Double Balloon Enteroscopy

[Ribo]

Curious is anyone has had this done and can talk a little about the experience and the results.

My GI has referred me to a specialist to do this so they can get a full look at my small bowel and evaluate the damage as well as (hopefully) determine the causes of the multiple small bowel obstructions I've had over the past 15 or so months.

They ruled out the capsule endoscopy, reason being it is contraindicated given my history of SBOs. The concern is it will just get stuck and then require emergency surgery to remove the capsule.

So I have my procedure scheduled for July 10th. I'm wondering about things like:
Length of procedure (how long did yours take? The are estimating 3 hours for mine, apparently so they can run all the way from anus to stomach)
What Direction (meaning: from the mouth side or rectum side)?
Anesthesia (Sedated or General)
Results (did it help?)
Recovery (Any complications? I had a hell of a time after my last colonoscopy)

Thanks in advance!

 

[Trysha]

Hi Ribo
Sorry I cannot help personally since I have not had this procedure (yet) everything else
but---!
There is a good animated presentation of the procedure on the web----the address is
DBEanimation.wmx or
doubleballoonenteroscopy.com
Hope this is helpful.
There will be others on the forum who will be along shortly, I am sure to relate their experiences.
Feel better soon
Hugs and best wishes
trysha

 

[littlemissh]

I was supposed to have one of these 2 weeks ago and chickened out. I have symptoms of obstruction and major small bowel bleeds. I have agreed to have it done if I get any further bleeding on double humira.
I was told it would be oral, though they may also go rectally if they couldn't get to the end of the small bowel orally.

Mine was to be 3 hours, and a GA.

 

[Jennifer]

I've never had this test before and this is actually the first time I've heard of it. http://www.ncbi.nlm.nih.gov/pubmed/14648408 None of my doctors over the decades have ever mentioned it. My guess is that may be because its a relatively newer procedure, may very well require someone skilled to do the procedure (I haven't looked up information on where the procedure is done to see if it requires a specialty clinic) and my guess is that its also because there are many other procedures that can be used like a CT scan, MRI etc to see inside the small bowel. So the less invasive, the better. Yet this procedure allows for biopsies and for fixing certain things inside without the need for surgery (especially if all other tests don't show the cause of the symptoms). I would definitely consider doing this procedure myself if the need ever arose.

Here's information on possible complications: http://www.ncbi.nlm.nih.gov/pubmed/18322881

Unfortunately it seems that there isn't much info on it here on the forum, here's the forum wiki page about it: http://www.crohnsforum.com/wiki/Double-Balloon-Endoscopy

Here's a video about what they can do during this procedure: http://www.youtube.com/watch?v=TI_nHyqUUiQ

Let us know how the procedure goes.

 

[littlemissh]

It is very specialised. Only 2 places in the UK do it I had been told by my gastro -St Marks London and Sheffield.

Here is a link to the unit I was at which has a patient leaflet link

http://www.wolfsonendoscopy.org.uk/double-balloon-enteroscopy.html

 

[PVail]

Hi .
My cousin i n Spain has this done yearly . he was diagnosed with Crohn's ten years ago and his consultant recommended it . His small bowel almost closes near the TI for a couple of inches so he has this proceedure carried out . He says its more or less the same as a colonoscopy without all the pushing and pulling once its in place . Then he just has to lay there for an hour or so . He has found this a very good and for him it is preventing surgery at this point.

Good luck.
Peter

 

[Ribo]

Thanks folks. I appreciate the links - I had found some of them but certainly not all.

As I understand it, this is a somewhat specialized procedure and I know it requires specific equipment. My regular Gastro referred to it as a 'fifty foot scope,' which I'm not sure that makes me more comfortable to be honest.

Given the length of the procedure and apparent complexity, I'm really hoping they just put me all the way under general anesthesia. I'm admittedly a bit of a wimp when it comes to a procedure like this and based on all the reading I've been doing, I want to be really knocked out with no chance of fighting it at all.

I'll be sure to post about the experience as well as outcome in a couple of weeks.

 

[Jennifer]

Everything I've read mentioned putting patients under general anesthesia. If you're concerned though before to ask about it well beforehand (but I'm sure you know that and are planning on it already). Hope it goes well!

 

[Ribo]

Well, it's prep day for this procedure. Liquids started this morning, starting Mirilax at 4 and then dulce lax at 8. Prep should be fairly straightforward this time since that's all the prep they have me doing, no Suprep or Half Lytely thank goodness.

Procedure is scheduled for tomorrow, at 1:00 pm. No eating or drinking day of the procedure, which I am guessing means I'll be we'll on my way to dehydration by the time they drop the line in. Seems like a long time to go without anything to drink, but I'm guessing that's due to the anesthesia.

I have to admit this one has me a bit more nervous than previous procedures. One big reason is the problems i had after the last colonoscopy, I'm a little worried I'll find myself dealing with the same pain level again. The docs office did say they may just consider keeping me overnight for observation given these previous problems.

In general the thought of pain doesn't worry me that much anymore. I've come to grips with managing it as best I can and admitting when I can't and going to the hospital so they can manage it for me, so it's a little weird for me to be worrying about pain. Maybe the last one is still too fresh in my mind.

Then, Three hours of scoping seems like a long time to me. Admittedly my plan is to try and relax and just get some rest as the time approaches, but finding a way to fill the morning tomorrow and keep my mind off it will be a challenge. Thank goodness for Netflix, I suppose.

Wanted to thank everyone who posted information, links, and support on this thread. More information is always a good thing to me, and at this point I think I've gathered about all the information I can handle.

Wish me luck!

 

[littlemissh]

Good luck, hope it goes smoothly and you don't need to stay overnight.

 

[Ribo]

Well, sitting here in the hospital waiting for them to start. Running at least 90 minutes behind due to a complication with a patient ahead of me.

So I can sit he and wait for my procedure with a line in. At least they're running fluids now so I'm less dehydrated and my headache is getting a bit better. Still nervous though.

They'll be using heavy sedation and painkillers, but not a true general, at least that's the plan. Spoke to the Anesthesiologist already and he assured me I would be completely out for the procedure but did not anticipate intubating me.

Anyhow, I get to sit here, wait to start, and worry. Hopefully they'll get things rolling shortly. Sooner started means sooner done.

 

[Ribo]

Last bit of feedback. Lots of worrying about nothing, as this experience was much smoother than the last regular colonoscopy, other than the delays.

Basically they wheeled me into the procedure room and hooked up a couple of lines for the anesthesia as well as oxygen and monitors. Them I lay there for another 45 minutes chatting with the nurse anesthetist and procedure nurse as the doc was dealing with a complexity in his previous procedure. I reminded her I wanted to be fully out from the start and she laughed.

Eventually they for the word and the anesthesiologist came back in for one more check on me. Then the NA started a slow run of propofol (pretty sure anyhow). She said she was going to run it in slowly since we still were waiting for doc to actually arrive. There was a burning sensation running up my arm which she said was caused by the PH difference, so she injected some lidocaine to take care of that. Things got a little swirly but I was still well awake as they started adjusting my position and attaching other monitors and guides, I guess.

I chatted with the NA some more, pointing out the slow approach was not getting me out quite right away, and she said something like 'don't worry, I'm doing it via slow drip since we're waiting for Se. Has an, but I've for the hammer here if we need it' and held up another syringe. Funny gal, really nice and helped to put me at ease.

Of course, next thing I know they're wheeling me into the recovery room. Same NA says something to me like 'well, I did end up using the hammer' which I thought was funny. Apparently from her conversation with the other nurse they put me under deeper as they got started because I wasn't sedated deeply enough for comfort.

Upside is they ran through maybe ten feed of small bowel. Downside is no inflammation. Took a bunch of biopsies, so now awaiting results on those. The doc's best guess, since there was inflammation during the regular scope in May, is that the Prednisone is working and has reduced the inflammation significantly.

So again a waiting game. Still a tentative Crohn's diagnosis, and clearly the Pred is helping, but who wants to stay on Pred? That's not a long-term solution so far as I am aware.

Bottom line on the rDBE : prep was again the worst part, and even that wasn't so bad as it was all over the counter laxative. One bad thing: later procedure meant I was dehydrated by the time they were running the IV in, so that proved to be a little more challenging than normal. Plus I was starved by the time we were headed home, as I hadn't eaten in about twenty hours by them.

 

[Jennifer]

Glad the procedure went well. Just sounds like a really long scope day. Hopefully the biopsies will give you some answers. Keep us posted on those results.

 

[Ribo]

Well, quick update on my results. All biopsies negative, inflammation was down, basically nothing interesting.

Docs are assuming this was result of prednisone, which has helped immensely but also leaves my pudgy, hungry, gaining weight, unable to sleep, and in a constant state of perspiration and night sweats. All expected according to the GI.

The good news is I'm now tapering slowly down on the Pred - reducing from 40mg per day to zero over the next six weeks. At that point I'll be starting Remicade infusions. My concern is I get back into an active flare as I taper, but guess that's just something I'll have to deal with if it comes.

Overall a little frustrating as the GI acknowledges that CD is a little iffy diagnosis given this result, and the negative Prometheus test, but still working under the assumption that its accurate based on the previous inflammation events, previous biopsy, and history of SBOs and pain history.

Anyway, just wanted to sort of close this out. I'll probably start bugging people about Regicide experiences soon