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Crohn's Disease Forum » Support Forum » Waiting .......but dont know what for!


06-17-2012, 02:28 AM   #1
FruitLoop
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Waiting .......but dont know what for!

Hi - I will try and sum up as quickly as possible.

I have had Crohns' since 2001 and its usually documented as "stricturing Crohn's disease."

i had a re-section in 2005 which worked wonders. I then developed another stricture and had a re-section in 2009 which sadly went terribly wrong, it split and i got peritonitis, emergency ileostomy and then developed 2 fistulas (belly button and hip). In November 2010 i had the ileostomy reversed and the fistulas removed. I am now missing approx 2 metres of bowel in total.

Following that surgery i have never really been "right" and have been on steroids for most of the time since. Ive been flaring pretty much constantly since and my iron levels have caused lots of problems.

Summer 2011 my iron levels dropped and i ended up having 7 pints of blood over 3 months. I was then put onto Venofer infusions (iron) as my GI is not a fan of long term blood transfusions. I was having them twice a week with an aim of getting my ferritin levels to 100 - as my ferritin rose it was then reduced to weekly, then every 10 days and then every other week. Since dropping to every other week my iron levels have been dropping and my ferritin is now 15.

Trying to discover why i was so anaemic led me to have a colonoscopy and gastroscopy both of which were ok - colonoscopy showed active Crohns.

I then had a capsule endoscopy which showed active ulcerating Crohns throughout the small bowel and it is thought that this stops me absorbing iron as well as losing blood through the ulcers.

Anyway the capsule didnt pass. My GI put me on a the loading doses of infliximab, iv steoids and oral steroids in an attempt to stop the inflammation fast and the camera would then pass - this hasnt worked. I thenhad a colonoscopy with balloon inflation to try and drag the capsule out but it was too far up.

Over the months where ive been having all this treatment to try and reduce inflammtion my stomach has become more and more painful and distended.

I am suffering from partial blockages every few days and every few weeks i get a full blockage which lasts a few hours.

It would seem that the aggressive treatment has caused mass scarring which has formed strictures.

The pain is so bad i am now on Fentanyl patches.

My GI is having a MDT with the surgeons on Thursday but im really in limbo as to what next - is it possible to do surgery where they go in and "find" strictures whilst they are in there or do strictures need to be found prior ?

The surgeon i have seen in the past is so busy he cannot even offer a consult till September. My dad wants to pay for a private consult but tbh i dont think that would help as he would still be too busy to actualy do anything.

Obviously the capsule endoscopy needs taking out (been there since Jan) as i feel that it is that upsetting things - do you think the actual camera could be aggrevating the Crohns ? i.e sitting there irritating the ulcers ?

My IBD nurse has said that infliximab can actually cause strictures as it promotes healing very fast which can cause scarring.

Looking back both my previous strictures were found after approx 6 months of infliximab treatment.

If anyone has any suggestions please let me know! Im really at the end of my rope now.
06-17-2012, 02:40 AM   #2
skippy111
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when I had my surgery it was a combination of laproscopy and exploratory surgery.

there are times when the only way to really know for sure what is going on is through having exploratory surgery.

maybe an ultrasound will help find the missing capsule,

I hope all goes well, you hang in there.
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Crohn's /Anemia DX in 1991
Aspbergers/Depression/ADHD DX 2001

Past meds for crohn's
Prednisone/Azulfadine

Recent Meds While in Hosp for Crohn's/Depression
Flagyl/Cypro,Zofran Protonix, Prednisone, Lovenox
Celexa,Kolonopin, Ritalin
Current meds:
Prednisone,Celexa,Adderall,Kolonopin,Percocet
06-17-2012, 06:23 AM   #3
FruitLoop
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Thanks - they know where the capsule is - it shows up on x-rays. They just cant reach it with a colonoscopy as its in the middle of the short bowel.
06-17-2012, 07:40 AM   #4
skippy111
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well i hope they are able to retrieve it with as minimal invasive means as possible,
06-17-2012, 11:36 AM   #5
StarGirrrrl
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I think a foreign body will certainly aggrivate any ulceration. Since it has been in there so long, I would be worried about ulcers forming around the camera, and something like the camera becoming stuck to them/around them, like a plant growing up over a piece of plastic, and that plastic being welded to the plant (sorry, best example I can think of!).

I repsonded to you before, I have never, ever heard of a stuck Pill Cam being taken out by scopes- and everyone else who replied said sugery to get it out!!

Always, always people are taken into surgery to have it surgically removed- asap, as soon as it is known to be stuck.

I would also be very concerned that the materials (some likely toxic) used in the camera were beginning to be broken down by digestive juices, and leeching into the body. They are designed to spend maybe 3 days max in the body? If not that then certainly not months.

I have to ask what the heck your Drs are doing, what are they saying about this camera being in there all this time?

I think you should focus on getting the camera out asap and then looking at the other issues. When they go in to take the camera out they can have a good look round anyway. Don't worry about when surgery can happen for strictures- you need it anyway to get the Pill Cam out.
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
06-17-2012, 01:56 PM   #6
skippy111
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yes, get that camera out,
06-17-2012, 02:40 PM   #7
Gazza
 
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Hope they can sort this out for you soon. Hope u feel better aswell soon
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06-17-2012, 05:50 PM   #8
NancyHany
 
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I'm so sorry for all your trouble but you have to go to your doctor and demand that he takes this camera out! Crohn's is an autoimmune disease and there's a foreign object currently embedded in your colon. I wish you find what makes you feel better soon.
06-17-2012, 06:34 PM   #9
Trysha
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Hi Fruitloop,
It is appalling that the capsule has been allowed to remain in you for so long, quite unbelievable in fact.
You need to demand immediate action to remove it.
Have your doctors given any solid reason for allowing this situation to continue?
You need that surgeon to immediately apply his skills in your interest.
I would have thought there were grounds here for legal action to be taken.
Feel better soon
Hugs and best wishes
Trysha
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