July 7, 2012 at 7:45 pm #62368
Thanks Eli, for the last two months I’ve been ordering stuff from amazon. Thank God her leakage is under control now, it was insane changing her dressing every two hours, poor thing her skin is going to take time to heal. Me and my family used to live in Aurora, ON two years ago… Beautiful county with beautiful helpful people.July 6, 2012 at 12:30 am #62367EliParticipant
Try amazon.com for medical supplies. I just did a search for “paper medical tape” in the Health & Personal Care department. Got back over 500 items.
Some of those prices look pretty good to me. Especially on the bulk packages.
EliJuly 5, 2012 at 10:09 pm #62366
Hi Mickey, sorry but this was 5 years ago and I don’t remember the name. I did just research it and can’t find anything appropriate so I would ask either the ONC or any Nurse. It was a Nurse who told us how to dress the ‘wound’ and the gel was a miracle as all the irritation left as well. If any bile is leaking it can really burn the skin.
I am sorry to hear about the Scan but you know you are with one of the best with Dr. Javle. Don’t laugh, but I would try Walmart for supplies. Teddy had trouble with the tape as well. I think there is a tape that is non-allergenic. Also check the area for Medical Supply stores to see if they are any less, or check on-line.
P.S. I bet your Pharmacist would know of the Gel.
Sending you tons of hope and best wishes.July 5, 2012 at 7:55 pm #62365
Lainy, what’s the name of the gel? Mom got her tubes up sized again two days ago, praise the Lord the leakage is minimal, we got some bad news the latest ct shows that her cancer might have grown or it may be swelling from radiation. Dr. Javle is not sure. They want to check her bilirurbin # again in two weeks. I’m praying that it goes down and they an start some sort of treatment.
Another frustrating issue is the supplies, gauze and tape is way too expensive, some of the nurses were kind enough to give us paper tape, she’s allergic to all other kinds. My parents don’t work and my brother is helping out with the insurance payments. Any advice as to where we an get supplies at cost price?July 5, 2012 at 5:53 pm #62364
Hi Mickey. I forgot to tell you there is a gel that can be put around the site where the drain is and it helps with the leakage. It also keeps the site from getting too irritated. For pain, sometimes the tube needs an adjustment and I would ask the ONC about it and tell him it really has become very uncomfortable for her.July 5, 2012 at 5:47 pm #62363mickeydtxMember
Thank you for all of your answers. At least I know it is natural to feel this way with these bags. She gets a lot of pain from the right one so she has to take the pain pills which she didnt have to do before. Also lots of leakage, so she’s learning how to clean herself up and of course the draining and flushing.
She too is trying to wrap around her legs and just wear long stuff. I just have shop online I guess and try to find more suitable clothing that isn’t “frumpy”.June 27, 2012 at 12:58 pm #62362betsyMember
I can appreciate your Mom’s concerns about clothing and being restricted to a different kind of wardrobe. I’ve been dealing with drainage bags for about 3 years now. I have a great collection of skirts with elastic waistbands for the summer. I use a small binder clip and clip the bag inside the skirt. I look for skirts everywhere I go and have found some really cute ones. I also treat myself to pedicures and new cute sandals. I’ve had 3 bags sometimes and I found anything with an elastic waistband will hide the bags. In the winter, I wear black yoga pants, longer sweaters. I also spend money on make up and coloring my hair, These are things I used to do without but now it really helps me feel pretty. I do miss my jeans and shorts but I’ve gotten used to it.
Also, I ask my doctor to shorten the tubes so I don’t have to deal with those long tubes. Ask your doctor about that. I can do it myself now. Its not hard at all just have to be sure to keep everything clean.
BetsyJune 26, 2012 at 1:32 am #62361marionsModerator
Drainage is such an important issue on this site; I thought to use the search function for previous postings also:
Today’s discussion is included.
MarionJune 26, 2012 at 1:05 am #62360
Let me tell you first hand it’s a struggle, nuisance, pest to deal with the bags. My mom has two and the right one causes her too much grief since it goes in through her rib and probably pitches a nerve causing her to pop a hydrocodone every 4 hours. We are in the midst of seeing f the internal radiologist can go to the right side via the left and are waiting for that appt.
As for clothing she rarely goes out, only for her appts. When she is home she has them tucked in her pajamas, and when she goes out she uses a belt to tie it around her hips and wears long tunic tops.
Her internal stents were taken out since they were useless end of April. Make sure they get changed on time, they usually say every three months. Mom has had them since Feb, changed about 6 to 7 times due to infection/ leakage……tubes need to be flushed and changed daily. I am changing her right dressings every two hours since it’s leaking to the skin.
I’m not trying to scare you, but keep an eye on her. Mom has had a hard time with them, I’ve moved back home to help her, she’s only 60 but this disease has aged her so much. We have had them change the tubes, upsize them but the right side won’t stop leaking; mind you they are open to a bag and not capped.
Feel free to ask me any questions.
Hugs!!!June 26, 2012 at 12:44 am #62359marionsModerator
mickey….our Betsy has been dealing with the issue of hiding external drain bags for quite some time now. Hopefully she will read this posting and offer her advice also. Any other thoughts out there?
MarionJune 25, 2012 at 9:11 pm #62358
Sorry but it was my husband who had to wear the bags. He used to pin them to his underwear. Also they make a band that can tie them to your thigh. If Mom is wearing a long shirt or blouse on the inside of a skirt or pants a safety pin works great. BTW he did golf amd just wore longer shorts.June 25, 2012 at 6:14 pm #7017mickeydtxMember
I haven’t posted Ina while. My mom went in to have surgery but they didn’t do it–stage IV cc, gallbladder, lymph nodes. But she didn’t give up and wants to move forward with chemo. Went into the hospital to change out stent last week but it wasn’t draining enough. So they put in two bags. It is working well but she is devastated. My mom is known for being a pretty snazzy dresser so vanity has set in. Of course, I would think “flowy” things would work. But does anyone know if there is clothing specially made with “pockets” to hold the bags? That would make it easier for her.
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