DIFFERENT CURES FOR DIFFERENT COUNTRIES.....

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Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/23/2008 4:29 PM (GMT -7)   
Hi - Im midnitenz from New Zealand and have lived with Severe Ulcerative Colitis for 8 years now.
I still have everything intact (lol)
I have been reading through the posts for sometime and have found and heard so many different ways people deal with colitis.  I think it also has alot to do with where you are from to how it is dealt with...
On one website they have written  "diet has nothing to do with colitis" obviously the person who wrote that DOES NOT have colitis - as food is how I HAVE controlled mine. 
I was on steriods - (notice the was) and now only take asacol and mecaptopurine. 
To me who has "severe" ulcerative - food is the big key. 
I see other people not working because they have colitis - for all you out there - do you have everything intact (nothing removed)???  why can't you work?
Stress I believe (from experience) is a BIG factor with anyone who has colitis - this is a "trigger" but then obviously eating a really hot curry is also one :-)
I'm not having a go at anyone - but I believe where you live and how your specialist tackles the colitis - differs in every country...so maybe we can all compare notes and see and help each other.
 
 

quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 3/23/2008 4:51 PM (GMT -7)   
Welcome to the forum...where in the colon is your UC .. throughout or limited?

Please remember that colitis is a generic term...if you have UC and are talking UC...try and use the term for clarification.

Well, I don't believe that food has anything to do with UC flares...not causing them nor curing them.

Stress is very subjective...many degrees and different situations for each person. Stress does affect me...but the very deep emotional kind that has me in a bad state when I'm on maintenance meds.

I can eat curry, hot thai food..etc..it has no effect.

Many UCers don't get the connection that many foods have action unto themselves. Add UC flare and they don't mix well. Many of us have IBS...which is/can be triggered by food and stress. hard to differentiate.

I don't see you on any rectal meds....can become your friend.

I have an awesome GI...diagnosed over 19 years ago...the use of 5ASA meds, both oral and rectal is really one regimen many GIs neglect...unfortunately.
Many choose steroids for first-line meds...not good in my opinion unless one is in a state of crisis.

You could consider to add probiotics to your supplement intake...awesome for anyone..more awesome for UCers.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 3/23/2008 5:02 PM (GMT -7)   
I would be nice to exchange info from different countries.
 
I agree with quincy, food does not cause my colitis, however, when I am in a flare some foods, like french fries, can sure act up in my digestive system and it is a must that I get a good nights sleep every night (well, when the bathroom trips don't keep me awake lol).  I do find, however, that fresh, crushed garlic causes my colon to settle down significantly, to the point I feel normal for the night.  I eat a lot of it when I am in a flare and it seems to help me.
 
 


 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 

Post Edited (love4cats) : 3/23/2008 6:05:30 PM (GMT-6)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/23/2008 5:04 PM (GMT -7)   
Welcome to HealingWell, Midnitenz. I'm glad to hear you're off the Prednisone, it isn't intended to be a maintenance drug. Based on what I've heard from others, diet seems to play a big part for some but very little for others. Some people work through the disease while others have to go on disability because UC is different for each of us. Some have more pain, bleeding and tiredness, some less. It just isn't a one-treatment-regimen-fits-all disease. When grading the disease as mild, moderate or severe, symptoms are only one criterion used.

Also, the drug and life regimens we follow are not a cure. The disease is still there, just under control for now. The only known cure for UC is surgical removal of the colon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/23/2008 5:09 PM (GMT -7)   
Hi quincy.
I have 'throughout" UC.

I actually didn't day "food" causes flare ups - I mentioned that I use it to control my UC. I think it's great that you can eat HOT/SPICEY foods - brilliant - I just personally wouldn't go there because to me it's not worth it - guess it depeneds on the severity of UC everyone has.

Stress to the point - of running oneself down - what I type is solely on my experiences....I have found if I don't listen to my body, and keep going etc - my UC gives me a little nudge to remind me to rest.
I don't need rectal meds anymore - as I have my UC under control.

So quincy I would assume you have UC and you live in america/canada???
Nice to meet you - with this being my 1st time here....look forward to hearing from you again.

Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/23/2008 5:15 PM (GMT -7)   
Hello Judilyn.
Im fully aware that there isn't a "one-treatment-regimen-fits-all disease" and realise a disease is a disease - there is no cure - the meds help maintain and what we do, also adds to it....
Its all about maintanenance.
I didn't come on here have a go at anyone and I fully realise that everyones life dealings with this is different - that's why I came on to find out about it.
And how different specialist from around the world deal with it....
If I have offended anyone - sorry - you took it the wrong way.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/23/2008 6:23 PM (GMT -7)   
I get where you're comming from Midnitenz and for the record, it has not yet been proven if food is a trigger or not for IBD so for anyone to say it definitely isn't I veiw them as not being optimistic...if it hasn't been proven one way or the other then how can anyone claim it doesn't.
 
This is directly from the CCFC...
 
 

Triggers/ Environment

VIEW IMAGE Disease is not 100% genetic so it requires a trigger
VIEW IMAGE Many theories and investigations into the role of microbes
VIEW IMAGEOther factors could contribute: food, environment etc.

I don't have alot of faith in those who are pesemistic about the possibilities, instead I see them as close-minded...people can believe what ever they want, but even when sources like the CCFC that are behind research even state that food could very well be a trigger then those are the sources I choose to rely on.

 

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)

Post Edited (pb4) : 3/23/2008 7:26:26 PM (GMT-6)


Sara14
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Date Joined Mar 2007
Total Posts : 4034
   Posted 3/23/2008 7:24 PM (GMT -7)   
On the other hand, if you don't want food to be a trigger (like you want to be able to continue eating whatever you want and not have to be restricted), wouldn't it be thinking optimistically to see that as not a possibility...? I personally don't want to have to restrict the foods I love to eat.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 3/23/2008 8:18 PM (GMT -7)   

Hi Midnitenz,

Welcome to the boards!! It's a shame that you have UC, but it's great that you've managed to control it through diet.  I am one of those who, like you have managed to control it through diet -- it's not the best, but it beats the alternative. lol

Others use meds to control it (I personally, think rectal meds are more effective) and for the most part they can eat what they want; but in either case the disease remains. Anyway, I am one of those crazy people who believe that a cure is on the horizon, but not from a big pharmaceutical company (they're making millions off us, so why bother?). I think someone will stumble across a cure and it may even be one of us on this board -- I just hope it happens this year because I'm getting tired of UC and I don't wanna say goodbye to my colon...lol

Well...I've said too much already.

LONG LIVE OUR COLONS!!

tongue

NBT

 

 

 



Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/23/2008 8:43 PM (GMT -7)   
Hi NBT... that's exactly it. I am also one of those "crazy" people as you put it, I also believe that one day UC will be cured and they will have answers to all the questions.
It's a shame for anyone to have anything wrong with them - but I also believe how each one deals with it - is how it will effect your life. I am not restricted on foods, I just think before I stuff it in.
For example *when i was in hospital in a ward with other people with UC-all just having major flareups,complaining about the food, how they wanted to have (not digging here quincy)something nice, or a can of coke, something spicy* I was shocked, your whole inner system is raw and you want to put that in - to me that would be like adding vinegar to an open wound......
Out of that ward - I am the only one (there were 6 in total) who has my colon. And I am proud of that.

I just want to talk to people from all over the world and hear the path they have travelled to get where they are....
:-)

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/23/2008 9:12 PM (GMT -7)   
Sara14 said...
On the other hand, if you don't want food to be a trigger (like you want to be able to continue eating whatever you want and not have to be restricted), wouldn't it be thinking optimistically to see that as not a possibility...? I personally don't want to have to restrict the foods I love to eat.

You made my point, that's exactly how someone who insists food has nothing to do with IBD would defend it, so they can be in denial and continue eating things that likely aggrivate their disease.
 
I personally would give up trigger foods in a second if it meant I could have my complete life back....infact I did, I gave up on processed foods/beverages, fast-foods, sugar and only eat healthy (not to be confused with balanced) and I'm in a much better place now than I was when I was eating garbage foods/beverages.
 
Guess everyone has to come to the realization on their own, but that doesn't change the fact that researchers have not ruled out food as being a possible trigger for IBD, that's reality...it's slightly arrogant for anyone to say there is no connection when it has not been proven yet.
 
:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Bruce J
Regular Member


Date Joined Dec 2004
Total Posts : 77
   Posted 3/23/2008 9:26 PM (GMT -7)   
I for one think that diet plays a pivotal role in the course, or even the cause of UC - either directly or indirectly. I am almost 100% convinced that UC results from some sort of bacterial (or other internal flora micro-organism) by-product. This of course would lead me to believe that UC is a diet-related disease. I do not think that everyone reacts the same to the same foods, but I think we're all reacting negatively to one or more of these by-products. To me, it's the only thing that makes real sense - and I've done a-lot of research and digging. In any case, it would be nice to hear how folks treat this disease across the globe - as I'm sure it's different all-around. I too am hoping for a 'cure' ASAP, as are we all! However, I doubt that it will be as simple as taking a pill and viola - your cured. It'd be nice, but doubtful nonetheless...
Diagnosed Left-Sided UC Dec 2003.
Full remission for 1-1.5 yrs twice. (both thwarted by my quitting smoking)
Full flare again since Jan. 2008
 
Currently:
4500mg / Day Mesalamine
52.5mg / Day Prednisone
50mg / Day Imuran


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/23/2008 9:33 PM (GMT -7)   
I still think this disease has multiple factors, trigger and courses. I know that there's no food that puts me into a flare. There are foods that I don't eat during a flare because of the irritation factor. But now my colon has no ulcers, so I just eat a normal healthy diet.

If you believe food triggers you, you're probably right. But it doesn't trigger everyone. And the fact that they haven't proven foods don't trigger flares is not the same as their having proven that it does. Let's not decide anyone who disagrees with us is wrong or misguided, okay?
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


:)
Regular Member


Date Joined Feb 2008
Total Posts : 182
   Posted 3/23/2008 9:48 PM (GMT -7)   
A big factor in all this is that UC symptoms are manifested differently in every person. That's why some meds/treatments work for some and not others. The causes, triggers and responses vary different across the board.

So it's very hard to pinpoint specific things and compare the why's and how's if each colon differs. Obviously, there is a general similarity of symptoms and characteristics, yet finding a panaceal 'cure' seems so much more difficult because of this.
Dx: Dec. 2006 with UC
F, 23, NYC
Thank G-d - Prednisone then 6MP, Rowasa and Asacol brought remission
Now Asacol 4tabs 2x a day.
Muiltivitamin, Iron and Folic Acid supplements


Jsanders505
Regular Member


Date Joined Mar 2008
Total Posts : 94
   Posted 3/23/2008 9:48 PM (GMT -7)   
How about one cure for all countries? :)

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/23/2008 11:58 PM (GMT -7)   
I have never said or necessarily even decided if food is a trigger, simply because research has not proven it one way or the other, so it's still a possibility...that's the issue I have, is anyone who is so adamant that it isn't a trigger when it very well could be....assumptions can be dangerous.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/24/2008 12:14 AM (GMT -7)   
The main reason I placed the title as I did - was out of curiosity..and everything I type has been related to me and my experiences. Yes, everyone reacts differently but for instance....
I travel alot (plane)with my job - and I have found over the years that I have had UC - different foods react to me.
First of all "flying" upsets it a little - short trips no drama - Long Haul - upsets the UC a little, my theory and also doctors is because when you are in a plane - everyone swells. You know those famous fat ankles we all get after long haul flights LOL.. well your whole body actually changes - so one could understand why UC can get a little upset...second: food. Butter is not the same as in NZ as it is in the states...Different ways of preparing - hidden additives and all that. Me (personally) can eat raw pineapple but cooked FORGET IT - it rips my stomach to pieces, something that simple, could be the genetic base of the pineapple changes in the cooking process, but I know it's lethal to me.
I couldn't eat cheese and alot of things when I was in the states- but at home - in NZ I can (not huge amounts) but it doesn't bother me. So with travelling, the question has often popped into my head - could it be food or food combinations or how they are made.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 3/24/2008 12:31 AM (GMT -7)   
Many people who don't have UC will still have digestive issues with food. I didn't say some foods don't agree with me. I do have a well balanced diet, but can have my cake and eat it too. I do get discomfort, gas from some foods...but that's not UC.

If your symptoms are such that you have actual UC symptoms (easy to blame food)...your colon is still fragile and maintenance meds can help.

quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 3/24/2008 2:32:37 PM (GMT-6)


Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/24/2008 12:55 AM (GMT -7)   
I am on meds quincy - I will forever be on asacol and mecaptopurine...When I mention upsetting the UC I am talking about the familiar ache or pain in the lower stomach area - does not mean that you have to be losing blood or anything like that - its the pain (ache) that to ME, certain foods can trigger..
I maintain my colitis with the meds and what I put in my mouth...Hence no flare up for 6 years. The reason I also mention stress as a trigger, when I ended up in hospital - was after losing my father, emotional stress etc, meds were still be taking, but the system blew out....Which is why i ASKED if anyone else has found something similiar - with stress, do they find it as a trigger to them.
I am honestly not saying food / stress are the cause of UC - just curious to how other people react to it.

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 3/24/2008 4:47 AM (GMT -7)   
This debate has been coming up regularly lately as most of you know. Let's all remember to respect each others opinions and realize we can't all agree all the time. Keeping in mind this is a support forum.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Bum Deal
Regular Member


Date Joined Jan 2008
Total Posts : 34
   Posted 3/24/2008 4:56 AM (GMT -7)   

It's also worth considering the indirect effect on your UC that food can have... I apparently had IBS before my diagnosis (although not sure now if it was UC all along), but I know that certain foods aggravate my guts - just found out bread is a no-no :(

One of my theories is that certain foods with me play up and then move everything through me too quickly, including the meds I'm taking, so they don't get a chance to do their bit, which would help cause another flare-up.

But the countries thing is interesting. I'm from the UK and I did a month's travelling through Spain not so long ago (before I was diagnosed UC but I was still having gut troubles). I managed 9-hour bus trips without bathroom breaks and stayed in hotels sharing a bathroom without any hassles. Since then I've been scratching my head trying to figure out what settled it all down while I was out there. One thing was that I wasn't eating bread each day, and another thing that might have helped was a mainly seafood diet. I'm hoping that Spanish red wine could be part of the solution, too tongue

Given that it's mainly a Western disease, it makes you wonder if all these additives in food that we don't really know about are part of the problem.


DW

Male 30 Years Old.

Diagnosed Pancolitis June 2007

Currently 20mg Prednisolone, 12 tablets Asacol, 50mg Imuran (started Dec 07), 25mg Mercaptopurine (following allergic reaction to Imuran)


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 3/24/2008 6:31 AM (GMT -7)   
I thought I'd chime in on the not working aspect of your post. I haven't been able to work because of my profession. I am a teache and am not able to go to the bathroom when needed while working. Having a classroom full of 12 year olds that require constant supervision I find that running out of the classroom 2 or 3 times a period is not good. I can grimace throught pain, bloating, nausea and teach but it's impossible when you are running to the bathroom every few minutes. If i were to work in an office with a bathroom down the hall that i can use anytime...I could work. I think that there are just some proffesions that make it more diffucult to work. Could i get a job in an office...yes. but i spent ten years working on degrees to be a teacher. It is my passion and dream. I won't give that up just yet. I am lucky enough to have a husband that supports me and agrees that i need time to heal before i go back. He is also worried about remicade and all the germs in schools but I feel that there are germs everywhere all i can do is my best to avoid them.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/24/2008 6:35 AM (GMT -7)   
And let's not overlook the fact that UC is a disease that has periods of remission followed by periods of flares. One can hope that if they follow a particular "diet" that they will no longer be prone to flares or is the long remission due to maintenance meds?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Tomster
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 3/24/2008 9:28 AM (GMT -7)   
Bum Deal said...

It's also worth considering the indirect effect on your UC that food can have... I apparently had IBS before my diagnosis (although not sure now if it was UC all along), but I know that certain foods aggravate my guts - just found out bread is a no-no :(

One of my theories is that certain foods with me play up and then move everything through me too quickly, including the meds I'm taking, so they don't get a chance to do their bit, which would help cause another flare-up.

But the countries thing is interesting. I'm from the UK and I did a month's travelling through Spain not so long ago (before I was diagnosed UC but I was still having gut troubles). I managed 9-hour bus trips without bathroom breaks and stayed in hotels sharing a bathroom without any hassles. Since then I've been scratching my head trying to figure out what settled it all down while I was out there. One thing was that I wasn't eating bread each day, and another thing that might have helped was a mainly seafood diet. I'm hoping that Spanish red wine could be part of the solution, too tongue

Given that it's mainly a Western disease, it makes you wonder if all these additives in food that we don't really know about are part of the problem.

Hey BD,

Interesting to read your experiences of feeling better when travelling, I'm also from the UK but spend allot of time in Thailand and tend to go into remission within 2-3 days of getting there. So far I've put that down to:-

1. Less stress

2. Seafood diet

3. Lots of sun

However, after reading post I think I need to investigate the redwine angle a bit further, I think you could be on to something there... cool

Cheers,

Tom. 


Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/24/2008 12:01 PM (GMT -7)   
Thanx kb5 for explaining that...by the sounds of things your UC is not under control and I hope it will be soon, so you can get back to doing what you so love so much. How long have you been off work?

BumDeal & Tomster, that's my point really to this whole thread, different foods - different countries.
You both seem to see the pattern - your relaxed - something different your eating - and of course red wine LOL - wish I could drink that but I don't like e taste (sorry lol)
And your UC settles to a point so you can manage it. I'm the same. I travel alot for work / holidays and like I mentioned - certain foods in other countries I can't eat -where I can eat them at home.

Asia countries I have to be super careful - with water even (everything is bottled) but america blew me away - that actually was the most difficult for me.
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