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Crohn's Disease
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Posted 8/21/2010 1:46 AM (GMT 0)

Hello.  My family history of Crohn's is quite interesting.  My grandfather had it; then on to mother where 3 out of her 4 children have it. Myself included.  I was diagnosed at 17 in 1991.  In '03 I had resection surgery. Everything has been going well until recently. Due to the Crohn's there is a fistula issue that even on here I am embarassed to discuss. 

You would think with all the family backround I would be ok dealing with  this disease but I am not.  I am embarassed to talk about it with ANYONE. Between that and my new flare up, it has been a drain at work running up and down stairs to find an unoccupied bathroom.  Going to stores and breaking out in a sweat followed by chills because I do not know where the bathroom is and all I want to do is get home.  All of this is is causing me to be depressed because oddly enough I feel that no one understands.  Is it uncommon to feel this isolated ?  sad  

Posted 8/21/2010 2:33 AM (GMT 0)
Hello Day073,

Sorry your feeling isolated. I think we ALL go through that off and on during this disease. Oh, and feeling embarassed is a daily event with me! I get so embarassed by myself! Even seen a therapist. It is hard to loose control of your body and I've just had a hard time accepting that...still learning!

Sometimes, I just have to laugh and try not to take it tooo seriously. Learn how to make a "plan B's" and yes even a "C"!!

Anyway, Welcome to Healingwell! This website is a home away from home to many of us. A second family.  

Don't feel embarassed to talk about anything here. More than likely there will  be someone to help you and encourage you...

I have a history of auto-immune disease in my family too. I have some holes in the history due to an adoption. I believe it was passed down through my Mother's side...added with some Ulcerative Colitis in my fathers side. My brother has Multiple Sclerosis and was diagnosed at 24 years old. very sad.

I have to say since I've been dx with Crohns (05) I usually check in here on Healingwell at least once a day. It has been really helpful, especially since it's hard to always make it to a support group. 

Take Care

Heather June

 

Posted 8/21/2010 9:49 AM (GMT 0)

Sorry to hear ....but I think most people with illnesses feel alone and misunderstood. I dont think anyone in my life understands what I go through. I just think it comes with the territory. I wish i knew what my son feels like when his ulceritive colitus acts up? I can just try to be there for him if he asks.

My grandmother had crohns disease too.

 Anxiety attacks are pretty common amongst us. I always got them when Id get stuckin a traffic jam or at the sight of an "out of order" sign... Id start to panick, then the cold sweats, and then the cramping and  which would bring on a small flare. It was soooo rough to plan anything.

Again....Im sorry to hear you feel so alone... sadly you are not ..since there are plenty of us here for support if u need us. Wish you all the best. 

Posted 8/21/2010 2:30 PM (GMT 0)
First off welcome to Healingwell! You are definetly not alone in your fears. Many of us share the same anxiety about knowing where a bathroom is, worrying about having an accident etc. If you look in alot of folks signatures you will see that they either use a daily anti depressant med, or use an occasional anxiety med such as Xanax. I use Xanax myself on those bad days when I am feeling really anxious. I would talk to your doc about how you are feeling and see if they can help. And don't be embarrassed talking about things you think are gross, we of all people understand and nothing is too gross for us and nothing we haven't heard before. Again welcome!
Posted 8/21/2010 9:53 PM (GMT 0)
Thank all of you for your responses. I know it sounds like I am having a pity party for one but sometimes I find this disease debilitating (mentally and physically). It is so refreshing to have found this site and others who "get it".

Flowery: You are right! It IS a learning experience. I love your "plan B" idea! Thank you for your response!!

LilSisSmurf: Oddly enough the one person I would love to talk to IS my mother who has suffered with Crohns for 50 years but due to the fact that 3 of her 4 kids have it, it depresses her as she feels like it's her fault. The best thing you can do for your son is what you are doing. Just being there.

Nanners: I take Xanex only on those bad days as well. That in itself has helped because prior to that I would have to literally talk to myself to calm me down. Ever have an attack as you are talking to someone and you suddenly dont hear a word they are saying ...all you think of "ooh boy...how much time do i have... will i make it?"

Again, I am so excited to have found this site!
Posted 8/22/2010 4:24 AM (GMT 0)
I understand how you feel, My husband took me out to dinner tonight and all I really wanted was to hurry up and get home, I went shopping with my mom today and was hurting all day, came home to lay down , I get so tired of not feeling good and hurting,my family is so great and understanding but it still sucks.my husband came and kissed me goodnight while I was in the bathroom he is awsome,this forum has made me feel like I am not the only one with this,I hope that it gets better for you.
Posted 8/22/2010 7:27 AM (GMT 0)
I feel your pain too, as we all do that have to deal with this disease. I got to the point where I literally couldnt leave the house because I did have accidents all the time. So I became crohns crippled, and the best thing that ever happened to me is having an ileostomy and now I live with a pouch and I can go out anywhere, anytime. I also was like you and for many years I could not talk about my illness to anyone but now it doesn't bother me so much. I am glad you found this site too cause you will get great support here and lots of wonderful input from people who are dealing with the same issues as you are. I also take anti-depressants. take care and keep posting
(((((((hugs))))))
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