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I also am very new to this forum but am going insane. I worry about my daughter constantly- every time she goes to the bathroom my heart sinks.

I am so nervous that she won't eat enough and I am so hopeful that she will gain some weight by her appt next month.

How do handle the stress? I am scared the Pentasa is not helping because so far her stools are not much different- we have been on less than a week so far.

I am scared about what this means for her future. It seems like so one I know has to deal with this- it is so hard not to feel "why me?"

My Dr wants to do another colonoscopy in about 3 months- that seems so soon but on the other hand it would be good to know what her colon looks like after being on the med.

Also ,will you get your kids with IBD the H1N1 shot?

Sorry for all the questions- I am just so scared and confused

 Reply posted for mygirlrj.

My son was dx when he was 14-he is now 21. Things were great for 6years and then this summer we got the rug pulled out from underneath us. His crohn's is limited to his rectum-but is so bad they are recommending an ileostomy if aggressive medical managment doesnt work. It's been 3 months since he's back on remicade etc, etc. and he's had about 2 good weeks. He's away at college which makes it even more difficult. The remicade was just changed to q4wks in hopes of getting him back in remission. Our doctor recently paired him with a newly dx 17yr boy and his mother and I have been emailing back and forth. It has been wonderful. I would ask your drs to do the same. He has someone to "mentor" and I have someone who knows what I am going through. I worry constantly and am obsessed about this 24/7. I worry that he will never be happy again. This is such an emotionally draining disease that you truly need a good support system. I have found this site to be a great outlit. The worst part is, I feel so helpless- I cant fix this and it is horrible to watch your child suffer!

 Reply posted for mygirlrj.

I too am very new to this forum and it has been a Godsend.  I get tired of having people tell me when they hear that I shouldn't worry, that it is a manageble disease, they know someone who has it and they are just fine.  It doesn't make me feel any better.  My 14 yr old son was just dx and we were thrilled cause he seemed to be doing so much better after going on the meds, but now, one month later, he is slipping back.  It really worries me.  I don't like the prednizone, he is really swollen, acne and I worry about him growing.  These are his prime growing years.  It is so nice to read all the posts here, and I try to glean every bit of info I can from them!  I feel your stress.  My daughter was diagnosed with kidney cancer literally the day they told me our son had Crohn's.  So, feeling pretty blue here..

 Reply posted for mygirlrj.

Hi there,

I am brand new to this forum also.  My 15 y/o son was recently diagnosed with Crohns and this whole ordeal has been so hard to go through.  He was hospitalized and had a feeding tube placed in his nose and placed on prednisone.  Thank goodness I was able to manage the tube feed at home.  He has missed the last 6 weeks of school which his extremely hard for him as he is very smart and at the top of his class.  Thank goodness his teachers have been so accomodating.

We took the tube out last week and were hoping he would be in remission.  Unfortunatly, he started having cramps again, ulcers in his throat, and an anal fissure.  I am so frustrated and overwhelmed that I just want to cry all the time.  It is so helpful to hear from other people and know that we are not alone.

As for the H1N1 shot, my son's GI doctor was on the fence on whether or not he should get it.  She said that it is similar to the vaccine in the 70s which caused a lot of side effects.  He did get the seasonal flu shot though.

I hope for the best possible outcome for everyone on this site and hope a cure is found soon.

 Reply posted for mygirlrj.

My 14 year old son has had chrons for 18 months, and I don't think a day goes by without worrying about him. Even when he is feeling well, I'm waiting for the next flare. The fear of my other 3 boys getting it also haunts me. I love this website, check it daily, and don't feel as alone with it. I'm having my son get the H1N1 shot on Thursday, since he is currently receiving Remicade every 6 - 8 weeks. As his mother I have to do what the specialists are recommending. God Bless our chrons patients and their caregivers. Keep praying for a cure!!

 Reply posted for mygirlrj.

I think as moms we were born to worry.   Let's face it, this is a chronic illness and no cure yet (hopefully soon). 

So far as when you stop feeling "why me", I'll let you know when that day comes.   It's been almost 6 years and I still feel that.   However, I do try to just buck up and continue to make lemonade......after all, when given lemons, that's what you have to do!  Sure it gets hard, but I am grateful.  Grateful for everyday I have with her.  

I have to share what we did this weekend that I think you moms will appreciate.   We took a ride Sunday afternoon and went apple picking.   Most people would say, "What's so great about that"?   Well, I'll tell you,  I forgot the apple peeler at home and my kids couldn't wait.  So, here we are in the middle of this orchard and I just said, go for it.  This was the first time in YEARS my daughter had an apple with peel.......our new saying is "there is nothing like one fresh off the tree"!   I got a picture of it and those "ordinary/extraordinary" memories will last forever! 

As for H1N1, our doc is recommending the shot.   However, I am a nervous nelly and am taking the wait and see approach.   She isn't on a immuno suppressant, so she isn't compromised.   I just don't want to throw a monkey wrench into the whole thing.   I have my girls loaded up with hand sanitizers, preach about coughing / sneezing into their elbows.  Two kids that I know from my daughter's school ran out and got the vaccine......guess what, out sick for three days!   I'm going to wait and see on this one.

Lizzies Mom

 Reply posted for mominmichigan.

I saw my daughter's ped GI today and asked him about the H1N1.  He said when the injection is available he does want her to have it.  She's on Pentasa, 6MP and in the process of weaning prednisone.  He said he would like her to have it since the 6MP is an immune supressor.

We've been on this roller coaster since June and still today, I'd like to sit down and cry.  Why can't there be a 'cry for a cure' event?  (Yes, weak attempt at humor from a frazzled mom )  I like to think all of us have normal emotions. 

I went to a pediatric IBD support group twice now and trust me, it is NOT just the three of us that feel this way. 

 Reply posted for mygirlrj.

I was just thinking about this today while driving home from the store... wondering how long my "grief" about my sons diagnosis will last.  It seems like no matter what Im doing "IT" pops into my mind in someway.  It also seems like a huge part of what I knew about being a mom is not really true anymore, especially about how to feed my child.  I feel like overnight everything related to Matt (my son with Crohn's) just shifted.... and I haven't found my feet yet.  My mind knows all these feelings are probably very normal but at times I just want to sit down and cry.  And I keep having to fight the "why me" feelings myself.  

So, what Im trying to say to you is youre not the only one feeling this way right now (it helps me to know Im not alone in my feelings, I hope it helps you too). 

As far as the vaccine... I am calling my doctor because Ive been told contradictory things from him and what other peoples doctors said.  I want to make sure I understood him correctly and I do the right thing.