Thanks, for the warm welcome. This is my first time posting on the discussion board. I was just informed by my physicain today that she would like to place a PCT to drain the bile. I have undergone three ERCPs, all unsucessful. My alk phos level is over 1000 and my bilirubin is over 3. In the past, she tried to prevent an external drain. I would like to know has anyone undergone the procedure? If so, Is it difficult living with the drain? Thanks Hope
great question hope!
I was accepted into a clinical trial last year. As part of the trial, I was to undergo five weeks of radiation and chemo, twice a day, five days a week. To keep the bile flowing during treatment, I was fitted with a percutaneous tube. At first, it was okay while bile drained to an external bag but when the drain was capped off and the bag removed, this lead to infection and doctors decided that an infected tube presented more risk to my life than going through the radiation without one. As it happened, I got through the radiation just fine. This is just my experience; there are very many others who have had PCTs placed without any problem at all. In fact, I have to believe that most people do just fine since it's big business down there in the PCT Department of the hospital. If it wasn't a successful procedure, then they wouldn't do it. I think I was just unfortunate. My sense is that if your PCT drain is capped off, you won't even notice it's there. If it's external, you'll have a fairly inconspicuous bump under your clothes. The bag is strapped to your thigh to keep it in place. Emptying the bag is easy and the only other problem is the bag has to be protected during showering.
Great feedback Joan!
I had several perc procedures and three perc tubes done in 1992 at Mayo Rochester and Nebraska. Mine were needed for the same reason, unsuccessful ERCPs. They later determined I have pancreatic divism (two pancreatic ducts), if your doc's haven't checked for that ask about MRCP.
From what I understand they prefer to avoid external appliances when possible because of the risk of infection and in particular a higher rate of both small and large duct bacterial cholangitis (BC) caused by the tube. Some research I've read and personal experience indicates that having an external tube increases your life-long risk of bacterial cholangitis. Once you introduce surface bacteria it will permanently change your bacterial biome. However, higher risk of BC is no reason to have your alk phos over 1000!
The external drain is no biggie. I had one or two for almost a year. You irrigate it once a day, keep it bandaged and clean to prevent infection and watch it for excessive redness or bile leakage. I presume that your doc wants to drain and eventually stent one or more large duct strictures. Once the stents are in place and scarred in nicely, they will remove the drain. A bile drain is much less bothersome than a colostomy bag - and a far better smell too.
There is a 2nd risk that docs do not always think about. In my case when the 1st tube was removed the tube channel did not close up allowing bile into my abdomen. Which is quite painful. But also uncommon.
I had a T-tube for the majority of a two-year period - with much of the time capped without a bag. At 11-years post transplant (PSC) I started spiking fevers and LFT's a few times per year. In my case the common bile duct stricture ended-up being scar tissue where the new liver was attached and not the return of PSC - whew! Through the tube they tried various means to widen the stricture, however I ended-up having surgery to snip-out the bad segment. 2-years after surgery now and I'm doing fine - but the thought of PSC returning never completely leaves my mind. The procedure wasn't that bad - but it's invasive just the same. They will numb your skin/muscle and if you're lucky they will give you some IV sedative (I think I slept through my insertions, etc.). Removal of the tube is a piece of cake - no local numbing or sedative needed and you don't feel much as they withdrawl it. Anyway, to your question of living with the tube - it's not that bad - especially if the tube is capped and bile is drained internally. Even with a bag, you just want to empty it a few times a day. I remember one-time I was laying kitchen tile (up-an-down from my knees many times) and somehow caught the tube/bag when standing-up. I jerked the tub out of my side a few inches ripping the suture that is wrapped around the tube and stitched to my skin. Boy did I freak at first! I just pushed the tube back-in to the point it was before and made sure it stayed there until my next tube change. They will want to periodically replace the tube - which isn't quite as bad as the initial insertion as they use the existing tube to guide the replacement. Even though it has been over two-years since, I am still a little sore laying on my right side - and the area where the tube was is still indented and scared.
My friend had a few drains in the hospital last year. She just had an external one placed today after being drain free for more than 7 months without any drains. The plan is for her to come home tomorrow with one. I would be happy to connect the two of you when she is home. Feel free to contact me. Thank you!
awesome Melody. very considerate of you to make the connection.
I have had a drain in me for about 4 years now. I wasn't awake for the procedure but after it was put in my side was sore for about a week. It is easy to get used to, you just can't sleep on your side and be wary of people hugging you tightly etc. for the first few weeks. It's not difficult to live with the drain if it capped off like mine was. If you do have a collection bag, it can be a bit annoying but you will get used to it. If it works for you, it isn't so bad.
In my case, after about 2 years by body couldn't tolerate it any longer and my bile ducts were so narrow that the tube would get blocked very very frequently (about 3 times a mont) and changing it was becoming annoying. I hope this does not happen to you because it has honestly been hell. I recently have undergone a bile reconstruction surgery in March to get rid of the drain. I have to wait to see if it was successful. I wish you luck with your drain and I hope yours lasts longer than mine does.