Symptoms of a pouch inlet stricture?

Antibiotics do not necessarily stamp out pouchitis, even if taken for several months, and your assumption that they do is simply incorrect. I have taken rotating antibiotics for 18 years and what this has done is kept the pouchitis in a "simmering" state. If I am off antibiotics for a week it deteriorates and I go from mild "simmering" pouchitis to being completely nonfunctional. Others on this board have been on antibiotics for years treating chronic antibiotic-dependent pouchitis.

Your procedure (if it was a pouchoscopy) was not a waste of time and money.

Regarding the stricture, my bowel is narrowed just above the pouch inlet due to inflammation. It is something that has been monitored for several years now, not just with pouchoscopy but also MRI and CT Enterographies. It is currently being treated with Entocort, pentasa and antibiotics. It's a situation that concerns my GI greatly. He tells me the area where I am strictured cannot expand and therefore a dilation is not possible. In your case if it is right at the inlet a dilation may be possible and you should speak to your doctor about it.

As far as symptoms, on my meds, there are none. However, if I go off my meds/antibiotics, within 10 days I feel like I going to have a blockage, because the stricture in my terminal ileum closes up from resulting inflammation. Our hope is that the Entocort brought that inflammation down and we will find out on my next scope, in June.

My GI thinks the cause of the inflammation just above the pouch inlet is "fecal stasis", in other words pooling of the feces above the pouch.

Thanks CT. In my case I was symptom free for months going into the scope which is the reason for my presumption that the pouchoscopy would yield no pouchitis findings (there was no evidence of simmering). Every one is different and I was referring to my personal case here not making presumptions about yours. Since I started the antibiotics before the scope there is no positive visual evidence that it was pouchitis at all vs, say bacterial overgrowth.
Regards to the stricture I have no evidence of this other than the difficulty in viewing the area during the scope. my thoughts are that if it 'ain't broke dont fix it'. I don't seem to have any symptoms that would indicate a stricture therefore I cant see any point in having the Barium enema . Best of luck with your issues.

The fact that the inlet area bleeds easily is reason for concern and further study. While functionally, "it ain't broke," but endoscopically, there are abnormal findings. Symptoms do not always match the endoscopic findings. I can see why he would not advance the scope when it bled so easily, as that's how perforations occur. There could be prepouch ileitis, ulcers, diverticula, or even a tumor in there, so I would not be dismissive of these findings. A barium enema would be a simple non-invasive test that could give some clue what is going on, and seems like an inexpensive first step before going for expensive scans.

Hopefully, it is nothing to worry about.

Jan

quote:

I was symptom free for months going into the scope

I have also been symptom free with simmering pouchitis. You would not notice anything amiss. Also, my GI told me that there could be microscopic inflammation in the retained rectal cuff which could lead to cancer, especially if you had a dyplasia or low grade dysplasia finding in your colon prior to colectomy. If you had a LGD finding before your colectomy you should have annual scopes regardless of what symptoms you do or do not have.

Thanks. I guess I have to chug another bottle of Magnesium Sulfate in the near future...

I have one more question if you dont mind. The GI wants me to do the lactose breath test as well which would mean 2 weeks off anitbiotics and Pepto. That will make me ill within 2-3 days based on past experience. I read on this forum that this test usually comes up negative even for people that likely have bacterial overgrowth issues. I asked the GI what would happen in the case of a positive or negative test and the GI could not give me a decent answer. In the case of positive I would be referred to a bacteria expert and taken off antibiotics (??), and in the case of a negative test the GI had no idea what to do next. I said that without a clear understanding of what happened after doing the test I would not subject myself to being sick for 2 weeks. Do you think I am being unreasonable?

Hi. My daughter had a stricture at the inlet to her pouch and also an ulcer that bled in the same area. With her she had blockages with her stricture and then she had to have balloon dilations.

As far as the magnesium sulfate goes, she hasn't had to drink that since her colon was taken out. She usually has to have clear liquids 24 hours before. Guess every doctor is different.

I don't know anything about the lactose breath test.

Hope you get some answers. Take care

Most docs don't seem to require Mag Sulfate before pouchoscopy - mine certainly doesn't. It seems like overkill, when you just need to clear out an area so close to the outlet.

My understanding of the lactose breath test is that it's used to diagnose lactose malabsorption. You could always try eliminating lactose from your diet for a couple of weeks to see if that made a difference. When the test is used to asses bacterial overgrowth then lactose generally isn't used - glucose or lactulose are used - and the interpretation is a bit controversial.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856094/
It's wise to consider the cost/benefit tradeoff of any test (including the preparation). If your doctor can't tell you how the results will be used, you may need a smarter doctor. It's okay if the test is only informative in one direction (e.g. if it's positive), but it's not okay if all roads lead to "duh."

I booked the Barium Enema for next thursday. The prep requires liquid diet from the morning of the day before, so 24 hours liquid diet plus a lovely bottle of Magnesium Citrate. Seems like overkill be I will do as I am told.Below is the prep

Half bottle at the most should be all you need, if at all. You may want to call radiology and remind them that you DO NOT have a colon or rectum. Tell them you are equivalent to an ileostomy.

Sounds like you are getting the standard BE prep instructions.

Jan

I compared the instructions that they provided for colon vs no colon, and the only difference is that no colon requires 3 extra 8 oz glasses of water to be drunk - hence includes the Magnesium citrate and dulcolax tablets.
It seems strange to me that I have to fast/liquid diet the day before, considering if I drank the magnesium citrate at 6pm the day before there will be nothing left inside me by 8pm, hence by morning of the exam I will be a empty pipe. I'm thinking perhaps I will have breakfast

Well, no, not exactly an empty pipe, since regardless of whether you eat or not, you continuously produce bile and other digestive juices. I had one goofy GI accuse me of not doing the prep before a scope because I was full of bile. He had me doing the full sigmoidoscopy prep, including an a.m. enema and nothing by mouth, then scoped at 2p.m.! Well, a LOT of bile flowed in those 8 hours, which got thick, due to dehydration.

That said, even though my transit time is about 8 hours, I have had things like mushrooms take days to appear. I guess chunky stuff can get hung up in there.

Jan

quote:

regardless of whether you eat or not, you continuously produce bile and other digestive juices

Indeed, anyone who has had a postoperative ileus and had to have the NG tube inserted knows this only too well. Not only does your body continue to produce bile and digestive juices, it does so in copious quantities. I saw gallons and gallons of it sucked into the collection bowl by the NG tube, this at a time when I was hooked up to an IV and had not had any solid food in a week. To say that you will be an "empty pipe" is quite far from the truth. Hopefully none of you will ever have to have the NG tube which confronts you, front and center, with this biological fact.

I had the post operative ileus but only had to suffer the NG tube for 4 days and 4 nights and no food for 9 days - throughout which I wished I was dead. I've heard some say that this is medically induced torture - I understand. Not something to wish on your worst enemy. Self portrait attached - oh the memories!

BE is Thursday morning so no tucker starts tomorrow morning. Wish me luck.

Good luck with it, kpUSA. Let us know how it goes.

Unfortunately your self portrait reminds me of what I looked like with my NG tube.

OK so I had the BE today. I leaped about a foot off the bed and let out a yelp when they stuck the foley in there....oh the things we have to endure. The quack said he couldn't see anything to be concerned about so that's great news for me. I'll celebrate with mashed spud and a steak tonight....