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16 Year old daughter facing 1st surgery


Thu, September 11, 2008 8:31 AM

16 Year old daughter facing 1st surgery Hi

  My 16 year old daughter is facing her first surgery since being diagnosed at 11 with Chrons. She has tried steroids, imagine what that does to a 11 year old..lol Remicade for 5 years and now Humira which didnt work at all for her. She is worse now than at diagnosis. Her doctor is great, he has tried avoiding surgery at all costs, but feels he has no choice. So it will either be total removal of her colon with a pouch, or a bypass of the colon with a pouch. So either way we are facing life as a 16 year old with a pouch. As a mom, you can see where my pain is.  Her doctor is insisting on a 2nd opinion at  Childrens hospital, which I commend him for. My question is, are there really any other choices for her, seems like she has used them all up? Any help would be greatly appreciated, in reading some of the stuff on here, if she does have surgery shhe is out of school for a month or more???

Stressed out Mom in Maine

FPO pattinmaine
Joined Sep 7, 2008

Sun, September 28, 2008 6:12 PM

 Reply posted for pattinmaine.

Hi my names Samantha and im 17 just starting my senior year. I was diganosed with colitas last january and had constant flare ups, ER visits, and loong periods of time in the hopsital. It was my last visit were i spiked up 104 fevers and was so sick i couldnt stand it any longer that they decided that it was time to get my colon removed. I know what its like to be a young teenager with a bag. Im not going to lie and say it doesnt suck because it does but you have to look to the good, no longer and i dying in pain all of the time. Its scary and i have my hard times but let your daughter know that things will get better and that the bag is only temporary, and that there are lots of other girls her age dealing with this. your in my thoughts and i wish you the best of luck

 

 

- sam

FPO samantha5
Joined Sep 28, 2008

Sun, September 14, 2008 6:21 PM

 Reply posted for jd12.

Hi...

You mentioned side effects from losing your ileocecal valve, that got better over time. What kind of side effects did you experience? How much time did it take to get better? My doctor has said losing your ileocecal valve doesn't matter, but articles I've found online say the opposite.

Thanks!

FPO kelly08
Joined Sep 8, 2008

Wed, September 10, 2008 12:00 AM

 Reply posted for pattinmaine.

I have just had surgery, colectorl restructure part of my bowel was taken last Tuesday 2nd of September. I was very scared I am 41 years old with two children, and a very loving husband.

How I dealt with it was to put myself to one side and out of the picture , and focus on the positive it will be better after surgery. Now I am recovering at home was in hospital for six days.

Good luck and all goes well x

FPO jabs
Joined Aug 26, 2008

Mon, September 08, 2008 1:17 PM

 Reply posted for pattinmaine.

i was diagnosed at age 7 - had surgery at 12. both of my parents put off the surgery forever cause they hated the idea of it but in the long run it was worth it. things got so bad there was no other option. ive been in remission ever since surgery (close to 10 years now) - just mild side effects from losing my ileocecal valve but it gets better with time. (i know thats not how it is for everyone, but in my case i wish i'd had it long before i did). i think the affects of some of my medications were worse then recovery of the surgery. 6 weeks after i had surgery i was running around the indoor water parks in wisconsin dells.

i don't know if any of that helps but...

good luck

FPO jd12
Joined Jul 30, 2008

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