What tests could help other than SBFT??

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lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/10/2009 6:01 AM (GMT -7)   
Hi there,
 
OK so with this random lump still appearing by my hip when I need a BM and the fact that a couple of nurses have said in the past it sounds like I could have strictures I've decided that when I see my GI I'm going to ask him to check it out.
 
Now the problem is I had SBFT in 2003 and it was the MOST traumatic hospital of my life, to the point where I couldn't even talk about it for a few weeks after as I'd start panicking, I don't know if its related to the age I was or how ill I was but even looking back now I kind of freak a bit (I've since developed a mild panicky thing in hospitals - over Christmas I had 2 panic attacks in front of doctors, now what a way to get them to take you seriously.....not)
 
I have had no tests done since the SBFT except bloodwork (well was in remission for 5 years bar a month so I was happy to be left alone to live life!) and think its about time we got a true picture of whats going on in there as who knows what mischief the Crohn's has been up to for the last 6 years!! I don't absorb fat, I get thin/string-like poo (on the very rare day its solid) so I'm guessing there is some damage/activity in there somewhere especially now this lump has appeared (very good indicator of when I need a BM though - oh I can feel a lump, time to find a toilet!)
 
I was just wondering what ways can they get a good look at the whole system as my original stricture symtpoms suggested it was high up but also have this low down/almost at the groin lump BUT I really really do not think I'd be able to force myself to do a SBFT again, even now its making me feel dodgy, are other things like CT scans and ultasounds as reliable? I see on here some people saying that there scans showed nothing? Are there other ways to see whats going on?

patientspiders
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Date Joined Jul 2005
Total Posts : 733
   Posted 2/10/2009 6:23 AM (GMT -7)   
No matter what wicked tests my doc orders, he always orders a CT scan. My lab reports from CT's always come back "no abscess or fistulas seen", so I'm assuming that is one of the primary things a CT would show. I think CT's can show inflammation to a point, but like any other test - all heck could be hitting the fan and the CT can still look just peachy. I would definitely get a CT, but don't expect dramatic results...if any.

I totally understand how horrible a SBFT is... one of my worst experiences too. I would MUCH rather have a colonoscopy, simply because I have always had general anesthesia for a colonoscopy, so I don't have to be awake and freaking out the whole time. I know some people on here get scoped while awake, but such a thing is NOT possible for me.

I'm sorry you're going through this, but congrats on how well you've been doing up UNTIL now... sounds like you had a really good run there! Good luck getting a peak at what's going on in your gut, and I hope you get to feeling better soon!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 2/10/2009 6:32 AM (GMT -7)   
A colonoscopy sounds like your best bet. I'm sorry you had such a hard time with the SBFT, I've done it 2 times and my son once, we didn't have any problems. (I had a stricture at the time). I just wanted to throw out there something about CT scans. I had one right before I had surgery, my stricture was really bad, and the CT didn't show any fistulas. Once they opened me up, they found a mess. So CT's don't show everything! My surgeon was surprised by what he found!
diagnosed w/Crohn's 11/06. 35f with 2 boys and a wonderful husband. 150 mg Imuran, bentyl, entocort, vicodin as needed, Humira, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/10/2009 8:16 AM (GMT -7)   
How about a CT Enterography. This is one of the newer tests out there. You do have to drink contrast, but its no where near as bad as the barium you drink with the SBFT. The also give you contrast thru and IV. It was a pretty simple test to do and showed alot. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/10/2009 1:01 PM (GMT -7)   

Thanks for the responses guys!

Its bad enough that we have to deal with this disease let alone all the horrible tests!! I will ask about the CT Enterography when I see my GI, how long does the CTE take? and also whats the radiation risk? I'm hoping I can use that card in my favour one of the nurses once commented they don't like doing SBFTs on young women because of radiation, always like going in to see him with a pros and cons argument to get my way lol

Got a bloodtest tomorrow, heres hoping things are looking calmer!


 
 


JAB
Regular Member


Date Joined Nov 2003
Total Posts : 351
   Posted 2/10/2009 2:16 PM (GMT -7)   
I'm thinking a scope would be the next step to really see what is going on in there.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/10/2009 2:49 PM (GMT -7)   
I think I was there about 1 hour to hour and a half at most for the CT Enterography. There is a radiation risk with all xrays, including CT's except an MRI.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 2/22/2009 2:23 PM (GMT -7)   
Just out of curiosity, what was it about the small bowel series that made it so bad for you? I mean absolutely no offense to you, but I'm an xray tech, and compared to say a barium enema, I think a small bowel series is easy. Of course that's just from my experience. I know everyone is different, and something relatively easy for me might be difficult for another person. Was it drinking a lot, or were you in a lot of pain to begin with that made it bad? Just wondering if there's anything else I can be doing for a patient to help them through it better!

Also, just to clarify what a couple people have replied....ANY test can miss things. I've had CT's done and they show absolutely nothing, and I've known something had to be going on. (that's why your GI needs to treat based on your symptoms AND test results, not just one or the other) Plain xrays of the abdomen CAN show an obstruction, but for the most part they do not. CT's usually show a lot more, but like I said, they can miss a lot too. None of the tests are foolproof-which is what is frustrating to all of us. If they had 1 test that could definitely show anything going on, all our lives would be easier. As for CT enterography, the only downside I wanted to tell you was that it is A LOT more radiation than regular xrays and a small bowel series. But if that's the test you can handle, and it helps get you to feeling better, I'd think the radiation would be worth it! Radiation wise, the rule is that the benefit of having the test outweighs the potential risk of the radiation.

I hope things start getting better, and they figure things out for you! Let us know what you end up having and if it helps!
Becky

29 yr old female-dx with CD in '97 after emergency resection, 2nd surgery '05, currently on Humira, Prilosec, Wellbutrin


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 2/22/2009 3:30 PM (GMT -7)   
for what it's worth, I have the lump every morning when I wake up. my GI thinks it is nothing, I feel great, and it goes away after a BM. I think it is just cuz I am skinny and things are "fuller."
that aside, I, too, am curious what happened with you SBFT. I hate barium, but it is one of the easier tests. when I had one with a tube down my nose and throat, now THAT was the worst!
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


elexis
Regular Member


Date Joined Feb 2003
Total Posts : 101
   Posted 2/23/2009 5:44 AM (GMT -7)   
Any test can miss something....Every test I took it showed Inflammation but that's not what it was it was a stricture and when I had a resection done he found fistulas forming about 3 of them and he said there were holes along the stricture....No test showed any of that...So it can go to show nothing is perfect!
Dx w/ Crohn's Disease May 2000
Medication: Imuran 150 Mg, Asacol 400MG
Dx w/ Hypothyroid 2001
Medication: Levoxyl 88MCG
Small Bowel Resection November 2008


Jordan59
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 2/23/2009 2:14 PM (GMT -7)   
If your GI suggests a colonoscopy, please don't freak. My doc put me under. After a little pin prick of the injection, I woke up feeling like nothing had been done! It was actually a nice litle nap.

Good luck!

Jordan59
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 2/23/2009 2:14 PM (GMT -7)   
If your GI suggests a colonoscopy, please don't freak. My doc put me under. After a little pin prick of the injection, I woke up feeling like nothing had been done! It was actually a nice litle nap.

Good luck!

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/23/2009 4:38 PM (GMT -7)   
the worst part of the scope is the prep...the actual procedure is nothing if they put you out...which i always have them do...wake up and it's done...a bit of gas and you're outta there!

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/24/2009 4:53 AM (GMT -7)   

Hi bar77,

Of all the diagnostic tests that my daughter has had, she absolutely dreads the SBFT. I can't speak for everyone, but for her, the drinking was no problem, nor the procedure itself. A bit of discomfort when the Radiologist sometimes pushes down to hard with the apparatus he uses. To get a clearer image, as being a Technician you are likely aware, they sometimes have to put air in via a tube in the rectum. That's caused my daughter considerable pain. She's been through quite alot, and I've never seen her cry in pain like through that. 

I'm so glad you touched on Radiation. I often wonder why Dr.'s don't seem to ever inquire or mention it. I know that when you need a diagnosis, then the risks are outweighed. Yesterday, ironically, I asked our GI about having CT enterography instead of a SBFT, as she needs another in a few months. She said exactly what you said, that it is quite a lot more radiation. It's the first time I've heard of a concern with that. Can you explain, and I'm sure many are curious, just how much radiation someone is exposed to during CT scans, and SBFT's, (or others), and how much is too much?

Thanks, Tom. 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/24/2009 11:12 AM (GMT -7)   
Hi guys,
Sorry haven't been about the last couple of days (travelling etc to come home for GI appointment yesterday and infliximab infusion today - apologies if this post is a little scatty I'm always a bit out of it on the day I get it!) Those who remember my other post 'mania after infliximab' thanks for the responses and I am armed with tremazepam for use in case the mania/insomnia strikes! Never know I might be lucky and not need it!
 
The lump my GI isn't overly worried about, he said thats where I've had disease in the past and isn't sure why it 'pops out' but said it didn't feel dangerous or anything but has ordered a couple of tests as he's concerned about whats going on inside me as I've spent 5 years in remission and now I just can't quite shake it, especially as I have healthy appetite and am still underweight and not putting on weight - so he has ordered both a colonoscopy and unfortunately SBFT for April (what a way to spend my Easter break from uni! I'll get on to why I'm so anti SBFT in a moment but my GI has given me a million assurances that it will not be as disastrous as last time (which in all fairness was nearly 7 years ago)
 
I had one colonoscopy just after I was first diagnosed and to be honest did not mind it one bit! I was conscious throughout but they'd given me a relaxant and as I was young at the time (15) had a nurse sat by head holding my hand, reassuring me, talking me through it etc and got to watch the whole thing on a massive TV screen which in my very relaxed/high state I found fascinating! It was my GI who performed it and I do not remember any pain any at all - the only weird bit was seeing them take the biopsy on the TV screen and feeling it as they did it inside!!
So I'm not too worried about having that again, my GI's doing it for me again and I trust him and he's acknowledged that I can get panicky since past nasty experiences like the SBFT......
 
The SBFT....it was probably also my state of mind at the time (being young and seriously ill) that added to the trauma but it was them trying to tube me that caused the main problem which then just messed everything up, whether its the shape of my head or what who knows but I was sat alone in this room and these 2 nurses (1 male, 1 female who seriously had no bedside manner) came in, one held my head while they squirted this stuff up my nostril which BURNED, I kid you not I wanted to claw my face off it was darn painful and then they tried to ram the tube in it just wasn't happening, they couldn't get it in there but wouldn't give in, I was held down by the head and shoulders while they continuously rammed this tube against whatever bone it is at the back of your nose under your eye - I was in agony and when it got too much and I started shaking and crying they started having a full on go at me and said if I didn't co-operate they were going to send me away and I'd have to do the laxatives etc all over again.
So I tried to pull it together and let them continue but they just couldn't do it and kept ramming it against the bone, pulling it out, ramming it some more til it got to the point that blood was coming out my nostril and I was in so much pain they had to give up. I begged them to let me drink the barium but they refused saying it'd make the test take longer and they weren't prepared to let me do it. So their next plan was to force the tube down my throat. Well of course that went in and as soon as it was down they put me on the table under the machine with the tube hanging out my mouth and buggered off behind the screen.
So not only was my face bruised and blood dribbling out my nose I now had a tube running through my mouth and down my throat which produced the next problem - whenever my swallow reflex went I'd start choking and gagging, now I don't know if anyones tried not swallowing for an hour but it is impossible especially when your body knows theres something thats not supposed to be there and of course whenever I choked or gagged the nurses would start shouting at me from behind the screen to stop it and keep still, they were very intimidating and I found them terrifying at the time. The stress made the cramps come on badly which is a great combination with barium being pumped through which I swear they did too fast as I bloated out horrifically for the first half hour and when they eventually let me go I was in so much pain with my nose/face, throat from the tube and gagging and my stomach.

Like I said I was a young, frail teen and being treated like that and then having to lie there in immense pain and to be honest really really distressed for over an hour after has really done a number on me in terms of anxiety. I know as far as hospital experiences go people have had worse but that for some reason did really scar me. But my GI has said he's put a note on it to make sure they don't try and tube me and let me drink it and to warn them to be 'nice' if I'm anxious as the last SBFT distressed me, so I hope that does make a difference, I'm trying not to think about it I actually well up if I do!
 
I'm not sure how much radiation is involved, but one of the (very nice) IBD nurses mentioned to me once that they try to hold off on too many x-rays etc due to radiation, I'm not sure how much is too much though its a shame I didn't read this before my appointment I would have asked!
 
 


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 2/24/2009 3:41 PM (GMT -7)   
What a horrific experience that sounds like! I can see why you would dread it so much. I can only speak for the facility that I work for, but we don't tube any of our patients. All we do is have a patient drink about a cup every 20 minutes till the barium reaches the TI, then have the radiologist take images using a compression paddle. I've had an NG tube put in a few times (luckily at the time I was heavily drugged from being in pain) and even with pain medicine, it hurts enough that i cried each time. I feel for anyone who's had to have one put in. On top of having the tube put in, to have heavy barium forced into your stomach can painful too. I'm sorry you had to go through that! sad

As for your questions about radiation....I don't have the greatest answers for you. As I don't work in CT, I don't actually know how much radiation is in a CT, I just know that it is a lot more than an xray. Answering the question how much is too much radiation...I'm not sure the number. I know that there is an amount for someone working in xray-we all wear badges that monitor us-and I know much more about that than the amount for a patient. Doctors are a lot more conservative in xraying someone younger, especially a female in child bearing years. Even during the tests like a SBFT, the radiologist usually tries to use the least fluoro (that's when they're xraying you in a "live" video type fashion) as possible. I just look at it like any other test...there are risks to everything medical. It's all relative. You just have to know that if there's something going on, and the dr can't figure things out without knowing what's going on inside, the benefit outweighs risks of radiation. It's more important to get someone well than worry about radiation. I know all my "answers" are vague...like I said, I'm sorry I don't have specifics to tell you.

Thinking about it though, I wonder if a GI dr would even be able to give you numbers of what is too much radiation. Most drs are taught about radiation, but truth be told, sadly a lot of them don't even know what goes into the test that they order.
Becky

29 yr old female-dx with CD in '97 after emergency resection, 2nd surgery '05, currently on Humira, Prilosec, Wellbutrin

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