Nightmare at NYU

Terrible, last month i was at NYU ER for dehydration, you would think they would have a clue since they have and IBD clinic down the block.

What is your doctor saying about your issue? Is your doctor at the IBD clinic?
that’s where my doctors are and they are excellent.
hope you get some relief soon

Among the most critical things is to stay hydrated. Are you able to drink enough fluids to keep your urine light-colored? Have you considered getting a catheter and a big syringe to enable you to irrigate the pouch (squirt in fluid and draw it back out)? I know you struggled a bit with the enema, but it seemed like you were eventually able to insert it fully, right?

@ytcrockpot I don't currently have a GI, which is causing quite an issue at this point. I do have an appointment on the books with info of their docs, just not until mid October.  Can't wait that long.

@Scott F I've been liquid only since Sunday.  Not that I'm drinking tons, but more than usual. Urine is usually pretty much towards the clear. 

I did manage the enema a few times, despite my uneasiness.  Not sure about the irrigation.  Things tend to be very painful down there during/after a BM... Not sure if I should attempt anything more at this point.

Would CT scan show an outlet stricture or twisted/prolapsed pouch?  I wouldn't think so, but they insisted otherwise.  Also, I had elevated levels of C protein, and sed rate.

A CT scan would show a complete bowel obstruction, since the bowel would dilate behind it, but would miss most partial obstructions - enough to make you miserable but not cause dehydration or bowel rupture. It wouldn't show a prolapse or a pouch twist or outlet stricture, unless one of these managed to cause a complete obstruction.

I'm sorry you had that experience at the ED. When you wrote that you had gone I was pretty pessimistic. I hope you're still calling periodically about appointment openings. Have you tried to get in to see Dr. Bo Shen up at Columbia?

@KennyJG44,

Sorry you're dealing with what is a miserable situation.  I am just coming through something similar including a bad ER visit and posted about it under another thread.  After the acute episode during which I was more or less fully obstructed at around the stoma scar site,  where I do have some stricture, I went 4 days on clear liquids  without passing stool.  My local GI returned from vacation and suggested Miralax, which he called  " the gentlest laxative known to man."  It did the trick.  

I agree with Scott about getting in to see Dr. Shen.  

I'm so nervous taking a laxative, because I fear if there is not an actual obstruction (and instead it is anatomical), that I'll just feel that much worse! Just the unfamiliar pain that I am getting when attempting a BM is paralyzing me enough to not try much else.

I do have an appointment with Dr. Shen, just happens to be Oct 24th.  I was going to call today, but called NYU's IBD (as directed in the ER yesterday) but was met with more resistance.  Incredibly, I finally got in touch with a clinical team member and then a PA - might just be some hope for me yet.  Waiting a call back from scheduling.

After an afternoon on the phone, I was able to get NYU to schedule me on 9/1. It's still 2 weeks out and with a newer doc, but it's a start.  I also called Mt. Sinai.  They told me the only GI that looks at pouches was Dr. Greenwald, which I find odd, and never heard of him.  Soonest there is 8/30.  I'll make some more calls tomorrow.

In order to not suffer while I wait, looking to anything else that might help. Any chance antibiotics might help? I have Docy, Aug, and Clinda on hand.  And a few muscle relaxers, but only skeletal.

My only other thought was to attempt a self dilation if, in fact, I'm strictured.  @Scott F or others have any advice (or experience) doing so?  Just so desperate!

I can’t recommend a self dilation without 1) a known stricture, 2) previously dilated to a known diameter, and 3) some basic instruction in self-dilation.

Antibiotics might slow down your output, which clearly isn’t what you want.

I wish I could be more encouraging. I’m glad you found an earlier appointment.

Thanks @Scott F - was worth a shot!  I actually caved a bit and took an appointment with Dr. Legnani on Monday (8/22) - I know he isn't part of the big IBD centers in NYC, but he has great reviews here and was also recommended to me by my surgeon a while back.  Hoping for the best!

Kenny, did you try to use a catheter to emty, either with or without injecting water?

I found a post here in the forum with a problem that sounded similar:

https://www.j-pouch.org/topic/...on-catheter-emptying

Of course your trouble may have a completely different reason, but it shows that such problems can be difficult to identify. Even CT scans may not be able to show the problem in case of twists or a prolapse of the pouch. At least it should clarify how far down there are distended portions of the bowel and if the pouch itself is likely to be blamed.

If you have a prolapse you might be able to push the "valve" open by a catheter and empty that way.

If everything fails, a surgery would help to get things straight and avoid suffering for much longer.

Hope you get better soon.

Hey @SteveG - thanks for the advice.

I have not (yet) tried the catheter / irrigation technique.  It was suggested on another thread, elsewhere, but I have such anxiety doing the simple enema, that I dont know if I'd be able to manage the tube.  In any event, what do you mean by "push the valve" open? 

I tried to argue with the ER docs the other day about how the CT scans don't usually show what I'm thinking is going on, but they wouldn't hear it.  Right now, I'm in so much pain during and after BMs (and general discomfort otherwise), I don't think anyone is putting anything up that way unless I'm under anesthesia. 

Certainly not hoping for surgery!!  See what happens on Monday and go from there - thanks, as always, for the advice and positive thoughts!

Kenny, I thought if the pouch outlet is blocked in any way you might push it open by inserting a catheter.

Even with a possible stricture??  Or are you thinking more along the lines of a fold or twist?

A prolapse would be held open with a catheter - they can otherwise close up when pushing.

Yes, I thought in case of a prolapse. You can try with a finger if your anal canal and pouch outlet are wide enough to use a catheter if you are worried to hurt yourself.

Spoke with Dr. Legnani today via telehealth - was the best experience I've had over the course of this rough spot.  He is extremely knowledgeable and 100% on the same page as myself.  He agreed that I needed to be scoped (couldn't believe I hadn't been already) and squeezed me in Thursday.

Fingers crossed!

Great news, good luck with the scope!

NYU has a site where you can read their medical notes called MyChart.I suggest you  read their findings and who you actually saw. .I am happy you have found a MD who took the time to help you.

I have read my chart and saw how information was written on me as an in patient and was totally wrong by a nurse.A resident was also rude when I question medication I would discharged  on.

My Surgeon was Highly professional,knowledgeable and wonderful person.I thank him for his professional medical care.

Operating area was great professionalism also.

But I had a RUDE nurse who should go back to school 

You should write to the Head of The gastroenterology dept.

Let the know how you were treated and file a complaint with state and joint commission You can also let your insurance company know

Good lock

Cassiecass

@KennyJG44 I was hoping you could give us an update of what happened when you finally got a scope?

Hi @SadieM1210 -

Apologies - probably published results on another thread.

Scope showed moderate pouchitis, which I've had in the past.  But more importantly, showed an acute cuffitis, which I've never had in my 20 years since surgery.  Definitely gave me a new set of symptoms.

Flagyl helped clear that up - though I feel like I"m still dealing with residual inflammation of pouch/cuff.

Good to know that you finally got answers.  Do you have a new GI doc now? That would be of great help to you in the future.

Hi Kenny,

I’m so sorry you’ve been dealing with this, and the lousy care in the ER (which is not uncommon—they can treat heart attacks and strokes, but this stuff is kind of specialized.)

Cuffitis sucks. I had it for four and a half years, finally had a pouch revision that got rid of that tissue so that I didn’t get cancer—but that injured my internal sphincter, which is no fun to live with. I couldn’t get the suppositories in that they wanted me to treat with, it was so inflamed when I had cuffitis. Hopefully on the right meds, they have you feeling much better, and now that you have a doc, you call them instead of going to the ER when you have an issue—so much better that way.

Just know that cuffitis is a problem because it’s the native rectal tissue that didn’t get removed (to help preserve sphincter function and to allow stapling of your j-pouch). It is vulnerable to cancer from repeated bouts of inflammation, if your body is attacking it frequently. If it hasn’t been an issue before, you’re probably in good shape. If it becomes one more often, they may advise you to have it excised, which is tricky, but will mean it can’t turn into a site of cancer.

I always thought it was spurious logic that the body would just ‘forget’ the bit of leftover rectal tissue that didn’t get excised in a colectomy for UC—why would it be able to hide from the immune system? But it does for so many, even if it didn’t for me. Good luck!