Son with crohns

[tannersmom]

son with crohns

Hello
I am new to this forum and just looking to find some parents with children dealing with this awful disease.
My son starting getting sick(diarrhea, stomach pain) at the age of 6. First really big symptom was a huge rectal abcess, which was drained with surgery 3 times. At that point his surgeon felt he may have Crohn's and set him up for a colonoscopy. And of course was diagnosed with Crohn's, he was 7 at this point. We started out with one gastro doc but wasn't happy with him so decided to take my son to Cincinnati Children's, which was the best decision I have made so far. Anyway now 4 yrs later, many meds later and an ilieostomy later we have found ourself looking at another huge decision. After Tanner's last scope and the fact that the ilieostomy and the med he is currently on(leukine) hasn't healed his colon, they started the discussion of removing his colon. I am not sure I am really dealing with this or the thought of it. I can't imagine at age 11 if we start removing parts of his intestines what will happen in another 4 yrs!
My heart breaks every time I see the boys his age that used to include him in things, playing football, basketball and knowing that on most days my son can't keep up with them. My heart breaks everytime we have to tell my son yet one more med or treatment we have put him thru hasn't worked at all. My heart breaks when once every week my son has to have blood drawn to make sure all is ok. My heart breaks because although he never complains or says much he has to wear that bag on his side and you can tell he is very uncomfortable with it.
On top of this I am trying to work full time and finding that dealing with it all is becoming just too much and noone seems to understand. Tanner and I go each day minute to minute. What a way to live!

 

[Crohn's 35]

:welcome: Tannersmom... you have come to the right place,there are many people here to help you. I have not had an anal abcess or a small child that has CD. I do know about being a mom and when your child is very sick, there are no magic words to say except I am sorry you and your son is going thru this. Big hugs to you both. Welcome !!

 

[Dallies]

Ahhh Sweetie, I really feel for you and really don't have the words to comfort you except we are all here for you. I'm a parent of a 16 year old daughter who was diagnosed with Crohn's this spring and had a small bowel resection in August - she is doing really well now - but at the time I remember looking at other girls her age and thinking "why my baby????????????????" and wishing it were me and not her. I send you and Tanner lots and lots of love xxxxxxxxxxxxxxxx

 

[My Butt Hurts]

Awww, the most important thing for him is that YOU understand.
We are all here for you whenever you need to vent or ask questions. Glad you found us. Welcome!
MBH

 

[kello82]

hi tannersmom and welcome

horribly ironic that your son and i are at almost the exact same crossroads. i had my ileo done a couple years ago and crohns is still quite active....the docs want the colon to go. they have for years and years, but just like you, my parents and i feel soooo strongly against tossing out internal organs at such a young age. well i am 20, 11 man thats even harder to face such a decision. exactly like you said...what will happen in 4 years? 10 years? making such a permanent decision early on in life is just so.....permanent. would hate it if they have a cure in 2025 and my ileo is already forever.
also worry what if a colectomy doesnt necessarily improve the crohns in the way the dr's "think" it will. then what? thats scary to me and im sure to you too.

anyways my point is just that you and tanner arent alone in this by any means, and im glad you came here to find some company =]

i would be happy to talk to tanner if youd like or think he would be interested. i was diagnosed when i was 9, started getting sick when i was 4....so i did the whole crohnie childhood thing too. its tough, kids are mean about things they dont understand.
id be glad to try and help him through the extra challenges he faces as a kid with this crap.
feel free to pm me for anything at all, ok?

good luck and welcome again

 

[DustyKat]

Hi Tannersmom and :welcome:

Oh my, what a difficult and heartbreaking time for you. We have another parent here, Dexky (Hi Dex :bigwave, that has a 10 year old son and is also from Kentucky, no doubt he will be along to offer his support.

I am also a parent and I understand your overwhelming fear, confusion and heartbreak. My daughter is 18 and was diagnosed with Crohns 4 years ago following emergency surgery. I hear you so clearly when you speak about the medication, the bloods, the loss of normality for your baby, the difficult decisions, the fear of the unknown and the fear of the future. My daughter is in remission and I guess if I am honest with myself I see now that Crohns has shaped her life in many ways. Of course there are the negatives, she has been left with short bowel syndrome and this but one among many, but I can't help but think that there are many positives as well. I will never know if my daughter would have become the young woman she has if she didn't have Crohns but somehow I don't think she would. I don't think she would be so passionate about life, I don't think she would be so compassionate, I don't think she would be so driven and determined, I don't think she would be so insightful, I don't think she would be such a warm and caring human being. I didn't think I would reach this place in my thinking of this disease.

You are in a dark and scary place right now, as is your son, and we will be here for both of you every step of the way. I haven't heard of Leukine before. With such a major decision to make would it be worth getting a second or even third opinion. I know it is hard to think about putting your son through this but I think I would like to know what others may think or have to offer.

Thinking of you both and sending loads of healing thoughts and hugs your way....

:hug::hug::hug::hug::hug::hug::hug::hug:

Take care,
Dusty

 

[Dexky]

Hi Tannersmom!! Wow, I can very much relate to your story!! EJ's eleven now and while our crohns story hasn't been as dramatic as Tanner's, not a minute passes that we don't think about it. EJ also has PSC which is a progressive liver disease that has enlarged his spleen and forces him to wear a spleen guard during any physical activity. It virtually excludes him from sports because it renders his mid-section immobile. He really loves baseball too!!

What an agonizing decision you have to make!! I can't imagine!! We are all here for you!! You have found a safe place to let it all out!! Kelly up there has really been through hell with her crohns. I'm sure she can offer valuable insight as to what Tanner thinks and feels. I hope we can help alleviate your fears in some small way!! This forum has meant a lot to me as I've learned to deal with EJ's diagnosis. Please keep us posted!! Just use this thread over and over to let us know how Tanner is doing!!!

Again, I have no idea what you must be going through, but we are all here for you. You can use Private Message to reach any of us!! All the best!!

 

[tannersmom]

Thank you all for your words of encourgement, understanding and support. It is nice to have a place to let all of my thoughts worries and fears out to people who truly understand, let's face it most people don't want to hear it so most of the time you keep it all bottled up with that all is ok smile on your face.
At the moment Tanner seems to be doing well, we go back to see his gastro doc and the surgeon on Oct 15th to discuss when the next scope will be. So praying for a miracle with that. And while I hate this disease and it does have alot of negatives I have to agree with one of the other moms. I think it has made my child a better person, he is compassionate, so patient and kind with other people. When he was able to take Tae Kwon Do there was a young man there that had downs syndrome and Tanner had just met him but Tanner was the one to take the time and help him put on his gear and talked to him. That makes a mom feel good and so proud. And I myself have learned alot, I now know what is really important in life, not that some days I still find myself short with my loved ones but I know what means the most in life.
I pray everyday as I am sure you all do that they find a cure for this horrible disease, and I admire the people who have this disease because I know they go thru hell and most of them I have met or talked to are so upbeat and strong. My son is the strongest person I know, he really never complains and I have never heard him say why me.
Anyway thank you all, praying for each and every one of us