
Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Terribly Severe Crohn's-SCARED

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I have had Crohn's Colitis since Summer 2008. It was so terrible that they dare not even do the colonoscopy properly, they put it in a few inches and had to stop. The disease has not responded to anything, not steroids, or antibiotics, and the infliximab only worked for 3 months and now I am in a major flare up again. Humira is not licensed in the UK for Crohn's where I live. I am 25, I am a musician and I am going to University in September this year. I am terrified they will want to remove my colon and give me a bag, I would rather die than have that for life with the prospect of it coming back anyway even with that. My granddad died in 2002 from it, he had a bag all his life and eventually they cut so much gut out, he died of malnutrition and deficiency, and suffered abcess, stricture, fistulas and 9 surgeries. My sister also has it really badly and they are on about surgery for her too. I have spent my whole life suffering sexual abuse from my father and only in 2006 did he finally go to prison and I was released from my 23 year hell. Now I feel like my whole life is over again with this disease. Will I be able to go to University if I have surgery, what if they want to do it in september and it spoils it for me? I have dreamed of a career in music all my life and it seems likely I will get it if I can just do this degree. Oh God I am so sorry this is so depressing, I have never been so afraid in my life.
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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.
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.
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
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 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.
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
Hope you feel better...sending you lots of love :)