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So I woke up in the middle of the night with horrible pain. I'm 3-4 days out and still having trouble but I'm sticking to soft foods and sugary liquids. I've had a J-pouch for about 14 years now. I didn't go to the ER after reading about what they would likely do, including pumping my stomach, or putting me on IV (and no food) for a few days. I can starve myself at home just fine if it is necessary. 

I don't have pouchitis or crohns disease so what is the likely cause? Adhesions at the location of cutting/surgery where the pouch was formed? Or is it more likely strictures? I'm certainly a dinner including celery was the culprit or trigger this time.

Could anyone shoot me the most recent literature/studies on causes for obstruction post take-down and their likely long-term outlook, such as more frequent obstructions and eventual correction surgery? 

I'm just curious what my future might look like by the numbers. 

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Anything can cause it..structure, adhesions, skin on an apple or skin on a hotdog. You never really know. I know we are more tempted to stay at home and pump the fluids to see if it passes but it really can get life threatening rather quickly. I remember my last one moved really quickly and within hours I was in the worst pain of my life. I had to call an ambulance and both morphine and oxycodine wouldn’t touch it. It ended up clearing itself but man, I was glad I was in the hospital. 

 

I'm sure the culprit was celery on the night of the incident. I wonder how long that insoluable fiber can stay stuck. Looking at other people's posts on partial obstructions - it might take weeks to get back to normal. I'd just like to understand what/why on that. I think I'm past the need for an ER visit unless I'd benefit from a scan. I'm just being careful and staying on mostly liquids and meat like hamburger that I know will liquefy in the gut. 

I might even try a 3 day fast if there is evidence that could help or calm things down. My gut still feels sick and yucky but it's not blocked. 

How often or is it common? I’m not sure. I think i read somewhere that they are pretty common right after your surgeries bc of scar tissue and such, but they can happen at any time after- even years after. No rhyme or reason in my cases I think they did an ultra sound one time in the ER bc they were waiting on a CT machine- it was going to be a long wait so the ultra sound helped them get a good idea of what they were dealing with. Otherwise, they usually would make me drink the contrast and do the CT to tell if there was an obstruction. 

Definitelt have to be careful with them. My doc says to always go to the ER but I’m always reluctantly unless I’m in a lot of pain. I’ve just had way too many medical stuff, I hate the Ear and docs, etc. But that being said, it’s def better safe than sorry, and they can make sure something bigger isn’t going on. We can’t lose our small intestine, so we better take care of it, right?!? 

Bubba, ditto on hate the ER and doctors. They rarely know what they are doing and are often rude. It's a checklist business. The ER is full of people that don't belong there (drug seekers) these days which makes it horribly difficult for us. 

That being said, it's still safest to go. I'm doing way better now but think I'm gonna find an University GI and schedule for a looksy just in case. 

My husband had one of these the other day we think. We went to the ER, but it was the VA and they didn’t really help much. They did an X-Ray and a CT Scan, said they found nothing, but he did get things to pass within a day. Does anyone have pictures of what the adhesions look like in an x-ray or CT Scan? 

Also, where the small intestine is severed to attach to the bag...when it is reconnected to itself in the final surgery, is it at all still attached to the abdominal wall? 

You can’t see adhesions on x-rays or other imaging studies. They are wispy attachments between sections of bowel or between bowel and the abdominal wall. The bowel naturally moves a lot, and these attachments can cause this natural movement to result in kinking or twisting. If you’ve ever had something in a clothes dryer get partially trapped (on the door, for example) then you’ve seen what happens when one part turns while the other part can’t. The bowel doesn’t move as much as clothing in a dryer, but the idea is similar. A Google image search for “abdominal adhesions” might help you visualize what’s going on. Eventually this natural movement usually unkinks the obstructed bowel, but it can get miserable and dangerous in the meantime. The key dangers are dehydration and bowel rupture, and these are the only things the ER can help with, other than providing pain medication.

I have this week had my 6 th blockage hospital in January I have managed the others at home I have had my pouch 10 years this August,my problem it seems is called dysmotility of small bowel .this time I apparently became dehydrated I felt I had drank enough took hydralyte products  plenty of water, something wasn’t right so went to my doctor had blood test done and rushed to hospital as my kidney function was seriously low was put on drip to hydrate me now I have a partly damage kidney so my warning is maybe at times we need to go to E.R I have always had great care from doctor’s and staff maybe drinking does not always do it we need more .when you have a blockage don’t eat just liquids for several days then start with jelly custard type food I would not even consider mince just my thinking all the best 

Thanks all. An update on this situation is I went to the ER, was admitted to the hospital, had a very swollen belly and wasn't getting any help in the hospital. My wife jail broke me out and we drove to a much bigger hospital in Tacoma, checked into the ER where they pumped my guts via NG tube. 2 days later they sent me home and I ate 1/2 cup of mashed potatoes which immediately blocked me up. I was then back to the ER, and I'm still in the hospital days later. 

The surgeons are telling me that the swelling is down and the bowel looks good with CT contrast (I puked out 90% of the contrast before they ran the test). I've seen at least 4 different surgeons from the same group (doing their rounds) and 2 PAs supporting them. It seems like I've gotten a different story each time which is frustrating. 

I think I'm going to be right back in the ER after they release me which is scary. 

So the surgeons tell me I'm no longer obstructed. I drink 3 cups of juice and within an hour I'm bloated and puking again. I turned on the NG tube pump and pumped out 1400ml of fluid, which is roughly the amount of ice chips/sips of water and juices I drank in the last 2 days. Upon pumping I felt fine again. 

Are the surgery  people incompetent in my case? I'm getting a full blockage from grape juice. This is just crazy. 

Julie, I sure wish I knew. I can't even absorb water or grapejuice and I think I proved it out when they pumped my gut again. My BMs are clear liquid with pieces of mucus (pouch output and not upper gut bile, etc.) I know that a clean CT isn't even close to objective proof that a blockage doesn't exist. So far I've seen 4 surgeons in 6 days and 2 PAs doing their rounds so I keep getting a different story. It has been frustrating and at this rate I might be in the hospital for weeks. 

I’m a little new to the diagnostics, but do you think they could scope things to see? From my understanding it is very difficult to see the twists and adhesions in a CT Scan or an X-Ray. 

Your BMs definitely appear to be evidence that you’re “straining” whatever you are able to pass, as though through a colander. 

Are you able to tell if the blockage is near the beginning or ending of your system? In theory, if you were able to digest some of the food before it came up, you might get some sustenance. 

One of the theories for my husband was where his small intestine was severed for his bag. We are concerned there is excess scar tissue there and possibly that is causing an adhesion of sorts, leading to a partial blockage. 

Another thought: The muscles of the psoas attach to the front of the spine, in front of the lower back. Sometimes, when those muscles are inflamed or tight they place pressure on the intestines. I know it is a source of constipation for many people, although I’m not sure how it’s different for those with a J-Pouch. 

I’m keeping you in my thoughts. If I think of anything else, I will let you know. 

@Bubba Ive been on IV for about 6 days now. No feeding via IV yet but I'm going to ask about that tomorrow. I needed to drop 10 pounds but I wasn't expecting to do it this way! I feel like they are just bumbling around with my care at this point so I finally got the social worker/patient advocate involved. I would welcome exploratory surgery. 

The surgery group here is general surgery so they don't do pouches or any of the scoping. They are the cut/snip types

@Julie, I'm not sure on where the blockage is exactly. The CT scan report says location 188, whatever that means but it seemed like they were pointing it to be in one of the 2 stage J-pouch surgical locations. I think that's the only thing that makes sense given adhesions and scaring occur wherever you cut.  Ideally someone could scope that first few feet from the pouch up. I've had a pretty good 14 years with the J-pouch so this is my first real issue outside of having high output (always been that way). 

I'm in the Seattle/Tacoma area and you'd think that medicine would be top notch given all of the money here and the booming economy but our hospitals are no Mayo Clinics. They suck and the coordination of care sucks but I believe that's the case most places outside centers of excellence like Mayo. It's certainly got me worried that I'll be harmed or unnecessarily chopped in places that don't need to happen. 

Grape juice is the gold standard test for me. 15 mins from mouth to anus on a normal day and I can't pass anything whatsoever after cups of that juice sitting in my stomach for hours. 

Frustrated Incorporated. Thanks for the support. 

Obstructions usually clear on their own, but it can be quite miserable while you’re waiting for that to happen. Surgery is generally reserved for situations with no alternative, generally when the bowel will rupture otherwise or when the blood supply is cut off. So the critical skill is patience, which can look a lot like bumbling.

If obstructions just keep recurring elective surgery can be done to cut the adhesions that cause obstructions. This surgery sometimes works, sometimes doesn’t, and occasionally makes things worse. It’s always better to do it when things are calm and unobstructed, if at all possible.

If your obstruction doesn’t clear on its own they can certainly go in and clear it, which would surely be quite a relief. Be aware, though, that you would likely develop additional adhesions from that surgery, and possibly more frequent obstructions as a result. There’s a good reason that they are stalling.

It's looking like it's probably a hernia where a loop of intestine is stuck up in the belly fat (pocket) so every time I fill up with fluid, it get pinched off. If that said is true they are going to sew up the hole in the belly fat so the intestine can't sneak back in there. 

The real bumbling has been the communication part and not listening to the patient. I eventually had to start recording the NG tube output times/rates, urine collection times/amounts, etc, because the nurses were not reporting it back to the surgery group. They also didn't bother reporting I threw up all of the dye before the first small bowel follow through xray, which nullified the entire test. 

What got the communication going for me was contacting the social worker/patient advocate group at the hospital which I recommend everyone do. They are there to help patients but also for damage control to avoid lawsuits due to bungled care.

I still gotta head to the OR and hopefully the hernia suggestion is accurate. It was the most plausible explanation I've heard in in the last 7 days. 

Thanks all. They cut out a a couple inches of small gut that was trapped in scar tissue (adhesions). Oddly it was up near my stomach and was unrelated to the prior ileo site or the j-pouch area. I guess I just scarred up in the entire abdomen after my j-pouch was done long ago. 5 hour surgery laproscopically but they ended up having to open me up at the end anyway.. Either way, I ought to be out soon. It feels just like takedown did 14 years ago from one little gut resection.  

 

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