ERCP recovery
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Erin…my heart goes out to you. This has been a difficult situation for all involved. You did everything possible to bring about changes, but there comes a time when comfort and quality of life supersedes that of further interventions. Given the circumstances, it is likely for clinical intervention to not be of any further benefit. This may very well include placement of a stent. But, most of all, your mother in-law has made the decision to not undergo any further treatments and your support of this decision is vital to her well being at this time. There is some relief in knowing that her physical needs will be met by Hospice and that this precious time allows for sharing of love and caring can take precedence over everything else.
Please continue to lean on us. We are here to help you get through this.
Hugs and love,
MarionErin, I am so very sorry about your MIL. I truly believe that she is taking control of what ever time is left and I also believe that is a good thing. I also feel that Hospice was a wise choice. If things get better she can always go back home. She will get good care and pain should be kept under control. It sounds like she is taking charge of her own destiny and others will have to go along with her decision. I honestly feel that we actually pick our own time to take the journey. I am 74 and have ALWAYS been a fighter but if I was 80 or in my 80’s I probably would make the same decision. I have often wondered why someone lives to a ripe old age and in the end has to go through these awful things. Respect her decision, and just be there for her. My wish is for her comfort through this and Erin, be very strong. Please keep us updated as we truly care.
Thanks so much, all for your concern. I, too, was expecting treatment to be more aggressive, even in a terminal, palliative case. There is some evidence that the stent was working, or starting to help slightly. One of the major problems here is that my MIL would have absolutely never have agreed to go back for the stent replacement because the recovery was so horrible for her. I keep using the past tense here because mom has deteriorated very quickly and yesterday she decided to go to hospice. We were shocked by this because she doesn’t seem sick enough but they agree she needs to be there because she is so weak. I’m kind of at a loss. I so wish things had gone differently. I wish the stent had worked. I wish she would have felt well enough to get back to London and get another put in. I wish she wasn’t in hospice less than a month after her diagnosis. And I know that everyone here understands exactly what I’m feeling right now. Thanks again for all of you support,
ErinErine,
I’m so sorry your mom is feeling so badly. I agree with Lainy. Seems like this doctor has already given up. My mom had two internal stents and one external stent via ERCP. Lainy is right, these stents are placed in to relieve the blockage. Once inserted in the blocked area, flow should resume. The problems my mom had with the stents were the numerous infections. These stents, especially the small, plastic stents block very easily and result in infections. My mom also had the jaundice, the clay colored stools, all due to the blocked stents/infections.
I totally agree with Lainy that if you can, get a second opinion.Erin, stents work right away! This DOC……never mind. I have one suggestion what if you take her to ER? They wouldn’t possibly send her home without stenting, would they? Is there any hospital within say an hours drive? I keep thinking about you.
Lainy, I agree with you. My problem is I’m just not sure what to do about it. She doesn’t have an oncologist because she’s terminal. I’ve seen this before with other family members; if treatment is an option, you have an oncologist. If not, it’s the palliative care doctor. And, in our area, getting a new doctor or a second opinion isn’t really an option. See, at our hospital, they only do an ERCP on Wednesdays. Why she has to wait two weeks, I don’t know, except that the surgeon seems to believe it may just be taking a long time for the stent to work. My mother in law is still lucid and I’m not sure whether she will choose to have another ERCP since the recovery from this one has been so horrid. She had the option of going to the hospital today and having a CT scan and trying to determine what was going on and try to get her feeling better but she chose not to go. I also can’t march in and take over since she’s not my mother, if you know what I’m trying to say. Thanks so much for all your support thus far. I’ll keep you posted,
ErinErin, I just don’t believe at your Mother’s age she would wait 2 weeks as she will just become more sick. The bile must have somewhere to go and stenting is the only way. Very sorry but I do not agree with this Doc about anything. Just because she is 80 is she supposed to go in a bad way? Please I implore you to try and get her in to another ONC ASAP. I have never ever heard of an ONC who made a patient wait to be stented, not even in Canada. He put the stent in wrong! You need another Doctor. The point is she can hopefully be helped by just a stent change until they decide a form of treatment. What I meant was without clear ducts it will be like a domino effect one thing causing another.
While its true the yellow is like stained skin and takes awhile to heal the bile ducts are opened immediately and she should have immediate relief by the 2nd day. I am sorry I am upset about this ONC and his attitude is not acceptable.
Not sure if you are ready for this but I do have a list of things to watch for, signs that the end is near. It pertains to anything not just CC. I would be happy to email it to you if you like. Just let me know. I hope you can change ONCs tomorrow!!! Let me know.Hi Erin –
I too, was diagnosed with a Klatskin tumor. My bilirubin level reached 20 and a stent was inserted. I had a problem with the stent and another was inserted. They then decided to to a bile drain a couple of days later. A tube was inserted into my abdomen area. I was told to keep the bag at chest level and I drained the bag about 3 times a day. This was followed by a saline flush that I performed. The horrible itching was relieved within a couple of days. The jaundice color however took much longer to go away. I would say probably a couple of months before the color of my skin and eyes returned to “normal”. I was more concerned about the itching since there isn’t much that can be done for that. They prescribed medicine, but nothing really helped much. Within a month my bilirubin level went from 20 to 5 (normal ranges I’ve seen in research is 0-2). As long as the bilirubin level is high, the yellow will remain.My thoughts are with you and your mother-in-law and hope her doctors can relieve this quickly for her.
Mom had a horrible morning but she did rally this afternoon, somewhat. They were able to get a hold of her surgeon and he said that with her age and with the type and location of the tumour it can take up to two weeks for her to have symptom relief and that her jaundice may never fully go away. I am paraphrasing, here, because I didn’t speak to the doc myself. He said that he would pencil her in to try to place the metal stent on November 12 should she so choose. My concern is that she just may not feel well enough to face another procedure if she doesn’t get any symptom relief before then. The doc also said that sometimes, people simply fail very quickly with this cancer. I know this is true, it’s just a bit of a shock. She is resting comfortably at home, which is where she wants to be.
Lainy, when you say it will be a rough ride if this stent isn’t properly engaged: can you tell me what you mean by that? Will she progress to along the path to liver failure? Is that what happens when painless jaundice (well, not so painless anymore) simply progresses with ineffective prevention? How long can something like that go on before the body simply gives up? I know you’re not a doctor, but I’m trying to prepare myself for what this all could look like. At this rate, I’m not sure she’s going to be here in two weeks to try for the metal stent.
As always, thanks so much. Support from people who have been there is far more important than I had realized.
ErinThank you so much for your kind replies. I,too, was surprised that a follow up wasn’t scheduled and after today, I really do wonder whether the stent has worked. Her jaundice has not abated at all and her urine is absolutely brown. It will be a week tomorrow since she had the stent placed and the doc said we would see some improvement by now. Her palliative care team has said they would call the surgeon tomorrow to ask for advice. I’m anxious, to say the least. If the stent didn’t work, what next? They couldn’t get the metal stent in so I guess we just wait for options. Thanks for all your input and I’ll keep you all posted.
Hi Erin,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your MIL. But glad that you have joined in with us all as you are in the best place for support and help and you will get loads of both from everyone here. Glad as well that you have been reading as the better informed you are the better equipped you will be in helping with your MIL. If you have questions then please just ask and we’ll do wwhat we can to help.
I would have thought that your MIL’s doctor who placed the plastic stent scheduled a follow up meeting in Feb as plastic stents can last around 3 months or so before clogging can be an issue so that is my guess as to why a meeting was set for Feb. I agree with Marion and Lainy in that contacting the doc soon is a very good idea to discuss this stent issue.
You are not being naive at all in what you say here so please do not think that! When a stent starts to work as it should the patient will feel much better. My dad had a metal stent inserted and once his started to work after his diagnosis he felt so much better. I hope that things are just taking time here for the stent to wrok for your MIL as that can be the case. But if things do not improve then I would get in touch with the doctor about this.
You are doing the right thing in coming here. You are not alone in this now, we are here for you and we care. Please keep coming back and let us know how everything goes.
My best wishes to you and your MIL,
Gavin
Erin, I agree with Marion that the Doctor needs to be notified. If your Mother is having stent problems she cannot wait until February. If the stent is plastic they normally are exchanged every 2 months or so and if the stent is the problem, and it doesn’t get fixed, put on your seat belt it will be a rough ride. If the stent is properly engaged, she would feel a lot better.
Erin….perhaps you can try to get in touch with the physician. Although you have an appointment set for February, he may want to see your mother in-law again or, he may suggest something else. Either way, I believe that he should be notified either, by you or by the palliative care physician. Doctors handle the procedures but unless informed otherwise, they expect everything to be in order. Please stay in touch.
Hugs,
MarionThank you so much for your support thus far. I feel like I have read so much and yet understand so little. Mom doesn’t have an oncologist. She was adamant that she not have a nasty operation, chemo or therapy. Little did we know that none of these would even be suggested as an option. I understand why, but really, it is now in the hands of palliative care (and the Lord, but that’s a given). The surgeon that did the ERCP is at the university hospital an hour away. He didn’t schedule a follow up, but did schedule another ERCP to replace the stent in February. We aren’t unhappy with the level of care she’s gotten so far as everyone has been so kind and compassionate and she’s been tested and seen quickly (which doesn’t always happen in socialized medicine). But I do feel a bit like the doc who did the procedure sort of left us hanging because we have no way of knowing whether it worked or not. Maybe the stent just isn’t working. Is that possible? Would it be her bilirubin level that would need to be tested to see if there was any improvement? I’m sure the palliative care doc would order that test for us. She has just been ordered some new drugs to help with pain, sleeping, nausea and a steroid to help with energy. I just pray that she stabilizes somewhat because I don’t see her making the one to two years she was given as a prognosis unless she improves from her current state. I know this is terminal cancer, I know that we are in for a long, rough haul. I was just hoping that she would have a few “better” months after this stent was put in before the really bad stuff happens at the end. I know that I sound naïve here and that this cancer is particularly nasty, so I really do appreciate any and all of your input.
Erinerine…..welcome to our site. I understand your concern in regards to the lack of symptom relief. Perhaps you should speak with her primary care physician and request a referral to a gastroenterologist. Another good way to measure the success of biliary drainage is to compare the original count to the present count. A blood test is required. I agree, you need clarification as to why your mother in-law shows no signs of improvements. Hoping for others to chime in on this as well. Please share with us any further developments.
Again, thanks for joining in. We are glad that you have found us.
Hugs,
Marion
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