How much more can she endure?
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- This topic has 23 replies, 9 voices, and was last updated 10 years, 11 months ago by clarem.
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January 28, 2014 at 8:15 pm #78647claremSpectator
Hi Lou,
My sister had this bypass surgery. She was taken to theatre to have the majority of her liver removed but the tumour was more extensive than initially thought so the surgeon did not touch her liver. He did foresee that the tumour would block her stomach so performed the bypass surgery there and then to avoid having to do it when an obstruction occurred.
They need to give the stomach some time to recover and for movement within the bowel to start and they will slowly introduce liquids and then food. I am glad your mum is pain free and I hope she starts to improve and respond to you. Take it an hour at a time when it all seems to much to get from day to day. x
January 28, 2014 at 5:43 pm #78646darlaSpectatorDear Lou,
Thanks for taking the time to update your mom’s situation. Glad they finally did something and that she is pretty much not in pain. I too hope there will be some improvement soon and she will be more responsive and able to eat on her own. Try to take some time for yourself during this stressful time. I know it’s not easy, but you need to take care of you, too.
Take care and let us know how mom is doing.
Love & Hugs,
DarlaJanuary 28, 2014 at 5:25 am #78645lainySpectatorDear Lou, the most important thing is that Mum
is not feeling pain/discomfort right now. She sure suffered enough before. I hope she heals quickly and comfortably and that soon she will start eating again. Thanks for the update and be strong.January 28, 2014 at 5:13 am #78644marionsModeratorLou….I assume that your Mom’s non-response is related to the medication given. So glad to know that she is pain free (nearly.)
My heart goes out to you and your family. This can be a difficult disease to treat.
Hugs,
MarionJanuary 28, 2014 at 4:41 am #78643iliasMemberHi all,
thanks so much for your responses. I wish I could provide you with more details, but they are a little vague at the moment,
Mum ended up in hospital several days after Xmas with a so called bowel obstruction. They immediately stopped feeding her and placed an IV drip into her arm for hydration. In addition to the IV tube they also inserted a nasal gastro tube into her nose to drain everything from her stomach. She could not eat or drink. After many weeks of scans and xrays the doctor agreed to open her up and take a closer look. A large tumour was obstructing food from flowing into her intestines/bowel. The surgeon rerouted what he thought was the problem.
The surgeon advised no other surgery was possible. He did not touch the tumour as that was not on the agenda.
The surgeon is hoping she finds some relief, but will be at least a week before she can eat or drink anything. They currently have a port in her arm feeding her with the nutritients needed. She is close to non responsive, but is nearly pain free.
Sorry guys, but that is all I have at the moment. I will get back to you all soon
Lou
January 27, 2014 at 8:14 pm #78642marionsModeratorThanks, Lisa, for being so descriptive. I agree with you in that other than being hooked up to nasal gastro tube, you would not be able to live life as you do now.
I understand that those with prior resection may not be able to undergo biliary bypass however; there are many that would qualify nevertheless.
I will send to you a personal e-mail via the address you have provided us with.
Hugs,
MarionJanuary 27, 2014 at 8:06 pm #78641lisasSpectatormarions wrote:As mentioned previously, I believe that the area of biliary bypass is grossly neglected with our disease. The affected patients suffer greatly and in my opinion, it is unnecessary suffering that can be prevented with a procedure such as the one you have been able to receive.
I believe that the US is lagging other countries with their approach to biliary by-pass. This may be related to (in part) the possible legal consequences and/or the institutional reluctance of providing such surgery. However; I have encountered great support from the medical community at large and have been encouraged by many to pursue ways of pushing for changes in this particular area of possible treatment for our patients. This is a huge undertaking for the Cholangiocarcinoma foundation; any input you can provide to us can aid us in establishing a feasible protocol for biliary bypass for those affected by biliary blockage due to tumor progression.
Hugs,
MarionWhatever I can do to aid in this, I’m up for doing. Please let me know specifically what I could to to help establish a protocol. I am very lucky that once my oncologist and surgeon knew that I was in the hospital and dehydrated, they knew just what to do within minutes of getting a CT scan and seeing where the blockage was.
Honestly, living with the surgery has not been hard once I got over being sore (although, at 56, I was in pretty darn good shape before all this started in late September, so my experience may not be typical). My surgeon chose to do an “old fashioned” normal incision and not do the procedure laproscopically because he said “I was just a skinny girl anyway” and I’d have a smaller incision that way versus the multiple incisions he would do laproscopically. Tell me I’m a skinny girl and I’m putty in one’s hands.
I was just exhausted for weeks after the surgery and that really surprised me – I’m generally a high energy, active person, but man, it was a chore to do anything and I walked around like a little old lady, sort of hunched over and very slow. But, your abdominal area doesn’t really like to be messed with all that much and it fights back at such an intrusion and recovery does take more time than one would expect.
I’m back to daily walks at normal pace (haven’t really gotten on my bike much, but that’s coming soon). I’ve also used one of those giant balls that you sit on and gently bounce to get some exercise (the physical therapists at Baylor helped me plan out some exercises with it).
It took a pretty good while to get much appetite back and I had to eat really small meals – sometimes just a few bites and I was done, but taste (and this may be due to chemo, not the Gastro J surgery) and appetite and the ability to eat more than a few bites have all come back.
Even if the recovery were far worse, I absolutely believe I wouldn’t still be here without the surgery. I was getting zero nutrition, losing weight at an alarming pace and just sick as a dog.
January 27, 2014 at 7:19 pm #78640marionsModeratorAs mentioned previously, I believe that the area of biliary bypass is grossly neglected with our disease. The affected patients suffer greatly and in my opinion, it is unnecessary suffering that can be prevented with a procedure such as the one you have been able to receive.
I believe that the US is lagging other countries with their approach to biliary by-pass. This may be related to (in part) the possible legal consequences and/or the institutional reluctance of providing such surgery. However; I have encountered great support from the medical community at large and have been encouraged by many to pursue ways of pushing for changes in this particular area of possible treatment for our patients. This is a huge undertaking for the Cholangiocarcinoma foundation; any input you can provide to us can aid us in establishing a feasible protocol for biliary bypass for those affected by biliary blockage due to tumor progression.
Hugs,
MarionJanuary 27, 2014 at 1:26 pm #78639lisasSpectatormarions wrote:This type of blockage occurs often causing vomiting which cannot be treated with drugs of any kind. I applaud your physician, Lisa, for making a decision so beneficial to you.
Hugs,
MarionThat was exactly it. No medicine helped. The internist that was seeing me in the hospital had no idea what yo do, but once we realized he hadn’t talked to my surgeon, we got him involved and he knew immediately I had a blockage and what they needed to do.
January 27, 2014 at 6:58 am #78638marionsModeratorThanks, Lisa. I strongly believe that others would benefit as well from this procedure. Many of the physicians I had spoken with agree but, I don’t see it implemented often. This type of blockage occurs often causing vomiting which cannot be treated with drugs of any kind. I applaud your physician, Lisa, for making a decision so beneficial to you.
Hugs,
MarionJanuary 27, 2014 at 2:27 am #78637willowSpectatorGlad you brought this procedure up. Thank you for the insight. And glad to hear of the relief it has brought.
January 27, 2014 at 1:59 am #78636lisasSpectatormarions wrote:Lisa, if you are able and willing to do so would you please be so kind and explain to us the positive aspects of the surgical bypass.Hugs,
MarionAt 130 lbs, mine wasn’t for the typical reason. But, after my cholangiogram/PTC drain procedure in October, I was back in the hospital in less than 72 hours because I was so severely dehydrated and could not keep anything down – food or liquid. It took several days to figure out my tumor was squeezing my duodenum, which was the cause of my not being able to eat or drink and the resulting dehydration. The gastrojujenostomy (which is what, in essence, a gastric bypass is) re-routed things around the blockage so that I could eat.
I lost 20 lbs in short order, which I didn’t really have to lose, because of that blockage from the tumor. If they hadn’t done the re-rout, I don’t think I’d be here 3 months later.
So, even though it’s tough surgery, I hope it brings relief to ilias’s mom.
Lisa
January 27, 2014 at 12:59 am #78635marionsModeratorI am a big proponent of gastric bypass, but find it not supported by the medical community at large and that I challenge. Yes, it brings along other issues, but from what I have seen on this site and have experienced with my husband, gastric bypass would have eliminated major problems for him and would do so for others as well.
Lou, I wish and hope for your Mom to benefit greatly for this surgery. Please keep us in the loop.Lisa, if you are able and willing to do so would you please be so kind and explain to us the positive aspects of the surgical bypass.
Hugs,
MarionJanuary 26, 2014 at 9:01 pm #78634lisasSpectatorI also had, in essence, a gastric bypass (gastro j) surgery back in October because my tumor was constricting my duodenum. The surgery made a huge difference ultimately in how I feel and I’m quite confident I wouldn’t be here today without it. That said, it is big surgery and I was not prepared for how long/hard the recovery was going to be. So, wishing your mom a good recovery, even if it does take time. If I can answer any questions, let me know.
Ps, the nasal gastric tube was the worst. Instant relief when that comes out.
January 26, 2014 at 8:44 pm #78633claremSpectatorHi Lou,
I hope your mum and you are getting the relief that you need.
x -
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