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I feel really sad and hopeless for my newly diagnosed teen.  I know I should be positive but Im so afraid for her. That she may not respond to her meds, that these meds will make her ill, that there is a chance she may not have the quality of life she deserves.

I know Im totally projecting. But I feel a sense of loss, of not being in control.
I can't explain it.  This is the first time I've had to deal with a serious illness with her.  A chronic illness. Can anyone relate? I'm just sad.

Thanks for listening.  I'm sure I'll feel better tomorrow, but everything is hitting me now, now that she is home from the hospital.

 Reply posted for lisaw.

Do follow Alan's advice. It can make a huge difference.

 If it seems too overwhelming just take time to read and educate yourself about the health benefits of reducing carbohydrates and omega 6 oils in the diet. Alan gives some great references. For me SCD is the best but it is really just a refinement of low carb with extra benefits for IBD. At first sight it looks like a rather peculiar mixture of strange cheesecakes and nuts which I think often puts people off. My interpretation is that these are really just trying to provide a substitute that looks like a food that might be missed and there are plenty of normal things to eat.

To make it really work I think it is vital to replace the carbs with plenty of good fats (butter, animal fats, cold pressed olive oil, coconut oils, no refined oils) and don't think it is good to eat low carb and low fat.

Many say they feel guilty when diet is mentioned. To me, so long as plenty of things that are enjoyable to eat are available it does not need to be stressful but it is probably best to aquire a good understanding before jumping in. I see the strong drugs as a safety net which, thankfully, looks ever more remote.

Good wishes for success whatever you decide but stay open minded and never stop educating yourself.

 Reply posted for worriedmom0962.

I am new on this sight and just saw your post I have a 11yr old that has not responded to her meds for colitis and is on prednisone (again) she is so sick and I cat help her. she plays competitive softball and cant play right now. the next treatment is remicade and I'm scared to death of this medication .  I'm just so sad and scared all the time I don't know what to do. have you or anyone that reads this found help in anyway? maybe a parent group?I need to be strong for her.

 Reply posted for worriedmom0962.

Hello worried mom:

 Reply posted for worriedmom0962.

I know what you are going through. It has to the hardest thing we ever have to exsperience, having a very ill child. My son was diagnosed 3 & 1/2 tears ago when he was 10 yrs old and has not had any remission at all, none of the medications or IV drugs has worked, he just graduated from 8th grade and going into high school next year, he is only 4' 2" tall and only weighs 77 lbs, he has only grown a few inches  and he is only 5 lbs heavier since he was diagnosed, I am so worried about how he will be treated in high school (picked on). We are now faced with removing most or possiblly all of his colon, which means a colostomy bag for the rest of his life, he is very upset, as are we, we have tryed every diet and nutritional supplement regiment out there, yes we did them faithfully and strickly, no cheating! Nothing has worked, we are one of the few that has this extreme of a case in such a young person, it isn't always so extreme, in most cases it is treatable with much success. It is hard and you will always wonder and worry if they are getting any better. My prayers go out to all of you parents and your childeran. We have to try and stay strong for them and for eachother, because as we all know Crohn's doesn't just affect the patient, it affects the whole family. Take care and try to be strong, I know it is not easy. Ty's Mom

 Reply posted for worriedmom0962.

I understand how hard this must be for you.  I do n ot have a child with Crohn's but I just found out that I do.  I now spend my time trying to figure out what this will me for me and worried one of my kids will end up with it.  I never could have gotten the doctors to test me had it not been for my son getting sick a few months ago.  His doctor brought up Crohn's but said he did not feel it could be that because he was not loosing wieght so he put my son one heart burn pills.  So far it seems all that was wrong was acid building up and causing his pain and to vomit. 

I see what my mom has gone threw with me being sick she worries and she tells me how my dad has cryed.  Your daughter needs to know you are going to be there and you will be her stranght when she does not have any.  I stoped telling my mom everything because I know she will not be able to handle it all and what I need right now is a rock.  Cry with her, laugh when she laughs scream when she screams but just don't make her feel like she does not have a rock.  You are only human you are going to have good and bad days too but stay strong for her and in turn she will be able to be stronge in away you may need.  I wish you both the best and that she finds the healing and comfort she needs to live her life fully.

 Reply posted for worriedmom0962.

This is a marathon, not a sprint.  I was diagnosed with Crohns when I was 17 years old.  Now, at 44, I look back at all the highs and lows, to include periods of long remission (10 years) and periods of frequent vicious flare-ups.  Remicade restored my quality of life about 7 years ago.  There is always hope.  God gives us just enough to handle, and then he gives us some more to handle.  My lowest point was yesterday when my 11 year old was diagnosed with pediatric Crohns.  A crushing week of waiting for all the tests.  But, I'm convinced the devil that I know is better than the devil I don't know.  I have to keep my positive attitude for my kids now, not just for myself.  Hope this helps.             

 Reply posted for worriedmom0962.

Believe me, as a mom, I can understand your sadness. But, as someone who once was a child with crohn's, I have to tell you how much your daughter needs you to take your cues from her right now. Remember, she too is full of emotion. It is important that you not overwhelm her with your sadness. Instead, make it safe for her to experience her feelings.

Like so much else in parenting, you'll need to model the most sane response—even if you're not quite up to it.

 Reply posted for worriedmom0962.

Hi,

 Reply posted for worriedmom0962.

WOW--I just read your post, and can I relate. My 25 year old son finally had a definitive diagnosis of Crohn's Colitis this week. He had been suffering with diarrhea and pain, since October. I had an episode of Major Depression, because all I could see was what happened to my mother. She has an ileostomy, because of her Ulcerative Colitis. I could hardly move. I did not want to be around anyone. It was bad. So bad, that one of my mental health clients (I am a therapist) was able to see my mood state. I lived on the computer.......seeking all the information and support I could find. The one good thing for me, was finding the low fiber/low residue diet. My son found relief from the pain. His running to the bathroom was lessened. I realized (after going back into therapy), that I needed to take care of myself if I could be any kind of support to him. I have returned to the land of the living. I feel bad about his diagnosis, and wish that I could take this burden away from him. The only thing I can do, though, is try to stay on top of information regarding diets and meds, so that I can help him be an informed patient. The book from Tracy Delassandro is a wonderful book. I bought a copy for both of us, so that I can make him healthy meals when he visits (occasionally---he lives a couple of hours away). I hope that helps you to see that what you are going through is normal.  Take care of yourself.   Lorraine

 Reply posted for worriedmom0962.

My daughter was diagnosed with UC when she was almost 11.  After the diagnosis I followed her lead.  She did not seem phased - but she was thirsty for knowledge.  She got books from the library and I joined her.  For the past 2 years we have studied just about every book available on the subject. 

Her first year and a half were mild.  We both thought "if this is what UC we can deal with it."  Then last April arrived and we discovered what a severe flare was.  We carried through 8 days in the hospital and 3 months rehabilitating at home.  The experience actually drew us closer together.  Considering she is 13 going on 14 - this is phenomanal to me because this is when most teenaged girls try to test their parents :)

It is an emotional roller coaster, but even through our worst episode, I have to say we have more good days than bad.  Sadness is a normal feeling and it is ok.  Hang in there...

Any parents wanting to chat via email, please do

onedreamer@juno.com

 Reply posted for mylittleguy.

It is normal but I find that you have to keep your child's attitude positive. That is half the battle. My 9 yr old granddaughter had UC, she just underwent 3 surgeries. She had a bag for about 3 months and last week they did the reversal (took bag off and now goes normally, her intestines working as her colon)

It is like a MIRACLE. She feels wonderful, looks wonderful and I can't even believe it to be honest with you! She was operated on at Boston's Childrens Hospital and the surgeon was fabulous. It is a great hospital. I hope all goes well. My son and his wife made this hard decision but it was the best decision they have ever made for their little girl.

 Reply posted for worriedmom0962.

I just wanted to thank you all (again it seems ) for sharing what you've been through.  The phrase "loss of future memory" that Jill mentioned totally sums up what I am experiencing... I look at my 11 year old with Crohn's (diagnosed July '10) and see a huge, fearful question mark!  I've been feeling really alone with all this lately and reading this thread has been a comfort.  Just hearing that it took many of you months and months to adjust makes me feel maybe what I'm going through is normal.

 Reply posted for mom2davis.

I am always surprised to hear how I have helped others. Thanks! You made my day. 

 Reply posted for worriedmom0962.

What you're feeling is normal. You may experiencing what some researchers call the loss of future memory. See, we all think of the things we want for our future. Mine was a college degree, a career in writing for newspapers, a colonial in the suburbs, marriage, kids, dogs and eventually a condo in Boca. No one ever imagines, "Hey, and then I'll be diagnosed with a life-altering, at times life-threatening, incurable illness." That would just be weird. 

 Reply posted for worriedmom0962.

Hello -

I wanted you to know I can relate.  Davis' doctor suggested a book by Jill Sklar called "A Patient-Expert Walks You Through Everything You Need To Learn and Do, The First Year, Chrohn's Disease and Ulcerative Colitis".  When I first read the book I would have sworn they were reading my mind!  It is a process. My son was diagnosed 6 years ago and I still refer to this book during the ups and downs. 

You are in my thoughts and prayers. 

 Reply posted for mylittleguy.

If any of you parents want to email....I'd love to hear from you.

My son is 4 and has UC.

mylittleguyuc@ymail.com   and I'm his mom.

 Reply posted for FlowerPower.

I'm thankful we have this site to vent to others and ask for ideas/help!  My son was diagnosed 1 year ago with UC at age 3.  I was depressed and cried at first, then realized things could always be worse. I always try to remind myself of that. Our kids are alive, unfortunately with this terrible disease, but alive. I try to think of what parents are going thru that have kids with a terminal illness. We are only given what we can handle, and we have to be strong for our kids. 

My son got on track last year after he was diagnosed, had a few flare-ups, and then back on track again. It's been a year and now the DR says his labs indicate his colon is inflamed badly and wants to do another colonoscopy and think about other drugs.  That sent me into another 'feel sorry for myself' mode and so I logged back into this site. I'm not feeling alone since I have you parents to correspond.  It's tough with your family and closest friends have no idea what UC or Crohns is and the heartache it does bring.

hang in there.  it gets better!!!!

 Reply posted for worriedmom0962.

My 6 yr old was hospitalized and diagnosed with Crohn's this summer.  It was on top of the arthritis diagnosis at age 3 and the neuro complication early in the spring.  I remember feeling strong amidst the crisis and then completely falling apart once we got home.  I'm telling you all this to say (like the others have said) you are NOT alone in your feelings.

It's okay to feel overwhelmed and sad and as a Mom, of course you are.  While you know it will be okay in the long run, it doesn't make it any easier right now.  So my only words of encouragement is that like someone said earlier, you'll get a glimmer of the light at the end of the tunnel soon.  And when she is better - which she will be - you will be better.

Praying for you both -

Claire's Mom

 Reply posted for Lizzies Mom.

Hi. I'd like to thank EVERYONE for their kind responses. It's so great to have such wonderful support in my time of confusion and acceptance.
I am grateful that there are treatments available, and that my daughter does have a chance at a normal life.

I suppose I just want to be in control here and I guess I'm not! LOL
Thanks again and  have a good weekend!

 Reply posted for worriedmom0962.

Hi Sad Mom- I know exactly how you feel. My daughter was diagnosed in Oct 2009 and I have been a wreck. I have never cried so much in my life. I did not think life would ever be the same.

This is a lot for a Mom to deal with. After much thought I decided to get on a low dose anti-depressant. I need to be strong and function for my daughter and my family. My Dr even gave me some Ativan for when things were too much for me to handle. It helps!

Things will get better- it is so hard not to feel overwhelmingly sad. I still do. Now I try to take the good days and be as normal as I can.

My older daughter was really starting to suffer from my depression so i had to take charge.

I think as Mom's we can all relate to you- this is a tough pill to swallow but I believ it will get better in time and we have to be strong and believe for our children. It is normal to have ups and downs.

We are all here for you. ((((((((((((((((HUGS)))))))))))))))))))))))))))

 Reply posted for worriedmom0962.

Oh gosh, I know exactly how you feel.  My daughter was diagnosed 12/10/08 at age 10.  For the first month or so I think I was on "auto pilot".  I became depressed and took a leave of absence from my job and ended up quitting a month later. I would take my daughter to school knowing she was going to have kids make fun of her puffy face (from steriods) and how sad she was that none of her clothes fit her (she gained about 15 lbs in a few weeks.)  I would get in my car after dropping her off and just cry.  NO ONE understood -- all my friends have perfectly healthy children. It was horrible and I should have gone for counseling - my daughter did get counseling for about 6 months.    I often feel sad for her and it's hard not to show it.    I am scared to go to local support groups because they are for adults and I don't want to know a lot of the stuff that could happen - I am just not ready and it scares the heck out of me.  I could go on and on...sorry, this is your post and not mine. I'm happy to talk with you if you would like to email me privately. Hang in there!

 Reply posted for worriedmom0962.

Dear Overwhelmed,

 Reply posted for worriedmom0962.

Dear Worried Mom,

I can absolutely relate.   I was in the same position as you 6 yrs ago. The only difference was my daughter was much younger (4).   The only way I can describe it is that my world felt like it was spiralling out of control with no end in sight.  

After the initial shock,  I think I fell into a type of depression, though I never sought professional advice. Once my daughter was stabilized, I made the choice to pick myself up, dust myself off, and make the best of what I had.  I began to educate myself.  I had never heard of this disease until that hot summer day when our doc called with the final biopsy results.   I burried myself in every book I could get my hands on (not so much on the web, there is too much inacurate info there...enough to make a mom insane)! 

Over time, I would say it was a good 6 months of retraining myself of what groceries to buy, and doing the trial / error food elimination thing with my daughter did I begin to feel "hey, this is somewhat doable".  Don't forget, she was only 4.  We would make adventures of going to the grocery store together to try to find some "safe" foods / and more of a variety that she would be willing to try.  We are blessed that she isn't lactose intollerant, so it made things a little easier regarding milk, cheese, ice cream, etc. 

Worried Mom, stay the course, you will begin to see the light at the end of the tunnel.   It does take a lot of time, patience and persistance, but now that you found a capable doc and your daughter is home, the dust will settle and things will become more "normal". 

Embrace today.......God Bless

Lizzies Mom