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My daughter just spent a week in the hospital for a UC flare that just would not end (it still hasn't stopped!)  One thing I am SO TIRED of hearing from people is how I have to stay strong for my child. Yes, I agree that being strong sets the example for how my daughter will cope with this horrid disease...but I don't think I am a terrible mother if I let her see me cry or let her know I am feeling sad, frustrated. etc.  I had one lady practically tell me off saying that I could not let my child see me upset AT ALL and to pretend like everything was great even in the worst of times. Of course this is a woman who has TOTALLY healthy kids!  I think they need to see that it is healthy to have all sorts of feelings

Do you guys share your feelings with your kids? 

 Reply posted for Mom2One.

I have been off the posts for a while,  job, kids sports, etc...  I'm sorry to hear your daughter has been having such a bad flare.  It always makes my heart hurt when I hear that as I wish they all felt great all the time and did not have to deal with this.  I don't think it is wrong to let your daughter see you cry and be fustrated.  Isn't this how a child learns that these feelings are okay to have and we can get past them and pick ourselves up and move on with the next step.  As I have dealt with this for over 20 years with my husband I know there will be really bad days in store for my son and it is my job to teach him that while he may have this disease that there is always hope and to just keep moving forward even when we feel really sad and fustrated with everything.  I think it has made my son a stronger person as I'm sure it will make your daughter stronger to see her mother get angry, upset, sad and fustrated yet still not give up in finding a way to make her feel better.  Best of luck to you and anytime you need to vent, that is what we are all here for you.

 Reply posted for alanschachter.

why is avoiding grains, etc. so important if you have an autoimmune disease?

 Reply posted for AZMOM.

Thank you for the replies, everyone!  I know the SCD diet works wonders for some people but my daughter has made it known that she will have nothing to do with it. I can't blame her - she is already limited in what she can eat and the diet seems SO overwhelming.  Maybe in a few years she will be more open to it

Nothing is more aggrivating that talking to a "friend" with "normal" kids and they try to give you advice. I even had one "friend" insinuate that my daughter was basically faking it because she didn't want to go to school and that I should just take her and leave her there.  Needless to say I do not speak to that person anymore!

We do go to a support group, but you can only get so much help from an hour a month. Every time I go, I have the intention of getting email addresses from the other parents and then we run out of time and everyone leaves. Thank goodness for forums such as this!

 Reply posted for Mom2One.

I'm sure Mom2One will reply and doesn't need my two cents....but here it is anyway.   

I think the issue is that when someone is posting about the difficulties of being a parent, communicating with friends/family that don't understand, etc - they are wanting to talk about the emotional part of being a caregiver.  When you respond to someone's frustration about that or a post where people really just want to vent with diet advice or treatment advice that is posted in multiple places, it is easy to see why they would want to pull their hair out.  Sometimes we aren't asking for treatment advice - just a kind ear and some empathy. 

Hugs,

Claire's Mom

 Reply posted for Mom2One.

So sorry that you are having such a tough time with your daughter's uc. I am a parent but have uc myself and had a really bad time when it flared uncontrollably after five years of folllowing my doctor's advice to the letter. I didn't feel strong or capable of taking any initiative myself but with the threat of surgery looming I tried scd and was amazed that it worked.

Please don't be offended that I have written this and do listen to Alan. It is really not so difficult to eat meat, fish, cheese etc with vegetables, and just avoid pasta, rice, bread and sugar for a few days to see if it might work (you can carry on with all the doctors medications at the same time). This changed my life around in a very short time and I feel incredibly frustrated that we are not all given this advice at the beginning.

Warmest wishes to you and your daughter. I'm not surprised you feel so unhappy, uc is just so unpredictable, but the diet route really can turn it around and more and more research is confiming this.

 Reply posted for Mom2One.

Oh and you are a GREAT mother - don't let anyone make you feel any differently than that!

 Reply posted for Mom2One.

Hi Mom2One - I've been "absent" for awhile.  New job craziness.

One thing that helped me early in the journey was the pediatric support group.  Now, not everyone had little kids.  There were parents there with kids in college.    It gave me a place that I could vent and cry and work on the emotional side of things while we battled for the physical part.  

 Reply posted for Mom2One.

I know what you are going through.  It's so hard isn't it.  My daughter was diagnosed with UC at 16.  She's 20 now and doing well.  I can't tell you on this forum what I'd say to those parents who have no clue what we go through with our kids (they'd kick me off this forum with my language).  I give them the benefit of the doubt though, maybe they just don't know what to say.  I am very honest about my feelings with my daughter.  We don't hide our feelings.   Ask you daughter how she feels about how you are reacting.  You know your daughter better than anyone so you will know what to do.  One more thing about her treatment.  I feel awful that she has been in the hospital so long.  What type of doctor are you seeing?  My daughter has been to many doctors starting with a regular pediatric GI doctor, then another AWFUL GI doctor Pediatric(I can't believe he has a medical license), then I got her into an IBD specialist (pediatric) (loved her in Los Angeles)and now that she's 20, she sees an adult IBD specialist that she loves in Los Angeles.  Keep posting and I really hope your daughter is better soon.

 Reply posted for alanschachter.

you sure never miss a chance to push your way of thinking, do you?  Regardless of which treatments we choose to follow, the emotions are pretty much the same. As parents, we hurt for our children that they have this disease. Period.

That is great you have found something that works for you that you feel good about. But you can't tell me that as soon as your child was diagnosed, you had it all figured out and didn't go with any traditional medications used for UC or Crohn's.. I want to do whatever I can to take the pain and suffering away from my daughter and if that means using medications with scary side effects, then that is what I choose to do. of course I would prefer to NOT give her certain medications, but at this point I am more comfortable using treatments that have been proven to work and that I am given with our Doctor's support, rather than try something that might work Am I supposed to let my daughter live in pain while I put her on the SCD diet and take months to figure it out?  Or while I take the time to order LDN or whatever it is? No thanks. There is something to be said for a medication that is FDA approved and used over and over.  I do not think I have seen ONE post from you that does NOT mention your way of treatment. The fact of the matter is, you do not address ANYTHING except your method...you don't talk about the emotional aspect of the disease or how it can effect a child's life or a parent's life and I see that as a very narrow-minded way of life.

 Reply posted for Mom2One.

I can't believe so many people have read this post and not one person has a reply.