Pissy Day...Week...Years!!!

[tannersmom]

Just having one of those days I just want to sit and cry. I don't have Crohn's but my 11yr old son does. Going on 5yrs now since diagnosed, no meds have put him into remission or helped for long. Had an ilieostomy and in December had all but 12 inches of his colon removed and the ilieostomy reversed. So things should be better now and in most ways they are..EXCEPT for the constant trips to the bathroom, the major weight loss, the low sodium levels, and now the chest pain! I know you shouldn't envy anyone but I envy parents with healthy children. Parents who send their kids to school and really have no worries. Oh they get the occasional call from school, your kid has a fever or sore throat. When I see parents post on FB oh no my kid has strep or a little fever, I smile and think if only. My child lying in bed last night as I was giving him his cortifoam(embarassing for an 11yr old boy) says I am so tired of this, so tired of feeling like this. What could I do but say I know and I am tired of it for you. 5 years now and not a break...Life just isn't fair!

 

[mario]

My heart breaks for you and your little boy. I agree life is NOT fair. It's hard enough for us adults to cope with this crap but for the children it is just plain cruel! When i was diagnosed a doctor told me that if you have to have an inflammatory bowel disease, then Crohns is the one to have. Reason being there is a lot of research in the field, particularly stem cell. I hope they find something soon which will help your little boy and all the other little souls who are suffering. You are obviously a very strong lady to have coped with this for so long and for that i congratulate you. Don't give up hope now, who knows what tomorrow will bring!!

 

[tannersmom]

Thank you Mario. I try to hold all my anger and frustration in and be strong in front of everyone but some days you just have to let it out. Thank God for wonderful people like you and others on this site.

 

[Lisa]

Having been that child (minus the surgery but plenty of hospital visits!) I can feel for your son....and for you.....

I don't recall- but has your son tried Remicade and/or Humira?.....hoping that he gets feeling better soon - it CAN and does happen!!!!

 

[Guest9283]

Just having one of those days I just want to sit and cry. I don't have Crohn's but my 11yr old son does. Going on 5yrs now since diagnosed, no meds have put him into remission or helped for long. Had an ilieostomy and in December had all but 12 inches of his colon removed and the ilieostomy reversed. So things should be better now and in most ways they are..EXCEPT for the constant trips to the bathroom, the major weight loss, the low sodium levels, and now the chest pain! I know you shouldn't envy anyone but I envy parents with healthy children. Parents who send their kids to school and really have no worries. Oh they get the occasional call from school, your kid has a fever or sore throat. When I see parents post on FB oh no my kid has strep or a little fever, I smile and think if only. My child lying in bed last night as I was giving him his cortifoam(embarassing for an 11yr old boy) says I am so tired of this, so tired of feeling like this. What could I do but say I know and I am tired of it for you. 5 years now and not a break...Life just isn't fair!

You are right TM, life isn't fair. I was that little boy, just like your son at 12 years old. I always envied other children also, and wished I was healthy, and that I could go to school. It was like this for many years growing up. I wanted to be normal so bad... I even taught myself how to drop a nasal gastric tube down at the age of 15. I would drop it down every night to feed myself, and take it out in the mornings, just so I could spend a few hours in the classroom with other kids. I did this for 2 years. Prednisone dependent for 3 years. Temporary ilieostomy. It made me want to be normal so bad, that it eventually motivated me to exceed others out of sheer determination. However it took me 10 years to learn the secret of doing this. It starts with changing your outlook. A complete change. You have to some where in there, turn around and become positive through it all. Sometime what helps me is looking at others who have it worse off than I, that still manage to carry a smile, and stay positive. It not hard to find those people. There is always someone worse off than you. I can tell you, that despite having this commonality with your son, I've grown up and enjoyed some wonderful relationships, with great woman. I've managed to support myself, along with the spoilings of every toy a grown man could wish for. Vipers, vettes, bikes, boats you name it. What I'm saying is, I've still managed to be happy, and enjoy my good times. Sometimes that means making the best of the bad times. My attitude comes from my mother btw. What a great influence a mother can be. Some of the strongest woman around in my opinion - mothers of children that have crohns. I've never really been "normal" though...not until now. I don't have crohn's anymore. I did a stem cell transplant. That was in July 2010. 6 months later, and I am feeling great, loving life, and making the most of it. Please try and hold onto some hope. We're getting to the point in time, where we're finally able to beat this disease through modern medicine. If I were a betting man, I would bet your son has the possibility of a brighter future than anyone could of hoped for in the years to come. Stay strong mom.

 

[Astra]

Hiya

I've just posted on Bev's thread about chest pain, you can read it there.
Ask your doctor about Costochondritis
Hang on in there, you're doing a great job with Tanner
xxx

 

[Rebecca29]

My heart goes out to you and your baby boy!!

Hang in there!!

 

[Guest]

big hugs to you and your little boy..

is the constant trip to the loo issue because he still has active Crohn's, or is it simply a 'plumbing' issue because he has so little colon left? if it's the latter, has he been given anything to slow & thicken the output at all?

just because he's now reconnected doesn't mean that what comes out is going to be any more solid than when he had the stoma - and there are treatments to help this.

also the low sodium issue.. have you tried giving him rehydration drinks?

 

[AZMOM]

Tanner's Mom- I SOOOOOO get it and we haven't had the surgery route. Bless your heart, you need to let it out. And I am with you on the envy. Even with close friends, I sometimes want to scream YOU JUST DON'T GET IT.

You are a great Mom and he WILL get better. He just has to. In the meantime, you vent whenever you need to.

Big hug from southern KY,

Julie (Claire's Mom)

 

[tannersmom]

Mr. Ziggy I read your thread about the stem cell transplant! So interested in that and I keep asking about it but his docs say there just isn't enough research yet and none for kids. I am praying though. Tanner is a tough kid and I have never heard him say why me. But 5 years of no relief is starting to effect him, praying things turn around for him soon. I told him yesterday that he is my hero! I have learned so much from that kid, he is amazing and this disease has made him so compassionate and caring for others. So guess that is our bright side!

 

[Rebecca85]

Glad you have found a bright side. And tanner is lucky to have a mum like you.

 

[Guest9283]

Mr. Ziggy I read your thread about the stem cell transplant! So interested in that and I keep asking about it but his docs say there just isn't enough research yet and none for kids. I am praying though. Tanner is a tough kid and I have never heard him say why me. But 5 years of no relief is starting to effect him, praying things turn around for him soon. I told him yesterday that he is my hero! I have learned so much from that kid, he is amazing and this disease has made him so compassionate and caring for others. So guess that is our bright side!

First let me just say that I have not met anyone who has done the transplant, and have had their GI ok with it. Empty opinions, covered by the exuce of it being too new. Even though we have been doing bone marrow transplants forever. You know one of doctor Burts very first patients was 15yrs old. He is still crohn's free. They are busy constructing a building, in Chicago, opposite the one to where Burt is performing his transplants. This I believe is going to be the new childrens hospital. I asked dr burt about Dexys son before. He said thats where you would go to have it done.

You know its ironic that your hero is your son. My hero is my mother. I am sure Tanner will grow up to feel just the same. I think the bright side also lies in the bond that you have with your son. It will only grow stronger in time, and past the days when he is well again. That is a bond that i don't think any regular family could understand or attain. I hope your day ends a little better than it started. You and Tanner sound very lucky to have eachother in your lives.

Take care.

 

[Dexky]

What an emotional read for me mom. We've had nothing like the problems Tanner has had, but I can definitely empathize with you. It is not fair for anyone, let alone a child. Like Zig says though, our children will have a much better hope for the future than those just a few years ago. I know you'll never lose hope for Tanner, but try not to drive yourself crazy. Things are getting better all the time!!

 

[chrisnsteph1022]

I'm so glad I'm the one with the disease and not my child. I'd take it any day over putting my child through this. I can't imagine how hard it must be for you to see him suffer.

 

[Shake-N-Jake]

Tannersmom, first off just let me say youre a great women for standing by your son! Trust me you are very crucial in helping him stay strong! Im sure it gets very tough on you but just keep venting here as a means to cope! My Parents have pretty much abandoned me! No Im not 11 Im 30 but as an only child who was very close to his parents......not having them makes it very hard! Im glad for tanners sake he has you! Mr Ziggy is right, the future is bright for our illness and I know a cure cant come soon enough but its coming!

 

[tannersmom]

THanks Dexky, chrisnsteph1022 and Shake-n-Jake. Things(knock on wood) seem to be improving some for Tanner. Bathroom trips seem to be slowing down, maybe it just took a little more time and patience is not one of my strong points! Having people who truly understand what Tanner and I go thru means so much, even family members don't truly get it. Tanner is upbeat and gets to start archery again on Friday, if the weather cooperates that is.

 

[Dexky]

That's great mom. I thought about Tanner last night when EJ had to have a suppository for scope prep. It was much more humiliating than anything. Glad things are getting better! Hope it continues that way!!!

 

[tannersmom]

I have so wanted to just blow up on people who say stupid things but have held it in. It made me feel so good when I read that you just let it fly Dustykat. When I do blow though and I am sure I will, Lord help the person who is getting it!LOL
I totally get what you mean about their loss of privacy and dignity. Tanner is 11 and will be 12 this year and I haven't been standing over him now since things are improving. But when Tanner had his ilieostomy I had to help him shower and he never would learn how to change the bag himself so I did all of that. I am so glad that Tanner is now getting a chance to not have me hovering over him so much. Tanner seems to be doing well but got a call from Cincy and his 6mp levels are thru the roof but labs aren't showing any issues with the liver, pancreas or kidneys so we had to half his dose.
I pray both your kids are doing better Dustykat, thinking of you all and love that I have all of you to talk to!

 

[mario]

Tannersmom. So glad to hear Tanner is doing better, really great news! Hope he continues to improve so he gets some reprieve and you get some peace of mind!!
Dusty - Good for you!! Sorry but i had to lol!! Lucky for your guys that they have a great mum to stand up for them!! Hope things improve for Matt soon x

 

[AZMOM]

I was thinking of you this weekend. How was archery? Was he able to go?

Claire tried out for and made the local swim team. Well, actually it is the "pre-team" but still, she gets to practice and has a coach. It is the first time she has been healthy and stable enough for us to really commit to something. Anyway, she got out of that pool exhausted and grinning and it was so normal I just nearly burst into tears.

So anyway......I thought of you all and was hoping that you all returned to some sense of normal for the weekend and it was kicked off by practice!

Hugs,

 

[Dexky]

I have so wanted to just blow up on people who say stupid things but have held it in. It made me feel so good when I read that you just let it fly Dustykat.

It was funny, wasn't it mom! And so out of character for her too:rof:

 

[tannersmom]

Well archery went well but he is still weak that will improve though. He is getting back to hisself and like you said AZMOM it just makes me smile. He was out and about all day Saturday playing with his friends, means the world to me! He had his follow up yesterday at Cincy and he has gained weight, bathroom trips are decreasing so as long as this continues and he has no other problems we don't have to see his doc until April!WooHOo!!! To see that smile and watch him acting like a boy his age makes my soul happy

 

[mario]

And to see this post, compared to the one at the start of this thread makes mine happy!!

 

[MADiMarc]

Yeah for Tanner & Claire! I started reading this thread the day it was posted and just couldn't bring myself to say anything. I have sooooo much respect and admiration for you parents out there that support your kids in all ways possible. Dusty, love the social worker bit! I think we all need to take lessons!
Michele

 

[AZMOM]

Tanners Mom - I'm SO GLAD! Here's to kids that are tired from playing instead of from IBD!

Hugs,