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I had my takedown after temp ileo on dec 10. I developed an ileus late the first day after surgery and nearly 9 days later it finally woke up. My problem is I've now been having episodes of incontinence out my bottom every 15-30 mins for almost 32 hours now. My abdomen is still distended and I can hear water and gas sloshing around constantly. My biggest problem is I cant poop while sitting on the toilet. It only comes out if I'm sitting, lying or standing and have no control over it. Will this get better once the distention improves or does the dr need to do additional tests to see if my pouch is working properly?

 

I'm not too happy with my medical team right now but too sick to get a second opinion.

Tags: incontinence, ileus, Takedown

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Hi Sara, I was pretty unhappy just after surgery.  My Dr said to try going while sitting in the bathtub with some warm water.  Gross, but it really worked in the early days.  Once the abdominal swelling came down I stopped having to go through that.  So do not get too upset.  My tummy was super distended for a couple weeks, but it passed.   Also immodium or Lomotil whichever works best for you.

 

G
girlunky posted:

Hi Sara, I was pretty unhappy just after surgery.  My Dr said to try going while sitting in the bathtub with some warm water.  Gross, but it really worked in the early days.  Once the abdominal swelling came down I stopped having to go through that.  So do not get too upset.  My tummy was super distended for a couple weeks, but it passed.   Also immodium or Lomotil whichever works best for you.

 

My gosh you are giving me so much hope right now and I need it desperately after 10 days of ileus and 2 days of incontinence every 15 mins. My tummy is making less noise now. Pray it dies down and I will be able to walk more to improve regular peristalsis.

Sara O'Rear
Scott F posted:

Sara, I had a 10-day ileus and I was pretty pessimistic after that, but everything settled down over time. You really do need to walk, even if you have to wear adult diapers to make it possible. I also suggest plenty of kegel exercises to beef up your sphincter tone. Good luck!

I'm wearing pull up incontinence briefs because I can't control when I poop. I haven't started eating yet but I'm going to give it a try today. Maybe this will thicken things and make my bowel do more normal peristalsis. Right now I'm just completely distended and things are rumbling and gurgling like crazy.

Sara O'Rear

I had my J pouch constructed over a year ago included an ileus and 35 days in the hospital.  To date have not had the take down as within a day of having the pouch constructed I am incontinence and all my surgeon says u are likely to be that way but why wouldn’t u try ?   I have gone to the pelvic floor clinic and they say muscles are good except at rest and not sure I feel anything no warning when I am having the leaking  so at rest they say my anal sphincter at rest is wide open  so I’m guessing the sensory nerve was damaged maybe during the construction of the J Pouch surgery 

I never had any issues when I had the first surgery which was the end and then due to the drugs etc I had to wait a year for the pouch construction.  I didn’t know how good I had it as this loop is awful and I never had any incontinence

It a great thing to say sure let’s hook it up and then I can not have any control.  Right now still have the bag with the loop and wear a pad for mucus and water. I’m very depressed - is there not tests that can see if u are going to be incontinence

suregeon doesn’t seem to wanted to do any testing so likely  going to have another surgery to go back to an end and remove Jpouch as this leaking all the time is awful   Wish I never had the second surgery for this construction  

If any one has any suggestions or a surgeon they would recommend please let me know  

tried Imodium and she prescribed Lomotil  need 6 a day and still drains some but get a terrible headache from it

live in Canada. 

L

I know your post was quite some time ago, so unsure if you have had improvements with your issues.  It takes time for your body to adjust, and you need to adjust how you eat, and maybe even what you eat.  Everyone's a bit different.

I have had my J pouch for 17 years.   I discovered metamucil caps a year ago, and it has beem a life saver.  Less liquid poops and much less occurring butt burn.  There isnt a lot of support out there, and people dont like to discuss this topic.  Surgeons aren't much help in my experience, as recos are normally directed to medicine or surgery, and less focussed on how to use metamucil and food to naturally slow output.

For the past year, I take 1 to 2 metamucil capsules with every meal, plus anytime i drink alcohol, coffee etc.  I base it on what im eating too, like if i eat oatmeal which is binding, i can get backed up if i have too much metamucil and that is really uncomfortable.  If i have alcohol or mostly liquid or spicy food, i take a few more, as it helps to absorb the acid or spice - which helps reduce frequency and butt burn incidents.

Now i am trying to solve my nighttime incontinence.  I decided to try the powder form of metamucil so i can increase my doseage, but capsules are too expensive to use just to increase fibre.  I also try hard to not eat after 9pm, or i am guaranteed to have a nighttime accident.  I may introduce immodium at night, but im trying to do it without meds first.

Let me know how you are doing.  I hope the above info is helpful.

F

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