March 18, 2014 at 9:37 pm #77489hisprazr wrote:.It sounds like there is a tremendous life change with these drains in place. He has always been an active man and worked a lot outside and in the shop, also with the cows and such. What are the limits the doctors give or that some of you have encountered in just daily living activities.
Sorry it’s taken so long for me to answer. The last month has been a blur, as I had some infections crop up and was in the hospital and had my tubes changed twice.
As far as restrictions, other then not immersing them in water (swimming, bathing), none really. I don’t recommend sleeping on your side because you can bust the stitching (learned that the hard way once). Otherwise, they don’t normally interfere with my daily activities when they are capped off. I plan to ride my bike plenty when cycling season starts. They will probably keep me from paddle boarding, just for the risk of falling in the lake and dunking them. I think I could play tennis or golf okay with them. Bottom line, if he feels like he should or shouldn’t do something because of them, check with his doctor.February 28, 2014 at 4:38 pm #77488darlaParticipant
Sorry to hear things are not going well for you. Glad that your doctors have been totally up front and explained everything to you as I have always felt that knowledge is power. Your great attitude will also help you along the way.
Your understanding and acceptance will help to keep you in that peaceful place. You are in my thoughts and prayers.
Love & Hugs,
DarlaFebruary 28, 2014 at 4:25 pm #77487ladylindenMember
Hi, I went for my 7th ERCP 2/25/14. It was found that I had another serious blood infection. Access to the left metal stent could not be attained, so the following day the doctors placed a perc drain and an outside bag. My pressure has been 85% relieved. My team of doctors have explained everything so thoroughly. I DID talk to the doctor about the placement of the tube and bra line. I arrived home yesterday. I have a life expectancy of 3 months. It has been a fast life!!! So glad I didn’t hold back on living it to the best of my ability. The new “NORMAL” is laying in a flat position, not able to do much for myself but have a caregiver who assists me. I was sent home with an antibiotic infusion that starts today and must be administered every six hours. This is to keep the infection under control. I think accepting the fact I have a terminal illness that I can’t do anything about has helped put me in a peaceful place. I am ready for my departure.February 28, 2014 at 7:26 am #77486hisprazrMember
My husband Mark finished radiation in December and we had glowing results of the tumors very timely death! But, over the past few days Mark has gotten more and more jaundiced. Today we were told that they wan to put drains in because they can’t get the bilirubin under control without it. So, beig decisions. The mass is neucrotic and therefore is dead but not getting much smaller in the process. So, the bile ducts have begun closing up again and this time the meds are not working to stop it. So, they are wanting to do interventional radiology and see if they can get through the blockages to put in a percutaneous drain. It sounds like there is a tremendous life change with these drains in place. He has always been an active man and worked a lot outside and in the shop, also with the cows and such. What are the limits the doctors give or that some of you have encountered in just daily living activities.February 12, 2014 at 8:26 pm #77485shellinaMember
My husband has external drain too. I agree with what has been said by Lisa & Betsy. But, I wanted to add that the sure prep pads are miraculous! I also highly recommend Micropore tape. My husband suffered with his skin breaking down for about 9 months due to the bile and tape. Both can really do a number on your skin. All it took was one caring hospice nurse to see how bad it looked and she made sure he had the sure prep pads. Unfortunately our hospice pharmacy doesn’t have the Micropore tape, so I have to buy it. But, it is well worth it. No skin problems ever since.February 12, 2014 at 7:38 pm #77484betsyMember
Thanks for the complement LisaCraine! I’ll get back to you tmrw re. next week. Just got home from a tube change and need a nap.
betsyFebruary 12, 2014 at 5:14 am #77483lisacraineParticipant
I might mention that Betsy always looks like a million bucks!February 12, 2014 at 4:54 am #77482betsyMember
I’m Betsy and have had drains for 5 years. LisaS post was so well done. I had a tube at the bra line too and bought demi-bras – not much support but very comfortable, pretty too. I am not able to cap my drains.
– If your stitches become sore, heat a wet, clean washrag in the microwave and then hold it against your stitches. It really helps speed up healing process and feels great.
– For pain relief I take percoset or tramadol.
– I use small binder clips to clip my bag to my pants. Most times, I can hide my bag inside of my pants. For showers, I have a cheapo plastic belt I wear that I clip my bag to.
– It takes me a couple of days to feel better after a tube change. Watch for signs of infection: fever over 100, right shoulder pain, nausea, bad chills. last thing you want is another trip to the hospital, yuck! I am taking a prophylactic dose of cipro. have jammies and nice clean sheets on my bed waiting for me when i get home from tube change oh, btw, i spend a fair amount of time in my pjs, so i have quite a few pairs….a girl has to have some fun, right!!
– I use 4×4 cotton squares to cover my stitches and paper tape to secure the squares. I had problems finding tape that didn’t bother me…..didn’t like silk tape. there are also wipes you can get a script for to use before you apply your bandage. Its called “skin-prep” by smith &nephew. many times my skin has gotten raw from tape so now i use this prep before using the tape. miracle product! Hope these tips help.February 11, 2014 at 5:38 am #77481lisacraineParticipant
I will text Betsy and have her log in to give you some insight. She is wonderful!
LisaFebruary 9, 2014 at 11:11 pm #77480
Ooh, sorry they got turned. I imagine that was really uncomfortable. Replacing them isn’t as bad as getting them in the first place. Says the woman who had to go to the ER last night with 102.9 fever and a likely tube infection. Today, on cue, one started leaking. So, I’ll be going for replacement set #4 tomorrow. I keep telling my very cute interventional radiologist we have to stop meeting like this!
LisaFebruary 9, 2014 at 3:20 pm #77479dbomsMember
Thanks for all the great advice. Had them placed last week Thursday, went home the same day at 8pm never got pain relief. finally went back in on Tuesday for another work up and long story short saw that the tube had turned over on itself and was hitting up against my diaphragm. I just knew I had pneumonia because I couldn’t take a deep breath. So back to IR to fix it. came home yesterday. it is still sore the right drain, I hope it better pretty quick, I’d rather birth a baby than go through this again. UHHGGJanuary 27, 2014 at 6:34 am #77478marionsModerator
Pat…at times additional stents can be placed.
MarionJanuary 27, 2014 at 3:26 am #77477
Pat, I don’t know much about the stents or what happens if they get blocked. We’ve talked a bit about stents in my case, but I think my oncologist wants to wait to see if it’s possible that I can get my tubes out completely after my radiation. It’s my understanding that changing the metal stints out is harder – more potential scarring, although they don’t have to be changed as often as the plastic tubes.
Sorry I don’t have more info.January 27, 2014 at 3:12 am #77476ladylindenMember
Dear Lisa, Thank you for the valuable information you provided. I am on my 5th stent/ERCP inserted in October, 2013. The gastroenterologist cleaned the metal stents in January, 2014. He was able to clean one stent 100% but the other he could only clean 60%. I may be headed for drains. Do you know if drains are the usual procedure when stents cannot be cleaned? If I am a candidate for drainage tubes, I will remember your great advice! Thank you. PatJanuary 23, 2014 at 10:04 pm #77475marionsModerator
Lisa… maybe not now and hopefully not later will I need a drain, but I can guarantee you that I won’t forget your advice.
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