My 14 year old son recently had 15' of his colon removed and "hopefully" we can re-attach summer of 09. The rectum area they left is not healing very fast. Although it was hell at the hospital for a month, bleeding uncontrollably, etc., diarrhea, my son has come out of this like a champ. Difficult, both physically and mentally, but he is doing great. None of the med's work for him and we are desperately looking for a cure. Trying the cortisone enemas, so hopefully that does something. I was thinking of trying holistic medicine, while he is detached anyway's. We have come up with a great invention during all this suffering, and I need anyone dealing with a pouch, bag, urine bag, etc. I need samples of all the different sizes of outside the body bags. Welcoming any help, questions, anything you need. We have to support each other. These diseases are tough. Thank You*

Hi,
So sorry to hear of your son's trouble, none of this is easy and complications only make it harder mentally and physically. I live in Long Beach now, but grew up in San Ramon so couldn't help but reply. I'm 28 years old, I had a total colectomy and j-pouch creation in November and just had my takedown a few weeks ago. Do you need sample ostomy bags? If so I can send you a few of the ones I used -- I had a two piece system. Let me know if that's what you are looking for and I'd be happy to send them. My mom still lives there so I visit often. If you guys ever need anyone to talk to you, I'd be more than happy to talk.

Hi Kyo,

Any of the Ostomy companies would gladly send you all different types of samples.If you call Byram Healthcare, a distributor of all these products, they will gladly give you the names and phone numbers. It worked for me. Byram Healthcare phone number is 1 877 902 9762

Holly" Posted April 15, 2008 05:32 PM Hide Post
Hi KYO.
I am sorry your son has gone through this. I did and so did my son at 16.
You can call all the companies that make ostomy products and they will send samples.
convatec, hollister, coloplast,bard, there are a few others.
Call edgepark for a catalog-1-800-321-0591
they will have all the numbers and names.
Also, your local ostomy support group may be able to help.
www.uoaa.org
another support web site is
www.ostomates.org
hope this helps

I had a very similar case to your son. No medications worked for me and I was in the hospital for a little over a month when I had my sub total colectomy. My remaining colon never went into remission and was bleeding up until I had my J-pouch construction. between those surgeries I was on cortifoam enemas, Canasa Suppositories and Prednisone. I was on 12.5 mg pred at the time of my second surgery. Even with all those medications My rectal stump still bled alot. I currently am taking 4 mg pred still. Once your son regains his health they can do the surgery no matter the condition of the rectal stump is and sometimes it just doesn't get better until the remnant colon is gone. I am still on pred and canasa suppositories to control the inflammation in my rectal cuff and to try to resolve chronic pain issues I am having.

For my ostomy I use Coloplast Assura Adhesive Coupling 2 piece system. I have tried some others but this system is my favorite.

I only started getting sick a year ago and wasn't diagnosed until the end of june. I was 20 at the time. I can't imagine dealing with it at 14, You son has to be champ. If you ever need someone to talk to or any questions PM me.

As for holistic medicine I am trying Mona Vie (SP?) which is a acai juice blend and have heard some amazing stories about it but have yet to see any improvement. Supposedly it takes up to 90 days to start working. Some lady my dad knows has MS and quit taking her medications completely and now she can drive again and is doing well with no help of western medicine.