Hi, Ken. That CT scan sounds like you may have two things going on - one affecting pouch emptying (that may have started over the summer), and a more recent obstruction upstream from your stoma site. I don’t understand how your CT scan (with a dilated/enlarged pouch) is consistent with a “clear” pouchogram, so something may have been lost in the communication. There are a variety of ways to explore incomplete emptying problems, but assuming the anal sphincter isn’t in spasm defecography tends to offer the most information. I wouldn’t try this until your upstream obstruction clears, though. In the meantime you might ask if you can try to get some pouch relief (if it’s a major source of discomfort) by emptying your pouch using a catheter, just as a stopgap. Good luck!

Thanks Scott - always appreciate your replies and vast knowledge. 

To clarify, the surgeon on my case now looked back at the pouchogram from the summer and believes they are similar, that the "clear" designation was incorrect.

Defecography and catheter don't sound overly fun, but good to know there are options to consider and that I can bring up.  Right now the comfort level is ok, though I'm getting concerned that there's been no change in bowel habits after 2 days of liquids + IV. 

Possible scope coming tomorrow or Monday, but here's hoping things start moving!

@KennyJG44 I hope things start moving, too!

Thanks - MRI this morning, hopefully that will bring some more info.

@Scott F - any chance this could just be the worst case of gas ever?  I just drank a bunch of contrast liquid for the MRI and it all came out after, with minimal gas.  If I push around the abdomen, I can get some gurgling going, and every little while, I get a big urge to empty, little pain, and then it recedes.  Still only passing liquid, though haven't eaten since Thursday.

I was able to lay on my stomach and get some gas to pass; not enough to get relief, but something.  Any other positions, exercises, voodoo dancing that is known to help move whatever it is, along?

Ken, in some sense partial obstructions *are* just the worst case of gas ever. “Normal” gas pain happens when gas is briefly trapped, so peristalsis makes it stretch the gut (ouch!) rather than proceed forward. There’s 22 feet of intestine smooshed into the abdomen, so there are always temporarily narrowed areas that (ideally) slip around in there and open up as needed. Things like adhesions impede some of that free movement and can make narrowings more persistent. They do generally clear up on their own, and people have often reported here that contrast liquid seemed to resolve their obstruction. I’m not an expert on the various postures people advocate, but simple walking is a very common theme. In my experience once the acute problem removes things can feel a bit bruised for a day or three.

Here's my recent story; may help, may not.  After 13 years with an ileostomy with no problems, I began to experience partial blockages--3 in one week.  I was directed by my primary care physician to see a gastroenterologist (I didn't have one).  The gastro recommended an endoscopy to start with.  After this procedure I was informed that I had 3 ulcers in my stomach--totally shocked!  I am now on Prilosec for three months.  Then I was sent for a CT Scan and an MRI.  Both revealed no problems with my small intestine.  I do have a small, seemingly benign, lesion near my liver and it was recommended that I have a repeat MRI in 6 months.  Things have returned to normal, but now I'm careful of eating anything with high fiber.  I am no longer experiencing partial blockages.  Maybe the ulcers were the cause.

We live in a very stressful world and the gastro mentioned that he is seeing many more patients with stress related gastro issues.  Who knows?

Wishing you all the best,

Caty 

I am so sorry to hear that! I have had a ton of blockages with my stoma in the past; its very painful and its stressful! I know exactly what you are going through. The reason for my blockages with the stoma was because I have a thick/muscular abdomen wall and that was causing the blockages, things are better with the J-pouch now. Do you have a thick/muscular abdomen wall too??? If you do, they might have to open up the stoma site in surgery to make it better- they did that on me but it did not work because I was so muscular, it might work on you though. If that fails, they can just leave a permanent catheter in the stoma to drain it properly, that worked on me until takedown.

Preventing blockages possibly: Drink water: before, after, and during each meal. Staying active: walking around, bike-riding, but not weight-lifting though. Those are some things I like to follow.

I hope things get better for you!

*KEEP US UPDATED*

Thanks everyone for the well wishes - much appreciated.  Unfortunately, not much action today - I guess no one works on Sundays.  I had the MRI this morning but haven't gotten any results/information from it.  I was able to take a look at the images (not that I know what I'm looking at); looks like my pouch and intestines above the inlet are enlarged/dilated/distended etc.  Not sure what to make of it - I'll have to wait for the formal results.

Otherwise, I continue to be crampy and bloated.  Many many times during the day I feel a more severe cramping which might usually lead to a BM, but instead it subsides and nothing happens.  Very frustrating.  They might scope me tomorrow, so I am NPO for now. 

Again, hoping for an overnight miracle in the bathroom...I've been trying to walk around more and stay mobile, massage the lower abdomen, but no luck.  Fingers crossed...

@KennyJG44 posted:

Thanks everyone for the well wishes - much appreciated.  Unfortunately, not much action today - I guess no one works on Sundays.  I had the MRI this morning but haven't gotten any results/information from it.  I was able to take a look at the images (not that I know what I'm looking at); looks like my pouch and intestines above the inlet are enlarged/dilated/distended etc.  Not sure what to make of it - I'll have to wait for the formal results.

Otherwise, I continue to be crampy and bloated.  Many many times during the day I feel a more severe cramping which might usually lead to a BM, but instead it subsides and nothing happens.  Very frustrating.  They might scope me tomorrow, so I am NPO for now.

Again, hoping for an overnight miracle in the bathroom...I've been trying to walk around more and stay mobile, massage the lower abdomen, but no luck.  Fingers crossed...

You are welcome And Sorry to hear that dear! I hope everything works out for you!

Please keep us updated

Hey All,

Finally had pouchoscopy this afternoon, they tried to put my off until tomorrow, but I insisted.

From what I'm told, they found ulceration/ inflammation at spot between upper and lower intestines, I guess the upper anastomosis.  Treating w double antibiotics (cipro, flagyl), almost like pouchitis I guess.  I'm hoping the area just got inflamed to the point it stopped traffic.... Sound feasible?

Hoping for some improvement tonight 🤞🤞

Ken

@KennyJG44 posted:

Hey All,

Finally had pouchoscopy this afternoon, they tried to put my off until tomorrow, but I insisted.

From what I'm told, they found ulceration/ inflammation at spot between upper and lower intestines, I guess the upper anastomosis.  Treating w double antibiotics (cipro, flagyl), almost like pouchitis I guess.  I'm hoping the area just got inflamed to the point it stopped traffic.... Sound feasible?

Hoping for some improvement tonight 🤞🤞

Ken

I had something similar to that from a open wound infection from takedown. Those antibiotics should clear everything up, it did for me in the year 2014. Everything should be fine. I think after everything is over, definitely try probiotc pills. SOme probiotic foods are: Oatmeal and yogurt, I eat that everyday and everything has been fine for 6 years.

I hope you will be okay and keep us updated!

Sending love your way

I hope the antibiotics help, Ken. I can’t quite tell from your description where the inflammation is (perhaps the pouch inlet?), but if the medication works it won’t matter so much.

@Scott F, sorry, still don't have all the lingo down after all these years.

I'm told at the top of the pouch, where it was reconnected after ileo takedown.

So they might mean the tip, but if they were specific about the anastomosis then they probably mean the apex. Since it’s the lowest point when you’re standing up calling it the “top” can be confusing. Here’s a nice diagram from https://i2.wp.com/colitisninja...6/07/JPouch-Info.jpg (but it doesn’t mark the pouch inlet, which is the part of the afferent limb where the intestine merges into the pouch.

Got it!  I'm guessing then, they are referring to the inlet area on the afferent limb.  Would that be closest to where the temporary ileo was?

@KennyJG44 posted:

Got it!  I'm guessing then, they are referring to the inlet area on the afferent limb.  Would that be closest to where the temporary ileo was?

The temporary loop ileostomy site is not right at the J-pouch. It’s upstream on the afferent limb, some distance away, and stool gets directed out of the side of the intestine. It’s a common site for discomfort and obstructions after take down, but ulceration and inflammation there (if they were able to get the scope up that far) would, I think, suggest Crohn’s Disease. I’d guess that’s not the spot we’re talking about, but I can’t quite tell. You could perhaps show the doctor the diagram and ask him to point to the spot.

@Scott F -  here is the image summary pulled from my chart (I work at the hospital).  All the number tags are sites of inflammation / ulceration (little white marks).  I dont' see any swelling or closings.  The note states everything else was clear.

Colorectal was here this AM - they aren't thinking there is any obstruction and both teams seem settled on treating this inflammation.  To me, something still not adding up as to why I'm not passing anything, not even gas.

These are pretty common locations for pouchitis. I still think you have two things going on. The obstruction symptoms and enlargement upstream from the stoma site aren’t likely to be related to the pouchitis, IMO, but I think that’s causing most of your discomfort. That will probably clear up on its  own, as most partial obstructions do. They may be using the word “obstruction” in its medical emergency sense (i.e. a complete obstruction requiring surgery, which you don’t have) rather than the looser way we often use it on this site. You haven’t described any classic pouchitis symptoms, but it’s probably worth trying to get that pouch inflammation under control, as they are doing with the antibiotics. Are they giving you the antibiotics by mouth? Are you eating anything? If nothing much is moving through then eventually that stuff has to go somewhere.

Right now antibiotics are by IV every 8 hrs; hitting it hard I guess.  I'm on clear liquids only right now.  I dont' know that I want to eat much more if I'm unsure its not going to come out the other end.  The colorectal team doesn't seem to think there is anything going on upstream based on MRI/CT - I guess time will tell.  Hoping you are right and it breaks up on its own (quickly).

I know I haven't really eaten much, which would explain a lack of BM, but I can feel gas/stool stuck in there somewhere.  I'm notoriously gassy; to not be able to pass gas is alarming, and I probably wont' be satisfied that all is well until I do.

@KennyJG44 posted:

Right now antibiotics are by IV every 8 hrs; hitting it hard I guess.  I'm on clear liquids only right now.  I dont' know that I want to eat much more if I'm unsure its not going to come out the other end.  The colorectal team doesn't seem to think there is anything going on upstream based on MRI/CT - I guess time will tell.  Hoping you are right and it breaks up on its own (quickly).

I know I haven't really eaten much, which would explain a lack of BM, but I can feel gas/stool stuck in there somewhere.  I'm notoriously gassy; to not be able to pass gas is alarming, and I probably wont' be satisfied that all is well until I do.

Before you leave the hospital, definitely eat before you go to see how things go, if it goes wrong at least your there for someone to help.

Are you doing better???

Thanks everyone for the support and advice. 

As I tell the doctors every morning, "I feel ok, just cramped up and nothing really coming out of my body".  Honestly, I am a bit frustrated at this point.  They seem kind of content to let me sit here and eat clear liquids and wait. In my opinion, there has to be *something* amiss in there for me to have stopped passing of even gas, which I do a lot of often.  A kink or fold or something along that line of thinking.  My last two attempts at a BM resulted in a little gas output, which is a change. But overall, frustrating.

Not sure what to do at this point. I can easily be home, cramped, on fluids and ABs.  What else can be done here at the hospital at this point?  At this point, a 5-day stay, relatively no change since I came in, and no end in sight.  What's the plan?

Ken

Ken, I’ve been lucky enough to ride out my partial obstructions at home. The two things that can warrant hospitalization are situations that seem prone to dehydration or bowel rupture. If neither of those are in play then maybe it’s worth asking the doctors what their plan is.

Same here Scott - haven't had to hospitalize for anything in quite a while.  The only reason I came in this time was at the behest of my GI.  I guess not a bad thing, found and treating those ulercations is a good thing.  As far as my other issue, hopefully it'll resolve sooner rather than later.  The dr basically told me as soon as I have a BM, I can leave.  I won't leave before that just incase something still isn't right.  If there is a kink/twist or otherwise, not sure there's anything that can be done, right?

Unless it gets bad enough to need surgery then your tools are fairly primitive: walking, fluids, and patience.

@KennyJG44 posted:

Same here Scott - haven't had to hospitalize for anything in quite a while.  The only reason I came in this time was at the behest of my GI.  I guess not a bad thing, found and treating those ulercations is a good thing.  As far as my other issue, hopefully it'll resolve sooner rather than later.  The dr basically told me as soon as I have a BM, I can leave.  I won't leave before that just incase something still isn't right.  If there is a kink/twist or otherwise, not sure there's anything that can be done, right?

Before you leave the hospital, definitely eat before you go to see how things go, if it goes wrong at least your there for someone to help.