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Just had barium enema xray...few questions

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Posted 6/5/2014 1:49 AM (GMT 0)
Hi all,

I just had a barium enema x-ray today to check out the j-pouch and ensure no leaks (done rectally). This is the first time I've had this test, and have a few questions about what happened...

Firstly, the radiologist kept saying that she was very surprised I was having this procedure done as I'm only 6 weeks post op. She said they usually do it later, around 4 months. She repeated this so much that it worried me that something was going to be damaged because of the procedure... When did you guys have this test done?

Secondly, when they were emptying the barium liquid from my pouch, lots of blood came out. The technician and the radiologist said that they haven't seen this before and were pretty surprised. Since I have a loop-ileo, I have a lot of rectal discharge throughout the day, and I have never had any blood in there. They seemed surprise by this as well, since the clear barium that went in was quite bloody on the way out. Has this happened to anyone?

Thirdly (and lastly!), when they pulled out the "hose" from my butt (which was done twice as the first time they inserted it, it came out), both times when it came out, there was one spot close to the opening that was EXTREMELY painful. It was awful. I actually cried out because it caught me off guard. Going in it was totally fine, but coming out it was just so incredibly painful in the one spot. I asked if the blood could be coming from that, but they said no because the blood came from draining the pouch. So...my question is, what could this be?! I have a scope with my surgeon in a few weeks and will mention it. I'm definitely not looking forward to that...

Thank you all in advance for your help and guidance!!

Kim 

Posted 6/5/2014 2:12 AM (GMT 0)
I have no idea what the blood could be about. The only thing that comes to my mind is they irritated something up in you with the tube. When I went for my leak test they went thru my stoma and it was totally painless. Sorry that this hurt you so badly. Try not to worry too much about this. Quirky things can happen and it turns out to be nothing. Seems odd that you've never had blood and then they stick a tube up there and then there's blood. Leads me to think its a direct result of the test regardless of what they said.

And don't worry about the six week thing. Many people have takedown in that time frame. I had to wait a little over three months only because I had an abscess develop after my step one and I had to wait until it was all healed up. Your surgeon knows what's best for you. Having said that, if you don't feel comfortable, you can always put it off.
Posted 6/5/2014 1:19 PM (GMT 0)
Hi Marianne - thank you so much for the reply! I asked the radiologist if the tube could have irritated things, and she was pretty certain that it didn't since they used a "baby" soft tube...but what else could it be? Seems strange if there are no leaks, and no blood has come out before, that it has to be something like that. Interesting enough, post-procedure, I still haven't had any blood. I have a scope on June 23 with my surgeon - curious what he'll see!

I won't be able to have the takedown surgery until the fall. I'm in Canada - OR time is precious over here! My surgeon said that during the summer they don't perform any elective surgeries due to "summer slowdown" (only emergencies and cancer), then there tends to be a backlog in the fall. Luckily, he said the reversal should only take 30-45 min, so I should be able to get in fairly quickly. I met a woman who had her ileostomy without j-pouch construction first, and then had to wait over a year for her next surgery since it was 4+ hours and considered elective. I'm lucky that I'll be able to get in more quickly due to the short surgery time.

Anyway - fingers crossed that everything is good! Between the blood and the pain in the one spot, I'm just a little weary, but could also be because it's still pretty new!
Posted 6/5/2014 2:50 PM (GMT 0)
I had my done a few days ago at the 10 week mark. Right after the scan I went upstairs and had pre-op visit with my surgeon for my take-down scheduled at the end of June.

I found that the doctors in the radiology department know very little about J-pouches, they had to do mine 3 times that morning because they couldn't see the dye clear enough and they thought that I had issues with the lower part of my pouch at the exit because it was so narrow. They even brought the Chief of the Radiology Department in to do the 3rd enema and scan. The radiology doctors kept telling me that my pouch didn't develop properly and maybe their was scar tissue near the exit and I wouldn't be able to use my pouch.

I went upstairs, saw the Surgeon and he asked me a few questions about the color discharge that I had, he stuck his finger in my rectum and felt around. He said that the bottom of my pouch hasn't stretched yet because nothing was going through it to help stretch it (like stool) so during my take-down he will balloon it to stretch my pouch in the area that it need to....no big deal.

I also had a scan at my 2 week mark because they were considering doing the take-down then because of dehydration issues that they couldn't control. That enema scan was the most painful experience of my life, the inside of my pouch was still healing and I could feel everything....they eventually had to stop because of my pain. So I could imagine at your scan at 6 week that it could still be slightly painful in certain area. My scan at 10 weeks was just uncomfortable like lots of pressure but no pain.
Posted 6/5/2014 3:37 PM (GMT 0)
Oh I see, I thought they wanted you to have your reversal now...it was just the test.

I tend to agree with ks1905 that radiologists really don't know enough about this to say the blood was definitely coming from your pouch. I would bet money the bleeding was from the test itself. Come back and let us know what your surgeon says when you go on the 23rd.

And yes, the takedown procedure itself is real quick in the OR. I was in and out in 30 minutes. I remember being really surprised about that because I thought it would take longer.
Posted 6/23/2014 9:53 PM (GMT 0)
Just posting a follow up to this post...

I had a scope this morning by my surgeon to check out the jpouch. I told him about the painful xray experience as well as the blood that came out when they drained the barium... he was concerned about that. He said it shouldn't have hurt and there shouldn't have been blood.

He did a rectal exam, and went very very slow...upon doing so, once he got to the same spot where it hurt during the xray, it was incredibly painful again. He found a fissure. Initially my scope was supposed to be un-sedated, but upon finding this fissure and how much pain came from it, he left his finger there (any movement was SO painful...this was a tad awkward!!) and they gave me painkillers and a very light sedative. He asked me how long I've had this for...I have no idea! I never had that kind of localized pain with UC and also hadn't had formed bowel movements for months prior to my surgery. He concluded that it must have happened from the enema xray. He also said that he found a stricture (strictures? a little fuzzy on what he said about that...) But I'm assuming (upon googling) that he will stretch that out during my reversal.

I meet with him on July 9 to go over all results and discuss the reversal.

Has anyone else had this issue? Do fissures go away on their own? I can't believe how painful both were (xray and exam today)...I hope it's gone before I start having bowel movements after the reversal! My reversal won't be until the fall - so lots of time to heal, hopefully!

Anyway - thanks for all of your help!

Posted 6/23/2014 10:31 PM (GMT 0)
Glad you got an answer. Gee, thank those radiologists, huh?! I'm sure that fissure will heal up. You still have quite a while until takedown. I had a stricture too....it's pretty common...it's just scar tissue that needs to be stretched. Sometimes it takes more than one dilation. I had 5 total. Keep us posted!
Posted 6/24/2014 12:39 AM (GMT 0)
Barium Enema was THE WORST procedure I've ever had in my life.
I had it instead of an MRI to confirm my UC was pancolitis, because during colonoscopy they hit a stricture and couldn't get through all the way.

WOW.

Absolutely worst procedure ever for a person with inflammation. It hurt. I screamed. It was just terrible.
And the xray ladies felt so bad... but the doctor... ha! I didn't even SEE HIS FACE... he just came in and pressed the button to fill me up, listened to me scream. Did the first picture. And left.

I didn't have insurance so they thought an MRI would be too expensive... I wouldnt have cared.
That was hell!
Posted 6/26/2014 12:30 AM (GMT 0)
Katie - wow. I'm so sorry to hear! That sounds awful. Luckily I wasn't flaring during the barium enema (no colon now!) but have only had scopes while in flares. They sedated me for all except for 1 (a sigmoid partial scope)...and WOW worst thing ever. It was awful. I can't even begin to imagine how terrible the barium enema would have been with pancolitis!! Yikes...
Posted 6/27/2014 5:32 AM (GMT 0)
sounds like a stricture. its common. and PAINFUL. it can be opened up in surgery
Posted 6/27/2014 12:05 PM (GMT 0)
I had a fissure about four months after my takedown and while it hurt like hell (and was exacerbated by a careless rectal exam from a surgeon who was covering for my doctor over the holidays), it really did heal and go away completely. It sounds like yours was probably caused by the enema being forced past your stricture... very unfortunate but the good news is that it should heal nicely since you aren't reversed yet.
Posted 6/28/2014 1:10 AM (GMT 0)
Thanks for the info, Liz! I'm likely not having my reversal until the fall, so plenty of time to heal! (phew!)

Can a stricture be anywhere? Or is it usually further or lower down? I'm sorry, I hadn't even heard of a stricture or fissure until this week! Is it strange that I had no pain at all when the enema went in (both times), but it hurt like hell coming out (both times)?

Thanks!
Kim
Posted 6/28/2014 10:49 AM (GMT 0)
Yes, a stricture can be anywhere but most commonly is at the anastomosis site.
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