Since I was in LaLa land after my endoscopy, I didn't have the opportunity to address the issue of mast cells & histamine with my GI. Plus, the fact that he was like he was on speed because, I'm sure of over scheduling!!! My test started 2-1/2 hours after my scheduled time.
Anyway, I get a call the day after the test from one of his assistants to see how I did the following evening.
Addressed the issue of the hives appearing about 4 hours after the test and I tried to approach her about also having the GI contacting the path lab and having them check for mast cells & histamine.
She replies with, well they can't can't check for that from colon polyps!!!!! And he didn't take any biopsies!!
I replied with "WHAT???????? I didn't have a colonocopy & he told me after the endoscopy that he DID take biopsies."
I finally told her that she evidently had no clue what she was talking about, and that I'd discuss the issue with my GI at my follow up appt..
Then I get another call and she said she was sorry that someone wrote the wrong thing down and from what she could understand, he did take "a" biopsyand the GI reported diverticulitis!!!
At this point I am livid!!!!!!!! I asked, "1" biopsy"???? And she said yes!!!!
Tried to address the issue again about checking the tissue samples for mast cells & histamine and the reply that I received was, "You can call in 7-10 days for your test results!!!!
SOOOOOOO! My follow up appt. is going to very interesting because I have zero tolerance for incompetency!!!!!
Love
Dee~~~~~
Is This Why We Lose The Faith In Our GI's & Their Assist
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Is This Why We Lose The Faith In Our GI's & Their Assist
"What the heart gives away is never gone ... It is kept in the hearts of others."
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jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Go Get 'em Dee!!!!!!!!!!!!!!!!!!
Give 'em hell!!!!!!!!!!!!!!!!!!!!! Finding diverticulosis has NOTHING at all to do with having the endoscopy because that's determined by going through the other end!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Even I would have choked that person. There is NO reason for those kind of mistakes and misinformation from your GI's staff.
They want the ALMIGHTY dollar from us and our insurance companies and yet we get mistaken information.
Let us know what you find out from your GI and how he/she responded when you gave him hell!!!!!
Love and God Bless:
Jodi
Give 'em hell!!!!!!!!!!!!!!!!!!!!! Finding diverticulosis has NOTHING at all to do with having the endoscopy because that's determined by going through the other end!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Even I would have choked that person. There is NO reason for those kind of mistakes and misinformation from your GI's staff.They want the ALMIGHTY dollar from us and our insurance companies and yet we get mistaken information.
Let us know what you find out from your GI and how he/she responded when you gave him hell!!!!!
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Dee,
I'm still shaking my head. And they wonder why we're not happy with the way they treat us. It's bad enough to see a single mistake, but what happened there was worse than a TV sitcom. Now, I'm wondering who made all those mistakes. I hope it wasn't the GI doc. And, how could someone work in a GI doc's office, and not know the difference between an "upper", and a "lower" exam? I sure hope that you haven't completely wasted your time and money.
Love,
Tex
I'm still shaking my head. And they wonder why we're not happy with the way they treat us. It's bad enough to see a single mistake, but what happened there was worse than a TV sitcom. Now, I'm wondering who made all those mistakes. I hope it wasn't the GI doc. And, how could someone work in a GI doc's office, and not know the difference between an "upper", and a "lower" exam? I sure hope that you haven't completely wasted your time and money.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I think that is ridiculous also. If it were a movie it might be funny but not in real life. Sounds like you aren't going to get the extra answers you were after........... I just hope you get some real answers, and surely the doc took more than 1 biopsy.
I don't know what to say.
Love, Shirley
I don't know what to say.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Dear Dee.
I hope you write all this down and address these issues one by one with the GI. One would think the MD's would spend a bit of time to train their staff. After all, it's the staff who interacts most with the patients. I used to be a legal assistant for one of the most sucessful malpractice attorneys in MD. The FEW cases we accepted all resulted from seemingly small mistakes, usually by junior staff members. These mistakes were compounded as the issues moved up the line, then culminated in a very bad outcome for the patient (our client). What happens to the patient your GI's practice whose cancerous polyp report mistakingly gets misplaced, misfiled and/or thrown away? Good luck and do give the GI hell!! He deserves it. Shekoe PS- If your GI is like an Orthopaedic surgeon I once had, in and out of the roon in two minutes, try what I did. As soon as he entered the room. I pointedly looked down at his feet. When he asked me why, I said I was checking to see if her wore running shoes as he was in and out of the office so fast. He got the message ans actually sat down and answered all my questions!
I hope you write all this down and address these issues one by one with the GI. One would think the MD's would spend a bit of time to train their staff. After all, it's the staff who interacts most with the patients. I used to be a legal assistant for one of the most sucessful malpractice attorneys in MD. The FEW cases we accepted all resulted from seemingly small mistakes, usually by junior staff members. These mistakes were compounded as the issues moved up the line, then culminated in a very bad outcome for the patient (our client). What happens to the patient your GI's practice whose cancerous polyp report mistakingly gets misplaced, misfiled and/or thrown away? Good luck and do give the GI hell!! He deserves it. Shekoe PS- If your GI is like an Orthopaedic surgeon I once had, in and out of the roon in two minutes, try what I did. As soon as he entered the room. I pointedly looked down at his feet. When he asked me why, I said I was checking to see if her wore running shoes as he was in and out of the office so fast. He got the message ans actually sat down and answered all my questions!
Oh!!! You can bet your sweet bippies that they will either throw me out of the GI office or he will end up just walking out on me!!
This is nothing more than bullshit and I don't take that lightly!
He is one that may be with you 5 minutes, but I'm afraid this time his scheduling will be delayed.
I won't move until I get the answers that I deserve & get a few things off of my chest!!!
I have always been proactive where my health is concerned and like I stated before, He works for ME..
He should have also checked his nurse practitioners report where I discussed the discomfort and the hives starting at the same time. But NO, he leans over the flippin examining bed and asks, "So what's going on.. I'm actually glad that I was given something that made me calm, or he may have been the one ending up on the bed!!!!!
Dee~~~
This is nothing more than bullshit and I don't take that lightly!
He is one that may be with you 5 minutes, but I'm afraid this time his scheduling will be delayed.
I won't move until I get the answers that I deserve & get a few things off of my chest!!!
I have always been proactive where my health is concerned and like I stated before, He works for ME..
He should have also checked his nurse practitioners report where I discussed the discomfort and the hives starting at the same time. But NO, he leans over the flippin examining bed and asks, "So what's going on.. I'm actually glad that I was given something that made me calm, or he may have been the one ending up on the bed!!!!!
Dee~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
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jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
OMG! Dee!
I wish I could be a fly on the wall for your apt Sweety even I know I would learn a few good ideas for future use.
Several years ago and I mean at 15 or 16 yrs. ago our Family Physician that we had been seeing for years decided she was going into a specialized field of practice. (She is now my GI......lol)
Anyway, her original private practice was in a very small community and the transition wasn't going very smoothly for her trying to find another doctor to take over her already solid and thriving private practice.
Everytime David and I needed to see a doctor and at that time David was having some very complicated medical issues to deal with such as COPD, Prostate Cancer and a Hernia. Argh!!!!!!!!!!!!!!!!!! So sometimes we were in seeing the doctor 2 or 3 times a month because as you already know you have to see the PP for a referal to see a specialist.
For almost a year and a half this private practice went through 7 different doctors. Grrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!! Needless to say mild manner David was not able to control is out of control wife........ME!
We were in waiting to be called back to see the doctor when I noticed someone different walking down the hall with a chart and new INSTANTLY that we were to meet doctor of many #8! And I was instantly pissed off!!!!!!!
I said absolutely nothing to David and sat there stewing until we were called back. When this NEW doctor walked into the exam room he had a big smile
and said;"Hi, I'm Scott McDougall.........." I cut him right off!!!!!!!!!!!!! In mid-sentence!!!!!!!!!!!" I have some questions that need to be answered before you even look at either my husband or myself! Are you planning on staying here or are you going to be gone the next time we have to come in? Because, if you are planning on doing the vanishing acts that the last 7 have done to us, you are wasting our time and we are wasting yours so we'll be leaving."
That was 15 or 16 yrs ago and Doc is still there and I would like to think it's because I told him just how things were going to be when he first met us. Because if he had had the wrong answer then we would have left and found a doctor somewhere that wasn't planning on traveling off leaving patients scattering trying to find a reliable doctor somewhere else.
That's my funny for today so you don't back down girl, you go for the answers and maybe it's time that Mr. 5minutes and Gone needs to realize who keeps him wealthy.
Love and God Bless:
Jodi
I wish I could be a fly on the wall for your apt Sweety even I know I would learn a few good ideas for future use.
Several years ago and I mean at 15 or 16 yrs. ago our Family Physician that we had been seeing for years decided she was going into a specialized field of practice. (She is now my GI......lol)
Anyway, her original private practice was in a very small community and the transition wasn't going very smoothly for her trying to find another doctor to take over her already solid and thriving private practice.
Everytime David and I needed to see a doctor and at that time David was having some very complicated medical issues to deal with such as COPD, Prostate Cancer and a Hernia. Argh!!!!!!!!!!!!!!!!!! So sometimes we were in seeing the doctor 2 or 3 times a month because as you already know you have to see the PP for a referal to see a specialist.
For almost a year and a half this private practice went through 7 different doctors. Grrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!! Needless to say mild manner David was not able to control is out of control wife........ME!
We were in waiting to be called back to see the doctor when I noticed someone different walking down the hall with a chart and new INSTANTLY that we were to meet doctor of many #8! And I was instantly pissed off!!!!!!!I said absolutely nothing to David and sat there stewing until we were called back. When this NEW doctor walked into the exam room he had a big smile
and said;"Hi, I'm Scott McDougall.........." I cut him right off!!!!!!!!!!!!! In mid-sentence!!!!!!!!!!!" I have some questions that need to be answered before you even look at either my husband or myself! Are you planning on staying here or are you going to be gone the next time we have to come in? Because, if you are planning on doing the vanishing acts that the last 7 have done to us, you are wasting our time and we are wasting yours so we'll be leaving." That was 15 or 16 yrs ago and Doc is still there and I would like to think it's because I told him just how things were going to be when he first met us. Because if he had had the wrong answer then we would have left and found a doctor somewhere that wasn't planning on traveling off leaving patients scattering trying to find a reliable doctor somewhere else.
That's my funny for today so you don't back down girl, you go for the answers and maybe it's time that Mr. 5minutes and Gone needs to realize who keeps him wealthy.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Jodi!
I don't think you need to worry about me backing down!!!!!
I have always been the type to plant my two feet and stand up for myself when Nobody else seems to give a darn!!!!!
I like to call it my "evil twin" surfacing!!!!
Or like Jack calls it, "The Wrath Of Dee"!!!!!!
Had my ultrasound this morning and am happy that it was very thorough.
Scanned my gallbladder, pancreas, liver, spleen, abdominal aorta, and both kidneys....
Now it's wait for about a week and call for my results..
Love
Dee~~~~~
I don't think you need to worry about me backing down!!!!!
I have always been the type to plant my two feet and stand up for myself when Nobody else seems to give a darn!!!!!
I like to call it my "evil twin" surfacing!!!!
Or like Jack calls it, "The Wrath Of Dee"!!!!!!
Had my ultrasound this morning and am happy that it was very thorough.
Scanned my gallbladder, pancreas, liver, spleen, abdominal aorta, and both kidneys....
Now it's wait for about a week and call for my results..
Love
Dee~~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
New to all this and already giving my GI fits!
Hi! I'm brand spanking new and just been diagnosed with CC. I've never had any disease before - not on any meds - considered very healthy and in great shape 
. I consider myself lucky that it only took three months to be correctly diagnosed from what I've been reading - however once the reality set in, well, that's a different story. My GI wanted to immediately start me on Entocort - I don't want to take steroids even a lower dose one because of the possible damage (Dr. says side effects and damage are considered rare - well, honey, what I got is also considered RARE!) Then he suggested Asacol - again I'm concerned with the possible resulting damage - renal failure and interstitial nephritis. I asked if there were any natural remedies since he claimed to be the expert on CC and had the most patients of any dr.s in the practice - he huffed back that he was a SCIENTIST not a naturalist. I am scared to try the two things he's offered - any suggestions? I just can't accept treating the symptoms - I want to know why I got this - I had been taking a supplement with H.A. and collagen in it - I wonder if anyone has looked at a connection between that? There are many supplements with collagen in them - one sited Bovine as it's source --- I just wonder if an excess of collagen could cause this? Anyone know?
. I consider myself lucky that it only took three months to be correctly diagnosed from what I've been reading - however once the reality set in, well, that's a different story. My GI wanted to immediately start me on Entocort - I don't want to take steroids even a lower dose one because of the possible damage (Dr. says side effects and damage are considered rare - well, honey, what I got is also considered RARE!) Then he suggested Asacol - again I'm concerned with the possible resulting damage - renal failure and interstitial nephritis. I asked if there were any natural remedies since he claimed to be the expert on CC and had the most patients of any dr.s in the practice - he huffed back that he was a SCIENTIST not a naturalist. I am scared to try the two things he's offered - any suggestions? I just can't accept treating the symptoms - I want to know why I got this - I had been taking a supplement with H.A. and collagen in it - I wonder if anyone has looked at a connection between that? There are many supplements with collagen in them - one sited Bovine as it's source --- I just wonder if an excess of collagen could cause this? Anyone know?Hi, and welcome to our support group.
By "H.A.", are you referring to hyaluronic acid? If so, then the answer to your question is, (to the best of my knowledge), unequivocally no. Hyaluronic acid, (like collagen), is an essential part of our bodies. We couldn't survive without either one of them. Supplements aren't the only things that contain collagen. Many foods are full of it. Jello, for example is mostly gelatin. Gelatin is simply processed collagen.
Not only that, but CC is only one of at least six variations of this disease, and only two of them present with thickened collagen layers, as a diagnostic marker. What you have eaten in the past does not matter. What you eat in the future, does matter, if you want to treat this disease without taking any meds. Many of us here are symptom free, by diet alone. Most of us avoid gluten, dairy products, and about half of us also have to avoid soy. Some of us have other food intolerances that we also have to avoid, but treatment by diet is doable, even though most GI docs will argue til they are blue in the face, that diet has nothing to do with MC.
To answer your question, you developed this disease because some traumatic event triggered a gene that you have, that predisposes you to the disease. When that happened, it is almost certain that another gene was triggered that caused you to now be gluten sensitive. This triggering event can be due to many possibilities, such as any form of enteritis, (such as the flu, parasites, a bacterial infection, a viral infection), the use of NSAIDs, stopping a smoking habit, and/or many medications, such as certain PPIs, SSRIs, etc. Some of us know what caused our MC, and some do not. There are also probably unknown triggers. Once it is triggered, however, controlling it is a lifetime responsibility, except for a very, very few, who are lucky enough to experience spontaneous remission. The rest of us have to control our symptoms by either diet, or meds.
If you really want to try a natural remedy, boswellia shows promise, and seems to work for some patients with IBDs. However, enough of it to adequately provide treatment would be prohibitively expensive, unless money is no object. The simplest, (and safest), route, is to simply remove all food intolerances from your diet, if you want to avoid the use of meds. Remember, natural remedies are also meds, they're just not synthetically formulated.
Again, welcome aboard.
Tex
By "H.A.", are you referring to hyaluronic acid? If so, then the answer to your question is, (to the best of my knowledge), unequivocally no. Hyaluronic acid, (like collagen), is an essential part of our bodies. We couldn't survive without either one of them. Supplements aren't the only things that contain collagen. Many foods are full of it. Jello, for example is mostly gelatin. Gelatin is simply processed collagen.
Not only that, but CC is only one of at least six variations of this disease, and only two of them present with thickened collagen layers, as a diagnostic marker. What you have eaten in the past does not matter. What you eat in the future, does matter, if you want to treat this disease without taking any meds. Many of us here are symptom free, by diet alone. Most of us avoid gluten, dairy products, and about half of us also have to avoid soy. Some of us have other food intolerances that we also have to avoid, but treatment by diet is doable, even though most GI docs will argue til they are blue in the face, that diet has nothing to do with MC.
To answer your question, you developed this disease because some traumatic event triggered a gene that you have, that predisposes you to the disease. When that happened, it is almost certain that another gene was triggered that caused you to now be gluten sensitive. This triggering event can be due to many possibilities, such as any form of enteritis, (such as the flu, parasites, a bacterial infection, a viral infection), the use of NSAIDs, stopping a smoking habit, and/or many medications, such as certain PPIs, SSRIs, etc. Some of us know what caused our MC, and some do not. There are also probably unknown triggers. Once it is triggered, however, controlling it is a lifetime responsibility, except for a very, very few, who are lucky enough to experience spontaneous remission. The rest of us have to control our symptoms by either diet, or meds.
If you really want to try a natural remedy, boswellia shows promise, and seems to work for some patients with IBDs. However, enough of it to adequately provide treatment would be prohibitively expensive, unless money is no object. The simplest, (and safest), route, is to simply remove all food intolerances from your diet, if you want to avoid the use of meds. Remember, natural remedies are also meds, they're just not synthetically formulated.
Again, welcome aboard.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks Tex for your quick reply!
My doc says my Collagenous Colitis is not a gluten sensitive colitis - is that a standard line? I don't notice any reaction after eating things that have it (I don't eat many foods that would have it anyway but that's not on purpose - it's just that I prefer veggies, fruits and nuts - all of which I'm being careful with right now - kind of) but how would you know about the gluten sensitivity? And, that's terrible to hear about the nixing of soy - although I haven't had a problem after eating my high grain, high fiber cereal with soy milk - certainly not like other things that 'make you go right away after eating them'. Anyway - only answer when you have time - no hurry - it's nice to find a site with others who are in the same boat - I was feeling so all alone! Thanks again!
My doc says my Collagenous Colitis is not a gluten sensitive colitis - is that a standard line? I don't notice any reaction after eating things that have it (I don't eat many foods that would have it anyway but that's not on purpose - it's just that I prefer veggies, fruits and nuts - all of which I'm being careful with right now - kind of) but how would you know about the gluten sensitivity? And, that's terrible to hear about the nixing of soy - although I haven't had a problem after eating my high grain, high fiber cereal with soy milk - certainly not like other things that 'make you go right away after eating them'. Anyway - only answer when you have time - no hurry - it's nice to find a site with others who are in the same boat - I was feeling so all alone! Thanks again!