PostOp Cancer Stoma Group

[LizPeace]

Would anyone know of any groups of this sort? My partner has a new IC  stoma from bladder cancer and is having many problems. We can’t find an ostomy nurse.  We live In PaTong, he had surgery at Bumrungrad in Bangkok and goes to Bangkok Hospital Phuket for his oncologist.  We’ve been trying to find resources but have had luck only finding someone willing to order supplies.

[tandor]

Best of luck..i hope you get it sorted...maybe pay for a home visit nurse to be trained to cater for your needs. I'm sure your Oncologist would source such a person for you!

[swm59nj]

I’m surprised the two hospitals you mentioned cannot provide assistance.  Even the doctors you have seen. Since they are both major international hospitals.  

[lopburi3]

As one with Ileal conduit stoma can affirm lack of many having much knowledge.  Mine was done at Bangkok Hospital and there were only two nurses with any experience but that was there full time job - and they did not seem to have any knowledge beyond what that hospital provided bags.  I could only sleep on right side for two years as seal would leak if turned over but were hard to remove.  Finally found Coloplast 5585 on Lazada and that has been a lifesaver for last 3 years as although one piece and change every other day they do not leak and very easy to remove.

 

You may be able to find some support on internet but have no knowledge of any Thai specific.

 

You might want to have mod move this to medical section as Phuket is likely too limiting.  As for supply I use Lazada/Shopee for buying bags and night bags. 

Edited March 31, 2022 by lopburi3

[lelapin]

25 minutes ago, lopburi3 said:

As one with Ileal conduit stoma can affirm lack of many having much knowledge.  Mine was done at Bangkok Hospital and there were only two nurses with any experience but that was there full time job - and they did not seem to have any knowledge beyond what that hospital provided bags.  I could only sleep on right side for two years as seal would leak if turned over but were hard to remove.  Finally found Coloplast 5585 on Lazada and that has been a lifesaver for last 3 years as although one piece and change every other day they do not leak and very easy to remove.

 

You may be able to find some support on internet but have no knowledge of any Thai specific.

 

You might want to have mod move this to medical section as Phuket is likely too limiting.  As for supply I use Lazada/Shopee for buying bags and night bags. 

I buy Convatec 2 piece from this company in Bangkok. Very good service.

 

 

Edited March 31, 2022 by lelapin

[swm59nj]

     To the OP.

       I just messaged a member Sheryl to enter the group.  She appears to have medical knowledge and gives excellent help.  Possibly she could be of assistance to you.

 

Edited March 31, 2022 by swm59nj

[lopburi3]

17 minutes ago, lelapin said:

I buy Convatec 2 piece from this company in Bangkok. Very good service.

 

 

That is the brand I could not use but very popular - tried several of them and none would seal properly if lie on left side and ostomy nurse could not help.  Did get about 4-5 day use from two piece type  Yes maybe my skin but have not had any such leakage issues with Coloplast.

 

Most drug stores can also order for delivery.

Edited March 31, 2022 by lopburi3

[LizPeace]

47 minutes ago, lopburi3 said:

That is the brand I could not use but very popular - tried several of them and none would seal properly if lie on left side and ostomy nurse could not help.  Did get about 4-5 day use from two piece type  Yes maybe my skin but have not had any such leakage issues with Coloplast.

 

Most drug stores can also order for delivery.

Lopburi3, your response is incredibly helpful. Your description is exactly what we are dealing with, these things leaking at various times, every day and night, which as you know becomes hard on the skin. We thought the hard part would be getting thru that god awful surgery but then the equipment - not working - is a huge complication. He was using coventac and is making the order for coloplast right now. 

[Tobin]

1 hour ago, lopburi3 said:

As one with Ileal conduit stoma can affirm lack of many having much knowledge.  Mine was done at Bangkok Hospital and there were only two nurses with any experience but that was there full time job - and they did not seem to have any knowledge beyond what that hospital provided bags.  I could only sleep on right side for two years as seal would leak if turned over but were hard to remove.  Finally found Coloplast 5585 on Lazada and that has been a lifesaver for last 3 years as although one piece and change every other day they do not leak and very easy to remove.

 

You may be able to find some support on internet but have no knowledge of any Thai specific.

 

You might want to have mod move this to medical section as Phuket is likely too limiting.  As for supply I use Lazada/Shopee for buying bags and night bags. 

 

Thank you.   I am Liz's partner.   I appreciate the insight very much.   I've ordered the 5585 just now so hopefully they will solve the problem.   I have the same issue with not being able to sleep on my left side...   And having to change bags daily due to leakage.  It's awful.   So hopefully this will work.  I can't find night bags on Lazada, however.   Any advice?   Thanks again.  

 

[LizPeace]

1 hour ago, swm59nj said:

     To the OP.

       I just messaged a member Sheryl to enter the group.  She appears to have medical knowledge and gives excellent help.  Possibly she could be of assistance to you.

 

Swim59nj, I wanted to post this in the medical section, also to have Sheryl’s input. But when selecting the drop down menu for medical it wouldn’t allow a post. I’ll get the hang of it but for new users it’s complicated searching thru to get to the medical forum.  Any advice is welcome but maybe time will train me.

[metisdead]

3 minutes ago, LizPeace said:

Swim59nj, I wanted to post this in the medical section, also to have Sheryl’s input. But when selecting the drop down menu for medical it wouldn’t allow a post. I’ll get the hang of it but for new users it’s complicated searching thru to get to the medical forum.  Any advice is welcome but maybe time will train me.

 

I have moved the topic to the Health and Medicine forum for you. 

[Sheryl]

Patient self-help/support groups are nto a Thai "thing" and there aren't any such groups here that I know of.  However there are online groups based in Western countries.  See:

https://www.ostomy.org/support-group-websites/

(scroll down to the bottom for virtual group listing)

 

and

 

https://iasupport.org/information-support/forum-terms/

 

The various products people in such groups report using may not be available in Thailand, but you might  be able to order them from abroad e.g. from

 

https://www.amazon.com/s?k=ostomy+supplies&adgrpid=82663341798&gclid=Cj0KCQjw_4-SBhCgARIsAAlegrWXcG1wzeL-lOu2ZK_FCmoMIaxYFYykzZFQeNAe95ZQ75FRmO250TwaAod1EALw_wcB&hvadid=585362807898&hvdev=c&hvlocphy=9047116&hvnetw=g&hvqmt=b&hvrand=6496742045327610280&hvtargid=kwd-17021040&hydadcr=22337_13333082&tag=hydglogoo-20&ref=pd_sl_89qma37tep_b

 

https://www.herbspro.com/search?options[prefix]=last&q=ileostomy

 

There is also this source though I am not sure they will ship internationally  https://finneganmedicalsupply.com/collections/ostomy-supplies

 

There are very, very few enterostomal nurses in Thailand and these are mainly found in Bangkok, I would be surprised if there were any in Phuket but you could try contacting this group (have a Thai speaker message them)   https://www.facebook.com/thaietnurse/

 

Ther are some downloadable guides and info here that may be useful

  https://www.ostomy.org/new-ostomy-patient-guide/

https://iasupport.org/

[lelapin]

Your home page - Inspire

[lopburi3]

1 hour ago, Tobin said:

Thank you.   I am Liz's partner.   I appreciate the insight very much.   I've ordered the 5585 just now so hopefully they will solve the problem.   I have the same issue with not being able to sleep on my left side...   And having to change bags daily due to leakage.  It's awful.   So hopefully this will work.  I can't find night bags on Lazada, however.   Any advice?   Thanks again.  

 

I buy from Shopee and find this brand the best - larger plastic tube - change weekly.  Second link is same seller/item on Lazada

https://shopee.co.th/(Urine-bag)-ถุงปัสสาวะ-Urinary-Drainage-Bag-2000ml.-(ขายยกแพ็ค-10ชิ้น)-i.45399807.2314841677

 

https://www.lazada.co.th/products/urinary-drainage-bag-2000ml-10-i357528953-s701098793.html?spm=a2o4m.searchlist.list.72.5d4545e9S0AbvC&search=1

 

The 5585 should come with adaptors to fit bags if you order pak of 20 - should have mentioned that - sorry - direct connection can be made but not as good as using the adaptors.  Pak sales normally include about 4 of them.  I normally buy from Medical Smile seller as stock seems to be fresh and in good shape.

[lopburi3]

Perhaps too much information - but using the 5585 bags I take off in shower and then remove old adhesive using fingers lightly while running water over area - takes about 1 or 2 minutes to clean skin for new bag.   Many say no need to remove adheasive but find this works well and skin stays in good condition - just do it lightly as water will do most of the work.  A quick press down around stoma for new bag to adhere.  

Edited March 31, 2022 by lopburi3

[lopburi3]

In hope that it may help others will also say Scott multi size kitchen towels work very well for pat drying the area around stoma.  If you lightly dry yourself with normal towel one or two small Scott towels quickly get area very dry for new bag.  Cheap and effective.