Prep went fine. Did the Osmoprep like before and it worked just as well as the first time. phew!!
Went in for my colonoscopy and of course burst into tears once the nurses wheeled me in the room and asked how i have been doing. Doctor comes in and says he will find whatever it is that is bothering me and off to la-la land i go.
Wake up in recovery with hubby and the doctor comes in and tells me the dreaded words 'nothing found' but he took a bunch of biopsies this time (last doc had only taken 2 which found the inflammation and gave me the original MC diagnosis). He said he could tell there was inflammation and he is hoping the biopsies will tell him something more. No UC or Crohns seen. He gave me a script for Lomotil to take in addition to the Entocort until he gets the biopsy results back. I asked him what would he do if they come back normal? He said 'well then i guess it could just be severe IBS'....grreeaatt.
I asked him about the gluten free diet and the enterolab results. He pretty much laughed it off and said they were a joke and not to bother with the diet. Again, not making me very happy.
I am very disappointed and sad about the end results of this day. I was nervous to go to begin with and of course what i thought may happen did happen.
We shall see what comes back with the biopsies.
SHould i continue with the GF diet or should i just stop everything completely as the GI says? I have not seen any improvement so i am really torn here...
ugh.
Back from the second colonoscopy today.....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Back from the second colonoscopy today.....
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Erin----I have to say this---find another GI----and please forgive me for saying this----thats the worse reply *severe IBS*and sorta making fun @ the idea of a special diet!!!!!! and other testing!!!!!
U see I wasted about 7 years with a real
GI---
Then a very dear friend---whose brother is a doctor in New York City recommended the GI that got me back to living---
I wish the very best for U----cus this ailment can really be a pain in the *buttocks* and stress ya body to no-end~~~~
Barbara
U see I wasted about 7 years with a real
GI---Then a very dear friend---whose brother is a doctor in New York City recommended the GI that got me back to living---
I wish the very best for U----cus this ailment can really be a pain in the *buttocks* and stress ya body to no-end~~~~
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
I agree, i was so disappointed as he seemed so good up until today....
I know what you mean about the 'severe IBS' comment...what a useless way of saying i don't know what's wrong with you...
My family thinks i need to now go into Boston or even to a Mayo clinic.. i am so frustrated right now....
I know what you mean about the 'severe IBS' comment...what a useless way of saying i don't know what's wrong with you...
My family thinks i need to now go into Boston or even to a Mayo clinic.. i am so frustrated right now....
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Erin,
Sorry that today seemed so disappointing, but if he could see faint evidence of inflammation, and the pathologist who prepares and examines the biopsy slides is familiar with diagnosing MC, trust me, the diagnosis will be MC. His, (the GI doc's), attitude about Enterolab, and the diet, is quite common among uninformed GI docs, unfortunately, so while that's frustrating, it's certainly not surprising.
Several of us here, who used diet alone, took about a year to achieve remission, so assuming that the diagnosis will be MC, whether or not you should continue the diet depends on what your plans are for long-range control of your symptoms. It's tough to predict what he may do about meds, once he gets the diagnosis, but whatever he does, even if you are able to achieve remission before the end of the treatment regimen ends, it's for sure that your symptoms will return after a week or so following the end of the treatment, unless you then use another med, at reduced rates, for a maintenance treatment. Since you already have a head start on the diet, though, if you plan to use diet for long term control, then you would be way ahead of the game to continue the diet, otherwise, you would have to start over at some point down the line. It takes a while for the gut to heal, and we are all different in that respect. Also, as you have noticed, some of us require a combination diet and meds, in order to get control of our symptoms.
No matter what the diagnosis shows, a GF Diet is still a healthier diet than what the general population consumes, and there is no way that it can harm you, regardless or whether or not you are gluten sensitive.
Knowing what I do now, though, if I were in your shoes, I don't believe I would bother telling him that I was using any type of diet, along with the meds that he prescribes, since he already "knows" that control of symptoms by diet alone is a big joke. If he asks, though, I would tell him the truth, I just wouldn't volunteer that information, since he will automatically think of you as a sucker for "sham" treatment schemes, if he realizes what you're doing.
Chin up - you've done your part. The ball is in your doctor's court now, and we'll see how good he is at his job. The bottom line is: everything is on track - you'll get your diagnosis in a week or so.
Tex
P S I was reluctant to point out that "The Emperor Has No Clothes", since you've already had such a bad experience with a previous GI doc, but since Barbara had the guts to say it, I'll have to admit that I agree with her. The guy's attitude sucks.
Sorry that today seemed so disappointing, but if he could see faint evidence of inflammation, and the pathologist who prepares and examines the biopsy slides is familiar with diagnosing MC, trust me, the diagnosis will be MC. His, (the GI doc's), attitude about Enterolab, and the diet, is quite common among uninformed GI docs, unfortunately, so while that's frustrating, it's certainly not surprising.
Several of us here, who used diet alone, took about a year to achieve remission, so assuming that the diagnosis will be MC, whether or not you should continue the diet depends on what your plans are for long-range control of your symptoms. It's tough to predict what he may do about meds, once he gets the diagnosis, but whatever he does, even if you are able to achieve remission before the end of the treatment regimen ends, it's for sure that your symptoms will return after a week or so following the end of the treatment, unless you then use another med, at reduced rates, for a maintenance treatment. Since you already have a head start on the diet, though, if you plan to use diet for long term control, then you would be way ahead of the game to continue the diet, otherwise, you would have to start over at some point down the line. It takes a while for the gut to heal, and we are all different in that respect. Also, as you have noticed, some of us require a combination diet and meds, in order to get control of our symptoms.
No matter what the diagnosis shows, a GF Diet is still a healthier diet than what the general population consumes, and there is no way that it can harm you, regardless or whether or not you are gluten sensitive.
Knowing what I do now, though, if I were in your shoes, I don't believe I would bother telling him that I was using any type of diet, along with the meds that he prescribes, since he already "knows" that control of symptoms by diet alone is a big joke. If he asks, though, I would tell him the truth, I just wouldn't volunteer that information, since he will automatically think of you as a sucker for "sham" treatment schemes, if he realizes what you're doing.
Chin up - you've done your part. The ball is in your doctor's court now, and we'll see how good he is at his job. The bottom line is: everything is on track - you'll get your diagnosis in a week or so.
Tex
P S I was reluctant to point out that "The Emperor Has No Clothes", since you've already had such a bad experience with a previous GI doc, but since Barbara had the guts to say it, I'll have to admit that I agree with her. The guy's attitude sucks.
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Kellyerin222
- Adélie Penguin
- Posts: 88
- Joined: Fri Feb 29, 2008 12:35 pm
- Location: Granger, Indiana
- Contact:
Erin,
I am very glad to hear how things went-- I actually thought about you this morning and was hoping your colonoscopy went well for you with no complications. Glad you’re done with the prep--- those are difficult days.
I can completely understand where you are coming from and it seems we have a lot in common as you have stated before. When the Doctor came back and said all looked good I was not sure if I should sigh or feel bad, lol. Did you get any photos of your colonoscopy? I have photos of mine (would probably gross you guys out if I posted them, lol) and the reason I am asking is I noticed in my colonoscopy it did look good, but in one photo I thought (well to me) that it just looked more red then the other photos and just-- different. Of course I am not a GI and if he said it looked ok, then who was I to question him. But you said that your GI said it looked good, but he could tell inflammation and that’s why I am asking if you got photos.
I am glad he took the biopsies and will be looking forward to how they turn out. You are so right about the "severe IBS" thing. On my consult the Doctor said Crohn’s, Microscopic colitis or severe IBS-- I did tell him in my consult I do NOT think this is IBS-- even if you put "severe" in front of it. I am not saying those with IBS do not have rough issues to deal with, actually I have known some individuals with IBS, but from what they went through and my experience of what I am going through is different. Also from my research I have been finding out that the diagnosis of IBS in some cases is just an umbrella diagnosis when they really do not know what is going on with you.
When you said the last Doctor took two biopsies and found the inflammation, did the Doctor state any specific type of inflammation? Mine came back as "nonspecific" and boy does that irritate me, lol. Will sure like to hear the Doctor explanation on "nonspecific". Looking forward to hearing the results of your biopsies!!
As far as the gluten free diet I wish I could be of more help to you there, but I am sure others that are familiar with that will provide more guidance. I have never tried it myself and it is only until recently that I am learning more about it.
Have you tried the Lomotil before? There was one semester during finals I called my family physician and asked for something to help me so I could attend finals without worries. I took an ungodly number of Imodium and it did nothing for me and he called in 30 Lomotil for me and they actually worked for me-- I hope they work well for you.
I am glad the colonoscopy went well without any complications!
Kelly
I am very glad to hear how things went-- I actually thought about you this morning and was hoping your colonoscopy went well for you with no complications. Glad you’re done with the prep--- those are difficult days.
I can completely understand where you are coming from and it seems we have a lot in common as you have stated before. When the Doctor came back and said all looked good I was not sure if I should sigh or feel bad, lol. Did you get any photos of your colonoscopy? I have photos of mine (would probably gross you guys out if I posted them, lol) and the reason I am asking is I noticed in my colonoscopy it did look good, but in one photo I thought (well to me) that it just looked more red then the other photos and just-- different. Of course I am not a GI and if he said it looked ok, then who was I to question him. But you said that your GI said it looked good, but he could tell inflammation and that’s why I am asking if you got photos.
I am glad he took the biopsies and will be looking forward to how they turn out. You are so right about the "severe IBS" thing. On my consult the Doctor said Crohn’s, Microscopic colitis or severe IBS-- I did tell him in my consult I do NOT think this is IBS-- even if you put "severe" in front of it. I am not saying those with IBS do not have rough issues to deal with, actually I have known some individuals with IBS, but from what they went through and my experience of what I am going through is different. Also from my research I have been finding out that the diagnosis of IBS in some cases is just an umbrella diagnosis when they really do not know what is going on with you.
When you said the last Doctor took two biopsies and found the inflammation, did the Doctor state any specific type of inflammation? Mine came back as "nonspecific" and boy does that irritate me, lol. Will sure like to hear the Doctor explanation on "nonspecific". Looking forward to hearing the results of your biopsies!!
As far as the gluten free diet I wish I could be of more help to you there, but I am sure others that are familiar with that will provide more guidance. I have never tried it myself and it is only until recently that I am learning more about it.
Have you tried the Lomotil before? There was one semester during finals I called my family physician and asked for something to help me so I could attend finals without worries. I took an ungodly number of Imodium and it did nothing for me and he called in 30 Lomotil for me and they actually worked for me-- I hope they work well for you.
I am glad the colonoscopy went well without any complications!
Kelly
Currently waiting results to see exact problem.
Erin-
Hang in there! We are all here to help you navigate this minefield! Most of us have been there with un-helpful docs who "pooh-pooh" dietary changes/Enterolab etc. The fact is, this is your body, your symptoms, and you have to live with things day-in and day-out. I remember the first time I mentioned my intentions to my GI, and he blew them off. I went ahead, figuring I had nothing left to lose. It took a "long" time. I was on meds, as well, and was not able to ditch them until I was about 15 months GF. When I told my GI I no longer needed Asacol, he *suddenly* became interested, and ordered the bloodwork for celiac (which I threw out - no valid result could be expected after 15 mos GF - and there was *NO WAY* I would consent to a gluten challenge!) So we left it at "call me if you have further problems, otherwise come back in 10 years for a colonoscopy. Well I am due for a scope in 2 years. Haven't needed him or his meds since. So despite what the skeptics say, dietary changes can help - a lot! I just can't help but laugh at the logic "this is a disease of the digestive tract - but don't worry about changing what you eat - it won't make a difference"....
I am glad the prep went well - and on the bright side, no signs of UC or Crohn's is indeed good news! I'd put money on an MC diagnosis (not the IBS BS some docs try to pull...) You may want to see if he has any other Rx tricks up his sleeve for you to take while you try to improve things on your own. I am one of the few for whom Asacol worked - never had to try anything else. It *will* get better - it just takes a lot longer than it should....
Take care,
Mary
Hang in there! We are all here to help you navigate this minefield! Most of us have been there with un-helpful docs who "pooh-pooh" dietary changes/Enterolab etc. The fact is, this is your body, your symptoms, and you have to live with things day-in and day-out. I remember the first time I mentioned my intentions to my GI, and he blew them off. I went ahead, figuring I had nothing left to lose. It took a "long" time. I was on meds, as well, and was not able to ditch them until I was about 15 months GF. When I told my GI I no longer needed Asacol, he *suddenly* became interested, and ordered the bloodwork for celiac (which I threw out - no valid result could be expected after 15 mos GF - and there was *NO WAY* I would consent to a gluten challenge!) So we left it at "call me if you have further problems, otherwise come back in 10 years for a colonoscopy. Well I am due for a scope in 2 years. Haven't needed him or his meds since. So despite what the skeptics say, dietary changes can help - a lot! I just can't help but laugh at the logic "this is a disease of the digestive tract - but don't worry about changing what you eat - it won't make a difference"....
I am glad the prep went well - and on the bright side, no signs of UC or Crohn's is indeed good news! I'd put money on an MC diagnosis (not the IBS BS some docs try to pull...) You may want to see if he has any other Rx tricks up his sleeve for you to take while you try to improve things on your own. I am one of the few for whom Asacol worked - never had to try anything else. It *will* get better - it just takes a lot longer than it should....
Take care,
Mary
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Erin,
So sorry that you had an experience like that with your doc but as others have said, it is not unusual. i defrinitely would FIRE HIM and get someone who has a sense of understanding and a better bedside manner.
Keep with the GF diet. For me it has been an unusually long haul with the diet but it is finally paying off for me as well as having Entocort thrown in. Never could do Lomotil since it immediately would turn me into a real (rhymes with rich!)
Love, Maggie
So sorry that you had an experience like that with your doc but as others have said, it is not unusual. i defrinitely would FIRE HIM and get someone who has a sense of understanding and a better bedside manner.
Keep with the GF diet. For me it has been an unusually long haul with the diet but it is finally paying off for me as well as having Entocort thrown in. Never could do Lomotil since it immediately would turn me into a real (rhymes with rich!)
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hi Erin,
Sure sounds like MC to me! You have aleady gotten great advice here, so I'll just say "hang in there" and make up your own treatment plan. That's what most of us had to do to get well. In the case of MC, the GI doc is often just a necessary evil (to get the biopsy and meds) - we seem to get well in spite of them and not because of them! LOL!
Hugs,
Polly
Sure sounds like MC to me! You have aleady gotten great advice here, so I'll just say "hang in there" and make up your own treatment plan. That's what most of us had to do to get well. In the case of MC, the GI doc is often just a necessary evil (to get the biopsy and meds) - we seem to get well in spite of them and not because of them! LOL!
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Kellyerin222
- Adélie Penguin
- Posts: 88
- Joined: Fri Feb 29, 2008 12:35 pm
- Location: Granger, Indiana
- Contact:
Thanks for all the great responses...i was pretty down when i got home yesterday after that *wonderful* experience and it was nice to have a lot of support from everyone.
I am doing ok today. Tired and sore. I could tell he took a lot more biopsies than the first doctor as i had a lot of bleeding the rest of the afternoon and today i feel like i got a good kick in the stomach.
Decided to continue my diary/gluten free diet, give the Lomotil a try while continuing the Entocort and just see what he has to say next week.
I have to try and get this disease to stop getting me down all the time!
I am doing ok today. Tired and sore. I could tell he took a lot more biopsies than the first doctor as i had a lot of bleeding the rest of the afternoon and today i feel like i got a good kick in the stomach.
Decided to continue my diary/gluten free diet, give the Lomotil a try while continuing the Entocort and just see what he has to say next week.
I have to try and get this disease to stop getting me down all the time!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
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greengirl78
- Adélie Penguin
- Posts: 69
- Joined: Fri Feb 15, 2008 6:36 am
- Location: Massachusetts
Hi Erin...
Hope all is going better for you now. Is the Lomotil helping? I still find there are days when I need to use the Lomotil on top of the Entocort. Did your GI doc take you off the Entocort?
Hope all is going better for you now. Is the Lomotil helping? I still find there are days when I need to use the Lomotil on top of the Entocort. Did your GI doc take you off the Entocort?
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
Hi Greengirl..... I am doing better than you at the moment (you having the flu and all 
). The lomotil seems to be helping. He kept me on the Entocort as well as the Lomotil until i hear back from him on the biopsy results hopefully this week. Thanks for asking! 
). The lomotil seems to be helping. He kept me on the Entocort as well as the Lomotil until i hear back from him on the biopsy results hopefully this week. Thanks for asking! Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
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Kellyerin222
- Adélie Penguin
- Posts: 88
- Joined: Fri Feb 29, 2008 12:35 pm
- Location: Granger, Indiana
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Erin,
I am glad to hear that the lomotil is working for you-- I was wondering how that was working (as well as the Entocort). I am hoping this next week I will also hear back about my biopsy/pill cam results--- so in the same boat as you.
Again, I am glad the meds are helping
Kel
I am glad to hear that the lomotil is working for you-- I was wondering how that was working (as well as the Entocort). I am hoping this next week I will also hear back about my biopsy/pill cam results--- so in the same boat as you.
Again, I am glad the meds are helping
Kel
Currently waiting results to see exact problem.