Community Forum

I am really really trying to keep it together.  I am making myself go out of the house because I am afraid that I will end up with a social disorder if I keep hiding.  I also noticed that my family seems to really get excited when I "try" to go out and "try" to eat etc.  My 4 year old will even get excited yelling Mommy is coming with us!  So I am pushing myself.  I didnt realize how much this was bearing down on them.  But sometimes I just stand in the shower and cry because it is so hard sometimes to plaster the smile on and do!  I feel like I let everyone down- and they are so happy to see me act "normal" I dont have the heart to let them down.  My mom calls me too to see how I am doing almost daily since this has all started and I can just hear the disapointment if I am not doing well.  I am so blessed to have such a supportive family-but sometimes I just want to break down and I just cant because I feel like i bring everyone else down with me.  Plus I dont want every conversation to be about my Gut you know.  This is my first flare and I am learning about this disease as I go and I hope that I will have a remission.  I tell you if I do- there is so much I will want to catch up on with my kids I will pack it all in -just in case another flare is around the corner.  Thanks for listening-I don't want to be a baby about this- but it is just overwhelming sometimes!

 Reply posted for asohn.

I was diagnosed with UC before my four children came along.  They're all grown up now, but they always knew that there was another member of our family that they couldn't see, "Mommy's Colon."  Mommy's Colon was unpredictable and not altogether pleasant to live with, but, you know, they grew up to be decent, intelligent, reasonably happy folks anyway!  So don't stress too much about your kids.  They are probably learning things about disabilities and troubles that they couldn't learn any other way.  And hey--you WILL have those wonderful periods of remission.  Enjoy them and your family!

 Reply posted for asohn.

Hi!  I actually thought I needed some type of anti-depressant because I was completely overwhelmed (I went back to work full time-teaching-after working part time for 5 years) I was having episode after episode and in between medications.  I just felt horrible for what seemed like forever.  Once I started to feel better my mood obviously was better and I was happier.  Everyone is different but when I'm sick I am so down!  I know it is noticeable but I just can't help it!  I hope you're doing better!

ngc

 Reply posted for ngc249.

So happy to read you achieved remission.  That is my holy grail right now!  My older son too was anxious - especially when we had to put them in day care for a few weeks because I was too sick to care for them- he literally sat in the chair by the door waiting for me to come get him.  I pray you have a long remission!

 Reply posted for sueymac.

I can only imagine as a mom how heartbreaking it is to watch your child suffer.  And as a mom we just want them to feel better.  You are an awesome mom!

 Reply posted for RJB10345.

I have had others mention anti-depressants and I don't know why I am holding back.  I think I feel like I am taking these other drugs so I really don't want to add another one.  However I have been on anti-depressants before and they did help back when they said I had IBS.  I guess I get angry that my body isn't working right and I just feel frustrated.  I have an appt next week and I will bring it up.  Thank you

 Reply posted for jn4025.

thanks for the kind words!  It is always to helpful to hear from those that are coping with this too and making it work for them!

 Reply posted for christenzilla.

thanks for the kids perspective- I don't want my kids to think I am ignoring them or that it is their fault-

 Reply posted for asohn.

Hi! I was diagnosed in July of 2007.  I feel for you because no matter how you slice it, this affects everyone!!  It sounds like you have an awesome family (mom) and others.  My mom does call to see how I'm doing and sometimes I just say fine, even when I'm not just because...! 

 I have 2 girls, 4 and 6 and the 6 year old is very intuitive.  I actually had her meet with the counselor at school because she was having anxiety at the beginning of last year when she started Kindergarten and I was newly diagnosed.  I've been in remission for a little while (knock on wood) and you will, too.  But, like you, I'm waiting for the other shoe to drop.  My husband is very supportive, thank God!  You are not alone and things will improve!

Hang in there!

ngc 

 Reply posted for asohn.

asohn - Might I suggest that you discuss with your GI doctor or your primary care physician whether or not they would recommend an antidepressant, at least until you are able to get yourself into remission.  At various times during the 45 years that I have managed my Crohn's, I have experienced depression during flares.  Not everyone experiences this, but it has been part of my history.  I have had pretty good results with a drug called Lexapro.  Most of these drugs take a month or two to kick in.  I have also used very, very sparingly Xanax (pronounced "Zanax"), which is an antianxiety medication.  It works as soon as it gets into the blood stream, and its calming effect helps me get off the dime.  In any event, keep talking with your doctor, continue to take your medications, try keeping a journal so you know what works and doesn't work... and know that there are others here to lend support.  Know, too, that there IS life with Crohn's.  It is a matter of getting your medication "cocktail" dialed in correctly so that you can go into remission and get back up to speed with your family.  Best of luck for brighter days! - Bob

 Reply posted for asohn.

You said something that jumped out to me about how your mom calls and you hate to disappoint her when you have to tell her you aren't feeling well.  As a mom to a son who has crohn's I realized how HE must feel.  I appreciate his honesty...but I need to sympathize without making him think he is making me feel bad. Cuz as a mom, I feel REALLY bad knowing my son is suffering.

It sounds like you have enough awareness to try to get out..and also realize you can spend quality time just watching movies together, doing a puzzle..calm stuff that is near a bathroom and isn't too exhausting

My heart goes out to you...when we are in these hard, sad, dark days, i guess we just have to keep hoping brighter days are in the future.

 Reply posted for asohn.

Just wanted to say hi and be a sympathetic ear. I know exactly how you feel. I'm a mom as well, and my kids are older now, so it's quite a bit easier then when they are young. I also know that moms are supposed to be the "strong" ones of the family so you tend to put everyone else before yourself. I'm currently experiencing a flare (UC, pancolitis) and am on prednisone. It usually works well for me, although I hate the side effects. This time the dose keeps going up, but unfortunatley it isn't working. When I don't feel well I also start to isolate myself, can't do as much as I used to, and it just goes in a vicious circle. Hang in there. I hope things start getting better for us soon.

 Reply posted for asohn.

I know how you feel. I have canceled a lot of dates because I was tired or I didn't feel very well at the time. Now a whole bunch of guys hate me.  :( So I now I don't even schedule anything anymore.

For you, its really important for you to go out an do things with your kids. I remember my mom was very depressed growing up, and she didn't go out, an she locked her self in her room. I really started to miss my mom, and I started to get depressed too. Now I am 22 yrs old so I don't need her much anymore.