19 with ulcerative colitus

Should i have surgery
2
yes - 28.6%
1
no - 14.3%
4
just carry on with medication?? - 57.1%

 
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sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 12/11/2008 1:55 PM (GMT -6)   
What an illness to have at any age though!i have tried all medication and now back in hospital on steriods i am so down and am seeing no other route than surgery now as i have no where near a normal life!but am so scared and as my dr said i dont seem mentally ready for it and its true am not am so ust 2 just working going out with my friends and boyfriend not to worry about always needing to know where the nearest toilet is!
i definetly dont want the pouch as i would get depressed and no self confidence as am proud of my body now!!!
anyone else going through this i have such sympathy for you,yes there is people worse off like cancer patients etc!but this illness is humiliating knocked all the confidence out of me! and is such a stress!i HATE it.and the side effects from steriods are awful!!!!
Just really need advice guys as am losing the battle with this!!!
:( x

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 12/11/2008 2:13 PM (GMT -6)   
Being 19 and having UC must seem like a life-time sentence to misery, embarassment, and pain. It doesn't have to be that horrible though. It takes some playing around, but many people are able to find the right combo of meds, supplements, and diet that gets them feeling better. It does get really annoying always having to take my UC into consideration when going to do something, but eventually you'll come to cope with it...

All that being said, the majority of the people who have had surgery said the one regret they had was they didn't do it earlier. Many of them went through years of hell before surgery, and they now have their lives back. The j-pouch isn't the only way you know. There are new methods of doing the procedure, and you will have the pouch for a few months, but after your body does some healing, they go in and form an internal pouch out of the remaining intestine, thus enabling a life without the j-pouch. I am not an expert by any means, so please do a little research on the web to find out the accurate details.

I'm not advising you to have surgery either though. It is a big decision to have someone poking around inside of you and removing things. It is not something to be taken lightly, and you should look at all the pros and cons and talk with your doctor. Personally, if I had the option at this time, I'd go for it. That is me though. I'm willing to take whatever risks that go with surgery just to be rid of my UC. No, UC isn't life threatening, but it is really good at making a person miserable, and if I could get rid of it, I would.
 
36 y.o. male
Diagnosed w/ UC in May '06, had symptoms since '99
Meds & supplements: VSL#3, Lialda, Allegra, multi-vitamin, Wellbutrin XL, Prednisone, fluoxetine, flaxseed oil, magnesium, and vit B-12.


sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 12/11/2008 2:16 PM (GMT -6)   
So you've had yours for a long time...is yours ok now? because this is what puts me off surgery if people can live fine without it???

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 12/11/2008 2:30 PM (GMT -6)   
I wouldn't say I'm doing well, but compared to how I was 6 months ago I'm better. I'm still trying to fine tune my med regime/supplements/diet. I have a small allergic reaction to the 5ASA meds that builds up over time, so I can take them for a year or so, but then I need to stop. Stopping Asacol is what put me into a flare this summer. I'm looking into trying out experimental meds. I guess I have a somewhat unrealistic expectation that meds will eventaully get me to feel how I did pre-dx. That is why I would opt for surgery myself, but I'm going to exhaust my options first. If I find a pill that I can take once or twice a day that will get me back to normal, I'd be willing to take it forever, but I'm not willing to feel like crap for the rest of my life.
 
Hang in there.  As bleak as things look right now, they won't be that way forever.  I really do feel for you having to deal with this at such a young age.  It is bad enough in my thirties, but I can't even imagine how I would have dealt with it if I was a teen.


 
36 y.o. male
Diagnosed w/ UC in May '06, had symptoms since '99
Meds & supplements: VSL#3, Lialda, Allegra, multi-vitamin, Wellbutrin XL, Prednisone, fluoxetine, flaxseed oil, magnesium, and vit B-12.


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/11/2008 2:38 PM (GMT -6)   
Hey sparkle, I replied to your post in the other thread. (psst--beartooth, the "j-pouch" is the thing made out of the small intestine. You do have it for life, if all goes well. What sparkle is worried about is an ostomy bag, which usually plays some role in the process of getting a j-pouch.)

My short story is that I had the surgery after ten years of UC and couldn't be happier!

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 12/11/2008 2:41 PM (GMT -6)   

Charlotte -

Thanks for setting me straight.  You would think that I'd have figured that out by now, with all the research I've done, but sometimes things just go over my head.  At least I won't make that mistake again.


 
36 y.o. male
Diagnosed w/ UC in May '06, had symptoms since '99
Meds & supplements: VSL#3, Lialda, Allegra, multi-vitamin, Wellbutrin XL, Prednisone, fluoxetine, flaxseed oil, magnesium, and vit B-12.


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 12/11/2008 2:48 PM (GMT -6)   
Is this your first flare? It sounds like you are having a rough time and usually when the disease affects your quality of life is when the surgery in considered. Like above I wouldn't tell you yes get it or no don't because only you and your GI can figure that out. It is a very big decision and I would do some research on the surgery options you have and talk to you GI. Good luck! :)
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


FitWithUC
Regular Member


Date Joined Nov 2008
Total Posts : 64
   Posted 12/11/2008 3:00 PM (GMT -6)   
I was diagnosed at 18 (now 21, but I believe I had UC since I was 13 or so, at least IBS) I've had a very normal life (hanging out, flying to other countries, etc.) when in remission, I've had just two flares, getting out of one right now. I believe that someday I'll need surgery because of two many meds on my body, I'm ok with it know but when I was diagnosed when de GI'S told me about surgery I have to admit I was pretty scared.
Male, 21. Puerto Rico
DX: Ulcerative Colitis as of 06/05
Remissions: Remission: 01/06 till 10/08
Current Treament: Asacol 2400 MG 2X daily, Rowassa nightly, 1MG Folic Acid, 40 MG Prednisone, Remicade, New ChapterĀ® Multivitamin, New ChapterĀ® All-Flora Probiotics, Dolomite Calcium Supplement
Status: Flare, but getting better :) No urgency, no blood :)


sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 12/11/2008 3:18 PM (GMT -6)   
Thankyou for all the replies am stuck in a hospital bed ,so lots of time on my hand!
i get confused with people saying wish i had had surgery and good results from it like never suffering again but then i get people that cope on the medication i have a very busy lifestyle and work full time and find it hard to rember to take it all the time!
My consultant has said elective surgery most of the time works a lot better
does anyone know what the scars are like.....i sound vane but i just really dont want to be self consicious!
x x x

Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/11/2008 3:34 PM (GMT -6)   
Here's the scoop on the scars. I had my surgery laparoscopically, so they're fewer and smaller than they would be if you had a traditional open surgery. I have one scar where the stoma site was that's about 4 cm wide. I've got a second scar just under the line of my pubic hair that is about 7 cm wide. There were a few marks where they inserted the instruments higher into my abdomen, but those were less than 1/2 cm each and they are faded enough that you can't see them unless I point them out to you (and the surgery was less than a year ago). So if I wore a bikini, all you'd see was the stoma site scar.

"Self conscious" isn't really about how your body looks, though--it's mostly about your state of mind.

Have you seen Mark and Megan's site about Mark's surgery? It's very thorough and true to my experience (his scar photos are almost the same as mine would be, too):

http://ucstory.wordpress.com/

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/11/2008 3:39 PM (GMT -6)   
Well, you can live with it. I went to college with UC 4 1/2 years graduated with BS Biology, another 4 years in professional school and now I get to practice being a doc and seeing patients all day long. There have been some rough spots, but for the most part, looking back over my life I don't remember the flares. I remember the fun stuff. I was thinking about that the other day. I don't remember all the times I was freaked out about maybe having to run to a bathroom, but I do remember just being out and enjoying things.

My goal is to go until this thing gets a cure, or at least a consistent treatment that will stop my nervous system from destroying my large intestines.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Immuran
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/11/2008 3:57 PM (GMT -6)   
I was diagnosed in 1991 and only had 2 major flares until 2007 and drugs just wouldn't work for me anymore, thus I HAD to have the surgery. I know that I exhausted all other treatments so I can at least say that I tried, but everyone is different. I completely understand your feeling about being vane, it's not that you are being vane, but why would anyone want their bodies to be scarred. That said, some medicines (prednisone) did more to my self esteem than the surgery, no one could tell I had a bag in between surgeries, but you couldn't hide my "moon face" & acne & weight gain & hair loss from steroids! But I am glad that I had the option of using a drug that would put me in remission for years. It hasn't been a year since my final of 3 surgeries and if I were to be asked if I'm happy that I had the surgery I would honestly say "No, I wish I didn't have to have 3 surgeries, I wish the medicines would have worked but again, I'm glad that these surgeries were an option for me and I am healthier."

Only you know how much you are willing to put up with, do your research on the available drugs and side effects and the surgeries. Hopefully you can get better with the most minimal drug, and you won't even have to think about surgery for a long time.

Good Luck
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


mdbuckeye
Regular Member


Date Joined Dec 2008
Total Posts : 26
   Posted 12/11/2008 4:21 PM (GMT -6)   
I was diagnosed when I was 16. It sucked, I played sports, was active, liked how I looked. The first semester of my Junior year I was in the hospital. I almost had my colon taken out, but due to a last minute find it improved my my health and I was able to avoid that. When I got back to school it did suck and it was depressing. Due to the steroids my face blew up and friends didn't even recongize me. I got really depressed and hated life. I stopped taking my meds and just ugghhhh. Eventually I was right back in the hospital but I realized something. UC sucks really bad don't get me wrong but being in the hospital for a long period of time I saw people who had it a lot worse then I. They had cancer or tumors, just really bad stuff that could or might have ended thier lifes. It does suck too have uc and it does suck to have it when your young and want to have fun. This is time where your supposed to feel good about yourself and experince things and so forth. So basically you are in a situation that makes it harder. If I were you knowing how I felt when I was your age I would do one of these two things. Accept that you have a diease take the prednisone, take your meds right, do the best you can to do what your supposed to. Hopefully by doing this you will get stable then be able to get off the prednisone and be able to avoid the side effects. Or number 2, get it taken out. Ive talked to alot of people who have had the surgery who live active lifes and look good, feel good about themselfs. If I had to be honest from my experince, unless you are going to be strong and able to resist things, which I have trouble with I would do number 2. I wish that when I was 16 that medication they found that saved my colon from being taken out didnt happen. Ive been in and out of the hospital, taken prednisone for 5 years, this is the first time ive been off of it. My bones are always cracking, and I just know I wish I had that darn thing taken out. The thing is though Ive caused my problems because I thought I was invisible and I had drinking issues. If you can be strong and resist and do what your supposed to  do you might be able to live a normal life. Anyways I wish you the best and sorry for typing so much.  
Diagnosed with colitis @ age 16. (2000)
Current Meds:
Imuran(250mg), Sulfasalazine(4000mg).
In remmission, last flare up Jan '08.
 


sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 12/11/2008 4:39 PM (GMT -6)   
Am really trying to be strong about this ,but it's so hard am normally so confident and never let anything get me down but this really has!
Think av decided to carry on medication and surgery should be the last option for me!Am happy i have found people to speak to as no one i know has a clue what it is...my boyfriend has only just come to terms with exactly what happens!
Just hope i get better
hope you all do toooo,just an awful AWFUL illness! its just learning to cope and get through it x x x

mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 12/11/2008 5:02 PM (GMT -6)   
I was diagnosed at 20. I am now 34. I was a normal guy in college, partying, dating, having a great time. At first I kept partying, dating, and having a good time. My flare hit me hard, but I continued to have fun. As time went on, my situation changed. I worked full time and went to college at night...I had a very stressful relationship that I didnt end even though I should have....I started developing social anxiety over fear of crapping myself in public. I had a few accidents by myself and my ultimate fear in life was having an accident in public...I found this to be an extremely powerful fear as time went on. I started getting anxiety attacks and panic attacks just standing in line at the grocery store....this anxiety and fear made my UC worse and I developed a disease that fueled itself! Started some anti-dep, etc...helped a bit... Now fast forward I am happily married, have a baby on the way, own my own business (stressful though), and live a normal life....HOWEVER - I still flare, I still have anxiety about going places, and I still have a lot of urgency probably still fueled from the anxiety of having the urgency....once the circle starts it is very hard to break.

That being said - and this is only my opinion and my belief and my wishes - I do not look back for a minute and wish I had surgery years ago. I am holding out for a cure or better treatment. If someday I am faced with the decision that I will die if my colon is not removed, I will elect for the surgery...but I personally am not electing for surgery to improve my quality of life per se - because I believe there is too much give and take for a quality of life improvement alone. If it is life or death, different story.... I elected to deal with the disease - as bad as it sucks, as depressing as it gets, and as bad as I feel sometimes from it - I have chosen to keep my colon. There are some promising new things being studied.....that doesnt mean there will be a cure in 10 years, but people sure are trying. And in my case, Murphy's Law like to work against me - as soon as I have surgery a cure will be found....surgery is too permanent for me right now.

I certainly wouldnt want to drive you in any direction whatsoever - everyone's case is different, and everyone's decisions are right for themselves not for anyone else. If you chose surgery, you will have a few scars and move on with life. If you do not, and you are able to be treated with meds that work decent enough - you will be able to live a normal life with some sacrifice and some very hard times ahead.

People with UC are tough. We have tough decisions to make. We live with debilitating and embarrassing symptoms. Only people with UC know what it is like. I feel that whatever decision you make will be correct for you....just do a lot of research and do not make a decision based on how you feel on any one single day.
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)  "I poop in the woods because I can"


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/11/2008 7:00 PM (GMT -6)   
First of all, it's your decision. Talk to a couple GIs and surgeons and gather a lot of information, but don't let them pressure you into one way or the other. If UC is really affecting your quality of life, then surgery is something to consider. Do some research and weigh the benefits and risks of the medications vs. the surgery.

What medications have you taken or are on currently?
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/11/2008 9:02 PM (GMT -6)   
mbx5 said...
I started getting anxiety attacks and panic attacks just standing in line at the grocery store....this anxiety and fear made my UC worse and I developed a disease that fueled itself!


Man, I hate when that one happens, lol. I have left groceries sitting a few times. Or you don't really have to go, but there's no stall open and all of a sudden its the end of the world for you.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Immuran
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 12/11/2008 10:30 PM (GMT -6)   
Dr-A said...
mbx5 said...
I started getting anxiety attacks and panic attacks just standing in line at the grocery store....this anxiety and fear made my UC worse and I developed a disease that fueled itself!


Man, I hate when that one happens, lol. I have left groceries sitting a few times. Or you don't really have to go, but there's no stall open and all of a sudden its the end of the world for you.


I have offered money for a stall....no lie. It was either the stall or the garbage can....
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)  "I poop in the woods because I can"


bratcat
Regular Member


Date Joined Jan 2007
Total Posts : 74
   Posted 12/11/2008 11:26 PM (GMT -6)   
Hey sparkle,

I was diagnosed with UC at 15 1/2 (beginning of 10th grade) and am now 17 (a senior in HS). I had 3 major flares (September 2006, September 2007, and March 2008). Through those 3 flares I tried a host of medications. Asacol, 6-mp, prednisone, rowasa, hydrocortisone enemas, remicade. The only thing that was able to keep me out of a flare was prednisone but the side effects were horrible. I had the moon face, gained a lot of weight, cranky, etc. I opted for JPouch surgery July of this year. I had step 1 of the surgery on July 3. They removed my large intestine and formed the JPouch inside. I had a temporary ileostomy (the bag). I just had my reversal November 10 and am feeling great.

Having the bag was not absolutely horrible. In the beginning I hated it but after about 3 weeks I began to accept it. I figure it could have been worse. You get used to emptying it and changing it. Everyone has their own routines.

Surgery was truthfully one of the best things I ever did. I feel so great. I have so much more energy. I'm not on any medication. No more prednisone which means I lost 45 pound. I don't mind taking pictures of myself anymore (I look like a totally different person in the pictures from my Jr. Prom which was May 2008).

I'm not saying surgery was a walk in the park. I did have a long recovery after the first surgery. This second surgery I was back to school 2 weeks after.

I had full incision surgery. Both surgeons I went to said they would want to do it with a full incision. I was not against it because I figured I didn't have such a spectacular body so no one will really see my scar. 5 months later I still don't mind my scar. I've also decided that since I am working out a little more when I have that nice stomach that I want to show I will. I figure my scar is a tattoo with a better story. My scar is slowly fading a bit. It is about 8 1/2 inches long. The area where my stoma was is still healing and is a little under an inch but that one will definitely fade.

I am not pushing surgery by any means. Just putting in my 2 cents. When I was first diagnosed my GI told my family and I that if medications do not succeed the only cure at this time is surgery. At the time I basically said "NO! I AM NOT HAVING SURGERY!." You do what you have to do and in my case I didn't want to continue taking medications and ending up on steroids all the time. I didn't want to miss 16 weeks of school in my Senior year like I did in my Junior year. I love the way I feel now. I could have been flaring again and having to constantly know where the bathroom was. Now I can go out and not have to worry much about that.

You have to be the one to decide if surgery is right for you.

Hope this helps,
Bratcat
Diagnosed with UC 10/12/06
Daughter of Bennie
17 years old
Flared 3 times in a year and a half tried almost all medicines
Current Meds:None!!
JPouch Step 1 of 2 on July 3


sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 12/12/2008 5:44 AM (GMT -6)   
I am currently on the hydrocortosine drip,asacol and enemas!
How long does it take the steriods to effect your face as myn hasnt swollen that bad this time but i have only been on it 3 days at the moment!I just really dont want to have a fat face for christmas!!!!


Thankyou for all your replies :)

Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 12/13/2008 9:36 PM (GMT -6)   
When I was on pred. the moon face starts about 2 weeks after taking it depending on the dosage. I never got a moon face if I was under 30mg of pred. Its only when I was 30mg and above. I was on Asacol since I was 19 when I was first diagnosed until this past september. I am now 35. Asacol works, however I found that Colazal works better for me. Asacol and Colazal are very close meds however Colazal breaks up in your body faster since its a capsule.

Getting UC in my College years really sucked. I came from HS involved in LOTS of sports and other stuff. Then when I got UC I had to pull out of college for a half a semester.
UC is a very physical disease. However the mental part of the disease is something that gets overlooked. When I first got sick my mom made me go to a few support group sessions. That was the best thing that ever happened to me. Not for the reasons anyone will think. I did not want to be like all the people there. MENTALLY! Physically I know I really don't have a choice. Because the disease will do what it does regardless of how much meds I take. If we are destined to have the meds work then they will work. But for me it was seeing how beat up people were emotionally that made me want to fight this disease. You can only control one part of it and that is the mental aspect.
From what I read getting the surgery is great for folks who have gotten it. However there will be other issues that may come up with having the surgery. Non UC related.

I am currently in a flare since March. Not a major one. Just a minor one but my doc has not put me on pred. for the first time. It has taken its tool on me physically and mentally. Honestly the past month it has taken over my life mentally. Something I never want to happen. It got me to the point where I thought about surgery. However I agree with MBX5 posting. Surgery will only happen if I am on my death bed. They now have cures for all these diseases that our parents / grandparents went through 20 - 50 years ago. As long as the drugs are working keep taking them. And do LOTS of research. Try probiotics. So far I have found them to help me.

MBX5 - Thanks for your post. It really touched me. I was getting down in the dumps mentally and after reading it, it was like a slap in the face. That is how I used to be towards our disease. I got the eye of the tiger back.. Just wanted to say thanks. Your story is so similar to mine.
___________________________________________________
 
Colazal - 9 pills
Rowassa Enema - 1 nightly
VSL#3 DS - 4 packet daily (perscription)
Multi Vitiam - 1 daily
Vitiam C - 500mg daily
Nexium - 1 pill daily
Asacol - 9 pills
Lialda - 4 pills daily
Culturelle- 1 daily


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 12/13/2008 10:50 PM (GMT -6)   
Have you tried any radical diet/lifestyle changes? I was never close to having to make a decision to have surgery, but still suffered for 8 years of terrible on again/off again UC symptoms. Changing my diet (antifungal)/lifestyle helped me get my life back. Just wondering if you tried anything like that yet, before thinking about the surgery route. Again, I don't know the severity of your disease, but I'm only thinking of other options to try before making the surgery decision.

Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 12/14/2008 6:33 AM (GMT -6)   
Moon face should start in a few more days. It sucks a lot, I was moon faced for Christmas one year. There will be other Christmas's though!

Try not to feel self conscious--the people that truly care about you will know why your face is round. If anyone else asks or makes a comment just say you're on steroids. They usually don't say anything else after that.

bratcat...I really like your story. You're so brave. I couldn't even imagine having surgery. So scary.

Suffered for my whole life before being diagnosed.

Told to "Eat more fibre "



Currently on:

Salofalk
1500mg x 4/day
Entocort 6mg once a day Completely off as of 10/21/08. Took 2 years!
Imuran 150mg once a day

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