possible crohns?
Question:
> I am so depresed right now, I literally cry myself to sleep,I cant live > with a possible right now. I am so stressed out, I need a second opinion > already, I never have been so depressed. I cant relax with the possible, > but I cant live with that hanging over my head. I am so confused.
It is very easy to get depressed when nobody has diagnosed you and you have no relief from symptoms. Patience is key. It will be ok in the end. I complained to my primary care doctor about symptoms numerous times over two years and she kept giving me IBS meds. None of them worked. Finally, I lost 65 pounds in 5 months and she FINALLY said "I guess it’s time to send you to a GI". I was like "Really?" (rolling eyes). I met with the GI, he ordered blood work, an Upper GI with Small Bowel Follow Through, a colonoscopy and stool tests. It took a few weeks to get in for the Upper GI, and even longer for the colonoscopy, but the stool sample results came in quickly. I had C-Difficile (bacterial infection in the colon that mimics UC). He ordered flagyl for me, which I started the next day. I was hopeful that it was the only problem, but he was pretty sure I had more than one thing going on. During the Upper GI, I heard the radiologist say something about the narrowing in my terminal ileum and pretty much knew then that it was Crohn’s. The GI called me a day or two after that and confirmed it, but didn’t want to start treatment until after the colonoscopy because he would have more information then. So, the day of my colonoscopy, it turned out that my terminal ileum was too inflamed for the scope to get through and he started me on prednisone that day. I was very depressed because I really wanted it to be just C-diff. No such luck. I tried a lot of different meds over the next year and none worked for me, although it stopped getting worse. So, we decided to try a resection. I went into remission (with Pentasa and Imuran) after the surgery. I have some D now, but we’re trying to figure out if it’s from the bile salt issues that occur after surgery or if I’m starting to flare again. He’s testing my Imuran blood level and may have me increase the Imuran because it’s based on weight and I weigh a lot more now than when I first was put on it. I am scheduled for another colonoscopy in August. He has started me on WelChol to bind the bile salts, in case it’s that. The WelChol does seem to help, if I take it with meals. If my Crohn’s is flaring again, I don’t know what we’re going to do for treatment (other than increase Imuran). I had severe reactions to Remicade and had NO response to prednisone (except the awful side effects). So, once again, I’m scared and angry and sad about it. As others have said, it’s not a fun disease to have, but it’s also not the end of life either. It takes some adjustments, to be sure. First thing I do when I walk into a new building is find the bathrooms. I avoid eating if I know I won’t be near a bathroom for an extended period of time. I have less energy than I used to have and I miss my old energy levels. But, there are worse things to have too. A lot worse. Denise
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"But the message(Gails ‘theory’) is important," Gail. Important for whom? How has your ‘theory’ helped you? Navid.
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Really Navid, Who is the message important for? EVERYONE. EVERYONE. and I mean EVERYONE. It can negate the illness for some, or minimize it for others, or take it’s course for the unbelievers. (maybe I don’t believe it either, now that you mention it). How has it helped me. Not in the way I would like it to have helped me. It has no discrimination as to where it should attack. The entire body becomes a battleground and we cannot pick and choose. Gail What else? Exercise, yes, it helps divert ones attention for a little while from the crohns. But that goes for any diversion, if one is able to manage it. Easier said than done, I will admit.
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> James Stein, > janetlynnperez > This illness will eventually spare no one. Not physicians, dentists, students,
Gail since you’ve taken to posting your so-called "theory" here in the NG, does this at least mean you’ve stopped emailing it to all new posters?
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Bruce, I do not post very often by e-mail and almost never to the groupl I do not have the strength for one on one postings. But the message is important, and more important for a study so that the theory could be proved or disproved once and for all. And then it can be accepted practice for those that feel the despair of a chronic illness. If I did not feel 100% percent certain of cause and effect, I would drop it. And may yet still, as the odds of accepting such a weird cause is hardly a large one. I have received some verification of the theory by e-mail, but almost anonymously, and I never tread on anyone’s privacy. Too bad I cannot cite something more acceptable, but this illness conforms to nothing acceptable. Gail Too bad the cure has such a weird connotation.
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My doctor was not in New York. I live in Alabama. Lynette
– Hide quoted text — Show quoted text -> what was the name of your doctor is he in new york?
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I am so depresed right now, I literally cry myself to sleep,I cant live with a possible right now. I am so stressed out, I need a second opinion already, I never have been so depressed. I cant relax with the possible, but I cant live with that hanging over my head. I am so confused.
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James Stein, janetlynnperez This illness will eventually spare no one. Not physicians, dentists, students, or ANYONE. Read on for my sure to be criticized post. Continue with whatever your treament is, but apply your mind too. CROHNS/MIND/BODY CONNECTION/LITERALLY. In regards to crohns, Dr. Burrill Crohn wrote "it includes all chronic inflammatory lesions of the intestines whose etiology is either unknown or attributable to an unusual physical agent." I say that agent is a stimulant. "There are no known predisposing factors" I say that is correct. I am a layman who observed the uncanny ability of a stimulant one person takes to be transferred in the form of pain , crohns etc. to another person in a mind connection that transcends distance. The website http://ascc.healingwell.com/ info/gailfaq.htm explains it further. With many more stimulants not mentioned that are harbingers of the illness, are Xanax, Buspar, Depakote, kava kava, st johns wort, flexeril, etc. etc. etc. To the scientific mind, I say this is not a correlation and effect, it is cause and effect. As can easily be determined by a study. Getting past the strangeness and almost unbelievable factors of this weird phenomenom is the first step. The following steps verify the theory. If anyone is interested in setting up a study and proving the efficicy of the theory, please contact me History can be made for the riddle that plagues mankind. the ultimate body/mind connection from the indisputable power of a stimulant. No physician should have to put up with this illness that can be curbed or negated if his scientific mind will accept and prove what may be considered impossible. In this case, there is no such word as impossible no matter the consensus. Gail Michael
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There is also a top notch specialist on par with the group at Mt. Sinai at Robert Wood Johnson in NJ who heads the Crohn’s and Colitis Center there, Dr. Kiron Das. The nice part is the hospital is also top notch in nursing care and quality. Fortunately, for those in the NY/NJ Metro area there are lots of good choices. 
mgbio – Hide quoted text — Show quoted text – > I experienced none of the below problems; it may be due to the fact that due > to a bed shortage, I was put in the neurology wing instead of the gastro > wing, though. > Either way, the Dr. George himself is top-notch. Another recommendation I > can make is Dr. John Carter at Bellevue, who finished his fellowship at Mt. > Sinai just recently, and is now heading the gastro department at Bellevue, > and also specializes in Crohn’s/Ulcerative. > Now, if you want to hear horror stories, I can tell you about how much fun I > had at Methodist, and why I almost had to have a colectomy because of the > incompetents they had on staff there… >Do keep in mind that while the doctors at Mt. Sinai are still excellent > the hospital itself has gone downhill. I have several good friends who have > had recent stays at Mt. Sinai due to Crohn’s Disease who said the hospital > is filthy, the nursing care substandard with meds not given on time, > including antibiotics and prednisone (which can be life threatening) as well > as a notable absence of sterile techniques that caused infection in PICC > lines on multiple occasions. Infected PICC lines are serious and can lead > to severe heart problems if left untreated. I would seriously think about > using doctors who are based out of this hospital. >mgbio >>>what was the name of your doctor is he in new york? >>If you live in New York, I highly recommend seeing Dr. James George. > He’s >>associated with Mount Sinai Hospital, he’s a specialist in Crohn’s > Colitis >>and Ulcerative Colitis, and he’s one of the finest doctors in the area > in >>regards to the illnesses. His office is located on 96th street on the > east >>side (right off the F.D.R.) >>And personal experience says to stay the hell out of Methodist Hospital, > in >>Brooklyn. They’ve no one on staff with any experience in colitis, and > you’ll >>recieve guesswork as much as care.
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yeah, i thought "culturing" had to do with looking for certain bacteria. for my pg biopsy, probably much the same for the gi ones, they somehow color or stain the tissue and examine the cell structure. jeff
– Hide quoted text — Show quoted text -> No culturing is needed or ever done for this situation. > Debs > In my quite 6 months or so. > The gold standand test is a small biopsy collected during an endoscopy exam. > which when examined in a lab shows the distinstive enlarged cells that > disrimiante crohn’s from colitis and other conditions. Slow though since it > requies colturing. This hass been the hall mark since the sixties though in > those it required exploatory surgery. > Though a good GI wo is experinced should make a ggod guess from the first > endoscopy exam and confirm with small biopsy. >>how long did it take you the doctors to diagnose you guys with Crohn’s >>disease. I am in the you might, but not have Crohn’s disease. > — > remove YOURFOOT before responding
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No culturing is needed or ever done for this situation. Debs – Hide quoted text — Show quoted text – > In my quite 6 months or so. > The gold standand test is a small biopsy collected during an endoscopy exam. > which when examined in a lab shows the distinstive enlarged cells that > disrimiante crohn’s from colitis and other conditions. Slow though since it > requies colturing. This hass been the hall mark since the sixties though in > those it required exploatory surgery. > Though a good GI wo is experinced should make a ggod guess from the first > endoscopy exam and confirm with small biopsy. >how long did it take you the doctors to diagnose you guys with Crohn’s >disease. I am in the you might, but not have Crohn’s disease.
– remove YOURFOOT before responding
Response:
I experienced none of the below problems; it may be due to the fact that due to a bed shortage, I was put in the neurology wing instead of the gastro wing, though. Either way, the Dr. George himself is top-notch. Another recommendation I can make is Dr. John Carter at Bellevue, who finished his fellowship at Mt. Sinai just recently, and is now heading the gastro department at Bellevue, and also specializes in Crohn’s/Ulcerative. Now, if you want to hear horror stories, I can tell you about how much fun I had at Methodist, and why I almost had to have a colectomy because of the incompetents they had on staff there…
> Do keep in mind that while the doctors at Mt. Sinai are still excellent
the hospital itself has gone downhill. I have several good friends who have had recent stays at Mt. Sinai due to Crohn’s Disease who said the hospital is filthy, the nursing care substandard with meds not given on time, including antibiotics and prednisone (which can be life threatening) as well as a notable absence of sterile techniques that caused infection in PICC lines on multiple occasions. Infected PICC lines are serious and can lead to severe heart problems if left untreated. I would seriously think about using doctors who are based out of this hospital. – Hide quoted text — Show quoted text -> mgbio >>what was the name of your doctor is he in new york? > If you live in New York, I highly recommend seeing Dr. James George. He’s > associated with Mount Sinai Hospital, he’s a specialist in Crohn’s Colitis > and Ulcerative Colitis, and he’s one of the finest doctors in the area in > regards to the illnesses. His office is located on 96th street on the east > side (right off the F.D.R.) > And personal experience says to stay the hell out of Methodist Hospital, in > Brooklyn. They’ve no one on staff with any experience in colitis, and you’ll > recieve guesswork as much as care.
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Who are you asking? It is impossible to know since you do not direct the question to anyone nor quote the person to whom you are asking. mgbio – Hide quoted text — Show quoted text – > what was the name of your doctor is he in new york?
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> what was the name of your doctor is he in new york?
If you live in New York, I highly recommend seeing Dr. James George. He’s associated with Mount Sinai Hospital, he’s a specialist in Crohn’s Colitis and Ulcerative Colitis, and he’s one of the finest doctors in the area in regards to the illnesses. His office is located on 96th street on the east side (right off the F.D.R.) And personal experience says to stay the hell out of Methodist Hospital, in Brooklyn. They’ve no one on staff with any experience in colitis, and you’ll recieve guesswork as much as care.
Response:
Do keep in mind that while the doctors at Mt. Sinai are still excellent the hospital itself has gone downhill. I have several good friends who have had recent stays at Mt. Sinai due to Crohn’s Disease who said the hospital is filthy, the nursing care substandard with meds not given on time, including antibiotics and prednisone (which can be life threatening) as well as a notable absence of sterile techniques that caused infection in PICC lines on multiple occasions. Infected PICC lines are serious and can lead to severe heart problems if left untreated. I would seriously think about using doctors who are based out of this hospital. mgbio – Hide quoted text — Show quoted text ->what was the name of your doctor is he in new york? > If you live in New York, I highly recommend seeing Dr. James George. He’s > associated with Mount Sinai Hospital, he’s a specialist in Crohn’s Colitis > and Ulcerative Colitis, and he’s one of the finest doctors in the area in > regards to the illnesses. His office is located on 96th street on the east > side (right off the F.D.R.) > And personal experience says to stay the hell out of Methodist Hospital, in > Brooklyn. They’ve no one on staff with any experience in colitis, and you’ll > recieve guesswork as much as care.
Response:
The emergency drs said theres nothing wrong with me. I could barley walk because I lost so much blood. I had to tell them to do a certain test. Some drs have alot to learn. He sent me to a general dr. SHe didnt know so she sent me to a GI dr. They did a biopsy. All this took about 2 weeks. Getting diagnosed isnt easy for them. – Hide quoted text — Show quoted text – > how long did it take you the doctors to diagnose you guys with Crohn’s > disease. I am in the you might, but not have Crohn’s disease.
Response:
In my quite 6 months or so. The gold standand test is a small biopsy collected during an endoscopy exam. which when examined in a lab shows the distinstive enlarged cells that disrimiante crohn’s from colitis and other conditions. Slow though since it requies colturing. This hass been the hall mark since the sixties though in those it required exploatory surgery. Though a good GI wo is experinced should make a ggod guess from the first endoscopy exam and confirm with small biopsy.
– Hide quoted text — Show quoted text -> how long did it take you the doctors to diagnose you guys with Crohn’s > disease. I am in the you might, but not have Crohn’s disease.
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I was so fortunate. It took me about one month to be diagnosed with Crohn’s. My regular doctor was the one who pursued it until we had an answer, even with a GI in the picture. Lynette
– Hide quoted text — Show quoted text -> how long did it take you the doctors to diagnose you guys with Crohn’s > disease. I am in the you might, but not have Crohn’s disease.
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what was the name of your doctor is he in new york?
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Yup, that is what my first GI tried to do to me except I was too persistent and refused to believe him because none of the IBS meds worked. mgbio – Hide quoted text — Show quoted text – > sometimes it is easier to label you as "ibs" and send you on your way…that > happened to me. > jeff >It will depend on how competent your GI is, how well the tests are > implemented (I had a test not implemented properly which set back the proper > dx over a year) and the right test being ordered at the right time. CD is a > very difficult disease to diagnose and my first GI missed it, despite > looking for it, because he did not re-order a test when he should have. >Good luck! >:) mgbio >>how long did it take you the doctors to diagnose you guys with Crohn’s >>disease. I am in the you might, but not have Crohn’s disease.
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same here, some made me worse, a LOT worse. jeff
> Yup, that is what my first GI tried to do to me except I was too
persistent and refused to believe him because none of the IBS meds worked. – Hide quoted text — Show quoted text -> mgbio > sometimes it is easier to label you as "ibs" and send you on your way…that > happened to me. > jeff >>It will depend on how competent your GI is, how well the tests are > implemented (I had a test not implemented properly which set back the proper > dx over a year) and the right test being ordered at the right time. CD is a > very difficult disease to diagnose and my first GI missed it, despite > looking for it, because he did not re-order a test when he should have. >>Good luck! >>:) mgbio >>>how long did it take you the doctors to diagnose you guys with Crohn’s >>>disease. I am in the you might, but not have Crohn’s disease.
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how long did it take you the doctors to diagnose you guys with Crohn’s disease. I am in the you might, but not have Crohn’s disease.
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It will depend on how competent your GI is, how well the tests are implemented (I had a test not implemented properly which set back the proper dx over a year) and the right test being ordered at the right time. CD is a very difficult disease to diagnose and my first GI missed it, despite looking for it, because he did not re-order a test when he should have. Good luck! mgbio – Hide quoted text — Show quoted text – > how long did it take you the doctors to diagnose you guys with Crohn’s > disease. I am in the you might, but not have Crohn’s disease.
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about 3 years and about 5 docs. jeff
– Hide quoted text — Show quoted text -> how long did it take you the doctors to diagnose you guys with Crohn’s > disease. I am in the you might, but not have Crohn’s disease.
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sometimes it is easier to label you as "ibs" and send you on your way…that happened to me. jeff
> It will depend on how competent your GI is, how well the tests are
implemented (I had a test not implemented properly which set back the proper dx over a year) and the right test being ordered at the right time. CD is a very difficult disease to diagnose and my first GI missed it, despite looking for it, because he did not re-order a test when he should have. – Hide quoted text — Show quoted text -> Good luck! > mgbio > how long did it take you the doctors to diagnose you guys with Crohn’s > disease. I am in the you might, but not have Crohn’s disease.
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