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.
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.
