UOAA Discussion Board

Hello, I am a shared living provider and welcomed a client into my home with autism and an ileostomy about a month ago. This client appears to not understand why he has an ostomy and wants nothing to do with "wearing a bag". He has had the ileostomy for about 7 months. I have been told that he is not a candidate for a reversal. He will constantly pull the bag off. We go through about 20 bags a day. We live in a small town and the ER tells me that there is nothing they can do as well as his PCP. I am at a loss of what to do. When he pulls the bag off he will say "I don't like it, I hate it, I don't want it!" I knew this client before he had an ostomy and having to go through this has completely changed him. His team and I have discussed options like wearing some type of suit on him that will make the bag unassailable to him but this is a plan that would have to be approved and could take some time. I need a fix NOW, not a month from now. I feel so bad for him because I know this is a huge change. I want to try my best to support him, but on the other hand I am just one person up against this and it has become very overwhelming. I have been passing him anti anxiety meds which seems to help for a couple hours but these are something he could become dependent on if they are taken for too long. Any ideas, suggestions are words of encouragement are greatly appreciated.

Hi Britton , this is a difficult situation for him , yourself and his carers .My son in law is a carer ,his client wears a black elasticated wrap round his waist and though this would put it out of mind and view temporarily , someone would have to remember to check it for emptying regularly which means raising his awareness of it every time they do .
I don't think a suit , or wide stoma belt or wrap is going to be much use to your client , as the problem is getting him to accept he has it .My only useful suggestion would be to get him to meet up with a fellow ileostomate who could perhaps persuade him to take a brighter view, of his condition , and so he would feel less alienated wit it .If he had company with someone who has one ,perhaps he could learn that it's not bad thing .
I feel very sorry for your client , especially as he can't understand why he has this intrusion on his body .I just hope you can all be patient with him until he comes to terms with his situation .Good luck
Lola.x

Lola, thank you so much for taking the time to reply. I do think finding an ileostomate would be very beneficial for him! We have tried the elastic wrap but it seems to make it worse for him. I definitely think the problem is that he cant come to terms with his new situation. Thank you for your kind words!

This is more a question than advice, but In addition to dealing with acceptance issues, might a schedule and routine, with visual cues, help? It doesn't have to do with the person's intelligence, it's just that routine often helps acceptance (for everyone) and some people with autism find visual information easier to manage than verbal information.
For instance, set up a visual morning/afternoon/evening schedule that includes checking the pouch and emptying the pouch (separate events); include other daily activities as well: breakfast,washing dishes, going to work, hobby, counseling -- whatever the person is to do within a specific time frame, so dealing with the pouch is just part of the day. Engage him in activities that compete with pulling the bag (something that uses his hands). Sometimes having a visual cue and having a definite routine can help a person anticipate what is going to happen and so can be a calming influence.
Also, is it certain that the person is not pulling off the pouch because of some discomfort that he can't articulate? Even a small leak or skin irritation around the stoma can be very distracting and uncomfortable; the adhesive also can potentially irritate skin. I know my anxiety would greatly increase if someone restricted my access to my pouch, even to quiet an itch.
Thank you for being concerned and trying to find answers for your client. Your kindness will surely make a difference in his life.

My thoughts & prayers to you & your client. If you haven't already, please check out the UOAA website for support groups that may be in your area. Also, do you have a compassionate ostomy nurse available who may have more experience in dealing with similar situations? Local hospitals & nursing homes or services may have a listing. Having someone competent who also cares would be of great help to you both. And please, keep checking back with our Board for more suggestions. The main goal of UOAA is in helping each other.

Wound, Ostomy and Continence Nurses Society website: www.wocn.org
Under the "Patient Information" tab, choose "Find a Nurse in Your Area." Enter your zip code.

I just found the above info in an article in the Fall issue of The Phoenix magazine (official publication of the UOAA). When I entered my own zip, I was surprised to find four nurses listed at area hospitals that I do not know. The two at my own health care facility were unlisted, so there might be additional ones in your area also. Anyway it is a good start.

By the way, The Phoenix is a great source of up to date information including many articles by physicians, ostomy nurses,& patients & reviews of ostomy supplies & new products. It's listed on the UOAA website.

Another option for you might be to contact the major manufacturers of ostomy supplies directly. I think they all have websites listing contact numbers. Most have ostomy nurses to talk with you.

I hope this will help you & your client to realize you are not alone.

Hey Britton,

You are definitely in a dilemma. I work in a facility with severely disabled and profoundly intellectually disabled clients. For our clients with ostomies, we typically put a wrap around the ostomy and appliance. However, with your client, you are dealing with what sounds like a more functional set of skills. Unfortunately, you are going to be limited in what you are able to do in order to stop this behavior. You likely need to get a psychology consult to help develop a behavior treatment plan. In the short term, the only idea that really comes to me is to dress him in overalls. He'll still be able to pull off the appliance if unsupervised, but at least with overalls, it'll slow him down enough so that whoever is monitoring him can stop him before he is able to get to the appliance.
Hope that helps, and that you can get him the resources that he needs.

David

HI again Britton , I really feel for you and and your client .I am married to someone who has Aspergers .At one point it looked like he would have to have a colostomy and both myself and his psychiatrist were opposed to it for this very reason - he wouldn't have accepted it and would have ignored it .Dave is right , you need a psychiatrist who is specialized in your clients condition .If he could just accept it and allowed the carers to do the leg work , that would be a huge step forward .He probably feels so different and confused .
best wishes
Lola x

Hi Britton , how is it going ? have you made any progress ?
I should have added to my post that my husband is fine now , his problem turned out to be a cyst so no op was necessary .
If the cost of using so many pouches is a problem for your client , maybe you could approach a manufacturer of pouches , who , under the given special circumstances could supply your client with appliances , or extra at least ?
please let us know how you are both faring ,
Lola.x