Hello everyone, I am new here, but in desperate need of some guidance from people 'in the know' about Crohns.
My Son was diagnosed a week after his 12th birthday back in March '09, he was given 6 weeks of Modulen through a nasal tube, which initially seemed to work. Barium x-ray showed otherwise, still had some inflammation. Now on Month 4 of Budesonide steroids, but down to 1 a day.
He missed so much of end of Year 7 at secondary, was trying to do half days, now he is struggling with getting back into a new Year 8. Not many close friends, but a wonderful year tutor.
On a good day, he seems like my Son again. On a bad day, we daren't leave the house.
I am divorced from his father, and the kids live with me but see their Dad at weekends. Hence most of the caring and worrying falls on me. Don't think most people understand how it really affects ALL of us.
Consultant says my Son is growing and putting on weight, so they don't want to see him again till December, but I KNOW as his Mother that he's still not as well as they think. He still gets griping stomach pains and for the last 2 days, has had dizzy headaches in the mornings.
This Crohns came out of nowhere months ago and its knocked me for six, let alone what its done to my poor Son.
Hi and welcome. I couldnt have wished anything so terrible on you at this time. Your son and your family will be put through an awful amount of stress for the next few years until he,and yourselves find a routine,and have some sort of manageble lifestyle together.
1st of all,the trauma of divorce unsettles everyone in the family,and its possible this could have triggered of his crohns.Stress is normally the start of it,so try and keep things calm between yourself and ex,when he is around.I dont want to get too personal,its nothing to do with me,but i suggest you keep any pressure,or stress from your son,at this time.He will need all your support, things will rough for a while,soiling clothes,bedding,mood swings,anxiety, or just being tired. There will be many situations,and that will be best talked over with his gp.The most inportant thing is not to blame yourself on this one, it would have come out sometime in his life. Just be there for him,he will need your support,from you ,family,and dont forget his friends,they need to be told what to expect,dont let him get bullied over this,as he will have accidents.
hope this has helped without me getting too personal........regards David.
Many thanks for taking the time to reply. Divorce was 3 years ago, so a lot of the stress was dealt with before the Crohns appeared. Consultant says its often genetic, but nothing either side of the family as far as we are aware. As I said, it knocked us for six when we were told.
Tutor at school asked if pupils in his form class should be told from the beginning, and I said yes, tell anyone she thought needed to know, pupils or teachers, especially as he went back to school with the nasal tube in for a few weeks. Pupils were brilliant, lots came up to him in the hallway and asked questions, his two closest friends acted as 'fielders' for some of the time, they answered before he had a chance, it was quite funny. Teaching Assistant at the school has a son with Crohns so we met her and she was informative about how her Son dealt with things at school. All in all, that side of things has been ok.
I am concerned about the time it seems to be taking to get him into a decent remission. We were told the Modulen would work, and it did, to a point. Now we are on the steroid road. The last 7 months of our lives have been hell, I don't mind saying it to anyone. I need my old Son 'back', but to be honest, I wonder if things around here will ever seem 'normal' again.
HI Lynn, I was whizzing through the messages so realise I gave rather a promp reply. Then I saw the other messages. So thought I would take a bit more time to respond. Joe was on the modulen but unfortunatley it didn't work. He went on steroids for months and months and is now on Azacol. The medics say he is in remission but his bloods are still up and his symptoms have more or less stayed the same.Apparently he also has irritable bowel and constipation and has an area which often becomes blocked if we don't keep a close eye. In the last 14 months he continues to have diarrhoea every day and awful pain. I have asked will he ever do a normal pooh again!!! I haven't seen one!!! really understand where you are comming from. It is nothing less that tough tough tough....If it is a help to know others experience the same awful frustrations then I think it is helpful to feel that you are not alone and that others do understand. As far as Joes growth. For the first time ever he has stayed in the previous years clothes. The medics aren't too bothered but as is mum it bothers me. I am very frastrated in this Crohns world. However I think a big part of it is begining to axcept it.... Makes me feel very sad but that is the reality ... my view anyway.... Hope that helps. BH. Excuse poor spelling... in a rush!!! Lisa
Thank you so much for your time to reply. Yes I do feel we are struggling alone, we live in Cornwall and I only know of one other child with Crohns, and I met her Mother through Facebook! There must be more, but its how to find them. I tried an appeal on my local radio but no one came forward. There doesn't seem to be any groups anywhere to meet others and chat about stuff.
My other son is 8 (9 in December) and he is fit and healthy, well, a little chubby maybe, lol. Crohns has had a negative affect on his life too, because his brother is often ill, he doesn't get to do the things he might like. Bless him he seems to have understood it all rather well.
HI again Lynn, Just had a thought. Joe missed 50% of school last year. I became very frustrated about the lack of support if I were keeping him out of school unlawfully I would have been picked up by the education walefare. As it was they were not interested until I requested a commmon assessment framework (CAF) via the school nurse. It was liberating. It meant that we could begin to start working together. Joe is now on a statement at school which means he is reviewed reguarly. Teachers are now fully aware and support him in his needs. It is usually difficult to get Joe to school on time as he is up most of the night and then can't get up in the morning. I feel much more supported now. Might be worth you taking this route. As for stress I'm unsure about that one. I cannot think of any reason for Joe having crohns apart from something which occured in his first few months. I have discussed this with the medics. They have no answers. I think it isn't good to ask why but to try and move forward and cope with the day to day challenge. BH Lisa
P.S Lynne! I've got two others !2 and !3. Yes it has been a strain but they are very good at coping with Joe. They get frastrated understandibly but are adapting....which is good for me. Lisa
Hi again Lynn, Iam so glad his friends are supporting him like that.So ok divorce 3 years ago right we can rule that one out,but somewhere your family must have a history of stomach problems or something.My gran had half her stomach removed when she was a teenager.My mother had stomach,and digesting problems,my sister has problems,and her little girls tubes were in a right mess,having to be hospitalised every 3 months.Anyone of them can start crohns anytime,and apparently my girls and their children will be affected as it goes on in our genes.
When your lad finds the right medication that agrees,(and we are all different) with his crohns then it will calm down,and settle for a while,hope its soon.
Take care.....David. PS I used to live in Devon,but the damp weather gets into my joints. Thats another side effect,sorry.
Hi there, so sorry to hear your son has got crohns, my son has just been diagnosed with it yesterday, he is 10 years old, i am so glad to have found this forum, like your son this has come from now where, we have got to see the consultant on thursday to see which road we go down medically.
I cannot thank you all enough for your replies, just knowing there are other people 'out there' that have real day to day knowledge of this helps a lot.
I am phoning our GP today, don't hold out much hope of getting any help, but this whole 'dizzy head' thing is driving me nuts, keeping him off school for the rest of the week now, hopefully I can make him rest more (some hope! lol) and build him up a bit ready for next week. This is the stressful part, from day to day you never know what each morning will bring, so life cannot be planned. Had a hair/lunch day booked for myself but thats gone out the window again! Crohns really screws you around.
Sorry for all your problems with your son, must be hard for him to deal with, hard enough for me and i'm 34, like davie says, its all about finding the right meds, different things work for different people, unfortunately it seems a case of 'hit and hope', but good luck anyway and keep strong for him
I'm another mum, this time of 10yr old Ben, diagnosed in March 2008. We have had very similar experiences. Lisa and I have swapped many a message. I just wanted to join in and say that we are all here to support one another, so welcome.
I think one of our biggest problems is, as Lisa said, accepting it. It seemed almost a relief at first to have a diagnosis after him being so ill for quite a while, but now I think we are just about starting to come to terms with it all. Ben has done the feeds, steroids etc and he didn't get into remission at all. I asked if we were aiming for "normal"poo and no pain, was told that was the plan, but I now think that his current pattern of going 2-4 times a day with moderate/strong pain in between is going to be his "norm". He had surgery in May to remove the most severely affected section of his small bowel and since then he has managed to get off steroids for the first time in 18 months. He deals with the whole thing remarkably well and we have had some support from school but again that was prompted by me. We have also started seeing a psychologist at the hospital, which we think is helping.
I also have twin girls aged 8 and feel as though they are being sidelined sometimes, but luckily they seem to understand.
Sorry to go on, once you get started on here, it's hard to stop.
Thank you again for replying. At Callum's last appointment with Consultant (I didn't go, his Dad took him), it was said that because he was growing and putting on weight, they wanted him to reduce his steroids to 1 a day for a month and then come off them altogether, and they would see him again on 3rd December. They considered him to be 'doing well'.
Well, we reduced them 10 days ago and this week he has had dizzy headaches, 'mushy' poo and lots of pain. How is that 'doing well?' For a while when he was on the 2 steroids a day, we almost had 'normal' poo, down to twice a day. (When he has been really bad, its been 6 times a day and like Oxo gravy!!) Thank heavens we live in a flat all on one level, because if he had to run upstairs for the bathroom, he would never make it.
I am expecting him to be put back on the steroids in December or for them to suggest something else, as it is obvious to me, and I'm not a doctor, that he is NOT doing well!
I know lots of people have said to me that they can get Crohns into remission, but how long will it take for us? Will our lives ever have any sort of 'normality' again?
As it is, Callum has only been to school 1 day this week. Because of the dizzyness I have kept him home, but I am concerned about the amount of lessons he has missed, both last term, and now in the new school year.
Just to update you all, Callum's poo been gradually getting worse all week, so I phoned the hospital this morning, left message for the Consultant, he finally called me back at 5pm. Result is that he thinks he needs to see Callum on Monday at 11.30am and take blood, see what the numbers are doing. Told him about the lightheadedness, Callum's dark eyes, stomach pain, etc. Don't know what they can do, he is supposed to come off the steroids altogether in just over 2 weeks.
Hi Mary, thanks for the welcome ! We saw the consultant yesterday and the dietician and instead of steroids we are going to try the modulen, whether we can get my son to drink it is another thing lol. Fingers x he will take it alright, its going to be hard though, no food for 6 weeks !
Callum did the Modulen for 6 weeks, but he had a nasal tube fitted and we used a pump, he had to have 2 litres a day and its a lot to drink, so Callum had 1 litre by night while he slept, and 2 x half litre in the day. He even went back to school with his tube in and we worked the feeds around it. Our dietician let him drink flavoured/bottled water, and he was allowed to suck boiled sweets. Has your dietician ruled out everything?
If your Son does decide to drink it, take advantage of the fact that you can put Crusha milkshake syrup in it, Callum still drinks 500mls a day with the strawberry, and because he doesn't like the smell, I put his in a pop-top bottle.
Feel free to ask me any questions. It took me a few days to get my head around the fact that I was feeding my 12 year old a milk formula, and I felt that I was starving him, but once we got into our routine and he started to feel better, it was ok.
Hi Lynn its nice to hear someone else's son has taken modulen, we feel rather alone with all this so thanks for sharing your story with us.
Jordan has to drink 400 ml x 4 drinks or he can do 320 ml x 5 drinks, we have got the flavourings to put in there. He is allowed flavoured water and boiled sweets.
When they say boiled sweets what is safe to have i.e. foxs glacier mints things like that ??
Yes, the Fox's sweets are ok, but Callum preferred the fruit flavours as opposed to the mints all the time, he also had pear drops, basically its anything that is sugar and will just dissolve without being anything 'lumpy' to swallow. (This was more important to Callum as he had the tube down and I used to have to check it every day to make sure it wasn't blocked.) Callum was also allowed to have chewing gum but every dietician will work under different rules, some won't allow anything but the Modulen.
Callum found the first 2 weeks the worst, obviously everywhere you look food is advertised, his brother and I used to eat our meals in the kitchen while he watched tv in the lounge so he didn't get the smell of our tea, etc.
I hope Jordan gets on with it ok. Did they give you the tube option if he can't drink enough?
Ben had pretty much the same experience as Callum, Lynn's son. He had the Nasogastric tube put in and most of the feed through that overnight, just because of the volume and the length of time he needed the feed for. He liked the chocolate flavouring best. The 6 weeks passed fairly quickly in the end. At first it wasn't so bad because he felt so ill that he didn't have much appetite, so when we were eating at meal times, he wasn't that bothered. As time went on and he began to feel so much better, he did get fed up at times but handled it very maturely. We were allowed the same things as you, clear fluids and boiled sweets. Ben liked to have ice lollies made from clear fluids. He was allowed ribena, so we used to give him the frozen Ribena ice pops to eat. At least it felt as though he was having something to eat while wewere having our tea etc. I struggled at first getting hold of the Foxes Fruit sweets, I just couldn't seem to find them anywhere. My brother rang Foxes to ask for local stockists and they sent us lots of packets through the post that really made Ben's day.
Hope it goes ok for you all. If younedd to ask anything or just want support when you think you are going mad, come on here.
Hi Mary and Lynne thanks for sharing everything, i am so down today i really am, i cant get jordan to drink the modulen at all, it looks like he is going to have to have a tube put in, can anyone tell me what this involves please ? is it done at hospital, will he have to stay in hospital for that ?? can he still play/do sport with it in ?? thanks sam x
I totally know how you feel, I had high hopes that Callum could drink the Modulen normally, and was so disappointed when he couldn't, its a lot for a child to take on board. To be honest, once you get your head around the whole 'tube' thing, its the easiest option in the long term. Or I thought so anyway. You can get the Modulen straight in, especially at night. Callum used to sit on the sofa with his pump and say 'Feed Me!!' - it was so funny!
Callum went into the treatment room at the hospital and they showed him the tube, basically it goes up his nose and then through a hole at the back, and down into his throat. They can give them some Entonox (spelling?) to calm them down, but they MUST keep on swallowing once the tube hits the back of their throat. Once the nurse thought it was down far enough, they sent Callum for a chest x-ray to check it was down into his stomach. The tube is taped to their cheek and you get a valve on the end that you connect the feeding tubes/pump to. Then he was kept in hospital for a few days, more so for me to get used to making the feed and the nurses showing me how to set up the pump. Once they were happy I was ok with it all, they sent us home - with MASSES OF EQUIPMENT! You have the pump, plus tins of Modulen to get you going, plus we had bottles in two sizes, and syringes - you have to 'draw back' on the tube before every feed to make sure you get stomach acid - you test this on a PH strip - and also to make sure the tube is still in the right place. Please don't panic, its a bit scary to start with, but believe me, once you've done it 2 or 3 times a day for 6 weeks, it becomes second nature. After every feed, you have to flush the tube with some sterile water too. Thats one of the reasons they can't swallow anything lumpy, you risk drawing it up from their stomach when you do the test and it would block the tube. Sometimes they will only send you home with a 'starter kit' so to speak, and then a company will deliver more boxes a few days later - please put aside a corner of your lounge or wherever to store this stuff - every feed goes into a new sterile bottle, new tubing, etc.
The valve has a cover on the end to stop anything going in or coming out when it shouldn't, so I should imagine certain activities will be ok - if the tube is quite long like Callum's was, we used to tape the end to his shirt or jumper. You just have to be careful putting T-shirts and such over their heads when they get dressed, as obviously it is inside their nose and can easily be pulled.
I know this all sounds complicated, and for a few days until you get used to it, it may well be, but please believe me, you can do it. If you need to, contact me privately and we can speak on the phone if it helps.
Sorry to hear you're feeling so down. This really is a tough time isn't it. We had pretty much the same experienceas Lynn and callum. Ben had his tube put in whilst he was in theatrehaving a scope, so it was not too bad. We stayed in for a couple of days to get used to the pump and to get used to the sensation of being fed through it. One thing that really helped was that the staff asked another patient from clinic to come and have a chat with Ben about getting used to the tube. He really responded well to that and listened when they said it would soon feel as though it wasn't there. The first day back at home, he pulled the tube out accidentally, we had a number for a local community team of nurses who came out and re-passed it at home. It took a week or so for him to get used to it being there and after that, most of the time it just didn't bother him. He had the pump overnight and the had 2 - 3 drinks of the milk during the day to stop him feeling hungry and to give him something to have at meal times. He played most of his usual games, we just wound the tube up and tucked it into his t shirt. He went to school and dealt with that really well.
I know this is a lot to take in but honestly, it does get easier and it is straightforward when you've got used to it. Ben has said several times when we have had problems since that he wouldn't mind going back on the feed if necessary. The thing is, once they start to feel better, their mood improves and they're not so irritable, then that makes things easier to deal with.
Hi Lynn, I read your post and think.... Big sigh, I don't know if it is a help to say know how you feel because it trully is so awful. But hopefully good to know that you are not alone and we can all send out BH's to others who understand. So here's a BH. Lisa
Hi 3little darlings, Welcome.... Quite a few of us mums on here at the mo. My son Joe was diagnosed almost a year ago when he was 8. He turned 9 in May. he hates crohns, tablets, Doctors, medication, hospitals blood tests, endoscopies and anything assosciated with the 'C' word! He loves his DS and X factor and big hugs! I hope you begin to have some answers and feel supported by this site on your long road in the battle of the crohns. I met some people this year who were really positive about their condition..... I have to think that hopefully one day we will be there. Best wishes Lisa ans Joe
Hi Lynne, Mary and Lisa, thanks for your messages, means alot to know we are not alone. Jordan has started to drink a small quantity over yesterday and today, he needs to up that though so fingers x he can do it, i will keep you posted. Hugs Sam xx
Hello Everyone, took Callum to hospital today, more bloods taken, will get phone call with results tomorrow.
Consultant now talking about stronger steroids AND immunosupressants! Oh, and possibly a trip from Cornwall to Bristol for another colonoscopy, because the doctor in Bristol who oversees the work down here might want one, considering that the steroids he is on now aren't really working.
More stress, more side effects, what did we do to deserve this?
Hi Lynn, hope the results tomorrow will be good for you and Callum.
Jordan goes to Bristol Hospital for his treatment etc, we live in Gloucester and they dont deal with it here like they do in Bristol luckily its only about a 40 min drive for us
Best of luck with it all. Can they not do the colonoscopy in Treliske, or is it because Callum is a child? Did you mention about him feeling dizzy etc? Just curious as that is the same as me and my consultant seems to ignore it. Hope the blood results are good.
Still waiting for phone call from the hospital today. They did Callum's first colonoscopy at Treliske back in March, but Dr Thorpe is very much overseen by a Dr Spray in Bristol, she is some expert apparently, and he said she might want one done up there. I suppose we could refuse to go, aren't patients supposed to be able to choose where they have treatment now?
This is my first visit to this site. I read your message and felt I should add something positive.
My 23yr old son has Crohns. He suffered from about 11 but was not diagnosed until he was 18 and in his first term at Uni. It had a huge effect on all of us. He was so ill and the docs always fobbed us off. It was only diagnosed when he had an accident playing football when we were on holiday in Corfu. The doctor took one look at him and said he's very poorly isn't he? He listened to his stomach and immiediately confirmed what he thought it was. At this point he was 5 ft 11" and weighed only 8st 4lb! On our return and after a big row with my doc, he had the tests. Unfortunately in our case it runs in my ex-husbands family. There are too many cases for it not to genetic. Any way to cut a long story short, by the time they diagnosed it he needed surgery very badly and had quite an amount of his small bowel removed. Im touching wood here but.....he has been in remission since then...4 years now. He takes Pentasa daily and Questran as everything goes straight through him without it. But he has no pain. He is doing a PHD now and last weekend finished 730th in the Great North Run dressed as Liza Minnelli!
This is my first visit to this site. I read your message and felt I should add something positive.
My 23yr old son has Crohns. He suffered from about 11 but was not diagnosed until he was 18 and in his first term at Uni. It had a huge effect on all of us. He was so ill and the docs always fobbed us off. It was only diagnosed when he had an accident playing football when we were on holiday in Corfu. The doctor took one look at him and said he's very poorly isn't he? He listened to his stomach and immiediately confirmed what he thought it was. At this point he was 5 ft 11" and weighed only 8st 4lb! On our return and after a big row with my doc, he had the tests. Unfortunately in our case it runs in my ex-husbands family. There are too many cases for it not to genetic. Any way to cut a long story short, by the time they diagnosed it he needed surgery very badly and had quite an amount of his small bowel removed. Im touching wood here but.....he has been in remission since then...4 years now. He takes Pentasa daily and Questran as everything goes straight through him without it. But he has no pain. He is doing a PHD now and last weekend finished 730th in the Great North Run dressed as Liza Minnelli!
Good to hear such a positive note from Mel. I've heard lots of positive stories and met quite a few people who have lived with Crohns since childhood, I know it probably doesn't feel that it will happen to Callum when he's going through such a rough time, but I think we all have to remain positive and see light at the end of the tunnel. I know that what is affecting me is depression. I've worked all my life and now I'm signed off sick and feel so terrible that I'm not sure I'll ever be able to work again although my consultant assures me I will get better, it doesn't feel like that. I know that when you are dealing with your own child it is worse than going through it yourself as my daughter has special needs and has spent many years to/fro the hospital, which she just takes in her stride, whereas I'm the one that frets.
Hope the hospital got back to you. I'm going there on Thursday so I'll ask about support groups for young people and let you know.
To Lou and everyone, Consultant phoned this afternoon, we have two choices - (1) Prednisolone and Azathioprine OR (2) Azathioprine and another 6 weeks of Modulen feed! Have talked it through with Callum and he has decided to try Option 1. We know it means stronger steroids and more chances of side effects, but to be honest, we did the Modulen before and it didn't work fully - whats to say another 6 weeks won't be the same, and we would end up having to do the Pred after anyway?
Has anyone else's child been on the Pred & Aza?
Saw teacher today, they are knocking out French, Spanish, Art & Music from his curriculum and just concentrating on the core subjects for now, means he will be in school most of the time, will only miss about 5 lessons a week, and will have 4 lessons a week in Student Support, where he can have extra work to catch up. It will stop him stressing out over so many subjects and it means he will still have a chance to reach targets.
Hi Lynn My son (Joe who is nine) tried Modulan last year. It didn't work at all so he went on the steroid and Azacol route. It took him ages to get off the steroids and even now he is not in a good place. However I think it is the best we are going to get... Good Luck Lisa
I've also tried the Prednisolone and Azathioprine option but didn't get on with Aza so I'm now on 6 mercaptopurine but I'm also having terrible side effects. Not sure if I will be continuing or not, seeing the consultant tomorrow as I have now developed pancreatitus, presumably caused by the 6cmp. Don't know what other options are available, I'll keep you posted.
Hopefully Callum will not have too many side effects, I'm always prone to side effects with all medicines but I know loads of people on pred who don't experience anything. Pred has certainly improved my bowels - almost an immediate effect.
Glad to hear that school are being so supportive, this should take some of the stress off him.
Thats good news about Jordan and the Modulen, just a thought, Callum always prefers it cold, and what flavourings are you using? Callum didn't like it so much with the Nesquik powder, he likes the Crusha syrups. I found the smell quite revolting at first when I was making it up, but I think I am used to it now.
Callum is to start on 40mg a day of Prednisolone for 2 weeks, then reduce down by 5mg every week, also he is being put on the Azathioprine. Weekly blood tests for 4-6 weeks, and he is to continue with 500mls of Modulen every day for the foreseeable future. We've been told that he won't be susceptible to every cough and cold going, but to keep him away from anyone with chickenpox, shingles, etc. That will be fun at school, I know his school have at least one case of chickenpox at the moment!! (My friend's daughter!)
Jordan prefers it cold as well, ice cold lol, we have got flavourings to add from the hospital, he likes the strawberry best, we havent been told we can use the crusha syrups, did the dietician say they could be used ??
Good luck to callum for the prednisolone and the Azathioprine, poor thing weekly blood tests as well.
Our hospital said we could put flavourings in it, but they never offered us any! I asked what to use, and was told we could put Crusha in it, Callum doesn't like the chocolate though, it makes him a bit sicky.
Our dietician is fully aware what we use and she has never said anything either.
Yes, you should be able to get it from Tesco or Asda, although our Tesco only do the smaller bottles, in strawberry, raspberry or chocolate - Asda do it in 740ml bottles, in the aisle with the Nesquik and UHT milk.
Not sure about Sainsburys or anywhere else, I'm not close enough to those stores to know if they sell it.
I daren't run out now, Callum won't swallow it without it!! LOL
Just an update on Callum. Got soluble Prednisolone, 40mg a day for 2 weeks, and Azathioprine liquid, 75mg a day - having it made specially for him - because he cannot swallow pills, poor lad gets himself into such a state, makes himself sick trying. Had a bit of hassle with the GP this morning to get the prescription sorted, the one they initially gave me was all for tablets, 11 a day! Told them there was no way that was going to work! Had lots of help from Clare, the pharmacy manager in our local Boots, she is lovely, really knows her job - thank heavens someone did today! LOL
One dose of Pred done, 9 weeks and 6 days to go!
Revised timetable at school seems to have reduced Callum's stress already, so if this new lot of meds work as well, I might stand a good chance of getting my Son back!
Do not alter or start any medications or other remedies without first consulting a medical professional. Remember that we are not medical professionals, but merely fellow sufferers offering the benefit of our collective experience.
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