*hugs* I'm so sorry you're so ill. I have CD so I've never had the fear of having a bag, but I can understand that it's a confronting option.
A couple of things though - just because your grandad passed away from this, it doesn't mean that you will. And, if you read through the past posts on here you'll see lots of people have had the operation and have a bag, and are living without pain and having relatively normal lives. This is an illness we have for life, but many people go into remission and stay there for a long time, and you may have the same experience. That happened to my friend's mum - one operation and then fine for the rest of her life (she's now 80). We all run our own race with this illness.

Talk with your doctor about the timing of the surgery so that you can start uni. Also, look at other medications - have you had Remicade, 6MP, Imuran? And also, think about some alternatives which are often talked about on here - acidophilous, aloe vera, slippery elm, flaxseed oil and omega 3 fish oil.

*hugs* for you.

Firstly I want to say how sorry I am to know that you've suffered so much at such a young age. I know you feel weak from all this but everything you've gone through has already made you stronger and wiser, you are a hero in the eyes of many!!

You don't mention the system you have in place for your health, but I do want to tell you how incredibly important it is to look at alternatives. Get yourself a reputable naturopathic physician, go to acupuncture, start taking the best probiotic you can find, start building yourself a TEAM of professionals to help you find the right path to healing. The history of others in your life should already tell the tale and prove to you that whatever they are doing isn't working. Please seek out something different! Even if it may seem odd or difficult, start the research to find something that works. Don't leave it all in the hands of one 'type' of doctor. Medical doctors will tell you straight out that they have no clue what causes this and have no idea what to do for it other than throw various drugs at it and hope something works. They openly admit this and yet we still put our lives in their hands with no question. It's scary really! Start second guessing what hasn't worked and move on to other things.

If you need some ideas just ask, we've traveled many routes and have a boatload of ideas to share. What hasn't worked for us may very well be the key for you!

I know this doesn't really matter to you but I do know a very beautiful 22 year old who got the devastating news that she will have to wear a bag for the rest of her life when she was only 19 years old. Almost 4 years later I've watched her change from being depressed and feeling like a freak to coming out of her shell and back to being the outgoing beauty she was to begin with. She is very grateful she is alive. I know it's hard to wrap your head around it but it's so trivial in the end that it really doesn't matter.

I know what you are all saying. As for alternative treatments, I would have to pay for everything myself as the NHS here in England gives you nothing like that free and I have no money at all. I am already paying for my own protein shakes, my own supplements and my own dressings and pads. They are so stupidly expensive here that I am broke all the time, I am on benefits and even without all that I have struggled let alone paying for acupuncture, I can't even afford a haircut. I have been bullied, mocked and had my head kicked in for being different all my life. If I have a bag I don't even know what will happen. I will probably stink my granddad did and even my possible future husband is talking about separate beds in case he hurts me or something, he is already totally grossed out by my crohn's without having my guts hanging out. All my doctors can do is tell me how BAD it is and never that it will ever get better.

You'll be fine. I promise. Just the fact that you're 'talking' to us, on this forum and venting your fears; that's a huge step in itself. Everyone I know (including myself) who's been bullied as children grow up as stronger individuals. Sure, one may never 'fit in', but see that as a strength rather than a weakness. I'm proud of the fact that I'm one of a kind. I was terribly bullied as a kid, but as an adult I'm good at dealing with people, in fact I do it for a living and I'm good at spotting the odd ones out and seeing their potential. I'm sorry to hear about the horrible things that your Dad did to you, but the thing is you'll have to put it behind you and get on with YOUR life. You can learn to live with Chrons. It's annoying, I know (I was diagnosed at 24, some 20 years ago now) and I hate it. But I learned to live with it. I went for acupuncture, changed my diet to a 'kind to the gut' friendly diet and gradually my body healed and I felt much better. Sure, I get ill sometimes and two years ago I had surgery to remove an inflamed part of the gut. But over all (touch wood) I'm fine most of the time. The worst thing for me, which causes a flare-up is stress. You said that you don't have any money, but you can learn to cook healthy food that work for your body, you can learn some yoga and relaxation techniques that help you relax, stretch, breath and sleep in order to help the body heal itself (all sorts of information and yoga videos on the internet). I live in the UK too and you can get acupuncture on the NHS. As your GP that you'd like to be referred to an acupuncture practitioner. Also, you can contact schools for acupuncture students and sign up for free treatments. You'll get through it, think positive, find out ways around the problems, don't see yourself as a victim but as a fighter and you'll turn it around. I promise!

Ps: Anastacia has had Chrons since she was 13 but she's managed to have a brilliant career in music. So has the guitarist from Pearl Jam and plenty of other musicians and people who have careers in music. You're not alone.
http://www.crohns4youngadults.co.uk/index.php?option=com_content&view=article&id=55:list-of-celebrities-and-famous-people-with-crohns-disease&catid=1:latest-news&Itemid=18

I'm so sorry, I have crohns colitis and after 24 years of it I haven't had the surgery. Doctors tell me when I'm in a flare about how horrible my intestines are and I have suffered something awful in my years with it. I'm in remission now but don't know how long it will last..just try and stay positive and know that we all care and will be praying for you.xxx

I think it's a terrible thing when our own country and our own people are the things that are holding us back from getting better when we are ill. :o( And yes, you are right, all these supplements and other treatments are incredibly expensive. Here we are able to right much of it off on our income tax but it still doesn't help much with the financial hole we dig for the year.

It sounds like you are feeling hopeless, and that there is no help for you in the future. I want you to know that there IS hope for you and there is quite possibly a VERY healthy life ahead of you, you will have to be creative in achieving it though since you have to many difficulties to overcome. Moon1 had some excellent advice! PLEASE look into some of it. Even if you simply start incorporating some yoga or meditation into your daily routine, the positive impact that alone can have on your overall well being may be just enough to get you the strength you need to pull it all together.

If the people in your life aren't being positive and helpful to you during this, leave them in the dust while you get yourself better. Seriously, you cannot afford to have other people bring you down or stress you out! Be open and honest with them: "anxiety and stress are only making this disease worse for me and in order for me to get better I need you to be supportive and a positive force in my life. If you cannot do this then we are going to have a problem." Your life depends on this.

Start a list of all the positive things you learn in your search for better health and keep that list with you. Refer back to it as often as you need to remind yourself of things to eat, things to avoid, activities that can boost both your physical and mental health.

i am sorry to hear what you are going through. i just wanted to give you a little hope that i was diagnosed with sever crohns like yourself in 2006 i was only 17. so i lost my 18th and 19th year to this horrible disease. but dont think that what happened to your grandad is going to happen to you because it all depends on how you embrace the disease. in feb 08 i got rushed to hospital and stayed there for 5 days n i nearly had the bag put in as an emergency but lucky i never did. i made the decision to stop smoking and to take my disease seriously n research what some people find causes flares. i have all the people on this website to thank for giving me the ideas of drinking filtered water instead of tap n cutting out tomatoes stuff like that. if it wasnt for these people i wouldnt be in remission now. so read past posts on what causes other peoples flares and try them. it worked wonders for me and this website is brilliant you get great friends and great advice. hope you feel better real soon xxx

Mhyst,

I had a colectomy in november and have since been living with the ileostomy bag. at the time of my surgery i was too sick to really understand what the bag meant but u know what? I'm leading a perfectly normal life. I'm 18, i go clubbing, i go to school, i work, i sing, i dance, i play the guitar (most importantly i eat whatever i want when i want). By no means is your life over once you have the bag. sure for like 3 weeks post surgery your rather out of it because of pain meds and recovering from surgery, but if u ask they might be able to set you up with a visiting nurse who can help you for a few weeks with getting used to the bag. i didnt think it could happen but 4 weeks after my surgery i was pro at dealing w it. sure it gets a bit uncomfortable at times but i can definitely say its a hell of a lot better then having to run to the bathroom, become deficient in iron or having to rely on drugs that have side affects like cancer.

i can imagine why you would be scared when your family has suffered from it severely but perhaps you should do what ever will keep your body the healthiest for the longest time because of your passion and dream for music.

i recently met an amazing woman from hawaii who has been living with the bag for over 30 years, she has traveled the world and volunteers in many developing nations even with the bag. she had colo-rectal cancer which also has a chance of returning but she felt that because she accepted the bag and accepted her new body, she has been healthier than ever. i feel the same way. no more making excuses to rush to the bathroom every 20 minutes or the constant pain of the disease.

of course going to the hospital and being sick is terrifying but as others have said its really good to be truly open with your GI. i had the luck of talking to over 10 GI's when i had to go to the hospital (for being too sick) and i found one who i felt really listened and comforted me. he set me up with the best surgeon as well and i have had no regrets about the surgery. were all dealt a bad card in life and it kinda sucks that a lot of us get it so young. but because of that we have to choose to fight so that we can live our lives and do the things we love to do. i send you heaps of prayers and warm thoughts cause u can do this too.

mhyst, i'm so sorry for what you are going through and i'm glad your dad has been put away for what he has done to you and now your having to deal with Crohn's it must seem really unfair.

I'm with sakurakame- i've recently had an illeostomy and now have a bag. It really doesn't smell and i sleep in the same bed as my hubby and he's almost unaware of me having it!
I understand your worries from seeing your grandad suffer and die from this disease but things have gotten better and people can live an almost normal life, it's just a matter of finding what works- which can take a while.

My nan died of diabetes but my sister and hubby both have it and are healthy and fit so it doesn't mean your doomed because you share a disease.

You have been through an awful lot and this has affected you more than you know. But as you can se alot of people here are happy to listen to you and try to offer help and support- they are my life line on here and i really dont know what i'd do without their honesty, support and friendship- which is what you need right now!

If you do have to have an operation then they can schedule it around your Term time unless it is an emergency. Yes you will need time off but if you explain to your tutors about your disease i'm sure they will be willing to do everything they can to help you.

Please dont let this disease make you give up on your dreams it's all that you have to keep you going and i believe as well as others here that you are much stronger than you give yourself credit for.

Speak to you sister and help each other through, maybe after her surgery you might see things in a different light as she will most likely be able to live again and i know that you will too.
lots of love to you x

Thanks everyone for all this support. I am on steroids now and if they fail I'm going into hospital for treatment. I have just found out that the incontinence supplies I need I have to buy myself and I have no clue where to get them cheap. I have no money for the ones in the supermarket and in boots they're like a pound a pair and I use 3 or so a day. That would leave me without money to pay bills and run my transport. Anyone who can help, please let me know. I have thought about what you have said, acupuncture scares me, I hate pain and I hate needles!

*big hugs* I'm so sorry sweetie. I know how you feel. My CD is becoming more and more of nightmare...I'm on pred, azathioprine, and remicade now, and trust me I've tried everything else. I've been on the pred for more than 2 years straight now and it's destroying my knees. I really want to get the surgery done at this point because nothing else seems to be helping me get into remission but neither one of my two doctors want to remove my entire colon so they keep throwing new meds and dietary restrictions at me. I used to be afraid of the surgery and even more upset about the bag, but I am now so exhausted I can't wait for relief.

Hope you feel better...sending you lots of love :)

they may be able to resection ur bowel so u dont need a bag permantly they somtimes remove the bad part and give a bag tempfor healing then reatach the bowel later if it keeps u alive its worth it and having a bag has advantages, u wont poo urself if u take care of it u wont have to always know asap where the loo is and u can empty it on ur schedule somtimes i wish i had a bag i was resectioned and since then i have bowel incontinence like every where in the car at homein the stores at my lil girls school, any way u can live a great life with a bag and dont they have remicade where u r? if so try that my doc uses remicade first then humira if remicade stops working or u have a reaction and cant take it , look into remicade and good luck and try to look at the positives in things that seem reall y horrible i garuntee there is at least one positive in everything

I have had remicade, did not work for long, lasted 6 sessions then failed to work any more. I can't have humira in uk, it's not licensed for crohn's in my trust area, I do not really care what they do as long as I can do my degree and have my son back, if that means a bag, tough luck me so long as I do not die a horrible death like my grandfather, I fear this so much, my sister almost died too from it, collapsed and had to be rushed in with organ failure/dehydration. To be honest, I am terrified of this disease and its symptoms, when I had it back in summer, I was convinced my guts would burst cos of the agony I was in, worse than labour, I had 24 hours of med free labour and it was nothing to the crohns spasms as you will all know I am sure. One thing, anyone had headaches with it, I started Ensure liquid nutrition drinks two days ago and the headaches have mysteriously gone away, do you think it could be a nutrition problem? I don't have the runs with them either. Hugs to everyone....:-)

hi i am new to this group,there are so many of us out there.i have had sevale surgeys taken more meds than i care to rember. I have been sick all my life .have you ever heard of pentasa? i take 32 pills of this a day 500mg. nortriptylin 25mg at bed and chlord/clidi 4 times a day befor i. eat my daughter is on prevacid30mg in the moring,amitripyline 50mg at bed 5 pentasa 500mg a day and she is on remicade every 6 weeks. she is doing a lot better. find a doctor who will listen to you .have you had a lower or upper gi done?you will have this for the rest of your life,and so many go into remission for years you need to find a good doctor ask questions. you need to talk im here.