Share Facebook
Crohn's Disease Forum » Tests for IBD » Capsule endoscopy


06-20-2017, 02:34 PM   #1
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
Capsule endoscopy

Hi again. Not sure if this will get much response as a tricky one, but I'll give it a go.. Had my results through from my capsule test (after a normal colonoscopy & MRI but severe symptoms & FC 600+) and it showed three separate areas of ulcers (they found one ulcer on colonoscopy so technically 4 separate areas of ulceration), and then the report said severe scarring throughout the entire small bowel? I've had crohns 30 years & right now only on steroids & cant get below 15mg as symptoms flare big time. azathioprine caused my liver to start failing so had to stop that so literally just on the predisolone going up & down on dosage. My IBD team won't start anything else til they have proof of active disease? Is 4 areas & scarring enough evidence of active disease? I'm so sick & tired of feeling sick & tired & would like to get off the predisolone & into remission to get back to being Mummy again! Am seeing the gastro pharmacist nx week but no ones made an appointment to see the actually gastro?? Ugh. Any one else had this capsule test with similar results & had crohns confirmed as active? Thanks in advance xx
06-20-2017, 02:59 PM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I, personally., would think that would be enough evidence of active disease but I could be wrong.

__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
06-20-2017, 03:31 PM   #3
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
I, personally., would think that would be enough evidence of active disease but I could be wrong.
Thank you. I would too- you can see the ulcers like little
Mushrooms lol but they're still being difficult & meanwhile I'm
Back on full whack of steroids just so as I can function 🙄😞
06-21-2017, 09:55 AM   #4
Scipio
Senior Member
 
Scipio's Avatar
 
Join Date: Oct 2015
Location: San Diego

My Support Groups:
Four areas of visible ulceration and an FCP over 600? Wow, what sort of proof are they looking for? Have they run a CRP blood test? Was that positive?

Can you change GIs? IMO they should be thinking about putting you on a biologic.
06-21-2017, 02:05 PM   #5
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
Four areas of visible ulceration and an FCP over 600? Wow, what sort of proof are they looking for? Have they run a CRP blood test? Was that positive?

Can you change GIs? IMO they should be thinking about putting you on a biologic.
Thank you for your reply. I really appreciate hearing this as they make me feel like I'm going mad! My CRP at last check was 0.7 but I'd been on steroids for a few weeks plus IV steroids as well. Initially they said they'll start me on a biologic after the aza affected my liver then they back tracked & said they won't start that without definitive proof of active crohns 🙄 I'm on a really high dose of steroids & tapering isn't working I just end up back on 40mg again so am totally screwing myself with the side effects of pred but it's better than the symptoms of crohns (which they say it may not be still despite the results). I don't want to come off the pred til I'm on something to help with my symptoms as I got so sick & have been hospitalised twice now and with two children (single mum) it's really hard, but the pred helps me function.. The capsule images showed so much scarring along with ulceration so think they may put it all down to scarring, in which case I'm stuffed as can not function like I was! 😞 I really hope they revert back to the biologic idea as the other option the said is re start the azathioprine along with alpropunal but having looked that up it sounds pretty dodgy 😱
Wish I could change but the only other gastro near by is worse, dealt with his briefly 10 years ago when I had private insurance (he works nhs & private) and he's a really rude arrogant type who is not patient friendly. So It's a rock & a hard place unfortunately 😞
07-08-2017, 12:07 PM   #6
ncman
 
Join Date: Sep 2014
Location: United Kingdom

My Support Groups:
Crikey! 600 FC and being dependant on steroids is not enough evidence?!!

What's the update Hollaka79? I really think you need a second opinion on this as they shouldn't leave you waiting...
__________________
Advocate of the dietary treatment of Crohn's, as detailed in The essential guide to controlling Crohn's Disease, Colitis and Other IBDs by Professor John Hunter

Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
07-09-2017, 02:46 PM   #7
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
I'm due to start Humira on Thursday. The pens have arrived, just waiting on the nurse to come out. The steroids have caused major side effects now & am undergoing diabetes testing as blood sugar is high & think that's coz of the steroids. Also checking me for Cushing's. Tomorrow I come down to 30mg of pred so fingers crossed I can stay ok til the Humira kicks in.
I received a letter yesterday from my Ibd nurse stating I have severe proximal small bowel scarring which they assume is from previous inflammation? I don't really get what this means? Will they be able to remove it if it's that bad? Or will the Humira help that? I'm all a bit confused with it all now but glad finally I'm getting on a new med at last. Hopefully I'll start to feel better!

Appreciate everyone's response ☺️
07-10-2017, 01:13 PM   #8
Scipio
Senior Member
 
Scipio's Avatar
 
Join Date: Oct 2015
Location: San Diego

My Support Groups:
Humira will not remove the scarring, but it may make the inflammation in the area subside such that the scarring is less of a problem. The only way to really get rid of the scarring is surgery. Whether you need surgery depends largely on how severe the scarring is and the remaining functionality of the gut. The scarring increases the risk of complications such as blockage of the gut, vomiting, and severe pain. If after the Humira kicks in you don't have these problems then you may just be able to live with the scarring and avoid the surgery. But many Crohn's patients end up having the surgery sooner or later.
07-10-2017, 04:10 PM   #9
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
I had a small bowel resection 20 years ago. The report states there is severe scarring & a linear scar? Most scarring is proximal it says so have no idea what that is lol... The last few days I've been getting much more bloating & "stretching" internally pain. My belly literally feels like it's going to burst open inside out! I don't know if it's cos of the crohns or the scarring. I'm assuming the scarrings been there a while so don't see why it should play up now? This flare is so different this time round, when I was a kid & went through my first major (10 year) flare, I didn't get half the problems I get now & it all seems back to front this time. 20 years ago I had a small bowel resection & that was horrific so hoping the Humira helps calm it all down...

Thank u very much for your reply, I'm not due to see my gastro til October so had no one go over it all with me so it's me,this forum & google trying to figure it all out...
07-10-2017, 04:54 PM   #10
Scipio
Senior Member
 
Scipio's Avatar
 
Join Date: Oct 2015
Location: San Diego

My Support Groups:
I had a small bowel resection 20 years ago. The report states there is severe scarring & a linear scar? Most scarring is proximal it says so have no idea what that is lol...

This flare is so different this time round, when I was a kid & went through my first major (10 year) flare, I didn't get half the problems I get now & it all seems back to front this time. 20 years ago I had a small bowel resection & that was horrific so hoping the Humira helps calm it all down....
"Proximal" simply means closer to the center or closer to the point of origin. Distal means farther away. Using your arm as an example your shoulder is proximal to your body. Your hand is distal.

Your flares are probably different and worse now than they were when you were a kid because the damage is cumulative. It never completely heals over time, and so it leaves permanent scars and thus each new flare leaves the gut a little worse off than the one before.
07-11-2017, 09:25 AM   #11
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
"Proximal" simply means closer to the center or closer to the point of origin. Distal means farther away. Using your arm as an example your shoulder is proximal to your body. Your hand is distal.

Your flares are probably different and worse now than they were when you were a kid because the damage is cumulative. It never completely heals over time, and so it leaves permanent scars and thus each new flare leaves the gut a little worse off than the one before.
Thank you for explaining that for me, should have u as my GI ☺️
Am definitely feeling worse, my stomach is getting more & more distended & had a lot of pain today despite still being on predisolone. Hopefully the Humira helps quickly & this is not the onset of the scarring causing a blockage 😕
Reply

Crohn's Disease Forum » Tests for IBD » Capsule endoscopy
Thread Tools


All times are GMT -5. The time now is 04:12 PM.
Copyright 2006-2017 Crohnsforum.com