does any one feel alone

alternativehealing- i do actually agree with you there are some doctors who dont understand and some who do. i have been round the bend with doctors and had to try to find an alternative which is the raw diet. it has not cured me but has helped. any way i had to change GPs over here, they kept on just dismissing this desiese. they all said i had hemmroids, they said there was nothing wrong with me and a girl my age could not have anything wrong. I was 28, i had to pay private and then i got dignosed. i get dismissed by doctors alot, you have to get the right ones and there are not a lot. for me i keep getting passed on to a consultent when i should be speaking to a gi doctor. this consultant is nice but does not know about ibd. she even told me that she knows nothing of this illness. It has taken me ages to even get this pred foam. it was luck that i saw the right gi to help with this flare as it needs to get under control. so yes there are some doctors who know nothing, I now have a better gp practise than my old gp pratise, there still about 5 gps who work there and i still had to hunt the right one. I hate it when gps tell me i have hemmorids, ive never had a gp give me the correct answer about hemmroids. ive never even had hemmroids. so i do know how you feel on this subject. any way what alternative healing do you do, i will always listen to everything.

Hellokitty,
Until I joined this board I had never communicated with anyone that lived with uc. I did and still do feel somewhat alone. The hardest part has been my best friend who never gets sick. No matter how many times she sees me in the hospital, running to the bathroom or in bed for weeks at a time, she just pretends there is nothing wrong. Reading personal stories about having to run out and buy new clothes in the middle of the work day because you've soiled your first set really helped me feel less alone. I have never told anyone where I live that I have had to do that. All the information and resources people have given me here has really helped to make me less scared and less alone.
I hope you feel better soon.
Cynthia

HelloKitty,

What you're feeling is normal...when I was going through one of my worst flares (couldn't leave the house even to go into the yard) I'd be sitting watching T.V (hard to watch a whole show without having to go to the toilet tons of times) I even got to the point of thinking about the people on television, about how nice it was for them to be out walking around, sitting in a restaurant, ect and thinking to myself god I wish I could do that...this disease can really take it's toll on your mind and often the worse the flare the worse it is on you mentally/emotionally...not every IBDer will be able to understand some of those feelings either and that in itself can make you feel alone...but you're not alone, I know exactly how you're feeling/what you're going through and I empathyze with you because it's a horrible place to be...

when I finally started feeling better, those thoughts went away too, I strongly believe that being able to exercisse regularly (have a home gym) made the world of difference, not just for my disease but for me emotionally as well. Talking with a therapist is good too (I didn't have that option cuz I couldn't leave my house) but whatever way you deal with it so long as you're able to deal with it is what counts.

Thoughts are with you HelloKitty and if you feel the need to get more indepth with how this disease is making you feel on an emotional level make sure you post about it, reaching out in anyway will be helpful.

HUGS :)

I am so used to bad things happening that I sit around wondering, what's next?? Not only am I depressed and generally negative, I also happen to have a lot of difficult situations in my life. Not entirely my own personal situations but family members have their own difficult situations and they all weigh on me. I don't tell my family about my stuff because I don't want to weigh them down any more than they already are. Once my sister asked me if I had Chrons and I said, No. I don't have Chrons though, I don't think I do. How does she know what Chrons is anyway? Makes me wonder if I have a secret relative out there with Chrons disease. Makes me think I have Chrons. That and the "patchy inflammation"... Paranoid, huh? Not that it matters either way.

Gotta keep my head up and hope tomorrow is better. Look for the things that make me happy and enjoy the time I have with the people I love. When I can't do that, spend time trying to make other peoples lives better. What else can I do? I don't work, I don't want a family, I live 3k away from everyone I know, I have nothing too worthwhile going on in my life... Pointless to sit here and wallow. I have to remember I am fortunate to have a warm, comfortable place to rest my head and money to eat. When I was very sick and underweight, anemic, flaring, unable to get out of the house for any length of time, I still found ways to be productive and feel okay about life. I met someone who is now a bestfriend and laughed extremely hard so much of the time with her. Stayed inside in the freezing snow and ran to the can between sentences but I don't wish I was taken because I've had so many more exciting experiences since then... I know it's difficult but put my dog next to me and I am instantly 100000x better. Funny the things that make me happy.

I say this now but tomorrow I will be wishing I died at birth. Go figure.

guys i have re read your posts to me today. and just wanted to thank all of you for your support, and kindness. i do get over emotional about things but. thanks to you guys the raw food form as well, im more balanced. thanks quincy for you saying that raw might seem as a failer but its not and it was ok to feel sorry for myself. that was such a great boost to me, and my confidence. thanks guys. love you all, :)

I heard a statistic from one of my GIs, 1 out of a thousand people have UC. So you're not alone. I understand the difficulty that arises from not being isolated when it comes to the world of food. I feel the same way all the time. But I have met a handful of people who both have UC and Crohns and they come from all walks of life from health practitioners to young teenagers to people my age. Hang in there. One thing I do suggest is to always think outside of the box and explore many different avenues if you can because your UC is your UC. It's a different case for everybody. You don't need burgers and fries anyway, there are better things to eat out there...

Diagnosed: Jan 2008
Meds: 20 mg pred, asacol and rowasa enemas
Seeking an answer with alternative medicine

sunnyisagirl,

Have you checked into local support groups in your area? Besides comming to HW, which is great, you may find being in person with other IBDers in your area to make you feel less lonely...also, you'd be surprised at the more people you tell about your disease, the more people that will know someone else with it (or even themselves that don't usually share it with people either)...IBD awareness is getting better, but it's all word of mouth, the more you talk about it to people the more awareness on it spreads.

:)

Hellokitty does have a point about the disease being rare: "Ulcerative colitis occurs in 35–100 people for every 100,000 in the United States, or less than 0.1% of the population." So more often than not, chances are you will not come across someone that has it in your daily travels.

Those statistics are overwhelming and it's easy to feel alone but thankfully there are support groups and sites like these that bring people together.

And yes I do feel alone as well.

I think its somewhat easier to deal with the disease if you're already in a committed relationship with an understanding partner. It really sucks having this disease and trying to socialize and start relationships. Hell the anxiety of that alone can throw you into a flare.. So yea its quite easy and normal to feel lonely when you have UC. No one can truly understand what you go through daily unless they also deal with UC.

A year and 1/2 ago my mom had just came back from being overseas and was going through a bad case of diarrhea and literally was stuffing herself with immodiums and still living in the restroom. She could barely work and was embarrased by the constant trips to the restroom and calling in sick. (It lasted for a week) After that she told me she now understands what I have to go through daily. Was quite an awakening for her and made me feel like for once someone truly understands my situation.

Christine1946, here is the link to the site: http://emedicine.medscape.com/article/183084-overview

"The annual incidence of ulcerative colitis is 10.4-12 cases per 100,000 people. The prevalence rate is 35-100 cases per 100,000 people."

Here is another source which is reviewed by the medical board so it may be more accurate: http://ibdcrohns.about.com/od/diagnostictesting/p/ibdepidemiology.htm

"How many people have IBD?:

It is widely estimated that between 1 and 1.4 million people in the United States have IBD. (Some experts indicate that this number may be an overestimate.) In Europe, the number of people with IBD is estimated to be 2.2 million.

In the United States, the prevalence of IBD is:

* UC: 100 to 200 people per 100,000 people
* CD: 30 to 100 people per 1000,000 people"

This is still a very low percentage of individuals even in America. It's understandable that many people (worldwide) are posting on healingwell as it's the first thing that pops up in a google search for "ulcerative colitis forum".