY symptoms definitely correlate with the findings. I would seem to always get bloated and uncomfortable around the same time after eating. Food would basically make its way to the exit then get caught up at that kink/90 degree angle and hang out until enough foods and fluid built up behind it to push stuff through (the initial food that would come out would be a bit more firm from sitting there and having water drawn out, then "the darn would break" and all the stuff that built up behind it would gush out).

THe plan is to convert me to an end ileostomy. My loop was only about 5 or 6 inches up from the end of my intestines, so it wont have much longer to travel now, and should have a much better exit!

I just wanted to get peoples experiences with loops and end ileostomies. Did you tend to have more problems with one or another? My imaging studies (enteroclysis, small bowel follow throughs, etc) have shown no other adhesions, narrowing, or hold ups anywhere else in my small intestine.
Posted 5/16/2014 2:03 PM (GMT 0)
Anyone??
Posted 5/16/2014 2:34 PM (GMT 0)
Presumably as you have a loop ileostomy, it is temporary?

I never had a loop ileostomy, so cannot comment on them from personal experience. But if a reversal is on the horizon, I'd be inclined to wait it out until then. It sounds like you can still eat, albeit uncomfortably. Since each abdominal surgery creates new adhesions, it's really best to keep abdominal surgeries to the minimum if you can.
Posted 5/16/2014 3:09 PM (GMT 0)
I never had an end, only a temporary loop (which was terrible) but I have read endless stories that end ileostomies are so much easier to manage than a loop ileo. Loops are notorious for issues. If your surgeon feels it's a good move, I would go for it.
Posted 5/16/2014 4:26 PM (GMT 0)
No reversal planned in the near future, but definitely years down the road. I have to much going on with medical school right now to attempt one and have it fail or not work out. I have had my loop for about 2 years now as well, so my intestines have adjusted (At first I had the famous loop diarrhea, but it has gradually settled to a decreased output compared to initially)
Posted 5/16/2014 4:31 PM (GMT 0)
I've had both. End is better. But the loop for me is temp. It is more watery for me. You do have to watch what you eat so it doesn't plug up. If yours is temp how soon would you be rid of it?

Mine will be gone in sept. I personally would wait because the more surgeries means more scar tissue, which can be painful.

It's up to you. But if it's that bad, I would probably go with the end.
Posted 5/16/2014 6:17 PM (GMT 0)

boatnerj said...
(At first I had the famous loop diarrhea, but it has gradually settled to a decreased output compared to initially)

Don't you mean infamous? My output with the loop is totally different than the more solid and consistent End Ileo output.

I had to be readmitted to the hospital through the ER because of a kink near the loop. I was only 2 weeks post surgery when it kinked. They put a plastic "stint" like device through my stoma to unkink it. No pain at all from the stint. The kink was super painful.

The End Ileo was easy to live with, i've had nothing but problems with this loop ileo.
Posted 5/16/2014 9:42 PM (GMT 0)
As I mentioned, I had my loop for about 2 years. Given enough time, even a loops output will slow down. It's just a matter of months/years before the small intestine starts taking on some of the colons function. It basically increases its surface area, micro villi, and up regulates water and electrolyte absorption, so my output currently will most likely be the exact same my end will produce (my small intestine has already completely adapted).

I am looking at several years, maybe even a decade before I can try re attaching (currently in my third year of med school, beginning rotations. Lots of tests, residencies, internships,etc all coming down the pipeline in the future!)
Posted 5/16/2014 10:21 PM (GMT 0)
My main reason is the blockages I was getting more frequently along with the fact that whenever any food gets to that kink, it just sits there until enough pressure can build to force things out, so my output is very intermittent instead of nice and steady. It also causes a lot of discomfort and bloat in that particular area.
Posted 5/17/2014 1:11 AM (GMT 0)

boatnerj said...
No reversal planned in the near future, but definitely years down the road. I have to much going on with medical school right now to attempt one and have it fail or not work out. I have had my loop for about 2 years now as well, so my intestines have adjusted (At first I had the famous loop diarrhea, but it has gradually settled to a decreased output compared to initially)

Changed my mind, then; years is too long to live with partial blockages. I would go for the end ileo.
Posted 5/17/2014 1:33 AM (GMT 0)
I'm sure I'll get some blockages with the end. They just happen. Just hoping its much less then the darn loop.
Posted 5/17/2014 5:01 PM (GMT 0)
     I have an end ileo.  My surgeon told me I was not a candidate for j-pouch because of my overall health situation.  However, I was fine with that.  I have never had any regrets.  He did a fine job and I know I wouldn't be alive today if I didn't have that operation.
Posted 5/18/2014 12:03 AM (GMT 0)
Sorry for your struggles. Whenever I get obstructed, that buildup and gushing feeling can be quite painful, uncomfortable. Abdominal distention, etc. I have an end. I know your busy with your personal life, and the next 5 years will be crazy and thereafter when your finished with residency. I hope your loop will be sustainable until your ready and not give you more grief. Try to drink things that will move the affluent out of that area. Possibly hot drinks, prune juice....see what works. Also massage or a heating pad on that area might not only help in moving things, but with the pain and discomfort.

All my best!!! Also happy to hear that your small has compensated for your colon.....
Posted 5/18/2014 1:53 AM (GMT 0)
Boatnerj-- I hope you get a solution. Certainly, more surgery is always a drag, but it sounds like it might really help in your case. I have an end-- I can basically eat anything and don't "feel" digestion at all; no blockages. My end was the result of step 1 of what would have been 3 step jpouch surgery. Life is so normal for me with the end ileo that I immediately decided that I would never want to risk a jpouch-- in particular, having total control over when I do a number two (emptying my pouch is my new number two) appeals to me hugely. I eat pretty much whatever I want etc,., and my output is mostly like oatmeal. Anyway, my overall impression is that ostomies get a bad wrap because so many bad impressions are passed on by those who get two step jpouches and only experience loop ileos, and on average I suspect on a 0 to 10 scale, where 0 is sheer torture and 10 if life is almost as normal as a normie, an end ileo is a 9+ while a loop ileo is a 2 or something, but then, I have never had a loop so unlike Pluot etc I am not truly qualified to throw out numbers like that. It's be like someone without and without ever having had an ostomy commenting on life with an ostomy. Best of luck though-- an end certainly is like day vs night compared to a loop, I am certain.

Post Edited (Probiotic) : 5/17/2014 7:58:58 PM (GMT-6)

Posted 5/18/2014 9:58 PM (GMT 0)
Great to hear. Thanks probiotic.

Here's a tip for those who have too thick of output and want to attempt to thin it out a bit, use some more gentle magnesium supplements (those that chelates to amino acid complexes and typically end in -ate) that don't just cause diarrhea. An added benefit is most people don't get enough magnesium. Start low at around 200 mg and increase until you get the consistency you want. I had to play around with it to help with my situation because the more liquid things are the easier it is for it to get around my kink and relive some bloating.
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