Share Facebook


12-23-2015, 09:08 AM   #1
EvieBaby
Senior Member
 
EvieBaby's Avatar
 
Join Date: Mar 2013
Location: Bolton, United Kingdom

My Support Groups:
Stupid people!

For months I've been struggling keeping everything under control and I've twice told my Dr that the infliximab doesn't seem to be working for me. I had blood tests and was apparently discussed at some meeting to see what should be done. I've received a letter from the doctors the other day and I just can't believe it.

They think the infliximab is working because my fistula has drained. I had a seton put in last September and started the infliximab in the November by which point the fistula had already stopped draining. They have absolutely no idea what they are talking about!

I've had no further investigations since the seton was put in so how do they know what is happening? They're just guessing. And now they want me to have yet another colonoscopy, which I'm going to refuse, because they clearly can't think of anything else to do.

It just drives me absolutely crazy that for the last 2 years all they do is suggest colonoscopies instead of actually trying to find out why nothing is working.

12-23-2015, 09:19 AM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Have they done any tests to see what is going on?
12-23-2015, 09:20 AM   #3
EvieBaby
Senior Member
 
EvieBaby's Avatar
 
Join Date: Mar 2013
Location: Bolton, United Kingdom

My Support Groups:
I've had a blood test before my last infliximab to test my antibodies but no one has told me the results. Other than that I've had nothing for years. I've had around 8 colonoscopies over the years but they can never gather anything from them

12-23-2015, 09:24 AM   #4
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
They should give you results from blood work. They should give you test(s) that say what is going on.

12-23-2015, 10:06 AM   #5
NeverDull
 
NeverDull's Avatar
 
Join Date: Dec 2015

My Support Groups:
I really get your frustration right now with the medical community. I have been there and still am. In Canada, we have a law that allows patients to get their medical records, such as test results etc. after they are available.
It's becoming more and more evident today that we, the patients have to take matters into our own hands, be our own advocates, be informed, keep our own file of medical documents, and keep looking for a resolution and answers especially with Crohn's. Hang in there you are not alone.
12-23-2015, 10:08 AM   #6
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I really get your frustration right now with the medical community. I have been there and still am. In Canada, we have a law that allows patients to get their medical records, such as test results etc. after they are available.
It's becoming more and more evident today that we, the patients have to take matters into our own hands, be our own advocates, be informed, keep our own file of medical documents, and keep looking for a resolution and answers especially with Crohn's. Hang in there you are not alone.
Agree
12-23-2015, 01:44 PM   #7
EvieBaby
Senior Member
 
EvieBaby's Avatar
 
Join Date: Mar 2013
Location: Bolton, United Kingdom

My Support Groups:
I've written a letter today to my consultant with every detail in it that they don't ever seem to acknowledge so I'm ready to send that after Xmas. I've had problems with urgency for years but no one will even discuss this with me

12-23-2015, 01:47 PM   #8
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
That is not right

12-23-2015, 01:47 PM   #9
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
You need another doctor.

12-23-2015, 04:01 PM   #10
NeverDull
 
NeverDull's Avatar
 
Join Date: Dec 2015

My Support Groups:
If you dont mind a few more ideas Evie, make a copy of it before you send it, and mail it registered. That might get someone's attention...
Agree with Ronroush, but in UK its a bit like Canada, you dont always have a choice with the National Health Program. I don't know for sure. You can explain.
In the meantime, hope you can enjoy the next few days with a little cheer, best wishes.
Marie
12-23-2015, 04:03 PM   #11
EvieBaby
Senior Member
 
EvieBaby's Avatar
 
Join Date: Mar 2013
Location: Bolton, United Kingdom

My Support Groups:
If you dont mind a few more ideas Evie, make a copy of it before you send it, and mail it registered. That might get someone's attention...
Agree with Ronroush, but in UK its a bit like Canada, you dont always have a choice with the National Health Program. I don't know for sure. You can explain.
In the meantime, hope you can enjoy the next few days with a little cheer, best wishes.
Marie
That's a really good idea actually. It concerns me that they're going to be all funny about it and it's going to seem like I'm complaining but I just want someone to address these problems properly.

12-23-2015, 06:00 PM   #12
NeverDull
 
NeverDull's Avatar
 
Join Date: Dec 2015

My Support Groups:
Glad you think so. Don't worry about what they think, you are representing someone important - YOU, who is not getting the care and attention needed. Best.
Reply

Thread Tools


All times are GMT -5. The time now is 02:00 PM.
Copyright 2006-2017 Crohnsforum.com