My family doesn't know

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jc_poarch
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/12/2009 7:06 PM (GMT -6)   
I am a new member here, I just signed up a couple of days ago.  I was diagnosed almost 10 years ago with UC.  I don't know anyone else who has UC, so I couldn't believe when I found a place where there were people just like me!  I'm so glad there's a place like this to hear about other people's stories - good or bad.  I've never truly been in remission, so I just thought this is how my life was going to be.  I rarely see my GI because I feel like I'm a science experiement, where he can't try different drugs on me.  After reading other's stories about other meds they are on, I've decided to make an appt with my GI to see if there is something right for me. 
 
Thanks to everyone who tells their stories on here, it truly made me feel less alone in my UC.  My family doesn't really know what I'm going through, because I am very good at hiding my emotions and anger about my disease.  It's great to know that I'm not the only one who has "accidents".
Jessica - 29 years old
Dx at 20 years old with UC
Married and mother of 2 (a 3 and a 5 yr old)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/12/2009 7:19 PM (GMT -6)   
Honey, bottling up your anger and fear is the absolute worst thing you can do. You need to have someone you can talk to about this, because it's part of your life and likely always will be. In my case, my husband has been my greatest support. In your case it could be your partner, a parent, a close friend. Your family also needs to know at least enough to understand why there are days when you can't do what you normally would, or are depressed, or are short-tempered.
 
There's a whole lot that can be done to help, and there are a lot of us here going through pretty much the same thing. Welcome, and I'm really glad you found HealingWell.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 1/12/2009 8:25 PM (GMT -6)   
I would say welcome, but I wish we all were not be here for that reason! :-) I was lucky, I found this forum after I've got diagnosed, 6 month ago, so it makes easier transition for me from normal life to UC life! As I say, It's not me sick with UC, it's UC sick with me!!! :-)))
Diagnosed with left-sided UC on Sept 08 (about 45-50 cm). Never has been in remission.
First has Colazal 5x2day, then switched to Lialda 2 per day (so unusual to take just 2 pills)
Canasa 1 sup. every nigh
Vitamins: Zinc, B complex, Fleexsead Oil capsules.
Digestive Enzymes (helps a lot)


jc_poarch
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/12/2009 8:42 PM (GMT -6)   
LOL, I guess I'm just frustrated that I can't do things with my family especially my kids, because I let the bathroom rule my thoughts. My husband is a great support, but he "thinks" he understands...example - The other day my hubby had D all day ---A Very Rare Thing for Him!! Later he said to me that he now understands how I feel.....................No you don't!! Having D for one day is nothing compared to almost everyday day!! I know he tries to understand, that's why I try not to complain alot. Thanks for welcoming me, not the best circumstances, right?!
Jessica - 29 years old
Dx at 20 years old with UC
Married and mother of 2 (a 3 and a 5 yr old)


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/12/2009 9:10 PM (GMT -6)   
I feel for ya... and agree with other comments. You need your support network and family to know. Mine have a little trouble understanding why I couldn't go sleddin with the kids the other day. But at least they know there is a reason and its not me being a jack a@@. They really don't understand, but they realise. and that helps. If you don't have this disease, then you really can't understand. But being aware does help. Welcome and I'm also sorry you had to join us. But life goes on. It is by no way over.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 1/12/2009 9:10 PM (GMT -6)   
You should definitely see about getting some help. I was like you a few weeks ago, dealing with constant bathroom trips. I have no insurance, I was trying so hard to deal with the symptoms, figuring it would eventually let up. It didn't. I hadn't seen a GI in between one and two years and my symptoms had gotten much worse. I finally made an appointment to see a new GI and paid out of pocket about a month ago. I got some medication and I have somewhat gotten my life back. I can go out for a full day and not worry too much about the bathroom. I can eat breakfast before work without taking 4 trips to the bathroom afterwards. There are options that can help you. I try to tell my boyfriend about the challenges that I face and he doesn't get it. He thinks I exaggerate or that I make it out to be something bigger than it is. It is sad, if he really cared, he would do some research and find out about this illness and make an attempt to understand what I go through. I don't tell my friends and family because I don't want to get everyone worked up about me. I am about your age and I guess I am trying hard to be my own person and not lean on anyone too much. My friends are all chatty and judgemental, I don't need them mixed up in my personal business. In other words, I don't have any real friends... Take care of yourself & go see a doctor.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)

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