Best test to figure out what's going on down there?!??

MaryMomof3Member

So here's the deal: I am a nurse -a GI one no less- but I am new to all this j pouch stuff. & desperately need your advice.
I had an emergency colectomy, loop ileostomy, & j pouch formation 7/15/14. Until 3 weeks ago, I dealt with fairly frequent episodes of incontinence of mucous (occasionally odor- usually not) from my healing j pouch- accompanied with debilitating pain from evening to early morning. Then- it all went away for 9 days. I was in heaven!!!
Last Wed my surgeon did a flex sig and finished removing a stricture I had. Since then I have had incredible pain & non stop leakage of light brown foul (stool) smelling discharge. The pain is a constant throb- lower back & right buttock- with breakthrough spasms that bring me to my knees & last a minute or two. I am on cipro- have been 6 days. So, if this is an infection, it's not working.
What does this sound like to you? Should I get a CT or would another test be more conclusive? Please advise!!!!!

10/16/1410:07 PM

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rachelravenMember

I don't know. I know I had a small abscess then fistula that CT didn't even see, but an MRI did.

If it's an abscess, oral abx therapy cannot cross the walled off area, so they're nearly worthless in that case.

I'd definitely call your physician, but if it gets worse, or you get a fever, head to the ED.

10/17/147:57 PM

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Jan DollarModerator, RN, retired

Ditto what Rachel said.

I had throbbing red-hot-poker-up-the-butt pain, with urgency and a low grade fever for weeks. Eventually, I spiked a 104 fever and that really got my and my surgeon's attention. Six hours and a CT later I was in interventional radiology having percutaneous drainage of a presacral abscess. They drained over 500cc. Spent another 12 days in the hospital for it. Lucky me- no fistula!

Jan

10/17/149:09 PM

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MaryMomof3Member

I went to the ER & they did a CT which showed nothing- no abcess or fluid. This morning at 3 am awaken again with searing pain in my back & having difficulty urinating. Lying on. A heating pad in agony while I wait for pain
Meds to kick in. My pouch continues to leak foul smelling liquid & when it does/ the pain makes me want to vomit- the motion of the pouch releasing the liquid. What's going on? Do you think it's a pinched nerve? I am in so much pain. Yesterday at the park it hit me & I had to half crawl to my car with all 3 children 5 & under. I asked the ER to consider a MRI but they just did the CT. What should I do? I can't live like this!

10/18/143:34 AM

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Scott FMember

It will probably work better to think of possible causes than to suggest particular tests. I don't know what you've got, but foul-smelling output sounds like a clue. Do you have an appointment with a GI? The ER is not very good at diagnosing pouch-related problems.

10/18/148:40 AM

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MaryMomof3Member

Scott- hi

. I agree and I have been thinking very critically trying to figure out what's going on- which led me to realize an MRI will probably be the most helpful test. Here's my line of thinking: the 2 times I developed this pain I was in a supine position & completely sedated- so it must irritate a nerve in my spine ....the pain I have is in my buttocks consistent with radiating/referred nerve pain...the pain has been sporadic & lately when it hits It causes me to almost crawl instead of being able to walk....& at times it's even difficult to urinate because of the pain....

10/18/149:08 AM

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Jan DollarModerator, RN, retired

Yeah, this is starting to sound like lumbosacral nerve root impingement. I have cervical stenosis that was diagnosed by MRI. I had to be referred to spine doctor (physiatrist) before it was diagnosed. This was after useless PT and ortho referrals. Still, no cure. Just need to avoid looking up for more than a few seconds. Not the greatest news, but I can live with it. Great excuse for not having to paint the ceiling!

Jan

10/18/1412:13 PM

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MaryMomof3Member

Jan- thanks for weighing in. Yes- I am thrilled that I think I finally have an answer! Just praying my pcp will order an MRI for me when I f/u like the ER suggested. I was thinking critically about the whole situation today & I had such an "ah ha" moment: after surgery in July I only had pain from about 5 pm-9 am. No one could tell me why . It was the big mystery. I real
ize now it was probably the nerve issue BUT I was still on a high dose of oral steroids which I would take every morning around 8 am...hence no pain in the daytime! Then after this last flex sig I began to have this horrible pain & spasms ALL DAY not just at night...but guess what? I am no longer on steroids which would explain why I am feeling it so bad!
It also hurts when my pouch fills up a little... & then subsides when my pouch releases. Think my pouch is pressing on the nerve ???

10/18/147:41 PM

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PluotMember

If it is a nerve impingement, your surgeon might be able to temporarily treat it (and empirically confirm the source of the issue) with an injection of a local anesthetic. I've never personally seen this done for a j-pouch issue but it's common in other parts of the body.

10/21/1412:39 PM

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