Hope = good news

[golanv]

I just wanted to give all the parents out there a little more hope. It is the 10th anniversary of my son's diagnosis. We postponed his 14th birthday party while we waited for the diagnosis. He spent his 16th birthday in the hospital and we were just grateful that he was alive on his 17th birthday. He turned 24 recently, is married and has a great job! People see him for who he is and not what he could have been if he had not been hit with this disease. He takes his medicine daily. He has good days and not so good days. He listens to his body. He LIVES his life. Remicade was an experimental drug and he was the guinea pig. It worked when nothing else did. As time goes on, new and better drugs will be found. There is a light at the end of the tunnel.

 

[DustyKat]

Thank you so much for posting golanv!

I hope all continues to go well for your son and his not so good days are very few and far between!

Much love, :Karl:
Dusty. xxxxxxxx

 

[Silvermoon]

That is so awesome, golanv! Congrats to him and to YOU for obviously being such an awesome parent!

I was diagnosed when I was around 11, and am now 30-something (*cough, cough*), and I know I couldn't have gotten this far without the love and support of my parents (and my hubby - now married 13 years!). With love and support I was able to finish my nursing degree and become quite a well known and respected nurse in the area (at least that is what people keep telling me :redface: ).

Times can be tough, and we all have our "flares" some longer and/or more devastating than others. Soemtimes the path you have to take isn't quite the one you would have chosen when you were younger. But listening to your body and making sound choices, even with severe disease, can go a long way to leading a healthy, happy life.

Thank you so much for your post. I hope it gives other parents (and patients) out there the will and the hope to keep going and stop thinking it is the end of the world.

Love and squishy hugs from The Moon

 

[Brian'sMom]

golanv,
Is he still on Remicade?

 

[golanv]

Kathy,
He hasn't had a dose of remicade in a few years. He was on it regularly for awhile until he got things back under control. He knows how to catch things before they get out of control as long as it is something he can control, ie strep throat. Of course, sometimes it seems to come out of the blue. Because there are no good studies of long term use on younger people, his doctor reserves it for last option meds.

 

[vness1208]

its so good to hear that I always wonder if my daughter will be able to pursue her career and achieve her goals in life. shes 13yrs old and has wanted to be a dr even before she was diagnosed and Im not sure if thats going to be possible anymore w/ crohns but its so good to hear that there is hope. thanks for sharing

 

[Brian'sMom]

Golanv,
How does he 'catch things before they get out of control'? He must be on some kind of drugs now to retain remission? Our GI doc acts like Brian will be on Humira as long as he stays in remission. No plans to stop it ever since they feel that if he stops, he'll flare. Does your son have regular colonoscopys done to make sure he isn't missing any damage from inflamation that may not have obvious side effects? Its encouraging to me that maybe as an adult you can 'maintain' by other means.
Thanks for sharing!

 

[golanv]

Brian's Mom,
He is only a daily drug. He does see his gi doc regularly and has sed rates and colonscopies regularly. Recent example for catching things early: his wife got strep so we were pretty sure he would get it too. No signs until his urine showed blood. Immediately to the urologist who contacted the gi to adjust the meds to prevent a flare. The strep had gone to his kidneys. This type of thing usually sets off a flare but fortunately with medication adjustment, he was fine. He moved into a very different climate and different water...this could set off a flare. Went to doc to monitor and things went well. (slight adjustment to meds)

 

[Brian'sMom]

Golanv,
Wish it could be that easy for my son! His crohn's was affecting his height and weight and doing damage to his large intestine all the while taking the milder drugs. The only thing that has helped is Humira.

 

[golanv]

Brian's Mom,
I am glad that Humira is helping. My son's height and weight were affected but not noticably. He is about 6 feet tall...his brother, who does not have Crohn's is about 6'3", their dad is 6'4". My son is the "short one" in the family but still not abnormal. He is thin and his weight goes up and down. It seemed like I could control the stress factors as a child but he has to do that now. As a mother, I still want to take care of everything...
I gave him lots of extra calcium...any food that was fortified with extra calcium and that seemed to help his long bones. He broke his arm and wrist but they healed ok. I also fed him high iron foods. Fortunately for me, he ate whatever I gave him!
Good luck...maybe you can look at his favorite foods and see if you can pump them up some how!
will be thinking about you

 

[Brian'sMom]

Golanv,
Thank you so much for all the great advice! I really appreciate you giving your input. Its helpful to talk to someone whose already been there! And comforting to hear about your son doing well as an adult. It gives us 'newbies' hope.
My son had a friend over today that we haven't seen since school got out (late May), I noticed that Brian is only a few inches shorter than him...he used to be quite a bit smaller. I mentioned it to the boys and his friend said, "ya Brian, you used to be below my chin". I am so encouraged!!!! He's catching up, finally!!!

 

[golanv]

I am really glad this forum is here. I was so busy and overwhelmed when I was going through everything with him that I never really sought out any kind of group. I wish I had. I have another son who does not have Crohn's and is 20 months older than the one who does. They were always close in height. When the older one hit his "growth spurt", he was almost a foot taller than his brother. We didn't think much of it, thinking that his brother would also hit that "growth spurt". Well, his growth steadied. This was before the diagnosis. I thought it was odd but since the doctor said his check ups were fine, I didn't think much of it. Now I think it is a little more telling.
Just keep pouring the calcium and other minerals to him giving him what his body takes away much too quickly and hopefully he will hit his "growth spurt"!
Glad he is having fun with friends!
golanv

 

[AZMOM]

Kathy!!!!! That makes me smile for Brian and for you!!!

J.

 

[Kat]

Thanks for the HOPE! I know one day we will all celebrate a world without Crohn's!!!