Nevermind the generic crap...:boring:
Hi all, you can call me Slim! I was diagnosed with CD in 9-2006, and (hopefully not before) sometime in January, I am planning my first surgery to correct several fustulae, as well as a totally trashed Ileum, perhaps some other parts of the small bowel as well.
I have been on just about every drug under the sun for CD, with little success, aside from Prednisone, Cipro, and the usual comfort meds. My Current GI is a total twit, recently sending me a dear john, dodging my calls, and refusing to treat me with the method I would prefer. He would rather I take Remicade, even though I have already taken Humira, and Cymzia with little to no success. Then there is the concern of allergic reaction, and Lymphoma...
ATM, I am at an impasse.
The following is a post I made on another forum, which I am a member. Said forum has nothing to do with Crohns, however, I have been a member of that forum over three years, and have developed relationships with people whom I feel I can share such issues. Please forgive the profanity, as I am at the edge of sanity with my disease, as well as the sheer incompetence that I have faced in dealing with my illness (something some of you may well understand.)
As you can see from the time I posted this, I have not been able to sleep (all week.) My crohn's is flaring, and to top it off, I have come to the conclusion that my G.I. doctor is a complete IDIOT! As those following this thread know, I saw a surgeon on the 26th. I had been trying to contact my GI doc in an effort to get some pain medication before the 28th, as I have been milking my PK's for the last two weeks so I don't run out before my appt that was supposed to happen on the 7th (then moved to the 28th.) Well, after several failed attempts to get in contact with him, calling his office daily from the 26th-30th, I get a letter from him dated the 30th, that stated the following verbatim:
Dear Mr ***
Unfortunately due to your severe fistulizing Crohns disease and refusal to start appropriate medical therapy and or colorectal surgery evaluation for management of the Crohns disease it has made it difficult to provide appropriate medical therapy for your Crohns disease and continuing to prescribe narcotic medications and or steroids for management of your severe Crohns disease in my opinion provides substandard medical care in which I will no longer partake. The recent CT scan has showed no improvement of your Crohns disease with steroids and antibiotic therapy. I will continue to provide your care only for the next 30 days ane would urge you to find another doctor who can share your views on the management of your Crohns disease. Please ask your insurance advocates to provide you with names of other gastroenterologists that will manage your Crohns disease.
Sincerely,
Peter Fenton MD
Now all I can say to this is WHAT THE F**K DO YOU THINK I DID ON MONDAY YOU MOTHERF**KING TOOLBOX????
Seems I must have imagined the whole visit with the surgeon on the 26th, and somehow Remicade is going to magically eliminate my fistulae, even though every goddamm expert I have spoken to in this regard has told me that surgery is the ONLY means of removing them. AAAARRRGGGGHHHHH!!!! I was begging this SOB for surgery in '08 because I was suffering so much then (even though I was following his direction!) He told me that surgery was not an option at that time. Even though I had fistulae!!!!
Now I can only wonder that if I had actually had surgery then, maybe I would not be disabled, as I am now.
This is totally beyond my scope. Substandard? What the hell could I do differently? Take Remicade? That will only mask my symptoms, moreover, I could possibly have an allergic reaction to the drug, because I have already been on two different TNF blockers, with little to no effect on my disease. I also explained to the "doctor" that I did not want to die from Lymphoma (a known risk of tnf blockers) before my children hit puberty, and that I would rather take my chances with the steroids.
Isn't this MY CHOICE??? Don't I get to DECIDE which therapy works best for me? I have taken most every damn drug under the sun for Crohns, one of them almost killing me, another causing me to dump my bike, another which lost it's efficacy after about a year and a half (that was the tnf blocker) only to be replaced with another of the same family, with NO effect!!! The only drug I have used with success is Prednisone. The CT scan PROVED IT even though the "doctor" says it did not... I took the test, I know the results, I spoke personally to the radiologist, he told me to find a new doctor... I was under the impression that Dr. Peter Fenton knew what he was doing... my mistake.
Now, I have to find a new G.I. which means I have to start this fvcking trip all over again. Because naturally, the doctors know everything, and I know nothing... even though it's my body, and they have only just met me... Nevermind the emotional distress that this is causing me. I had a doctor do something similar to me in 2010, over 50$... I thought these people take an oath to do no harm?
Is it any wonder that I don't trust doctors?
Attn. mods, please remove this post if I have managed to violate any of your terms, as I am new to this forum, and am not yet familiar with the status Quo.
Hi all, you can call me Slim! I was diagnosed with CD in 9-2006, and (hopefully not before) sometime in January, I am planning my first surgery to correct several fustulae, as well as a totally trashed Ileum, perhaps some other parts of the small bowel as well.
I have been on just about every drug under the sun for CD, with little success, aside from Prednisone, Cipro, and the usual comfort meds. My Current GI is a total twit, recently sending me a dear john, dodging my calls, and refusing to treat me with the method I would prefer. He would rather I take Remicade, even though I have already taken Humira, and Cymzia with little to no success. Then there is the concern of allergic reaction, and Lymphoma...
ATM, I am at an impasse.
The following is a post I made on another forum, which I am a member. Said forum has nothing to do with Crohns, however, I have been a member of that forum over three years, and have developed relationships with people whom I feel I can share such issues. Please forgive the profanity, as I am at the edge of sanity with my disease, as well as the sheer incompetence that I have faced in dealing with my illness (something some of you may well understand.)
As you can see from the time I posted this, I have not been able to sleep (all week.) My crohn's is flaring, and to top it off, I have come to the conclusion that my G.I. doctor is a complete IDIOT! As those following this thread know, I saw a surgeon on the 26th. I had been trying to contact my GI doc in an effort to get some pain medication before the 28th, as I have been milking my PK's for the last two weeks so I don't run out before my appt that was supposed to happen on the 7th (then moved to the 28th.) Well, after several failed attempts to get in contact with him, calling his office daily from the 26th-30th, I get a letter from him dated the 30th, that stated the following verbatim:
Dear Mr ***
Unfortunately due to your severe fistulizing Crohns disease and refusal to start appropriate medical therapy and or colorectal surgery evaluation for management of the Crohns disease it has made it difficult to provide appropriate medical therapy for your Crohns disease and continuing to prescribe narcotic medications and or steroids for management of your severe Crohns disease in my opinion provides substandard medical care in which I will no longer partake. The recent CT scan has showed no improvement of your Crohns disease with steroids and antibiotic therapy. I will continue to provide your care only for the next 30 days ane would urge you to find another doctor who can share your views on the management of your Crohns disease. Please ask your insurance advocates to provide you with names of other gastroenterologists that will manage your Crohns disease.
Sincerely,
Peter Fenton MD
Now all I can say to this is WHAT THE F**K DO YOU THINK I DID ON MONDAY YOU MOTHERF**KING TOOLBOX????
Seems I must have imagined the whole visit with the surgeon on the 26th, and somehow Remicade is going to magically eliminate my fistulae, even though every goddamm expert I have spoken to in this regard has told me that surgery is the ONLY means of removing them. AAAARRRGGGGHHHHH!!!! I was begging this SOB for surgery in '08 because I was suffering so much then (even though I was following his direction!) He told me that surgery was not an option at that time. Even though I had fistulae!!!!
Now I can only wonder that if I had actually had surgery then, maybe I would not be disabled, as I am now.
This is totally beyond my scope. Substandard? What the hell could I do differently? Take Remicade? That will only mask my symptoms, moreover, I could possibly have an allergic reaction to the drug, because I have already been on two different TNF blockers, with little to no effect on my disease. I also explained to the "doctor" that I did not want to die from Lymphoma (a known risk of tnf blockers) before my children hit puberty, and that I would rather take my chances with the steroids.
Isn't this MY CHOICE??? Don't I get to DECIDE which therapy works best for me? I have taken most every damn drug under the sun for Crohns, one of them almost killing me, another causing me to dump my bike, another which lost it's efficacy after about a year and a half (that was the tnf blocker) only to be replaced with another of the same family, with NO effect!!! The only drug I have used with success is Prednisone. The CT scan PROVED IT even though the "doctor" says it did not... I took the test, I know the results, I spoke personally to the radiologist, he told me to find a new doctor... I was under the impression that Dr. Peter Fenton knew what he was doing... my mistake.
Now, I have to find a new G.I. which means I have to start this fvcking trip all over again. Because naturally, the doctors know everything, and I know nothing... even though it's my body, and they have only just met me... Nevermind the emotional distress that this is causing me. I had a doctor do something similar to me in 2010, over 50$... I thought these people take an oath to do no harm?
Is it any wonder that I don't trust doctors?
Attn. mods, please remove this post if I have managed to violate any of your terms, as I am new to this forum, and am not yet familiar with the status Quo.