I’m in the hospital for the 20-nth time in two years. I keep getting partial obstructions but they never have a transition point on scans (a place where they see narrowing or a stricture causing it).  It’s more like a paralytic ileus.  The bowels become dilated like typical obstructions, but for reasons no one can figure. They have brought in GI and colorectal consults, dieticians, a general surgeon and even a rheumatologist. They also have a special GI clinic that only deals with IBD and j pouches. I’m in good hands here. 

I have pretty much chronic lower right quadrant pain that ranges from mild to debilitation, nausea and malaise, and have been unable to work for nearly 2 years. No issues with leakage or urgency, but stools are all over the place in terms of consistency, colour etc. I’ve had these tests: CT and MRI enterography, multiple scopes, barium follow through, gastrograffin follow through, motility tests, defocography. 

I was just wondering if anyone ever had this-I think it’s called “distal partial small bowel pseudo obstructions” with terrible pain in lower right abdomen. My surgeon tried a rectal tube as he thinks maybe the pouch isn’t emptying properly causing the back up and all the bowel dialation. It seemed to help a bit. They just ruled out any motility disorders today.


The defocography showed my pouch is malpositioned (it wasn’t for 18 years) and the vagina and pouch are running into each other when I go to the bathroom but not at rest.  


GI seemed convinced it was chrohns given some related skin/joint issues but on my scope today it was perfectly healthy. No  bowel wall swelling etc on the ct and mri.

I might opt to lose my pouch which I’m becoming more ok with as I’m sick of living like this, but I just want to understand what this is, and that if I do that, it will fix this. I’d be very very mad if I went through all that and then had these same problems. I have a good team here who haven’t finished their work up but I guess wanted the patient perspective from all of you. 

so, whose had mysterious functional (not mechanical) distal small bowel obstructions?

Last edited by duck11
Original Post

Hi, 

Not sure if what I have to say is of any help but here goes...

My k pouch is 40+yrs old...I have had numerous redos, colostomy, proctocolectomy etc and never suffered from ileus or obstructions.

In 2008 I had another series of abdominal surgeries. And had my first total obstruction 10 days post-op.

It lasted 27hrs...

That was the start of a 'thing'. They would come without warning, sometimes violently others slowly, always with a sharp pain on the left side, nausea, vomiting, NPO for 24-48hrs...I learned to not bother to go to ER and ride them out...not fun.

For nearly 10 yrs I lived in fear...sometimes I would get a bad one and then nothing for 6 months and others it would be every other week. 

No rhyme or reason...we did every single test, exam, MRI, Scan, contrast...nothing...they were real, my doctor believed me (thankfully) but we had no solution.

Then when I had a very hot gallbladder he had to go in urgently and I begged him to check my 'hotspots'...2 of them where I felt that the blockages originated...I marked my abdomen with a pen.

He found a loop of bowel that had adhered to the abdominal wall...a perfect loop so it did not show on any of the tests...exactly where I had made the mark (also where my old colostomy site/stoma was) and a 2nd site with adhesions growing around it so that it could not stretch or expand causing 'back-ups.

He literally dug the gut out of the abdominal wall and it took a while to heal but luckily things are much better now. 

Some things just do not show up on the exams...

Not saying that this is the problem but, personally, I would prefer an exploratory laparoscopic surgery to having my pouch removed without any solid proof that it is the problem.

Sharon

 

Thanks Sharon, that’s a really good way to look at it re:exploratory laparoscopy first. I really feel it is an adhesion or bowel stuck to a wall just because I’ve had a “tugging” in that area for years if I move certain ways. It’s frustrating getting scan after scan with no answers other than dialated bowel loops saying “something” isn’t working. I do also have some malpositioning of my pouch on defocography.

I think I’ll ask the surgeon about the exploratory laparotomy tomorrow. He’s willing to do a temp. diverting ileostomy at this point to see if things calm down,so maybe he’d also be willing to do what you suggest. 

Thanks for the suggestion Sharon! My surgeon is going to give me a temp. Ileostomy to see if the pouch pains go away when it’s not in use, and also check for adhesions/explore for other problems. He said once they even found someone’s ovary twisted into the bowel so you just never know. Fingers crossed something will get solved, I’m feeling cautiously optimistic. 

That is good news...any progress is still progress. 

I truly hated the idea of taking the risk of removing your pouch only to find out that that was not the root of the problems. 

This sounds so much more prudent...and hopefully you will get your answer that way.

Sharon 

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