Hi! I've had a J-Pouch for about 27 years now (hooked it up at 8 years old, now 35) and I've had issues with obstructions since I was little. To me, they seem to be related to certain foods I eat, as I don't usually get them if I'm extra careful with what I eat and don't ever overeat. But no matter how hard I try, I'll usually get one at least 3-4 times a year.

My GI doctor and surgeon don't seem to think the obstructions are related to foods. They think it's adhesions that were created from the surgeries that I've have had. This year, I had 2 bad ones that lasted about 12-13 hours and included quite a bit of vomiting and had to head to the ER. After getting an IV and pain medication, it passed. However, I have had some in the past that needed the NG tube, which I despise! But haven't had one of those for like 12 years.

So basically, nobody has been able to pinpoint what to do about the adhesions over the years, except that they are adhesions most likely. So I've just been doing my best to get by.

This year, I had an MR enterography and just had a flexible scope to check for Crohn's and it didn't indicate any. Also, no narrowing or strictures. So everybody is pretty sure it's adhesions.

Surgeon says he could do Laparoscopic surgery and try to see if there are any adhesions or bands and cut them, but can't guarantee it. He says it's up to me. Question is, has anyone had this Laparoscopic surgery on here? Is it worth trying this or am I better off just continuing on and dealing with the partial obstructions when I get them? Diet seems to be restricted with these adhesions, hardly any fruits or vegetables. No high fiber, no potatoes. These things seem to cause a blockage. It's been hard being on a limited diet all these years but it sounds like a lot of people with pouches have this.

I don't like these obstructions, they make me sore for like 3 days and it hinders my everyday routine if I get one. But, I'm getting the impression that the Laparoscopic surgery is kind of a gamble. Anyone know if it's much of a recovery period? Are you back to normal in a few days or does it take longer? Any advice is appreciated! Thanks!

 

 

 

Original Post

Hi Raptor,

Like you, I had abdominal surgery done very young (at age 2) and ended up with a colostomy that was reversed a yr later...The site used to always block up when I was young but then I had my k pouch done at 18 and a total colectomy and things seemed fine.

Between 2000 - 2010 I had a lot of pouch revision and hernia surgery which left me with repeat occlusions...I had never had them before and was shocked the first few times...I went back to my surgeon here who is a laporoscopic specialist (he did all of my hernias (x5), repositionned my pouch (x3) and removed my galbladder that way (sometimes all 3 at the same time!)...

So it was natural for me to ask him to check out the occlusions...he found a real mess and did a great job taking down the adhesions, lysing others and generally cleaning things up in there.

No complaint from me whatsoever...any surgery that can be done without me needing to be opened up is a bonus...he keeps me in for 3 nights just in case (he like to be careful with my pouch and remain vigilant) and then I go home and rest up for a few days then back to work.

This has been a revelation to me...not using open surgery is as close to a miracle as I have found...does not mean that he is not doing the work in there just that you have one less thing to worry about post op and so much less pain in the long run.

They say that you re-build less adhesions this way too.

Sharon

It's such a touch call.  I was in a very similar boat with chronic obstructions over an 18 months period...in and out of the hosptial.  Some that would would last a few hours and some up to a week.  A full obstruction that would not resolve on its own finally got me into surgery.  They removed 8 adhesion bands.  One had completely pinched the bowel off entirely.  So...if I would have gone in for elective surgery, the likely would have removed those 8 bands, which may have saved me from a very tough surgery landing me in the hospital for a month, however, surgery only forms more scar tissue and more adhesions and of course, it's surgery that you have to recover from.  It's kind of a gamble either way :/

I also want to add that my first surgery to remove the adhesions was lapro.  They missed an adhesion, the worst one, which was way down by my pouch. They could not see it with the lapro surgery.  I had a second, open surgery a week later (thus the complications and the month in the hospital).  I'm ALL for minimizing incisions, but just a note, that without being fully opened up, the surgeons won't be able to get the full picture of what's going on.

When you say obstruction do you mean like impacted stool?  I had total coloctomy and jpouch surgery 10 years ago and also surgical hernia repair about 8 years ago where my stoma was. Now I am having discomfort in that area but nothing showed up in ct scan or pelvic and vaginal ultrasound. Starting to get worried even though its not really pain but more discomfort going on for quite some time now and getting a little worse. I think it has something to do with the mesh they used but PCP said it would have showed in CT scan (?). I dont know

LAURIEF, Obstructions aren't generally impacted stool; that would be called constipation, which is plenty uncomfortable, too. Obstructions usually involve something closing (completely or partially) the tube (lumen) of the small bowel. Just like a garden hose, it can get kinked or twisted. A stricture can also get tight enough to cause an obstruction. Food will pile up behind the obstruction, and liquids will pass through a partial obstruction better than solids, but the food/stool isn't the main problem.

Adhesions can increase the likelihood of a kink developing.

I am an advocate of laproscopic adhesion removal - because it worked for me. I have had zero issues since then. Please remember that adhesions form not necessarily because of incisions, but from manipulation of the organs. So, if your doctor is good with a laproscope and can lyse them without a whole lot of manipulation of your intestines - you should have good results. That said - we are all different. My surgeon described two totally different scenarios - me, who had 2 or 3 serious adhesions, and a woman she had operated on the day before who had 20-30.

My advice - if you are having issues, it's worth a try.

Raptor posted:

Hi! I've had a J-Pouch for about 27 years now (hooked it up at 8 years old, now 35) and I've had issues with obstructions since I was little. To me, they seem to be related to certain foods I eat, as I don't usually get them if I'm extra careful with what I eat and don't ever overeat. But no matter how hard I try, I'll usually get one at least 3-4 times a year.

My GI doctor and surgeon don't seem to think the obstructions are related to foods. They think it's adhesions that were created from the surgeries that I've have had. This year, I had 2 bad ones that lasted about 12-13 hours and included quite a bit of vomiting and had to head to the ER. After getting an IV and pain medication, it passed. However, I have had some in the past that needed the NG tube, which I despise! But haven't had one of those for like 12 years.

So basically, nobody has been able to pinpoint what to do about the adhesions over the years, except that they are adhesions most likely. So I've just been doing my best to get by.

This year, I had an MR enterography and just had a flexible scope to check for Crohn's and it didn't indicate any. Also, no narrowing or strictures. So everybody is pretty sure it's adhesions.

Surgeon says he could do Laparoscopic surgery and try to see if there are any adhesions or bands and cut them, but can't guarantee it. He says it's up to me. Question is, has anyone had this Laparoscopic surgery on here? Is it worth trying this or am I better off just continuing on and dealing with the partial obstructions when I get them? Diet seems to be restricted with these adhesions, hardly any fruits or vegetables. No high fiber, no potatoes. These things seem to cause a blockage. It's been hard being on a limited diet all these years but it sounds like a lot of people with pouches have this.

I don't like these obstructions, they make me sore for like 3 days and it hinders my everyday routine if I get one. But, I'm getting the impression that the Laparoscopic surgery is kind of a gamble. Anyone know if it's much of a recovery period? Are you back to normal in a few days or does it take longer? Any advice is appreciated! Thanks!

 

 

 

Hello Raptor,

I was just wondering what happened with your surgery. Did you end ip having laparoscopic adhesiolysis?

Cheers,

Sarah

I’m following this discussion closely as I am in the exact same boat-I’ve had 23 partial obstructions in the last 18 months and I WISH someone would just try surgery! It’s interesting you were given the choice as the surgeon I saw said it won’t help so she wouldn’t do it. It really comes down to what u can live with —I’m at a point that I can’t live like this as it affects my ability to work and care for my family, so it’d be worth the gamble. I’m waiting to see a surgeon across the country for a second opinion. Such a hard call to make-please keep us updated on your progress and good luck! Obstructions suck 

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