March 26, 2009 at 10:10 pm #18830lainyParticipant
Hi Quanyinprayer, and yes it is so very hard to watch our loved ones go through all the bad things that go along with CC. You sound like a wonderful daughter and I hope you can keep your good attitude up and don’t give up as a lot of hope is needed. It sounds like your moms tube and bag is much like my husband had. They are uncomfortable and when I used to change the bag for him the odor was horrendous. The leakage is as vile as the disease! I am glad though that your mom is finding a little more comfort as that is the important thing. Please keep us posted and again you are just great!March 26, 2009 at 10:02 pm #18829tessMember
Hello Quanyinprayer, Dad started out with a size 8 tubing, went to a 10, and could have potentially gone to a 12. I’ve also heard of others having a 14. Dad did have to have his flushed 2X a day. Occasionally the site would leak a bit with this flushing. Other, random times, the site would also leak. The docs indicated that they were not sure why this happens, but it does, and that they weren’t concerned. They further said that two instances that should cause concern are if the draining doesn’t stop leaking out or if the color gets funky. He was also leaking bile from the pic line in his arm, the bandage window would be very green after just a couple days, at times. They had never seen this before, and even called in the mfg. of the window-patch, as they thought there was some strange reaction going on. But they did test it and it was not infected, it did not have an odor, there was no discomfort or redness…. simply increasing amounts of bile leak. It is good that your Mom is having it tested, just to be sure.
The challenges are so difficult to manage & understand, they are hard at so many levels & I’m sorry that your family & your Mom are going through this.
You’re in my thoughts.
TessMarch 26, 2009 at 9:32 pm #18828quanyinprayerMember
Thanks to all great people for sharing yours experiences. Mom has the drainage on her right side instead. She had it changed last Friday and it was the first time she had it changed. The new one seemed not to drain bile as much as before it was changed. She had the old one for about almost 2 months, never been flushed since it was put in until change and it had been working fine and actually did not get any infection. The information on this broad telling me that itMarch 23, 2009 at 7:01 pm #18827tessMember
Sorry to hear about so many people having this problem….. The drain was a constant source of pain for my father. We were never certain if it was the cc, the drain, gas, etc., & docs could never confirm. He too had it changed out a couple of times, going to a larger drain. The flushing was also painful for him, fortunately he had Mom to help. There were conflicting opinions on how forceful to be with the flush, but Dad could only stand it rather gentle because of the pressure. He too could rarely get comfortable, in that lower ab region, regardless of his position. We took all tubing/flushing questions back to the nurses that put in the tubing, as opposed to the Onc. I know that Dad ate very little, and was miserable without a good BM or if the gas was aggitating his insides.
-TessMarch 23, 2009 at 2:35 pm #18826
Rose May and Quanyinprayer,
I can only offer sympathy. I swear on the Bible that the worst pain I ever had was from the external drain. I am still tender at the entry site a year after it was removed. Rose May, just think of it as just one more step to get to surgery. I will be thinking of you.
KrisMarch 23, 2009 at 1:08 pm #18825rose-mayMember
Funny this thread got resurrected because I’m dealing with this very issue right now. I’m on my second external stent and the pain at the site where the tube exits my abdomen has been very problematic. I’m also experiencing back pain that is getting more and more intense.
I can’t stand up straight becuase it pulls on the tube so I walk around a little hunched over, bending over hurts, laughing or crying hurts, taking too deep a breath hurts. The whole thing is very unpleasant.
My tube exits in the center of my belly, and I do experience pain from time to time on my right side which I assume is the tumor pressing against nerves.
Eating intensifies the pain, it’s like having food in my belly pushes against the drainage tube and really hurts, I can only eat small portions, some days it’s hard to even drink water becuase of the pressure pain.
Flushing the drain with the saline water is also difficult because it creates more painful pressure and I dread it.
Apparently there’s not much to be done about it. The doctors seem to be happy just to hear that it is draining and seem reluctant to do anything unless it gets blocked up and stops draining. Meanwhile they just recommend pain pills to deal with it.
I am supposed to be getting myself strong for surgery this week, but this drainage tube is making that very difficult, and I am shedding more weight (6 more pounds this week!) and feeling very dehydrated. I am hoping I can at least get some IV fluids to relieve the dehydration symptoms.
Very frustrating, feel like I just have to hang on as best as I can while waiting for the verdict about whether the surgery is a go or not.March 23, 2009 at 7:09 am #18824quanyinprayerMember
My mom had pain from her external drainage and also on other side of her abdominal.
At first the doctor suspected it could be caused by the infection of the catheter and they just replaced it anyway and also because itJanuary 24, 2008 at 7:37 am #18823
I am so happy your brother’s drain is finally behaving! C ompared to having severe sciatica which kept in bed a month a couple of years ago or having half my liver removed and my insides “reorganised”, I swear that the leaky drain was by far more painful. I am sure everyone is breathing a sigh of relief. Please be careful though. Everytime i think my drain is better, I get a little over-excited about life and end up doing too much which then causes the drain to shift and leak again! Your doctor seems quite fair in his statements and I do hope that the surgery works out for your brother.
KrisJanuary 24, 2008 at 3:23 am #18822
turns out the drain was plugged and leaked all over and then he felt better! he’s in the hospital now, had a bigger tube put in and they’re just keeping him to see if everything is ok. He is looking so much better and stronger yesterday and not in much pain now, so I’m happy! We had a talk with the doctor and he said he can’t promise anything, but wouldn’t even be considering putting him through the surgery if he didn’t think there was a chance to get it all.
I’m so very thankful to all of you and this board…I’ve been able to tell my brother some of your stories and responses I’ve gotten and he can’t wait to get online himself, so you’ll all be meeting him soon! Being able to hear that these drains can be problematic, but still work, helped alot.
candyJanuary 20, 2008 at 8:25 am #18821
it is good your brother is out. sometimes doing normal things not only makes the mind feel better, but also the body. I hope he feels better soon.
KrisJanuary 20, 2008 at 3:16 am #18820
Kris, so sorry you’re having probs with the drain. It’s hard (and probably not possible for he or I) to determine if the pain he’s having is from the drain, or from the disease. I plan to call the doctor Monday, anyway, because we need to get moving one way or another. Doctor said he’d go forward with surgery (or at least the lap) so we need to talk to him and set the preliminaries in motion. Meanwhile I’m going to try and talk to Ireland Cancer Center and see what they say. Good news is my mom and dad are home and it was good to see them. They’re going to take my brother to his church tomorrow (first time he’s been out of house since the drain put in). I was going to and didn’t mind, but it’s nice for all of us that they are.
Good luck, hope you don’t have to go in this weekend!January 18, 2008 at 10:06 am #18819
I have an external drain as well and I have had a dickens of a time feeling well since it was installed.
Pain after it is in place is sometimes normal (so my doctor said). Apparently, it can leak and the bile drips where it shouldnt. After a couple of days, your body can close around the leaky spot and you start to feel better. That was the case with me.I was in the hospital over a week with the pain. I had xrays, ct scans, everything you could think of to find out what was wrong but nothing appeared so the doctor informed me I was just one of those people. So perhaps your brother is like me? I had to have morphine, pain tablets and I still did not move at all because of the pain.
I have been in the hospital now 3 times in a month because of my drain and it feels like I might be heading back there again this weekend. External drains suck.
I am sure you did the right thing in telling your parents. I was completely against my parents coming to me when I was diagnosed, but I was sure glad after they arrived.
Good for you about getting second opinions-sometimes you just need to keep knocking.
What keeps me positive…1)my husband. We talked long ago about how we wanted to spend the rest of our lives together and when we were old, we would have matching walkers. So now when I am depressed, he just says “matching walkers” and then I know that I have made a plan to grow old with him 2)keeping busy. I have Swedish class everyday. Even when I was in the hospital, I got a 2 hour “pass” a day and went to half of my swedish class. Despite that I have been in pain and have a drain coming out of me, going to class is “normal” and it makes me feel better 3) I pray 4)talking with my friends and family…I love it when we are just shooting the breeze and the word “cancer” doesnt enter the conversation. 5) I saw a psychologist and I would strongly advice anyone who is dealing with this to see one
KrisJanuary 18, 2008 at 2:51 am #18818
Thanks everyone. I was all ready to get him to a hospital today and he said he was doing better and didn’t want to go. His friend stopped by and he got up, washed up, changed his clothes and finally capped the drain. Said he felt better after that. We think he was really dehydrated as all fluid going straight out to the bag. Said his urine was better color too. So I didn’t push it although this evening he sounds so down. I hate to tell him but the surgeon told me today that he really thinks we got this late and there isn’t much we can do. He said the oncologists probably won’t even take him on because there isn’t any physical “proof” to confirm the diagnosis, but he’s very sure this is it because it can’t be anything else. This surgeon is the Cleveland Clinic’s liver transplant specialist. He’s offered to try surgery but really without hope. Just thinks that doing the laparoscope, which they would do before the surgery, will give us the final diagnosis and then we will have easier time accepting that we tried. I have to tell my brother, too, tomorrow that my parents will be here soon. I had to tell them to come home because I need help and they need to be here with him. (can you believe I had to do that!) anyway, he doesn’t want them because of Mom’s drama and negativity, so he might not be happy I called them. I’m going to make some calls tomorrow to the big cancer center here and see if anyone will talk to me. I so appreciate this site because it’s useful to have a place to go to. Can anyone tell me what has helped keep your attitude positive and fighting in the face of this awful disease? I’d love to suggest that he and his kids (and me if he wants) take a mini trip somewhere to build some memories, but am afraid we don’t have enough time for even that.January 17, 2008 at 9:29 pm #18817jeffgMember
Candy …. You cant’ make him better. The doctors will have to do that. But you can surely find out the full story and advocate fully on his behalf. Is there anyone availble close by that can maybe stay with him or possible arrange for nursing care at home. He really needs to be watch closely until they decide on what treatment is going to be done. Being down and out with this type of cancer and the complications of stents and drain tubes can be a nightmare if things don’t work as ment to. He should know not to heasitate to call the ambulance either if his temp spikes or there is uncontrolable pain. Your right cindy this is an ugly situation and he will not be able to do it alone that is for sure. I am so sorry this is all happening. I commend you for getting him to the hospital. Living so far away makes it difficult for you with out a doubt. Bless your heart Cindy for doing what you can, although you can’t cure him you can advocate and hopefully he’ll get on the right track with the doctors. Don’t hesitate to post any questions you may have as many on this site will give advise. Take care of yourself as well.
God Bless and Best Wishes!
Jeff G.January 17, 2008 at 3:08 am #18816
thanks, I’m going to take him in tomorrow, he’s running a low grade fever today, too. He’s dehydrated and just not doing as well as he should. He’s so weak I’m really worried. The doctor was agreeing do a lap with the possibility of recision, but I don’t think he’ll be a candidate because he’s going downhill so fast. I don’t live with him (1 hr away) and his ex wife and I are making sure either she or I see him every day but I think he needs more care. He’s not making himself get up and around enough because he hurts so bad. Oh, I hate this cancer, he’s too young. I think it really set in yesterday how real and ugly his situation is and it was so hard to see. I don’t know how to make him better.
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