Tracey, look at how many responses you have gotten on your "post"! YOU ARE NOT ALONE! All of "us" understand the pain, the discomfort, the insecurity, the issues...(on and on....) ALL OF IT. Again...you are not alone! "WE" understand...and as frustrating as it is that "they" (i.e. your family, friends, etc.) do NOT understand...is understandable. WE (all of "us") must learn to live with chronic illness. "They" do not.

NO, you can't "see" it, but it is REAL. Attitude is everything. WE must MAKE LIFE HAPPEN! And...be happy (one life..this is it, make the best of it). Truly, it can be done!

I wish you well Tracey, always! :o)

but we do understand the feeling of being alone..

Since I've had this disease for the past 10 years, I have never felt so alone in all my life.

Sure, we have plenty of online friends, but it isn't the same, so I understand exactally what you mean Tracey69, and wish there was something I could say to help, but there just isn't, when I myself have felt more alone then ever these days.

oh, and another thing,

while I do agree that diet is not the cause of this illness, it CAN help a great deal in keeping the symptoms down to a minimum.

I know alot of people with crohns don't like to talk about this, but I've been on the SCD diet for several years now, and although I do not agree that its a cure, I do think that with a proper diet, the major symptoms of crohns can be put in remission, without having to take a bunch of different medications, so I would not dismiss the possibility that a healthy diet might help.

Most importantly, a healthy diet, can help you, by not having to be near a restroom every moment of every day.

I've had Crohns for 10 years, and during that time, I've been thru so much, but since I started this healthy diet thing, I no longer have diarrhea, constipation. I now feel like I have some control over this illness, which trust me, really does help things a great deal.

but above all, no matter what anyone, or anyone from a diet website, says to you, there is NO cure for crohns, and honestly the way things are going in the world today, I don't think their ever will be, but we do have a choice.. We can choose to either eat what we want and end up in ER every other day, or having diarrhea all the time, OR, we can choose to at least attempt to do something about it, by sticking to a healthy diet, so at least we don't get any worse, having to be close to bathrooms the rest of our lives. That much, we do have a choice about.

Ok! What is the SCD diet? I'm not so good with those short term words LOL. Well I have UC for the last 15 years and the bathroom is my best friend" No not really"Having a healthy diet that includes "Veggies" But those are the food items that just kills me. I'm taking Asacol 6x a day and it seems it helps a great deal,the other thing is now my joint are hurting since I take this med. I have no symptoms of my UC since,which is good! But know I can't hardly work! Any adwise out there? I just don't want to change my meds again. : (

I also would like to know what is SCD please explain.I wish I could say things are getting better but they are not.The only difference is that my children are starting to see how sick I've been and are worried.It's hard to explain to them when I don't understand it myself.

I have had Crohns Colitis for 34 years. Was misdiagnosed the first 15 years or so. Pathology with blockage and peritonitis determined diagnosis. Recently was in remission for 3 months for the first time since original symptoms presented all while I am going through a very bad divorce (it seems being away from him has helped tremendously). But because of financial reasons I have had to ration food and at this point am living in a home with no water (think flush). Last month I had no air conditioning with triple digit temps. I started swelling and bloating and went right back to daily pain escalating as the day wore on. I am not complaining though because for 3 months I enjoyed a pain free existence which was priceless and something many crohns people never get to experience.

I thought it was interesting though that most people I talked to during that time just could ot get the fact that I still needed medseven in remission. Why was I normal? Remission is no cure. It cannot replace the bowel that was removed with both of my surgeries. Daily meds are just that and they go on. Right now because of lack of caloric intake and food in generalI have had to stop taking some meds because they need to be taken with food and it was causing horrific pain to take them without enough food to support them.

Yes it can be every lonely because as most of you have identified, we look healthy and unless others actually walk in our shoes, there is no way to truly empathize. My explanation to people has generally been Its like having the stomach flu every dayon my best days and then on my worst days makes hard labor pale in comparison because at least with hard labor you know it is temporary and there is an end near.

I am anxiously awaiting FDA approval for trials of the humiric version of Remicade. The docs will not chance Remicade for me because of extensive medication allergies.

We need a cure. I know most likely it will not happen in y lifetimewe need more research. Also research to support organic or non drug treatments with a study to go side-by-side along with the drug trials. The results would be interesting.

It is a lonely road my wife and kids are such a blessing to me and as much support and love I get from them its still is lonely sometimes. Over the past few months I have heard of several people in my community who has been diagnoised with CD and I try and pass my phone number out and open myself up as someone they can identify with so far nobody has called but thats ok I will always be available if they decide to.
What makes the lonelieness worse is when I cant go on the hike and explore with my kids or when I have to change plans with my wife at the last minuet because I am to exhausted and I havent even done anything all day.

I know exactly what you mean, I found out that I had this is high school and none of my friends understood me at all. I felt so alone.

I've noticed that I am very exhausted lately and really stressed out with everything in my life,I feel that I have nothing to look forward to anymore.I wish things could be different and I can find happiness.

Yes, I feel that way at times and I'm also going through a Medical Evaluation Board and may be separated from the Air Force because of Crohn's. I have strong faith but at times I get depressed and lonely because no one understands this disease except my wife. She had a friend tell me "Oh..your just lactose intolerant..." ah...know I have to take 20 pills a day and watch what I eat..it goes a little further than lactose intolerant.

One of the things I find very uncomfortable is when people ask me "How are you today?" I dont know how to respond so its usually Im doing OK even when Im not. However I did meet someone who when I asked him that question he gave a unique response. "Im detierorating (SP?) day by day?" All I could do was empathize with his answer I couldnt even ask him what was wrong. I tried his answer and just got some really strange looks.

Tracy, you are NOT alone, there are thounds of us all over the world, here is the best place, because we DO understand, we DON'T judge people, we are hear if you need to talk to someone, we Don't let you down or make excuses,
i live alone but i have friends on here, we are thousands of miles apart, but we are close enough to be friends, we are only a hug away.

I would once again thank all of you who care so much and its nice to have people who understand what I am going through on a daily basses.I want so much to go back to work but can't even do that until I get this some what under control.I am on no meds at this time just waiting to see doc to try some other meds!Hope they find something fast!I just wish my family would understand more!

Hi Everyone, I hope it is okay that I am joining your conversation. I think this is a really good forum and I have appreciated what you all have been sharing. I really was in particular touched by topic of this discussion "lonely disease." I work for a communications firm, and our client is involved in Crohn's research and awareness. I've been trying to pass along to them what I feel Crohn's patients want most and what they need. So I have been reading the forums and attempting to gain perspective. But I really feel your opinions are more valid than mine. Is there anything you would want me to share with them?
Best Regards
Tanya

When i had active disease It was very painful and stressful. After awhile when you go into nonactive disease things start slowing down. It something you have to deal with on a positive note. Things do SUCK for a long time but keep peaceful and calming thoughts. There is a light at the end of your tunnel. You are not alone........Remember that. All of us have had the same trying times. Keep your head up:)