Hi All
Sorry to be so long in posting again. I am afraid I had too high hopes of my new GI. He is not the white knight that I was hoping he was. Saw him last week. Maybe I expected too much in the way of miracles or something. Thought that my nights spent on the loo would become a thing of the past. No such luck. Nothing much has changed.
Good news is that he took 4 tissue samples but no collagen showed up in the pathology report. Bad part is that his attitude seemed to change after the colonoscopy & I left his surgery quite upset. He said that my problems were caused by IBS. That I should take Imodium (which I have been doing without a lot of success) And also hang on for a while before going to the toilet. I almost laughed at that one. When I told him that my former GI had said CC can come & go he said that couldn't happen. (My GP disagrees) I got the impression that he did not think that my diagnosis in 2001 was correct. My old GI doc was the foremost in the field in my state & led the research work on bowel problems for nearly 30 years. There is no doubt that he knew what he was doing & would not make a mistake like that. In any case, the pathology tests proved it.
I don't think this guy knows as much about CC as I thought. The first time I saw him, before the colonoscopy, he said that he could not understand why I had been prescribed entocort because it was only prescribed for small bowel problems & last week he said that he had found out that it was after all. He seemed impatient & did not seem to want to spend the time to answer my questions. It was a sort case of "Here's your hat, what's your hurry" He also said "All these operations are not going to help" I told him that I had only had one & that I had no intention of having any more after my last experience. In any case, the operation was for prolapse not CC.
What with all this & my leg still sore I have felt so weepy & depressed all week that I didn't have the motivation to get online & tell you about what happened. Saw my GP this morning & I am having xrays of knee & foot on Monday & a bone density test as well. Have to make an appointment for that.
Well have got that off my chest.
Love
Liz
expected too much
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Liz
- Rockhopper Penguin
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expected too much
A smile is a light in the window of your face that shows that your heart is at home
Hi Liz,
I'm probably the only one besides you who's awake tonight. Sorry you are feeling so down. I know that's not your personality to be down like that, so it must really be getting to you, and no wonder!
Anyway, I just wanted to drop a note to tell you that I'll be thinking of you. I really need to get some sleep tonight, and it's late.
My sister is coming tomorrow, and I have a celiac support group meeting in the early afternoon while she's here with Mom, so I need to get several things done before I leave for that, so I'll have to be up early.
Please feel free to write those types of messages any time you feel the need. Often I feel so much better just writing them, even before anyone else has been awake to read them.
Best wishes,
Luce
I'm probably the only one besides you who's awake tonight. Sorry you are feeling so down. I know that's not your personality to be down like that, so it must really be getting to you, and no wonder!
Anyway, I just wanted to drop a note to tell you that I'll be thinking of you. I really need to get some sleep tonight, and it's late.
My sister is coming tomorrow, and I have a celiac support group meeting in the early afternoon while she's here with Mom, so I need to get several things done before I leave for that, so I'll have to be up early.
Please feel free to write those types of messages any time you feel the need. Often I feel so much better just writing them, even before anyone else has been awake to read them.
Best wishes,
Luce
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Liz
- Rockhopper Penguin
- Posts: 1540
- Joined: Tue Sep 13, 2005 5:23 pm
- Location: Qld Australia
- Contact:
Hi Lucy
Thanks so much for that. I am feeling pretty fragile at the moment. Tend to burst into tears at the slightest provocation, or even just out of the blue for no reason what so ever. I think that things have just caught up with me & I seem to have sort of slipped into some sort of depression. I am crying even while I am writing this & I can't seem to stop. There are also a couple problems within my family that I have not mentioned before but are causing a lot of heartache. It goes back along way & I don't know that they will ever be resolved.
My regular GP is being very supportive for which I am eternally grateful. I have only just gotten to see her today again & I wish I had gone back to her before this. She is so understanding & I know she will help me through this as she did when I was so sick after my operation a couple of years ago. She was wonderful, called me each day to see how I was going etc. She said that I have handled all the problems & things in my life that have gone a bit awry pretty well & run around doing others things so much that it is time I had some time to just concentrate getting me & my body well again. I think she is right.
Just going to be guided by her & see what happens.
Love
Liz
Thanks so much for that. I am feeling pretty fragile at the moment. Tend to burst into tears at the slightest provocation, or even just out of the blue for no reason what so ever. I think that things have just caught up with me & I seem to have sort of slipped into some sort of depression. I am crying even while I am writing this & I can't seem to stop. There are also a couple problems within my family that I have not mentioned before but are causing a lot of heartache. It goes back along way & I don't know that they will ever be resolved.
My regular GP is being very supportive for which I am eternally grateful. I have only just gotten to see her today again & I wish I had gone back to her before this. She is so understanding & I know she will help me through this as she did when I was so sick after my operation a couple of years ago. She was wonderful, called me each day to see how I was going etc. She said that I have handled all the problems & things in my life that have gone a bit awry pretty well & run around doing others things so much that it is time I had some time to just concentrate getting me & my body well again. I think she is right.
Just going to be guided by her & see what happens.
Love
Liz
A smile is a light in the window of your face that shows that your heart is at home
Liz,
If I were you I'd never darken the door of that particular GI doc again.
I'm so glad you have a GP who is willing and able to work with you. Perhaps she could do some research and find a better GI for you. It's awful to be so hopeful and then have those hopes dashed against the rocks.
You come on here and rant, rave, whine, complain - whatever - all you like. I hope it helps to get some of it out.
Love, Shirley
If I were you I'd never darken the door of that particular GI doc again.
I'm so glad you have a GP who is willing and able to work with you. Perhaps she could do some research and find a better GI for you. It's awful to be so hopeful and then have those hopes dashed against the rocks.
You come on here and rant, rave, whine, complain - whatever - all you like. I hope it helps to get some of it out.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Dear Liz,
I am so sorry to hear about your troubles. I also got quite down this week after seeing my rheumatologist and finding that my osteopenia is progressing. It just seems impossible to get through to some medical doctors and, more often than not, I leave their offices kind of depressed and feeling hopeless. It's horrible to feel alone with your problem and to feel like there's not a doctor out there that can help you get well. I think it's really only normal to feel a bit depressed as you do! This too will pass, but in the meantime, it is a drag! I think you made the right decision to go back to a supportive doctor!
Even though I am new here, I just want you to know I am with you, thinking of you, and sending good vibes your way!
Warmly, Celia
I am so sorry to hear about your troubles. I also got quite down this week after seeing my rheumatologist and finding that my osteopenia is progressing. It just seems impossible to get through to some medical doctors and, more often than not, I leave their offices kind of depressed and feeling hopeless. It's horrible to feel alone with your problem and to feel like there's not a doctor out there that can help you get well. I think it's really only normal to feel a bit depressed as you do! This too will pass, but in the meantime, it is a drag! I think you made the right decision to go back to a supportive doctor!
Even though I am new here, I just want you to know I am with you, thinking of you, and sending good vibes your way!
Warmly, Celia
I beleive in magic!
Hi Liz!
Sorry to hear that you're down and that your GI doc did not turn out to be the knight in shining armor. At least you have a great GP, and she can prescribe the Entocort for you, right? So many here over the years have had much better luck with their primary care docs than with their specialists.
Your new GI doc is just plain WRONG. MC DOES come and go, and it is possible that he could have missed it, too, depending upon where he took the biopsies. Also, can you get a copy of the pathology report? MC can also be present without collagen.. I know you had collagen the first time, but this time perhaps you had just infiltrations of lymphocytes, which is also MC. It would be interesting to see that report.
Phooey on that GI doc!! What a JERK. He takes the cake with his comment that you should try holding back the D longer. That is the most ridiculous thing I have ever heard about MC, and we have heard a lot of dumb stuff. I think someone needs to check his credentials. Seriously, I'm not kidding.
Anyway, please try to cheer up. I know it is difficult in the face of family problems, but often the best we can do is to be there for others. We can't change them, unfortunately. Although it would be lovely if it were possible. Of course, I don't really know what the problems are, but rest assured that we are all "rooting" for you and your family.
Love
Polly
Sorry to hear that you're down and that your GI doc did not turn out to be the knight in shining armor. At least you have a great GP, and she can prescribe the Entocort for you, right? So many here over the years have had much better luck with their primary care docs than with their specialists.
Your new GI doc is just plain WRONG. MC DOES come and go, and it is possible that he could have missed it, too, depending upon where he took the biopsies. Also, can you get a copy of the pathology report? MC can also be present without collagen.. I know you had collagen the first time, but this time perhaps you had just infiltrations of lymphocytes, which is also MC. It would be interesting to see that report.
Phooey on that GI doc!! What a JERK. He takes the cake with his comment that you should try holding back the D longer. That is the most ridiculous thing I have ever heard about MC, and we have heard a lot of dumb stuff. I think someone needs to check his credentials. Seriously, I'm not kidding.
Anyway, please try to cheer up. I know it is difficult in the face of family problems, but often the best we can do is to be there for others. We can't change them, unfortunately. Although it would be lovely if it were possible. Of course, I don't really know what the problems are, but rest assured that we are all "rooting" for you and your family.
Love
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Liz!
I have also had many problems with GI doctors and totally understand where you are coming from. It sucks to go to a "specialist" and wind up knowing more than they do. I'm glad your GP understands and is supportive. I have had to follow the same route as you. My GP doesn't know it all about MC but will listen and read the articles I bring to him. He has realized that I am in tune to my body and just need him to prescribe meds and listen to me.
Hang in there. The light at the end of the tunnel will get brighter with each passing day!
Remember, as family and friends, we are here with big shoulders to lean on and cry on! We are here for you whenever you need us!
All my love,
Mars
I have also had many problems with GI doctors and totally understand where you are coming from. It sucks to go to a "specialist" and wind up knowing more than they do. I'm glad your GP understands and is supportive. I have had to follow the same route as you. My GP doesn't know it all about MC but will listen and read the articles I bring to him. He has realized that I am in tune to my body and just need him to prescribe meds and listen to me.
Hang in there. The light at the end of the tunnel will get brighter with each passing day!
Remember, as family and friends, we are here with big shoulders to lean on and cry on! We are here for you whenever you need us!
All my love,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Gee Liz.....I think I'd find another GI. I am sorry he treated you you that way. As Polly said "what a jerk" not to be mean to doctors but some deserve it when they don't treat us like humans. We are here for you Liz. Everyone was so nice to me when I was so depressed awhile back with all my financial problems.....still have some of the problems but eveyone on this board made the difference. I hope you feel better soon Liz. 
Hi Liz,
I was sure something was wrong, when you didn't post for so long. What can I say? Everyone is right. That GI evidently found his medical license in a box of Cracker Jacks.
His ignorance about Entocort, and the occasional sequencing of CC and LC, is totally unacceptable. As Polly mentioned, CC can segue into LC, or vice versa, and back again, at random. If he didn't know that, he doesn't know enough about the disease to be treating it. I wouldn't even consider ever going back to him, unless I felt like mooning the SOB.
You have every right to feel disappointed and depressed, but please try to get past that. If your GP can't find a "real" GI for you, hopefully she can prescribe Entocort, so that you can get back to a more normal lifestyle.
I'm still shaking my head about that dumb-assed GI. There's simply no excuse for such incompetence.
Love,
Wayne
I was sure something was wrong, when you didn't post for so long. What can I say? Everyone is right. That GI evidently found his medical license in a box of Cracker Jacks.
His ignorance about Entocort, and the occasional sequencing of CC and LC, is totally unacceptable. As Polly mentioned, CC can segue into LC, or vice versa, and back again, at random. If he didn't know that, he doesn't know enough about the disease to be treating it. I wouldn't even consider ever going back to him, unless I felt like mooning the SOB.
You have every right to feel disappointed and depressed, but please try to get past that. If your GP can't find a "real" GI for you, hopefully she can prescribe Entocort, so that you can get back to a more normal lifestyle.
I'm still shaking my head about that dumb-assed GI. There's simply no excuse for such incompetence.
Love,
Wayne
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.
Liz,
Now it is tomorrow there (maybe) and I hope you are feeling better. I'm so sorry you had that experience with the GI. That's about all you need when you're feeling lousy anyway! I hope your PCP will prescribe some entocort so you can get back on track. I took 9 mg a day for a year before tapering off and, other than the annoying side effects, it did the trick. My GI never even suggested I get off, I decided that myself when I thought I might be okay on my own and wanted to try. Although I am only a sample of one and not a medical doctor, I would say that there's no rush to get off of it. Some can control their symptoms with diet, and some need the meds! No harm either way. There IS harm in seeing a physician who belittles your symptoms and leaves you an emotional as well as physical wreck. Leave that guy in your dust!
I hope your leg will be okay. It could be that we just take longer to heal at our age. Hang in there. Better days are ahead! (have to be!!!)
Now it is tomorrow there (maybe) and I hope you are feeling better. I'm so sorry you had that experience with the GI. That's about all you need when you're feeling lousy anyway! I hope your PCP will prescribe some entocort so you can get back on track. I took 9 mg a day for a year before tapering off and, other than the annoying side effects, it did the trick. My GI never even suggested I get off, I decided that myself when I thought I might be okay on my own and wanted to try. Although I am only a sample of one and not a medical doctor, I would say that there's no rush to get off of it. Some can control their symptoms with diet, and some need the meds! No harm either way. There IS harm in seeing a physician who belittles your symptoms and leaves you an emotional as well as physical wreck. Leave that guy in your dust!
I hope your leg will be okay. It could be that we just take longer to heal at our age. Hang in there. Better days are ahead! (have to be!!!)
kathy
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Liz
- Rockhopper Penguin
- Posts: 1540
- Joined: Tue Sep 13, 2005 5:23 pm
- Location: Qld Australia
- Contact:
Thank you all so much for your love & support. It means so much to know that there are people out there who understand.
My neighbour at the back who is a nurse has suggested another fellow in Brisbane & also a specialist Physician that she thinks may be able to help me. I will have a talk with my GP & see what she says. She thinks that there are other issues that need attending to as well. The thing though is I don't really want to chance another GI at the moment. Just couldn't face another possible colonoscopy right now. Mouth is still pretty dry & sore from the last prep. Seemed to take all the lining off & then about & seven hours without water did not help.
I have always tried to just get on with it. Except when in the middle of a very bad flare, CC or the form of Colitis that I had before 2001 has rarely stopped me from doing anything that I really wanted to do. But I think I have come to the end of my tether, as it were. I know I will get on top of this blue funk that I am in. It just may, as my GP says, take a little time & attention directed at solving my own problems.
Love
Liz
My neighbour at the back who is a nurse has suggested another fellow in Brisbane & also a specialist Physician that she thinks may be able to help me. I will have a talk with my GP & see what she says. She thinks that there are other issues that need attending to as well. The thing though is I don't really want to chance another GI at the moment. Just couldn't face another possible colonoscopy right now. Mouth is still pretty dry & sore from the last prep. Seemed to take all the lining off & then about & seven hours without water did not help.
I have always tried to just get on with it. Except when in the middle of a very bad flare, CC or the form of Colitis that I had before 2001 has rarely stopped me from doing anything that I really wanted to do. But I think I have come to the end of my tether, as it were. I know I will get on top of this blue funk that I am in. It just may, as my GP says, take a little time & attention directed at solving my own problems.
Love
Liz
A smile is a light in the window of your face that shows that your heart is at home
Do you have your records from other colonoscopies? If you do... just take them to the new one. My latest GI doc (the one who put me on entocort) looked at the old colonoscopies and never required that I have another one. I told him he would have to shoot me first...LOL
He doesn't believe in doing work over again and even though it is a fairly simple procedure there is risk when you are knocked out for a procedure. He said there was no need for another colonoscopy when he could view the slides from the last one and I took him the report as well.
GI doc says there are too many gastro docs making big bucks off unnecessary colonoscopies! Gotta love that statement:)
grannyh
He doesn't believe in doing work over again and even though it is a fairly simple procedure there is risk when you are knocked out for a procedure. He said there was no need for another colonoscopy when he could view the slides from the last one and I took him the report as well.
GI doc says there are too many gastro docs making big bucks off unnecessary colonoscopies! Gotta love that statement:)
grannyh
Hi Liz,
It's been over 5 years since I went through all those tests, but I had to clean out either three or four times that I recall, over about a 60 day period, and I don't recall ever having a serious problem with dry mouth. Maybe they didn't tell me that I couldn't drink water--I don't remember.
I tried a different prep each time, (since each one made me sick), and the last one I used was GoLitely, which is a gallon of liquid, and is probably enough by itself, to prevent drymouth. Of course my tests were done in the late spring, except that the last one was done on the second day of summer, so it was cooler weather.
Isn't chewing gum supposed to help moisterize the mouth, or have I got this mixed up with something else?
I don't blame you for wanting to recuperate before even considering any additional tests. Those tests take a lot out of you, especially when you're sick to begin with.
Love,
Wayne
It's been over 5 years since I went through all those tests, but I had to clean out either three or four times that I recall, over about a 60 day period, and I don't recall ever having a serious problem with dry mouth. Maybe they didn't tell me that I couldn't drink water--I don't remember.
I tried a different prep each time, (since each one made me sick), and the last one I used was GoLitely, which is a gallon of liquid, and is probably enough by itself, to prevent drymouth. Of course my tests were done in the late spring, except that the last one was done on the second day of summer, so it was cooler weather.
Isn't chewing gum supposed to help moisterize the mouth, or have I got this mixed up with something else?
I don't blame you for wanting to recuperate before even considering any additional tests. Those tests take a lot out of you, especially when you're sick to begin with.
Love,
Wayne
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.