Chronic dilated bowel loops/pseudo obstruction

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 

I had my J-pouch surgery in 1991 and no problems until late 2019.  Since, I am having similar problems as described in many other posts above.  I have severe pain in the left lower abdomon (very close to where the temporary ostomy was), am unable to pass stool or gas easily, have pain every day. I have been hospitalized twice in the last 2 months for bowel obstruction and had to stay in the hospital, NG tube, NPO and wait it out.  Eventually the obstruction worked itself out.  I think the next time I may just try to work through it at home.

Many have talked about having exploratory surgery to determine if there is any twisting of the bowel or pouch and/or looking for adhesions that cause this.  Due to multiple surgeries over the years, not just bowel related, surgeons are reluctant to operate anymore, unless it is for an emergency or a specific purpose.  Several surgeons I have talked to will not perform exploratory surgery. Perhaps having a temporary ostomy to see if that helps would be a good idea and can be discussed with my surgeon.  My fear is that may fix things and I have always said that death would be better than living with an ostomy for the rest of my life.  I saw my dad live with one and he hated every day while he was alive. I feel like there is no hope either way.

My GI doctor recently mentioned that sometimes the J-pouch can get twisted from time to time and that there is some kind of procedure/surgery they can do to put something in place to hold the pouch in place so it doesn't move.  He didn't mention the name, but suggested I visit with my surgeon to see what he thought.  Is anyone familiar with what this procedure is?

Hi Lawsonk,

Firstly, there all different options, not all of them open surgery.

I had a colostomy at age 2, closed a year later. It left me with chronic blockages as a kid.  Eventually, I had a K pouch done when I was 18, in 1979, along with a total recto-collectomy. (for full-blown incontinence due to either IBD, irritable bowel, spastic colon...I got 2 dozen different diagnoses but they all added up to the same hell...my guts were in a knot, I had no sphincter, and had regular blockages.)

Since my K pouch, life has been much better but I started having full or partial blockages in 2008, post-op a valve revision. I was in shock the first time. They became more frequent and I could mostly deal with them but at one point it became too frequent and dangerous...I consulted a laparoscopic surgeon in 2013. Since I needed my galbladder out anyway, he went in, pulled the galbladder out, and checked the region...sure enough, I had a loop of bowel adhered to my abdominal wall by adhesions at the exact spot. He liberated it, and for about 2-3 yrs, I was blockage-free.

I now need the surgery done about every 3 yrs...the adhesions come back. When I can no longer stand the blockages or they become too severe  I have the surgery done. Since it is laparoscopic it is much easier to handle. It takes 2 nights in the hospital and about 1 week - 10 days to recover completely.

Then I am free.

I understand about not wanting the permanent ileostomy, I have never been able to accept it either which is why I have fought so hard to keep my K pouch.

You might wish to look into both ideas and see if there is anything that you can do to get back your quality of life.

Good luck

Sharon