Crohn's Disease Support Group

I know that after suffering with such a horrible disease for so long we need to explain to others about what we are going through, but some people don't want the details, but they should be able to tell us that while they are sympathetic they have issues in their lives as well.

You have us Chrissiejb to pour your emotions and physical pains and anxiety to. We do understand from first hand experience.

Thanks Lyris, I appreciate all the support I get here. I know in my heart I have been guilty of not really listening to people for example who have a cyst removed because that seems such a minor thing to me. Since I became aware of that I have really tried to listen to people who have health issues and need to debrief no matter how big or small. I also don't even mention to most of my family when I'm having issues cause I don't see it does any good. Just makes everybody uncomfortable.

Perhaps they feel helpless. As for cysts sometimes they can be more than minor.

I had several of them removed from my breast and one time it was a big one. The surgeon was horrible with his uh-oh remarks when he examined me. So I don't pass anything off as minor anymore.

I know you are hurt because you apparently weren't invited, but if you want to show that you are above the snubbing, you can always buy a gift and send it to the Mother with well wishes.

P.S. I would have been upset too, but the best way to make the other person feel bad over their rude behavior is to be kind.

Thanks to everyone for sharing your experiences and opinions. Sorry for any short replies the last two days i have been using my mobile phone because I have been to exhausted when I get home to sit in front of the computer.

Yesterday was the first day I actually saw bloody clouds in my stools twice and I called and wanted to talk to my mom since my fiancee doesn't talk much about what I'm going through, once again my mom said that she thinks it's my diet, the dr cannot be right that he can't go based on my symptoms and bloodwork she appears to be in denial and I realized yesterday she must have some guilt from all the years she made comments about my stomach.

To all of you who responded your insight and personal experience with this disease has made me more aware and opened my eyes that sometimes we ourselves who are going through this are the only ones who know what it's like and it each touches us in different ways. I am grateful and lucky I found this site so I can learn

from all of you. I made it my goal to alert people on my facebook and twitter to this disease. Not for personal support for myself but just so they can educate themselves and be empathatic to anyone they may know personally suffering from this.

Also my fiancee sat down the other day and said she believes she may be bipolar and that's her belief for her mood swings. I suggested she seek medical help but she is hesitant I suggested she comecome on the forums and educate herself about bipolar

I will keep reading the forum and hopefully have enough energy later today to personally respond to each message on here.

Post edited by: cafonez, at: 04/22/2011 07:01 AM

There is a bi-polar support group she can join just to talk about it and see what people there think since they have been diagnosed.

For Chrissiejb - I know that is a very painful situation for you. I would probably go by whether I was invited or not. It stinks, but it is her choice.

For Zaftig - Who are you kidding? No one says things better than do you. I agree with your list of reactions except I would add one. Hostility. Sometimes people get angry because they feel we brought this into their neat little lives and it upsets them.

For all - This topic certainly generated a good deal of response. Thanks to Cafonez for bringing it up.

Cafeonez, has your fiancée ever had her hormones checked? I was crazier than a run-over dog for a while because my female hormones were so out of whack (and yes, there were times when I was convinced I HAD to be bipolar). Perhaps she could have her OB/GYN evaluate that aspect of her health?

Your fiance should seek help from a specialist. Neither she nor your mother or doctors.

I think she's afraid that she's insane. I don't know much about bio-polar, but I know that an insane person doesn't know right from wrong. At least that's what I learned in college decades ago.

I have a daughter who is L.D. and in the last few years she's been having panic attacks and was convinced she was going insane. I had to convince her this wasn't the case, but she should see a doctor to make sure this wasn't a warning that something else wasn't wrong.

It's kind of like depression. People don't understand why you can't just pull yourself out of it. Doesn't work that way. Family has your best intrests at heart they just don't know how to tell you that. I go through it with my wife all the time. Before we got married, I was pretty sick. I laid out what life is like with someone going through Crohn's. She's seen my at my worst (she would be exstatic if the worst thing I dealt with was being in the bathroom a lot)

That said, she still gets frustrated. Remember they are watching someone they love go through something that no one has any control over. My way of dealing is to try not to talk about it or show anyone I'm sick. In my line of work, if people think I'm sick, I won't work. It's just the way it is. I've also had Crohn's since I was 6 so it's all I've known.

When you feel like things are out of control, start here with this forum. Therapy is a wonderful thing as well. Family can only handle what they can handle. Generally I find that it's less than we would like

I really never talked all that much about it to anyone, I mean would you go up to a neighbor and say, I have a disease that gives me diarrhea? I'm cramping really bad and I am always running to the bathroom and sometimes don't make it?

My ex husbands and my daughters lived with me so they know the effects of it. They know I have pain and feel very sick, but they will never know exactly what it's like, and I don't dwell on it.

At this time it's mild, I haven't had a flare up in some time and I rejoice in that. I take it one day at a time.

Since I now live alone they don't have to know what's happening and I'm very glad of that. They have their families to care for so I don't want to put any kind of pressure on them. I have my doctor for that.

I am so sorry that echodog had Crohns since a very young age. Children are supposed to have fun and play and run around. I was nineteen so I had a childhood, I am really really lucky because from what I've read in this forum a number of you have had it really bad, which makes me upset more that there isn't a cure.

I blame the pharmaceuticals because they want their trillions every year and if scientists come up with cures they'll lose their riches. And many doctors have an invested interest in not finding a cure as well.

Ever seen prescription ads through out their offices?

I am now getting off my soap box guys. My anger is mostly for your suffering.

I have had issues with depression and have been on Medications for it. I wish in a way I had kept that to myself and not talked to so many of my family and friends though because if I get upset about something it has been said back to me that I'm only upset because I have problems with depression. I reckon that for me it's my hormones to Zaftig. I can realate a lot of these down times to hormone overload and of course sterroids haven't helped. I feel like I'm winging a lot on this discussion and really I have a good life so I'll stop it right now!!!