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Tried everything now facing surgery


Fri, September 04, 2009 12:00 AM

My son is 10.   He has had Crohn's for five years.   We have tried a lot of meds over the last 5 years.  He  has been on Azathiaprine, Remicade, Methotrexate, Prednisone, and Humira.  He has had several hospitalizations.  He currently has a PICC line and is on TPN.  His large intestine is very bad.  The doctor wants to place a colostomy in hopes that this will give his large intestine time to heal.   Are there any other medications we can try before this surgery?  For those of you who have had this type of surgery; are you glad you did it or do you regret it?  Has anyone had a colostomy reversed?

FPO ws2jm
Joined Sep 3, 2009

Tue, September 22, 2009 5:51 PM

 Reply posted for ws2jm.

Hi again,

Yes, we as a family can certainly relate.   It takes a toll on everyone.   We live in New Jersey and are fortunate to have a wonderful doc who tends to take a conservative approach when able to.

My daughter has been on meds since she was 4.  See, when they did their first colonoscopy they knew there was a lot of work needing to be done so they started meds to "cool down" her system.  At that point they were not able to confirm CD until the following year when they made contact with the granuloma that spiraled my life out of control.  Sadly, she doesn't remember life without meds (ugh).

Currently she is taking Sulfasalazine (3xday), Folic Acid, Calcium tablets, Omega 3, reg. one a day vit, D3 and sticks to the low fiber/low residue diet.  

Has your son had his D level checked?  Only reason why I ask is our doc randomly tested the level and she came back seriously deficient.   We had been having major behavioral diffculties (to say the least)........guess what, I think it was the D3.   The bout of depression and the nightmarish everyday living slowly dissolved.  Amazing how one vit. deff could make such an impact.

Hopefully your son's health will continue to improve.  Maybe he just needed a bit more of the steroid to build him up and give him the boost to get back on the healthy track.

Know that my thoughts and prayers are with all of you.   Hopefully one day soon there will be a cure and we can have a farewell CCFA Community Party.  Until that day, at least we have the Community to keep our sanity.

Be well.

 

FPO lizzies mom
Joined Sep 9, 2009

Tue, September 22, 2009 1:09 PM

 Reply posted for Lizzies Mom.

Thanks for your post is your dau currently on any meds?  Or is it strictly a diet regimine. 

What state do you live in just wondering about your dau's Dr.? 

We met with the surgeon for a consultation and he stated to us that he would not want to perfom surgery right now, due to the fact that my son is doing OK.  Not a lot of stomach pain and overall feels pretty good(however he is on pregnisone so it may be "masking" the symptoms).  The surgeon stated that he would discuss with my sons Gastro-Dr. and let us know. We have not heard back from them as to what they may do now.

Thanks for your support, this is something you and your family can relate to as well.

I wish you and Lizzy all the best too.  Let her know that she is not alone that there are other kids just like her doing the best they can.

 

Thanks

FPO ws2jm
Joined Sep 3, 2009

Thu, September 17, 2009 9:07 AM

 Reply posted for ws2jm.

I have a daughter who was finally diagnosed at age 5 after suffering from infancy and is now 10 too (coincidence).

We have (knocking on wood) been in a remissionary stage after sticking to a low fiber/low residue diet and taking our meds religiously.

Have you gone for a second opinion?  It may be worth your while.   I think I would be inclined to try that before sending my little one in for sugery.  Who knows, the consulting specialist may want to try a different combo of meds or an alternative therapy prior to scheduling him for surgery.  You have nothing to lose.

Wishing you and your son my best.

Lizzies Mom

FPO lizzies mom
Joined Sep 9, 2009

Sun, September 13, 2009 12:00 AM

 Reply posted for ws2jm.

You should consider trying Helminth therapy such as hookworm or whipworm.

FPO z100com
Joined Dec 31, 2008

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