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Posted by naz100601, on Tue Nov 13, 2018 3:40 am

Hi all! I am a mother of a 1 year old boy that had undergone ileostomy when he was a day short of 3 months old. We are running out of ostomy supplies. If you do have supplies that you wont be using it will be of tremendous help to me and my family. Thank you!

Reply by Puppyluv56, on Tue Nov 13, 2018 4:31 pm

Hey Naz,

i am assuming that you would need youth sizes for your little one right, the adult size Ostomy pouches would be way to big. There are some folks that have children with Ostomy so hopefully they will respond. There are some charity organizations that will send you supplies all over the world. You may want to contact them. Not sure of the whole name of the organization but if you need me to, I can look it up for you! 

Puppyluv

Reply by naz100601, on Tue Nov 13, 2018 7:38 pm

Currently we are using hollister 54001 and 85911 they were given to me by a foundation in canada. I have contacted FOW USA and they refered me to a foundation here in the Philippines but whrn I reached out to them I was told that they no longer havr supplies to give Sad Even if it is big sizes as long as it is cut to fit we can still use it. Sad

Reply by Puppyluv56, on Tue Nov 13, 2018 8:32 pm

You can also try 

Friend Ostomates

4018 Bishop Lane

Louisville, Kentucky 40218

phone number 502-909-6669

WWW. FOWUSA.org

Reply by Puppyluv56, on Tue Nov 13, 2018 8:34 pm

Is this the same place you contacted? Maybe call them to tell them there are no supplies to get from your home country. 

Reply by naz100601, on Tue Nov 13, 2018 10:29 pm

That is the foundation I have contacted and referred me to colostomy friends philippines. Unfortunately, they run out of supplies to give.

Reply by Bill, on Sat Nov 17, 2018 4:47 pm

Hello Naz.
I am packaging up some supplies for you. Unfortunately, I don't have many spares but you can definitely have what I've got.
However, it sounds to me as though this problem is a medium to long-term one and needs a more appropriate solution than simply asking for what might be temporary supplies. I have some DIY ideas as to how to make appliances last a lot longer and would be willing to apply myself to adapting some of those to the problems of a one-year old. If you are interested, I would need to know a couple of things;
1) Could I share your story and possibly your pictures with local mothers who might potentially let me loan their infants as 'models' for my ideas so that I can test the prototypes before sending them to you? If you do not want me to do this, don't worry as I can make stuff up without a model.
2) Could you tell me the measurement of your child's waist?
3) One of the photos makes it look as if your child has two stomas side by side, the other one makes it look as if there is just one stoma (under the gauze/tissue). Could you clarify this situation and if possible take another photo with a measuring tape on the area so that I can get more accurate measurements.
4) The stuff I make is usually quite primitive in design compared with appliances developed by commercial manufacturers. However, it sounds as if you are already improvising better than most might do in a very difficult situation, so I'm assuming that you will percieve the potential of my ideas.
5) I believe that much of what we ostomates need, should be taylor-made to suit each individual and the manufacturers are unlkely to undertake such a task because it is not finiancially viable. Any appliances I make will not necessarily fit first time and even if they do, children grow so rapidly at that age, it is likely that Zach will need something made to fit again in the future. What we can do in this situation is work together to try to develop the best thing we can to help you to get the most out of any supplies donated and I might even be able to invent something that could use things like everyday plastic bags - which is something we on this site have contemplated before in the potential apocolypse scenario.

6) One final thing to contemplate is that if we can develop something that works for Zach (and you), it might also be a prototype which others can copy and therefore potentially benefit other infants in similar circumstances.

Best wishes

Bill 

Reply by Puppyluv56, on Sat Nov 17, 2018 7:15 pm

What great ideas Bill. Hope it can work out to benefit baby Zach and possibly others! 

Reply by naz100601, on Sat Nov 17, 2018 8:02 pm

Hi Bill, Yes you may share our stories and pictures. He has 2 stoma but the other one is the end of his large intestine according to our pedia surg it is in preparation for his reversal if the time comes that he is ready and able. We have tried using a specific bag that lasts 7 to 8 days it was given by a stoma nurse in the UK  😊

Reply by Bill, on Sun Nov 18, 2018 5:30 am

Hello Naz. Do you have a contact number for the stoma nurse who provided you with the specific bag? as I could liaise with her/him  to ascertain more precisely what is available in that regard. Obviously, if there are people already researching this problem, it would make sense to link up with them before starting out on this quest on my own.

Best wishes

Bill

Reply by naz100601, on Sun Nov 18, 2018 6:06 am

Hi Bill, I do not have her contact details and I am actually unsure if she is a stoma nurse in the UK or US. I just happen to be a member of a facebook group that she handles here in the Philippines. She is a Filipina Nurse working abroad. 😊

Reply by Bill, on Sun Nov 18, 2018 8:28 am

Hello Naz. Not to worry about the stoma nurse, I will make an appointment with the ones I use here and discuss the matter with them. I have found them very helpful in the past. They have been particularly interested in  all the gadgets I've made over the years and have contributed anything and everythiing I have asked of them so far.

I would still like to have the measurements of Zach's waist and if possible to photo his stomas with a tape measure next to them so that I can get some measurements. Also, could I ask if there is output from both stomas as this will affect any device or devices which will need to cater for that.

Best wishes

Bill 

Reply by naz100601, on Wed Nov 21, 2018 6:13 am

Hi Bill, sorry we've been busy this past few days with therapy and neuro follow up check up. will give you his waistline size as soon i am able to get it. He needs to be asleep for me to get it. LOL

Reply by Bill, on Wed Nov 21, 2018 6:53 am

Hello Naz. You don't need to apologise for getting on with the important things in life. I have posted you some supplies, which, according to the post-office,  should be with you in a few days.  I am beginning to gather information together about what might be available for infants - which doesn't seem to be very much! This gives an even greater incentive to see what can be developed for them.   I would urge anyone who has any ideas on this subject to let us know so that we can explore everything, no matter how unlikely the ideas might seem.

Best wishes

Bill 

Reply by Vikingthor, on Sun Nov 25, 2018 4:46 pm

Hi,just three weeks ago, I donated 3 boxes of ostomy pouches to the NHS( National Health Service) here in the UK.They collect Ostomy products and send them to Third World Countries, such as Africa and The Philippines.try contacting the UKs NHS,maybe they can help you. Good Luck. Patrick.

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