ostomy for a "disabled" girl

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spooglesmom
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Date Joined Oct 2009
Total Posts : 36
   Posted 11/24/2009 3:33 PM (GMT -6)   
Hi, this might be the wrong forum.

I am wondering if anyone out there knows of someone who is developmentally disabled, basically mentally retarded, and had to have an ileostomy? My daughter has severe UC and has been refactory to much medical treatment, although we are still trying everything. The side effects from all the drugs, the frequent states of anemia & hospitiliizations, her inability to unerstand this disease and manage it herself, have lead many on her team to talk frankly about colectomy. We have bought time this far with Remicade, and when she is feeling good, she reallly feels good, but I don't see how this can play out long term.

Our greatest concern is how she would tolerate an ostomy. She is severly autistic and tears everything off that rubs her sensory system the wrong way (a small example: a bandaid, a bigger example, 2 PICC lines in the hospital) We could only hope with the cool new accessories out there and with sheer time she would get used to wearing a bag, but we shudder at visions of her going to a public pool and ripping her osotomy bag off!

This might be a bit specialized of a topic on this forum, but I thought I'd give the shout out. We are so stressed most of the time with the Autism to begin with, and the UC has just added tons to that.

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 11/24/2009 6:46 PM (GMT -6)   
I dont know how she is, but could you put some type of clothing over her bag that she couldnt remove? That way she couldnt tear the bag off.
And if she went with a jpouch, she would only have the bag for a few months.

And maybe if you got her some neat covers for her bag she might like that.
Im sorry i cant be much help.
there is a site, and i think its dragonkids.com or somethign like that, for kids with ostomies.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


privey
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Date Joined Oct 2009
Total Posts : 453
   Posted 11/24/2009 10:12 PM (GMT -6)   
Spooglesmom
I'm not going to be much help either as I'm still getting used to my ileostomy and have a bazillion questions it seems. I've read "summerstorms "post and then saw the post on the list of the "ohpoo bag" you might look at that. They are cute and would cover up the ileo or colo and maybe your daughter wouldn't notice it as much.

Cathy

SocalJohn
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Date Joined Oct 2008
Total Posts : 160
   Posted 11/25/2009 10:33 AM (GMT -6)   
Here is one suggestion. Maybe try to find a colon rectal surgeon who is willing to do the whole J-Pouch in one procedure. It is possible, but most doctors dont like to do it. Considering your situation though, you might be able to find one who would consider doing it.

Otherwise, as the others have said, in a two part procedure the bag would only be on for about 3-4 months.

spooglesmom
Regular Member


Date Joined Oct 2009
Total Posts : 36
   Posted 11/25/2009 1:33 PM (GMT -6)   
Her surgeons don't want to do a pull through they think it would be medically unsafe as she is so autistic and not always one to get to the bathroom when she has to go, she might poo in her sleep and then the acidic watery bm that one has with a j-pouch would be all over her skin. They are recoommending a permanent ileostomy, and I am beginning to see it might be better option. But we don't know what will come of her behaviors of dealing with a bag (pulling it off, smearing the stuff, etc). Yikes, its too stressful

spooglesmom
Regular Member


Date Joined Oct 2009
Total Posts : 36
   Posted 11/25/2009 1:33 PM (GMT -6)   
Her surgeons don't want to do a pull through they think it would be medically unsafe as she is so autistic and not always one to get to the bathroom when she has to go, she might poo in her sleep and then the acidic watery bm that one has with a j-pouch would be all over her skin. They are recoommending a permanent ileostomy, and I am beginning to see it might be better option. But we don't know what will come of her behaviors of dealing with a bag (pulling it off, smearing the stuff, etc). Yikes, its too stressful

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 11/26/2009 11:44 PM (GMT -6)   
well putting on those skin preps can help with that, but they also reduce wear time for a lot of people.
There are ones for senstive skin and all.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


spooglesmom
Regular Member


Date Joined Oct 2009
Total Posts : 36
   Posted 11/27/2009 3:44 PM (GMT -6)   
We are looking at the BCIR procedure as a possible option, no stoma or appliance to mess with, but only a few places in the country that do the surgery.

spooglesmom
Regular Member


Date Joined Oct 2009
Total Posts : 36
   Posted 11/27/2009 3:45 PM (GMT -6)   
By the way, thank you all for your comments!

J's Mom
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Date Joined Oct 2008
Total Posts : 109
   Posted 11/28/2009 8:29 PM (GMT -6)   
I have a 21 year old physically and mentally handicapped son. He has had his ileo for over a year now. He does not have the sensory issues your daughter has, but I was also concerned about how he would adjust to the bag. He occasionally will pull at it when I change his diaper, but as long has he has clothes on he does not pay any attention to it. Having the ileostomy has been a blessing for him. He is back to his normal happy self. Good luck.

spooglesmom
Regular Member


Date Joined Oct 2009
Total Posts : 36
   Posted 11/29/2009 1:11 PM (GMT -6)   
Thank you J's Mom. It helps to know that one with so many challenges can adjust to this. My girl is really hyper and active and has behavioral issues, so the unknown is just too big as to how she'll deal with the ostomy. However, this UC stuff sucks and if it would give her her life back without all the meds and medical traumas, then it could be worth it. Did your son have UC before his ileo?

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 11/29/2009 8:34 PM (GMT -6)   
Yes he was diagnosed with UC Dec of 2007. Every time we would try to taper the steriods he would bleed again. Finally in Sept of 2008 he had another colonoscopy. The GI said in his 10 years he had never seen a colon as diseased as his and did not even complete the scope. He was scheduled for surgery the next week. He has a high pain tolerance and we did not realize how horrible he must have been feeling until after his surgery. Within a month he was acting better than he had in over a year. He wears diapers anyway so having an ostomy is way better than all the bloody diarrhea stools. Currently my only concern is that he did not have a proctectomy and the last month he has had some bloody rectal discharge. We also have trouble with his bags being off almost every morning. He is very gassy and of course unable to burp his own bag. I did get up every couple of hours in the night, but being 50 and working full time it was getting the best of me. We have just learned to deal with it and fortunately we have been able to keep his skin healthy.

Sorry for being so long winded, but I am passonate when it comes to my son. I do believe that if your daughter can adjust to wearing the bag she will feel so much better. Maybe it will help with some of her behavior issues as the pain may be causing it to be worse. J normally is a very happy child, but he had become irritable prior to his surgery. The change in J has been amazing !!

Good Luck. I wish you and your daughter the best.

spooglesmom
Regular Member


Date Joined Oct 2009
Total Posts : 36
   Posted 11/30/2009 12:15 PM (GMT -6)   
I sense your passion for your son, it is a blessing to be sure, for him and his parents. Is he ambulatory? My girl's most recent colonoscopy (this October) was also awful, we meet with surgery this Wednesday. I think it could a mass improvement to her health and life to have the colectomy. We deal with horrible messes due to her regression of toilet training since the onset of the UC. It seems like changing a bag would be easier, at least you know where it's going to be and its (somewhat if leakage doesn't occur) contained. we just think she'll develop problems over having to keep it on always and sensory/skin sensation issues. Why did your son have a sub-colectomy? I'm not sure what the difference is, don't they take the whole colon when UC is indicated? I'm not totally up to all the latest info, I guess I will be soon enough.

Thanks so much for your responses, this healing well forum has been a huge comfort and resource!

Pam

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 11/30/2009 12:18 PM (GMT -6)   
what about a K-Pouch? I think they are an alternative to the BCIR procedure.

J's Mom
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Date Joined Oct 2008
Total Posts : 109
   Posted 11/30/2009 8:39 PM (GMT -6)   
He had a total colectomy. They removed his entire colon except for a few inches that is attached to his rectum. This part of the colon could not be removed intra-abdominally. In order to removed that portion they will need to go through his rectum and removed it (proctectomy). I really don't know why that was not done especially with the severity of his UC. Hindsight is 20/20. This might be something to discuss with your surgeon.

Yes changing a bag is MUCH easier. Also, J's poor bottom would get so sore from all the bloody stools no matter how quick you cleaned him up. I am sure you are experiencing the same thing.

He can not ambulate independently. He needs a walker or holding one hand. He does however, crawl and is very active. He is all over the house and can get up and down off of furniture on his own. Fortunantly, he is very small for 21. He is under 5ft and only weighs 85lbs.

How old is your daughter?

If you would like I will give you my personal email. I don't frequent the forum too often.

spooglesmom
Regular Member


Date Joined Oct 2009
Total Posts : 36
   Posted 11/30/2009 10:34 PM (GMT -6)   
Thank you Js mom. my email is raymond.pam@gmail.com, if you want to continue the conversation off the forum. All your information is super helpful blush

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 12/1/2009 6:37 AM (GMT -6)   
I will shoot you an email.

dilatante
Regular Member


Date Joined Jan 2009
Total Posts : 125
   Posted 12/2/2009 1:40 PM (GMT -6)   
What about trying some ostomy appliances, and seeing how she tolerates them, without the actual ostomy. this may not even be feasible, but it's a thought. You would apply them, as you normally would, and see if she bothers them a lot.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/2/2009 1:57 PM (GMT -6)   
that is a good idea! Check out hollister or coloplasts sites and ask for samples! Just tell them your daughter is probably going to have an ostomy and you want to see the bags before you choose a company to go with.
They will probably send you at least one. And if they wont. Send me an email and i will send you one, i am fixing to rotate out the ones i keep in my car anyway.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/2/2009 1:57 PM (GMT -6)   
that is a good idea! Check out hollister or coloplasts sites and ask for samples! Just tell them your daughter is probably going to have an ostomy and you want to see the bags before you choose a company to go with.
They will probably send you at least one. And if they wont. Send me an email and i will send you one, i am fixing to rotate out the ones i keep in my car anyway.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

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