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Crohn's Disease Forum » Parents of Kids with IBD » Update on pain and MRI/Prometheus results : (


06-20-2013, 08:45 PM   #1
jaems
 
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Update on pain and MRI/Prometheus results : (

I'm so sorry that I haven't replied to y'all sooner, but it's been a busy couple of days. First of the initial MRI results: small bowel was normal. Yay! Except, the MRI tech didn't report on the rectum area. After I called the Dr about my daughter's pain, the Dr called the MRI tech back and asked him to double check the images and look at the rectum area. Yep, turns out her abscess (from April) has returned! Good grief! How do you miss that the first time?! Especially, when it was asked to looked specifically at that area.

Anyway, now she has an emergency procedure scheduled for the morning to drain the abscess and to have a pigtail drain (what the hell is this?) placed for around two weeks.

Now, the prometheus test. Is it any surprise that it came back negative for any IBD. Seriously. Even though the endoscopy and the colonoscopy showed inflammation in the terminal ileum and the rectum. Frustrating.

That's what we've been dealing with today. We were suppose to leave for Tennessee tomorrow, but I guess we'll be staying put.
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Jaems

--15 year old daughter with no true dx
--Hospitalized with an rectal abscess in 4/13
--Upper Endo and Colonoscopy in 5/13, 5 biopsies indicating excess bile in her stomach, inflammation in the terminal ileum and the rectum.

Current Meds:
-Azathioprine 50mg x 2
-Asacol 400mg x 12
-Budesonide (Entocort EC) 3MG x 3
-Nexium 40mg
-Zofran when needed

Current Supp:
-Fish Oil
-Daily Multi with added energy
-Probiotic
-5000mg of B-12

Failed Meds:
-Canasa Suppository 1000mg
06-20-2013, 10:42 PM   #2
DustyKat
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Oh my jaems...

Matt had a pigtail drain for his intra abdominal abscess. It is a type of percutaneous (means puncturing the skin to gain access to an organ, tissue or abscess) drain that is inserted into the abscess and left there to ensure the abscess remains drained.

It looks like much like a urinary catheter that has a wire in it. The drain is normally inserted in X-Ray via a CT scan using local anaesthetic. The reason it called a pigtail is once the drain is positioned they pull the wire and the end of the drain curls, looking much like a pigs tail...



...as you can see by the image, by doing this it allows the drain to occupy more of the abscess space and so effectively drain the abscess. It may be attached to the skin by a suture.

Assuming it is used the same way as my son's it will be attached to a leg bag, like they use for urine, to catch the drainage and in Matt's case I had to flush and dress it twice a day but that is not to say you will be required to do that. Matt's abscess had a fistula to the bowel and had to stay in for three months.

Thinking of you,
Dusty. xxx
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06-20-2013, 10:51 PM   #3
jaems
 
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Dusty,

That was so helpful! Her abscess is a perianal abscess, so I'm not sure how that will differ. The last time she had her drain (while in the hospital), she was in a lot of pain. The drain went in completely different than I had thought. I thought it was going to go in through her rectum, like the hole, but they actually went in about an inch above her bum hole. Between that and her tailbone. It makes my stomach turn thinking about it.

Were y'all able to travel or do anything with the drain in?

Thank you again for the reply and the information! All this has been thrown to me since 4:00 this afternoon.
06-20-2013, 10:55 PM   #4
ChampsMom
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Regarding the good news - Yeah!!!
Regarding the Ugh news - sorry!! Hope everything goes well with the procedure!
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Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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06-20-2013, 11:03 PM   #5
DustyKat
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I'm not sure how it will differ either jaems.

Matt was pretty unwell and had lost a lot of condition when he had his inserted, the three months it was in was the lead up to surgery. He was in hospital the first three weeks it was in but once we were home, we flew home, he went to school and university and was able to drive but it was located in the lower right quadrant of his abdomen so sitting did not affect him.

He was uncomfortable when he first came back to ward after its insertion but the draining of the abscess and keeping it that way, plus antibiotics, pretty much kept the pain at bay for the duration.

If she does have a bag, Matt use to strap it to his thigh and fold the bag up so you couldn't see it under his shorts. It was Summer here when he had it in, so the same for you there now.

Dusty. xxx
06-20-2013, 11:08 PM   #6
jaems
 
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Dusty,

If you don't mind me asking, what kind of surgery did your son have? I am so scared about what tomorrow will bring. It's comforting "knowing" someone else who has gone through this. If you don't mind, I may be picking your brain some after tomorrow.
06-20-2013, 11:17 PM   #7
DustyKat
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Pick away!

Matt had a ileocaecal resection, so 20cms at the end of his small and 8cm at the start of his large bowel. My daughter has the same but hers was more extensive than Matt's.

I know how hard it is to contemplate your daughter going through this hun. It will be only okay mum, truly it will and we are all just a tap of the keyboard away.

Now I am quite sure you have a million things to do but if you do a have quiet moment and would like a little light reading, , this is Matt's novel!...

http://www.crohnsforum.com/showthread.php?t=14388

Dusty. xxx
06-21-2013, 04:03 PM   #8
DustyKat
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How are things going jaems?

Dusty. xxx
06-21-2013, 04:19 PM   #9
jaems
 
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Dusty,

They went in and aspirated 20cc's of pus. Not much, but it's because we caught it early. They decided to not place the pigtail drain in. He felt confident enough that he'd get all the fluid then put her on antibiotics (Cypro?) Now, we pray it doesn't return AGAIN. I'm not feeling confident about that, but I'm just going to take it one day at a time.

You are so sweet and thoughtful. Thank you for checking in on my baby girl. It means a lot.
06-21-2013, 04:36 PM   #10
DustyKat
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I hope it doesn't return too jaems. And I agree! Play it be ear for now. Good luck!

Yes, it would be Ciprofloxacin. One of the two common antibiotics used for Crohn's, the other being Flagyl (Metronidazole).

So does this mean Tennessee is still on?

Dusty. xxx
06-21-2013, 06:44 PM   #11
Crohn's Mom
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Hi jaems

I'm glad the procedure went well and no drain was needed.

Just sending some well wishes that all continues in the right direction!

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and Austin (18)
DX: Crohn's 7/2013
06-21-2013, 09:12 PM   #12
jaems
 
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Thanks guys!

We're home and she's resting. Her bum is starting to get a little sore, but that's the only complaint. We ARE going to Tennessee, but we're waiting a week. This way she has time to heal, the antibiotics to kick in, and to get the cultures back.

Thanks again for the well wishes and the concern. : )
06-21-2013, 09:15 PM   #13
DustyKat
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Thanks for update jaems.

I hope the meds do the trick and all heals beautifully. Have a safe and fab trip!

Good luck and keep us posted.

Dusty. xxx
06-21-2013, 09:29 PM   #14
Dexky
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Are you all from TN Jaems? Where?
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06-21-2013, 09:34 PM   #15
jaems
 
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Dexky,

We are. We're from Memphis. My husband flies for the Air Force, so we're stationed in Utah.
06-21-2013, 09:37 PM   #16
Dexky
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Great town! Long way from BG Ky though! Our GI is at Vandy. Hope the ab's kick in and she can travel in comfort! Good luck!
06-21-2013, 11:34 PM   #17
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Glad to hear Prometheus was negative. Worst test I have ever taken... because government insurance does not pay for it. They call it experimental... well it diagnosed me accurately with crohns and the VA's colonoscopy also confirmed the findings. My biggest concern is come November for my PHA. I just hope everything is in remission by then. Med boards suck and so do IBDs.
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