Need pouch help please!

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Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 4/8/2010 8:11 PM (GMT -6)   
So I'll probably be over here a lot more now that I just had the first of three surgeries for the J-pouch. Had UC for five years. My surgery was just last week at the Cleveland Clinic. I'm overwhelmed by the whole pouch thing and I need some help from veterans. I need to order some supplies by I'm not 100 percent sure what all I need. I know I want opaque pouches and I like the wide openings for drainage. However, I don't like Hollister's lock-n-roll closures I prefer Coloplast's ones that have the velcro tabs you pull over. Also, I don't know if I should order pouches with filters or not. Do they smell more? So help me I think I can smell the filtered one that I'm wearing and I hate that. And I'm leaning toward the two-piece appliances.
 
Sorry about all the babbling,  but I guess my questions are:
1) Any suggestions on pouches?
2) What about the filters?
3) What all do I need to order for 30 days?
 
Thanks so much for any replies.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Biotin
Vitamin D
Remicade - stopped working after about two years
Humira - started 2/10


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/8/2010 8:15 PM (GMT -6)   
I think you should wait. Your stoma size is going to change in the next week or so and you want to be sure you have an ET nurse help you with picking the best possible appliance for your stoma. A temp ostomy can be tricky so it's best to have some help in the early days.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/8/2010 9:19 PM (GMT -6)   
It is definitely personal preference!

Ileostomies are more liquid and filters don't do well with that...so if your filter is soaking wet, the smell is probably from that:( Are you bulking up your output? You can use gel-tabs in your pouch to help, too. I have a love hate relationship with filters...but won't go a day without them!

A two piece appliance is nice so you can change the pouch when if the filter stops working.

M9 drops will eliminate the smell.

You will have to cut the opening, since, like suebear said, the stoma will shrink for a few weeks. What did the WOC Nurses send you home with? Did they place an order for you and send you home with a 'starter kit"?

Plan on using a minimum of two wafers per week and at least that for pouches, too. Allow for newbie error so ALWAYS make sure you have extra! Edgepark has been good getting things to me immediately...but it's just best to have enough to start with.

Will your ileo be reversed in 30 days? Or, is that what your planning to buy for? Just an FYI~most insurance companies have limits on what you can purchase per month so make sure you know what your insurance company does.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 4/9/2010 10:25 AM (GMT -6)   
Ohio76, I'm having the 3-step so I probably will have to wear the appliance for the next 9 months or so. I got a lot of input from the stoma nurses at the hospital so I kind of know what I want/need. The problem is that at the hospital they send you home with all transparent pouches, because that's what they have there. My Hollister box that arrived this week had one sample of a 2-piece skin-colored one and I'm wearing it right now. It makes me feel so much better that I don't have to see everything and I'm less concerned about my kids seeing that one then the clear one. There's also a mini opaque one in the box and some more clear ones. I'm going to call Hollister this afternoon and see if they can send me some more samples and ask about some different options. I've already had visits from home health care nurses but while they were helpful, I didn't get the impression that they knew a whole lot about the appliance options that are out there. I'm suppose to get a box from Coloplast too, so hopefully that will have some skin-colored samples too. I don't know why, it just makes a huge difference to me. I will check out the M9 drops. Sounds like something I need to invest in. Thanks for the suggestions.
Diagnosed with UC in Feb. 2005
 
Asacol, Colazal, Prednisone, Rectal Meds, Remicade, Humira
 
Now UC Free!
First step of j-pouch - April 1, 2010
Second Step - TBD
Third Step - TBD


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/9/2010 10:51 AM (GMT -6)   
You should be getting at-home services by an ET nurse, not a home health nurse. You might want to request this as the ET nurse specializes in ostomies. It's standard practice so you shouldn't have to argue your case.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/9/2010 11:37 AM (GMT -6)   
I thought you'd have it longer than 30 days...just wanted to make sure:)

Is your home health nurse one from the Clinic's program or just a local organization? I ask because, after using both, their is a HUGE difference in their abilities! The training the CC Home Health nurses get is far better and they do have ones that specialize in WOC care.

The supplies that you are sent home with aren't what most people end up with...thankfully...You are not alone in your dislike of those clear pouches!! The minis are nice but you have to empty all the time:( I've got a selection of Large/Med/Small pouches but usually use the larger ones since they are easier to conceal under cloths:)

Request different samples directly from the manufacturers...they are great at getting them out within a week!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

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