So... I was diagnosed with Crohn's disease about 2 months ago, after begging my doctor to refer me for months on end of agonising pain and diarrhoea, weight loss etc. Was originally told I had IBS and to take cocodamol and Imodium. I had also had a couple of accidents in my car which has now made me absolutely petrified of long drives or going on a train. A train is a no go. So I paid to go private, had a colonoscopy endoscopy and low and behold It was confirmed as Crohn's. So started on steroids and salofalk which done nothing, now changed my medication to sulfasalazine and another steroid as MRI showed it's also in my small bowel which is why I get sickness most days. I've put on weight which is great but I still feel unwell most days. The fatigue is horrendous too, I find myself sleeping as much as a young child would. Going to bed early, sleeping on my lunch at work, getting home from work and falling straight asleep again. Even changing my bed is hard I end up sitting down half way through because I get tired so easy. Not to mention the joint pain, the list is endless. To cut a long story short I feel so alone. My boyfriend turns out to be a waste of time, he doesn't understand that I feel unwell most days, he seems to think I'm 'making it up'. I don't know anyone with Crohn's either which makes it worse as no one understands. A lady at work actually referred to it as 'your IBS thing' with a wave of the hand as if to dismiss it completely. I also have to come home from work regularly because of the cramping and diarrhoea. If I'm perfectly honest I just want people to talk to about it, I have no one to relate to about it and I'm scared to death of the thought of having it for the rest of my life. I cried about it for the first time today since I found out, and I just feel like I'm not going to be able to cope. I've only known for two months that it's Crohn's and I'm already questioning whether I'm depressed or just fed up, so how am I meant to cope for the rest of my life. I'm just really scared if I'm honest. My parents are great, but other than that I don't have much support and I get the feeling people don't think it's 'that bad' and dismiss me when I say I dont feel well, so I've taken to just getting on with it without saying nothing.
I feel so alone
- Thread starter Ruby21
- Start date
Help Support Crohn's Disease Forum:
nogutsnoglory
Moderator
- Joined
- Sep 23, 2009
- Messages
- 8,908
I'm sorry you are going through this. I understand feeling alone and misunderstood and the fear of travel and accidents. This is a great place for support but an in person group might be fantastic if you have one near you.
The best thing is to work within your means and not be hard on yourself. This disease is not your fault and hopefully with proper treatment will be in remission soon.
The best thing is to work within your means and not be hard on yourself. This disease is not your fault and hopefully with proper treatment will be in remission soon.
Hi Ruby21, I was know exactly what you are going through. I was diagnosed a couple of years ago and still (to some degree) feel alone. Although my husband is very supportive deep down I know he hasn't a clue what I am going through. I am in remission at the moment, but I still get upset and cry cause it is hard dealing with a disease like Crohn's. My advice to you is to surround yourself with people who love you and will listen to you, on your good days and your bad.
Talking on a forum also helps me, cause you are definitely not the only one who has these feelings, some people on this forum have many years of symptoms and research that can help. Sometimes I find the people on this forum have more of a knowledge then the doctors and specialists.
Stick in there Ruby21, it will get easier. The best thing I did was start a food diary, it really helps me pin point problem foods.
Good Luck
Talking on a forum also helps me, cause you are definitely not the only one who has these feelings, some people on this forum have many years of symptoms and research that can help. Sometimes I find the people on this forum have more of a knowledge then the doctors and specialists.
Stick in there Ruby21, it will get easier. The best thing I did was start a food diary, it really helps me pin point problem foods.
Good Luck
I totally understand what you're going through. Nobody really gets it except for people who are going through it. Most of my friends really don't understand. I really believe some of them even think I'm faking it. I've had inflammatory bowel disease for 17 years. Most of my friends really don't understand. I really believe some of them even think I'm faking it. I've had inflammatory bowel disease for 17 years And some days I don't know how I'm going to get through it, but I'm learning to try and take just one day at a time. This forum is so useful and people have been very helpful. You will find it very comforting. Hang in there and stay strong and know that you have a lot of people you can turn to on this forum.
