remission, but yet so much pain!! ?

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Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 9/20/2009 9:44 AM (GMT -7)   
Wednesday I went for my scope. Not fun but it needed to be done since it had been  5 years.
 
The doc said there was no crohn's showing AT ALL. Good news I thought. But why is it everytime I start my period I have like flare syptoms and always end up in the hospital. The docs say on my blood test no flare ups.
So I started my period Friday, the pain has been dealable. Untill this morning. I work up in the middle of my sleep and had a huge flare up. My stomach hurts so  much I can't stand up straight still.
 
Soo the nurse gave me a name of a disease call 'ENDOMETRIOSE' I did what research I can on side effects. seems like side effect would be like a flare up. I'm wondering if any of you heard of this or has had it.
 
Anything would be good right now. ... I'm just so darn fustrated!!!
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD
Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc
                         Predizone, tapered down from 10 pills 8 different times.(horrible side effects)
                         Lots more,list is way to long.
Unable to work last 2 years and counting. Hoping to get my life back soon. Minimum visit's to the ER is every 2 months, to stablize me and send me home. Been 5 years since my last colonoscopy.Got my apointment, Sept 16th. Sooo nervous for the results,in fear the CD has worsen.
--------------------------------------------------------------------------------------------------------------------------
Live life to the fullest with no regrets and only eat what you know what hurt you.   


chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/20/2009 10:25 AM (GMT -7)   
Yep, I have endometriosis. If it gets bad enough, they can do laproscopic surgery to remove the endo. It will come back, but will provide some relief. Also, being on birth control pills can help keep it under control. When I had periods (I use BC to stop my periods due to endo), I would get diarrhea and a lot of pain right before my period. It's how I knew I was about to start. And it happened all through remission.

Also, just because the scope was clear doesn't mean you're in remission. My scope 2 weeks ago was clear, but biopsies showed active crohn's. Plus, it could be in the small bowel.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission from 11/2003 to 7/2009
omeprazole 40mg, zoloft 100mg, apriso 1500mg, dicyclomine 3/day
dx with bipolar II 8/2009, re-diagnosed with bipolar I 9/09
Apparently allergic to lamictal...waiting on next rx


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 9/20/2009 10:36 AM (GMT -7)   
Hi... thanks so much for your reply. I am not even sure if the doc took biopsie to see if it is still active or not.. I really hope so but my apt is only Oct 24.
The doc checked my small bowel since it's where most of my crohn's is, she said there was nothing, not even an ulcer that I normal have all the time. I really hope a biopsie was taken. Sadly I suffer from migraines so they will not give me birth control pills, and I did the depro shot for 5 years. Made my crohn's all out of wack.
I made a gyno apt, but I also have to wait 3 months before I get to see her.
I'm glad to see there is still hope, you have 2 children, that's amazing!!!!
Thank you again for your reply, very much appreciated.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD
Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc
                         Predizone, tapered down from 10 pills 8 different times.(horrible side effects)
                         Lots more,list is way to long.
Unable to work last 2 years and counting. Hoping to get my life back soon. Minimum visit's to the ER is every 2 months, to stablize me and send me home. Been 5 years since my last colonoscopy.Got my apointment, Sept 16th. Sooo nervous for the results,in fear the CD has worsen.
--------------------------------------------------------------------------------------------------------------------------
Live life to the fullest with no regrets and only eat what you know what hurt you.   


chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/20/2009 2:12 PM (GMT -7)   
Not to bring you down, but both of my kids are adopted. I wasn't able to conceive. Endo DOES make it more difficult, but plenty of women with crohn's and plenty with endo are able to conceive.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission from 11/2003 to 7/2009
omeprazole 40mg, zoloft 100mg, apriso 1500mg, dicyclomine 3/day
dx with bipolar II 8/2009, re-diagnosed with bipolar I 9/09
Apparently allergic to lamictal...waiting on next rx


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 9/20/2009 5:17 PM (GMT -7)   
My recent colonoscopy was also clear, and my biopsies showed no disease in the colon/terminal ileum, so I also had a upper GI endoscopy and a small bowel follow through. Crohn's can be anywhere from mouth to anus, so there are other tests to be performed, assuming your doctor did take biopsies and they are clear.

I may be wrong, but there should be birth control options for people with frequent migraines. I suffer from occasional migraines (~6 per year) and regular headaches and have no problems with birth control, but you may want to talk to your OBGYN about other options. It really does make a world of difference. Even on birth control, my Crohn's is always worse during my period, but without birth control, I don't want to imagine how bad it would be.
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again.
Colonoscopy/endoscopy scheduled for 9/10; barium X-ray scheduled for 9/18
Currently taking: 4g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/20/2009 5:37 PM (GMT -7)   
My Crohn's is technically in remission, but I still go through periods where I have horrible stomach pains, like today.  I laid in the floor crying, trying to find a comfortable position (which I couldn't find), hoping I could throw up to make it better.  I was burning up so I took my temperature and it was only 97.3, which didn't make any sense. 
 
I too have (or had) endometriosis.  I've had two laporascopic surgeries.  The first only lasted about 18 months and then I had to have another, but that was in Feb 05 and I'm still doing well.  I'm taking Depo Provera to keep it in check.  It can come back, especially if the dr misses any, even a miniscule amount that will spread quickly.  It did make it much harder to dx my Crohn's, as we couldn't figure out which was causing the stomach pain.  I did have some fluid show up in my pelvic area on a CT or something, which made them suspect the endo before I saw the gyno to be sure. 
 
My husband's cousin had endo so badly that they didn't think she could have kids, but she saw a dr that specializes in high risk pregnancies and they cleaned her endo out really well and told her to hurry and get pregnant before the endo and scar tissue came back.  She has now had 2 kids.  Some people have no problems bearing children because of it and others can't have kids.  I think I probably could but have no desire to when I can barely take care of myself sometimes.   
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 9/20/2009 5:39 PM (GMT -7)   
Vitak
Thank you for your post!
Oh yes I forgot to mention because I have crohn's in the high stomach area that I also had the endoscopy done, and she said from top to bottom I was clear. she didn't mention about biopsie. We will see...
Maybe something new (last 4 years) has come out, birth control wise, my obgyn always told me, if I wanted kids birth control wasn't an option. But I'm sure your right, there are so many new meds out there.
But having to go to the ER for a morphine shot because your period is so bad, is just not normal. The pain was so bad like I said today, I couldn't even stand, seems like my periods get worse by the month. Because I usualy have an easy period after the second day, today is my 3rd day and I'm having flare like syptoms... still!
Thank you again for your post, it's highly appreciated!!! :) I am very happy to hear you got your pain under control for your periods, may I ask which birth control you use? Might be an option for me!
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD
Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc
                         Predizone, tapered down from 10 pills 8 different times.(horrible side effects)
                         Lots more,list is way to long.
Unable to work last 2 years and counting. Hoping to get my life back soon. Minimum visit's to the ER is every 2 months, to stablize me and send me home. Been 5 years since my last colonoscopy.Got my apointment, Sept 16th. Sooo nervous for the results,in fear the CD has worsen.
--------------------------------------------------------------------------------------------------------------------------
Live life to the fullest with no regrets and only eat what you know what hurt you.   


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 9/20/2009 6:36 PM (GMT -7)   
I currently take Tri-Sprintec, which is the generic version of Ortho Tri-Cyclen. I tried switching to the Low estrogen version of Ortho Tri-Cyclen once, but the pain was much worse, so I ended up switching back after two or three months.

If you have migraines with auras, you should not be taking birth control with estrogen. Some of the alternatives would be pills containing progesterone, Depo (which you said messed with your Crohn's), or an IUD. Obviously, the side effects vary for everyone, but I would think it is worth exploring your options.

Good luck!
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again.
Colonoscopy/endoscopy scheduled for 9/10; barium X-ray scheduled for 9/18
Currently taking: 4g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 9/20/2009 6:40 PM (GMT -7)   
ZenaWP
Thank you for your post, and words. My side effects seems allot like what you went through, except the docs see it's not my crohn's that flared and they send me home, never trying to figure out the problem is, like I was saying.. it was the prep nurse who has had this disease who told me to check it out, that it sounded allot like "endo"
I was on depro for 5 years, got off of it, and it ook 5 months being on my period and a specialist to stop the bleed, she also recommened not do take depro again.
I will for sure keep this thread going. I'm in for allot of work tomorrow trying to find a gyno to take me in right away.
Thank you so much again. there is some hope of having a kid,I'm just affarid I'll be pushed into having a child when I'm not ready (I'm getting married in 6 half months and being off of work for the last 2 years hasn't helped!)
is there are any other woman out there who as experince with this, please speak up I would love to hear everyone store. Maybe someone has advice with dealing with the pain until I see a doc.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD
Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc
                         Predizone, tapered down from 10 pills 8 different times.(horrible side effects)
                         Lots more,list is way to long.
Unable to work last 2 years and counting. Hoping to get my life back soon. Minimum visit's to the ER is every 2 months, to stablize me and send me home. Been 5 years since my last colonoscopy.Got my apointment, Sept 16th. Sooo nervous for the results,in fear the CD has worsen.
--------------------------------------------------------------------------------------------------------------------------
Live life to the fullest with no regrets and only eat what you know what hurt you.   


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 9/20/2009 6:42 PM (GMT -7)   
Vitak said...
I currently take Tri-Sprintec, which is the generic version of Ortho Tri-Cyclen. I tried switching to the Low estrogen version of Ortho Tri-Cyclen once, but the pain was much worse, so I ended up switching back after two or three months.

If you have migraines with auras, you should not be taking birth control with estrogen. Some of the alternatives would be pills containing progesterone, Depo (which you said messed with your Crohn's), or an IUD. Obviously, the side effects vary for everyone, but I would think it is worth exploring your options.

Good luck!

Thank you again! I will def explore my options for birth control, even if it's just to take to help the endo go into remission!

Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD
Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc
                         Predizone, tapered down from 10 pills 8 different times.(horrible side effects)
                         Lots more,list is way to long.
Unable to work last 2 years and counting. Hoping to get my life back soon. Minimum visit's to the ER is every 2 months, to stablize me and send me home. Been 5 years since my last colonoscopy.Got my apointment, Sept 16th. Sooo nervous for the results,in fear the CD has worsen.
--------------------------------------------------------------------------------------------------------------------------
Live life to the fullest with no regrets and only eat what you know what hurt you.   


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/20/2009 8:50 PM (GMT -7)   
I was just reading someone who is a dietitian from the UK who says that 80% of people with pain from endometriosis can get relief by removing gluten from their diet. (See: http://www.endometriosis.org/nutrition.html)
There are also a number of papers that propose that endometriosis is a result of high oxidative potential in the peritoneal (gut cavity) fluids. A couple of reports cite great improvement in pain (severity and duration) by the use of vitamins E and C. Also - no news to the people here - they report that there is a connection between inflammation in any of the gut, urinary tract and vaginal area that results in inflammation in all of them via the hypogastric nerve.

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 9/23/2009 8:24 PM (GMT -7)   
Keeper said...
I was just reading someone who is a dietitian from the UK who says that 80% of people with pain from endometriosis can get relief by removing gluten from their diet. (See: http://www.endometriosis.org/nutrition.html)
There are also a number of papers that propose that endometriosis is a result of high oxidative potential in the peritoneal (gut cavity) fluids. A couple of reports cite great improvement in pain (severity and duration) by the use of vitamins E and C. Also - no news to the people here - they report that there is a connection between inflammation in any of the gut, urinary tract and vaginal area that results in inflammation in all of them via the hypogastric nerve.
I have done all the research i think I possible can I this diease. I am no doctor and I don't always agree in doing research and saying it's mostly likely what I have. But I have all the symptoms. I was in the worst kind of pain for 5 dyas while on my period. Now that I'm done I feel amazing, not tired, not pain when I pee. My lower back stop finaly hurting.
I guess i'll have to wait and see what the doc has to say. But allot of research say that it maybe because of the crohn's in most patients with CD. Nothing has been proven.
Thanks again everyone for their reply and any info they had.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD
Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc
                         Predizone, tapered down from 10 pills 8 different times.(horrible side effects)
                         Lots more,list is way to long.
Unable to work last 2 years and counting. Hoping to get my life back soon. Minimum visit's to the ER is every 2 months, to stablize me and send me home. Been 5 years since my last colonoscopy.Got my apointment, Sept 16th. Sooo nervous for the results,in fear the CD has worsen.
--------------------------------------------------------------------------------------------------------------------------
Live life to the fullest with no regrets and only eat what you know what hurt you.   


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/24/2009 9:53 AM (GMT -7)   
Just because the two scopes showed no active Crohn's doesn't mean diddley-squat. The small intestine is some 20 feet long and there is no way a scope can reach thru the entire small bowel EXCEPT a double balloon endoscopy which is a fairly new procedure. There is no blood test that can rule out active Crohn's.

So you are left w/two likely suspects: Crohns and endometriosis. It was an ER doctor who first pointed out that my worst Crohns activity occurred in conjunction w/my menstral periods.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 11/12/2009 4:15 PM (GMT -7)   
There was a cancelation, so I got called into the gyno today. We went through my options, and we came out with none. She doesn't want to give me any time of birth control pill since the migraines I suffer are server. She is sending me to an ENDO specialist, but we all know how long they can take to see, and I am leaving for Punta Cana for my wedding in less then 5 months, I was hoping to get it sorted by then. The only option she was able to give me was Lurpon, but she didn't do anything, just gave me a referal and 30 pain pills!!!!
How do you guys feel about lurpon?
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/12/2009 10:45 PM (GMT -7)   
Another link. This one is about intestinal endometriosis. It is by a fertility specialist and he thinks that any bowel problems that flare up during your period is intestinal endometriosis. Here's the link: http://www.infertilityphysician.com/endometriosis/intestinal.html

BTW, a new therapy for endometriosis that is showing promise is TNF inhibitors - like remicade.

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 11/13/2009 9:27 AM (GMT -7)   
Thanks so much for sharing the look, going to read up on it now. I'm liking this doc already. The gyno i went and saw yesterday said 'it's not endo, you just have tough periods' I told her, 'tough periods doesn't cause like flar symptoms a week before my period' I guess she realized I was right, and is sending me to see a specialist

I was on remi for 1 year and 4 months, didn't help me when I was on my period, still had to go to the ER, and now currently on Humira, no difference, ER visit's when I start my period.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


mysteron42
Regular Member


Date Joined Dec 2005
Total Posts : 47
   Posted 11/15/2009 7:11 AM (GMT -7)   
make sure you see a really good gynecologist that specializes in these issues; there can be a million and one causes of abdominal pain in females and endometriosis is a diagnosis that's easily thrown around. it's not entirely uncommon, but don't accept the diagnosis until you have conclusive testing done. i can't tell you how many people i've known that have actually had other things wrong with them (various types of intestinal problems, or ovarian problems like cysts, etc) and have been misdiagnosed.

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 11/15/2009 9:57 AM (GMT -7)   
mysteron42
Thank you for your post!! The gyno I went and saw said it was as simple as getting tough periods, but tough periods doesn't cause 'flare' a week before I even start my period, I am not saying it's Endo for sure, but it's def not just tough periods.
I have an apointment dec 4th to see a endo specialist.
Would you be able to give me a few things that could act like Endo but would not be?
Or issues with the stomach tho my crohn's is in remission and only acts up 1 week before my period and during.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 11/15/2009 11:21 AM (GMT -7)   
I wonder if anything here would help you.  about the fourth article down talks about migraine diets.
 
 
Guy

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 11/15/2009 2:03 PM (GMT -7)   
Thanks so much for sharing the link, I will def read it. Hopefully it'll give me some sort of insight.
Thank you again
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/15/2009 5:20 PM (GMT -7)   
Fascinating link - the blog writer assumes a lot about the reader's understanding and glosses over the details, but it is interesting to see such similar conclusions to my own from someone who is a lot better versed in the details that I am. He definitely has a bias, but it seems to be justifiable.
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