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Official Crohn's Disease Thread....
I did a search under Crohn's & I happened to see that some of us have this Chronic Disease.
I would Love to Start an Official Thread, where we can come to Talk, to Vent, to share stories, to Help each other.
I would Really Love for this Thread to Grow & for all of us to become Chat Buddies.
It is Nice to have someone else to share your experiences.
I was just wondering who else has it.
I got Dx Dec 1997. So I have had it for 10 years now.
I will be 30 in April.
It would be nice to gather up All the Crohnies on LIF.
For our own Little Support Group here on the Health Boards.
Take Care.
Geraldine.
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Message edited 3/24/2008 12:01:55 AM.
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Posted 3/23/08 10:13 PM  |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
Hi Geraldine-
there are a few other boards out there as well. Have you tried healingwell.com? Great resource as well.
Diagnosed 1983..one surgery last February. Unfortunately, still suffering but not anywhere as bad as it was before surgery.
My doc is Perry Gould in Garden City. I had the surgery at Mt. Sinai.
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| Posted 3/24/08 8:44 AM |
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lorich
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Member since 6/05 9987 total posts
Name:
Grammie says "Lora Gina"
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Re: Official Crohn's Disease Thread....
I'd like to check in from time to time... My Mom had ulcerative colitis & spent a lot of time with the Crohn's & Colitis Foundation..CCFA.org
I recall her having it all my life. It limited us from doing many things as a family. I remember any time we would go on vacation we always had to know where the bathroom was. In 1999 she had a Colostomy Surgery. It was amazing the freedom it gave her.
Message edited 3/24/2008 8:18:03 PM.
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| Posted 3/24/08 8:14 PM |
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cj7305
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Member since 8/05 12296 total posts
Name:
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Re: Official Crohn's Disease Thread....
Great idea! I also have Crohn's and was diagnosed in 1999, I am 31. I have had my ups and downs, my biggest problem being abcesses/fistulas. I have been in remission for a few years now (knock on wood) and am currently expecting my first baby. After much thought I stayed on my meds throughout my pregnancy. I am having a c-section (due to the Crohn's) at the end of the month.
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| Posted 3/24/08 8:42 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
Posted by cj7305
Great idea! I also have Crohn's and was diagnosed in 1999, I am 31. I have had my ups and downs, my biggest problem being abcesses/fistulas. I have been in remission for a few years now (knock on wood) and am currently expecting my first baby. After much thought I stayed on my meds throughout my pregnancy. I am having a c-section (due to the Crohn's) at the end of the month.
What meds are you on? I'm also on the fence about this. I'm TTCing and only on Pentasa which is doing nothing.
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| Posted 3/25/08 9:22 AM |
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cj7305
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Member since 8/05 12296 total posts
Name:
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Re: Official Crohn's Disease Thread....
Posted by Blu-ize
Posted by cj7305
Great idea! I also have Crohn's and was diagnosed in 1999, I am 31. I have had my ups and downs, my biggest problem being abcesses/fistulas. I have been in remission for a few years now (knock on wood) and am currently expecting my first baby. After much thought I stayed on my meds throughout my pregnancy. I am having a c-section (due to the Crohn's) at the end of the month.
What meds are you on? I'm also on the fence about this. I'm TTCing and only on Pentasa which is doing nothing.
I am on the lowest possible dose of Asacol, 6MP and sulfazine (because my eyes were being affected by the Crohn's). I've been on these for years only the amount has changed. After speaking to my specialist, I felt confident that staying with my meds was best beacause he said if I went off & had a flare up it could have been a major problem. They have also done lots of research on the topic there (Mt. Sinai) so I was comfortable taking his advice. Good luck!
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| Posted 3/25/08 12:00 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
6mp is the next step for me but I was hoping not to take any of the drugs while pregnant.
My flares are not that bad, but combine it with pregnancy, I guess it could be bad.
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| Posted 3/25/08 12:04 PM |
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Re: Official Crohn's Disease Thread....
Hello Everyone, I am soo Happy this Thread is starting to get going.
I got Dx in 98 had Surgery in July of 98, & still haven't been in Remission.
I have tried it All.
Even Remicade, which the Doc's do Not want to give me again, b/c it will keep me from having any more surgeries.
I am on 6-mp, I REFUSE to GO BACK ON PREDNiSONE.
I HATE that MED.
But I know that sooner or later, I will have to face it.
My excuse last year was the Wedding.
So now I have NO Excuses.
I get SO FRUSTRATED at Times.
Especially when I am waking up in the middle of the night to go to the bathroom.
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| Posted 3/25/08 12:14 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
sorry you don't feel well. Have you taken acidophilus? Any other natural remedies?
Sometimes the drugs just don't make you feel better.
How about Humira? There are more biologics coming on the market soon.
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| Posted 3/25/08 1:17 PM |
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Re: Official Crohn's Disease Thread....
Posted by Blu-ize
sorry you don't feel well. Have you taken acidophilus? Any other natural remedies?
Sometimes the drugs just don't make you feel better.
How about Humira? There are more biologics coming on the market soon.
Hi Susan, I have tried acidophilus, but that was it.
Nothing else.
I Hear ya, about the drugs not making you feel Better.
I am Trying my Best to be Compliant with my Meds. It is very hard, especially when you see no Results, or feel any Better.
Today, I guess was my Good day, I was home from work, & I only went to the Bathroom 4 times.
I also slept for like 3 hours in the afternoon.
The MD increase my B12 shots to three times a month b/c my B12 levels are soo Low.
Believe me I am feeling it.
I am soo TIRED!!!
I resorted to buying Baby Food stage 2-3 bananas, so I can get my K+. I hate eating bananas, & the MD know I WILL Not take any Poatassium supplements. They do not do well with my stomach.
It is bad b/c I am a RN so I know who to get around things.
And away with things.
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| Posted 3/25/08 10:42 PM |
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cj7305
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Member since 8/05 12296 total posts
Name:
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Re: Official Crohn's Disease Thread....
Posted by AngelAndTwizzler
I have tried it All.
Even Remicade, which the Doc's do Not want to give me again, b/c it will keep me from having any more surgeries.
I am on 6-mp, I REFUSE to GO BACK ON PREDNiSONE.
I HATE that MED.
But I know that sooner or later, I will have to face it.
My excuse last year was the Wedding.
So now I have NO Excuses.
I get SO FRUSTRATED at Times.
Especially when I am waking up in the middle of the night to go to the bathroom.
I am sorry you are having a tough time .I hear you about the prednisone. WHen I was on it I loved it at first, I swear I felt like Wonder Woman but then after a while the nasty side effects began. It can be a very difficult drug to be on. I also did Remicade infusions for a while, I believe they did help me. My last one was a few years ago. Do you have good doctors? Have you tried seeing a specialist from Mount Sinai in the city? They do a ton of research on Crohn's there. I hope you start feeling better soon!
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| Posted 3/25/08 11:06 PM |
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Re: Official Crohn's Disease Thread....
This is my Second GI MD.
My First was when I had my Surgery.
Then I started working, & switched to my Own Insurance, & Changed MD's.
I have Empire PPO.
I never checked out Mount Sinai.
I am very Interested. Maybe I can get in there & make an appointment.
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| Posted 3/25/08 11:15 PM |
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Re: Official Crohn's Disease Thread....
Does anybody else have any Secondary Illnesses due to Crohn's???
I have Bad Arthritis. My Fingers always Kill me.
In the AM they are Swollen.
And they Ache Daily.
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| Posted 3/25/08 11:18 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
at Mt. Sinai there are a few groups. I saw Dr. Daniel Present and he has colleagues such as Dr. Chapman and there is another practice that's also very good with Dr. Rubin. I think there is one more doc that is in Dr. Present's practice but the name escapes me.
Dr. Present was one of the developers of the 6mp drugs. He's a big advocate of the med and swears by it. I didn't take it and instead had a resection. Glad I did because they took out a 10 lb intestinal mass out of me. It's like I gave birth.
I will probably go on it though.
If it comes down to surgery again (hope not) I went to Dr. Michael Harris (Mickey Harris). He rocked. I went to 4 surgeons before deciding on him. Nice guy and he was there everyday for me. I called him in the middle of the night at the hospital and he spoke to me.
Anyway, I'm sorry you are so sick.
My local GI is excellent and I don't have a need to go to Mt. Sinai now.
I get dry eye and dry skin. Two of my fingers are a big clubbed, but you wouldn't even know, but that is the only extraintestinal stuff that I have.
Message edited 3/26/2008 8:42:56 AM.
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| Posted 3/26/08 8:41 AM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
Geraldine, have you tried antibiotic therapy? Flagyl and Cipro?
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| Posted 3/26/08 8:45 AM |
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cj7305
=)
Member since 8/05 12296 total posts
Name:
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Re: Official Crohn's Disease Thread....
Posted by Blu-ize
at Mt. Sinai there are a few groups. I saw Dr. Daniel Present and he has colleagues such as Dr. Chapman and there is another practice that's also very good with Dr. Rubin. I think there is one more doc that is in Dr. Present's practice but the name escapes me.
Dr. Present was one of the developers of the 6mp drugs. He's a big advocate of the med and swears by it. I didn't take it and instead had a resection. Glad I did because they took out a 10 lb intestinal mass out of me. It's like I gave birth.
Yes, I go to Dr. Present's group, I see Dr. Marion, I absolutely love him but I believe they are all great. He helped me tremendously and set me up with one of the best colo-rectal surgeons years ago when I had a big problem with abcesses/fistulas. I was very sick and they really led me on the right path. I would strongly suggest at least going to the city for an appt. It is not convenient and they don't really take insurance, but it's worth it to me. I also have Empire PPO (NYS Govt Plan) and they reinbursed me 80% for my visits. You may be able to find someone out there that does take your plan.
As far as other conditions due to the Crohn's, I do get iritis (where the iris in your eye becomes inflamed) It was terrible but since I began sulfazine I have not had an issue with it. I also get terrible sciatica when I have a flare up.
Message edited 3/26/2008 11:56:31 AM.
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| Posted 3/26/08 11:54 AM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
I agree...going to Mt. Sinai is a royal PIA..but it was worth it.
I like Dr. Marion as well. They all saw me in the hospital.
Dr. Present charges something like $600 for an office visit I think. I sent it in to my insurance company and my out of pocket was $120. Dh and I sat at his desk before the exam. A resident or intern took copious notes the whole time and while we chatted he had a TV screen and was watching a colonoscopy being performed by an associate on one of his patients.
I don't know how he could see anything. It was in black and white!
I thought it was funny. Dr. Present has played golf with Mickey Mantle..we talked about the Yankees for 20 minutes!
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| Posted 3/26/08 12:51 PM |
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Re: Official Crohn's Disease Thread....
Thank you Ladies Soo much.
I will have to Look into see one of them.
They ALL sound Amazing.
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| Posted 3/27/08 2:18 AM |
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Re: Official Crohn's Disease Thread....
How has everyone been Feeling???
I have been Trying to Really Watch what I eat.
I have been having some Good Days.
What about you?
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| Posted 4/10/08 9:48 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
lots of stress so I've been feeling crappy...no pun..
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| Posted 4/11/08 8:36 AM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Official Crohn's Disease Thread....
officially flaring...I had to take entocort last night..feeling better today, just wiped out.
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| Posted 4/14/08 9:30 AM |
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