Here's what they told me
Well I'm in the hospital right now and just finished seeing the doctor who wanted me to be admitted. I had to rush to the computer to retell what was just said so I don't forget any details. Now I guess I should be so freaked out right now but I'll reserve that reaction until I hear from you guys.
I have an obstruction, that much we do know, the fact that I'm passing gas is good. But when I eat I become so distended and then I vomit, not good. He said that it is a good thing that I'm admitted by the looks of my stomach. Now let me get all this straight. He started off by saying that because the disease is progressing it's making the obstruction more apparent, he also had to throw in (trying not to freak out here) that along with this obstruction the prognosis is not good. I brushed over that and didn't want him to expand on that statement and let him carry on with what he had to say following that **** kicker. He said that they most never operate on women with ovarian cancer to aliviate bowel obstructions because they found that it caused more harm than good. That what they are going to do is try to treat this with medication and see how I respond to this treatment. Once again he had to tell me that he doesn't have a crystal ball and that he can't predict how long my stay will be, it could be 7 days it could be shorter depending on how well I react to the medication.
I asked how others have faired with this medication and he said fairly well, that most often it will work. The other kick in the gut was that in his opinion at this moment I would not be included in this clincal trail study, that as doctors as bad as they feel about us going this way (bowel obstruction) they would feel worse if the treatment killed me. So at this moment until they see how I do, they can not predict. He said there are other options out there but they won't be as effective as this clinical trial study.
I'm confused because I thought some of you ladies have had surgery to correct this obstruction. He was pretty adament that this is so rarely the case. I think because my disease is in an advance stage that they can't.
I'm not going to fall apart right now, I can't think of tomorrow. I can only prey to God that this medication they put me on will work. Has anyone anything to add to this, is there hope for me. This doesn't sound very optomistic does it? Lately I find myself so sleepy, I thought that it was from the pain killers I was taking but I didn't take any today and I'm so sleepy, anyone else experience this? Well that is all the news that I have to report, I will be restless in my room waiting to come back to the boards to see what you guys have added to this. Don't get me wrong, quietyly I'm freaking out. Don't want to cry right now. I'll wait til I hear from you. Love, hugs to all of you Ladies.
Linda
Comments
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confused
Hi Linda,
Your situation is very puzzling to me and makes me realize that our situations are all so unique, while they seem the same.
I had the surgery for two complete bowel obstructions. It was never suggested that any medication would solve my problem. My situation was caused by scar tissue. Your comment that the surgery rarely is done makes me wonder where I fit into the mix! My surgeon never led me to believe that I wouldn't be better off after the surgery. (and I am)
I am not sure what the root cause of your obstruction is, perhaps that is the difference(???) At the time of my surgery I had no evidence of cancer and still am in remission. Perhaps, I was a lesser risk(????)
I wish I had a magic answer for you. I can only share my experience. Do you have an advocate with you?. I sometimes find having someone else to hear the diagnosis is so helpful.
I am SO thinking of you and SO hope this medication works for you.
Love, Ginny (aka Froggy)0 -
why not rest
So why not rest? First you should check out what's on at icanhascheezeburger.com because it might be that you haven't laughed in a while, and that will usually do it.
http://icanhascheezburger.com/
As for all the confusing and disturbing information, it does seem that several highly skilled doctors respect what you've been through and want to be very careful that they don't cause unneccessary suffering. When they wake up in the morning, they will be thinking of you.
I get the feeling that you're comfortable there, and a good hospital is worthy of appreciation. Feeling grateful for one thing can turn a bad moment into a better one.0 -
Hmmmm
first off, so sorry about the news. Secondly, what is the name of the med? I am betting someone on this board has experience with it and we could find more information for you. It's ok to be scared, I would be. It's also ok to rest if you are tired. Do you have anyone with you or who you could call to be an advocate and ask some of these questions? I know when my mother was so sick in the hospital she couldn't follow much and we pretty much asked the questions. I also found that the nurses were a fountain of information and more willing to take the time to explain things to us in lay terms. especially the ones on the night shift. They had a little more time at night. Thoughts and prayers. Lisa0 -
praying for you Linda
Linda, I'm so sorry that you are stuck back in the hospital. And I'm sorry I can't be of help with any information on obstructions, but wanted to let you know my prayers are with you and I know you are a tough cookie and will do what your can to get to the bottom of this.
Are you on any kind of chemo? If so, then is this going to stop the chemo treatment?
My prayers are with you, dear today!!
WArm hugs,
kathleen0 -
surgery
My initial debulking surgery left me with a tempporary illeostomy due to a bowel obstruction. Since my ostomy was reversed I visited the ER probably 4 times due to symptoms of bowel obstruction. I was told they try to let it resolve on its own. I do know a woman on facebook who is 3 years from diagnosis and recently had surgery to repair a bowel obstruction that was not resolving. They let her try to work it out for about 10days or so. The obstruction did not resolve and they had to do surgery. This surgery left her with a permanent illeostomy. She knew this prior to having the surgery. Good luck to you!0 -
Prayersnancy591 said:surgery
My initial debulking surgery left me with a tempporary illeostomy due to a bowel obstruction. Since my ostomy was reversed I visited the ER probably 4 times due to symptoms of bowel obstruction. I was told they try to let it resolve on its own. I do know a woman on facebook who is 3 years from diagnosis and recently had surgery to repair a bowel obstruction that was not resolving. They let her try to work it out for about 10days or so. The obstruction did not resolve and they had to do surgery. This surgery left her with a permanent illeostomy. She knew this prior to having the surgery. Good luck to you!
I'm so sorry to hear about this. I haven't had a bowel obstruction, so I'm no help there. But I can pray, and pray I will. I'm hoping they can take care of the obstruction with the medicine. And, yes, if you let us know what medicine it is, I'll research it for you.
We're with you, dear one. And someone said it's okay to be frightened. That's true. You don't have to be so brave. And just ask the questions that you're willing to hear the answer to. I think you did a great job explaining what the doctor said and I liked how you just breezed over the areas that you're not wanting to hear right now.
Please stay in touch to let us know how you're doing.
Marty0 -
Nothing much to add except my hugs and prayers.Mawty said:Prayers
I'm so sorry to hear about this. I haven't had a bowel obstruction, so I'm no help there. But I can pray, and pray I will. I'm hoping they can take care of the obstruction with the medicine. And, yes, if you let us know what medicine it is, I'll research it for you.
We're with you, dear one. And someone said it's okay to be frightened. That's true. You don't have to be so brave. And just ask the questions that you're willing to hear the answer to. I think you did a great job explaining what the doctor said and I liked how you just breezed over the areas that you're not wanting to hear right now.
Please stay in touch to let us know how you're doing.
Marty
((((((LINDA))))))
Deep breath, sweetie. Take advantage of that sleepiness to escape from your worry for awhile. I feel the fight still in you, the life, the hope, even through the fear. Rest, sleep; try to be patient with this process. Just another battle in the long war, sweetie. It sucks; it's exhausting; but you will do it. I wish you didn't have to; I wish you were home today; but try to take advantage of the chance to SLEEP, SLEEP, SLEEP. Lay your burden down a little while. It's a luxury you should give in to. (((LINDA))))
A PS: My oncologist has said it at least a dozen times when I was always pushing for more aggressive treatment and my counts were tanked: "We want to kill your cancer, not kill YOU." So please don't let that freak you out. I was always glad my oncologist saved me from my own willingness to try anything.0 -
My bowel obstruction waslindaprocopio said:Nothing much to add except my hugs and prayers.
((((((LINDA))))))
Deep breath, sweetie. Take advantage of that sleepiness to escape from your worry for awhile. I feel the fight still in you, the life, the hope, even through the fear. Rest, sleep; try to be patient with this process. Just another battle in the long war, sweetie. It sucks; it's exhausting; but you will do it. I wish you didn't have to; I wish you were home today; but try to take advantage of the chance to SLEEP, SLEEP, SLEEP. Lay your burden down a little while. It's a luxury you should give in to. (((LINDA))))
A PS: My oncologist has said it at least a dozen times when I was always pushing for more aggressive treatment and my counts were tanked: "We want to kill your cancer, not kill YOU." So please don't let that freak you out. I was always glad my oncologist saved me from my own willingness to try anything.
My bowel obstruction was treated surgically, but I was already scheduled for de-bulking surgery, so it was kind of a since-we're-in-the-neighborhood kind of thing.
I had 8-10 inches of my bowel removed because the obstruction was a tumor that had spread from the left ovary (primary tumor site). They wanted to not only resolve the obstruction, but remove the malignancy, as well.
If you really want to know how long the doctor thinks you might have, just ask him. If you would rather not hear his thoughts/opinion, then don't ask. But remember, it's not carved in stone. Doctors are wrong all the time. I personally know a couple of cancer patients who were given up for dead by their doctors, and are now NED.
Never, never, EVER give up. No matter what the guys in the white coats say. They don't get to decide; only God does.
Carlene0 -
So true CarleneHissy_Fitz said:My bowel obstruction was
My bowel obstruction was treated surgically, but I was already scheduled for de-bulking surgery, so it was kind of a since-we're-in-the-neighborhood kind of thing.
I had 8-10 inches of my bowel removed because the obstruction was a tumor that had spread from the left ovary (primary tumor site). They wanted to not only resolve the obstruction, but remove the malignancy, as well.
If you really want to know how long the doctor thinks you might have, just ask him. If you would rather not hear his thoughts/opinion, then don't ask. But remember, it's not carved in stone. Doctors are wrong all the time. I personally know a couple of cancer patients who were given up for dead by their doctors, and are now NED.
Never, never, EVER give up. No matter what the guys in the white coats say. They don't get to decide; only God does.
Carlene
Yes I agree, they don't get to decide do they? Well to answere your questions. First and foremost my Meghan is just fine, she is with my neighbors who are so wonderful with her and she really really enjoys hanging with them. They are youngesh, in there late 20's and early 30's. He's awesome in halping her with her homework. They took care of her when I went in just before Xmas. At first I didn't think they were around, even though they literally live right next door I knew that they were busy with their school work so I didn't want to bother them. The ulternate was she was to stay with another neighbor, who I know well and she is awesome but Meghan was pretty upset with that whole deal as Rosemary can be a bit too in your face, not in a bad way but she is just a bit too much at times. So yesterday while Meghan was home for a minute, my other neighbors happened to call and when they found out I was in they jumped at the chance to take my girl. Meghan was so excited, so that really puts me at ease.
I will ask when I get off the computer what the name of the drugs are and will report back to my troop (you guys) with the name/s of it. Yeah strange isn't it, that we all have a different approach to this obstruction thing. I don't want to know a time span that is for sure because as Carlene and I'm sure the rest of you would agree, what do they know?
I also find it so true that the nurses are wonderful with information. I was pretty lucky to have the sames team as before, and one in particular who I really enjoy is here and she is absolutely wonderful, she really puts my mind to ease. Yes sleep is what I'm doing and I also brough my knitting with me, which I should have a blanket that could cover the city of Toronto completed by the time I"m out of here. I am so hungry and I go to Druxy's downstairs to get my coffee and can't stand looking at the Montreal smoked beef down there as that is my absolute favorite! Even when I came here for my regular appointments I wouldn't leave without my sammy! for now I have to pass. I haven't seen a doctor yet, which I prefere it that way for now.
Well I think I best get outtahea and back to my room, my nurse wants to get my meds to me and I'll find out what they are . Thanks to all of you for rallying around me and all your responses, I can't tell you how I look forward to coming her to this little room and hearing from you. Love, hugs and kisses to all of you. Collective prayers I know will work magic. I am feeling a bit better, menally, did I mention that I am not as distended as yesterday, good sign I say, and i hope I have another B movement today, that would be great. I'll be back later.
Linda0 -
Hi Doriondorion said:So true Carlene
Yes I agree, they don't get to decide do they? Well to answere your questions. First and foremost my Meghan is just fine, she is with my neighbors who are so wonderful with her and she really really enjoys hanging with them. They are youngesh, in there late 20's and early 30's. He's awesome in halping her with her homework. They took care of her when I went in just before Xmas. At first I didn't think they were around, even though they literally live right next door I knew that they were busy with their school work so I didn't want to bother them. The ulternate was she was to stay with another neighbor, who I know well and she is awesome but Meghan was pretty upset with that whole deal as Rosemary can be a bit too in your face, not in a bad way but she is just a bit too much at times. So yesterday while Meghan was home for a minute, my other neighbors happened to call and when they found out I was in they jumped at the chance to take my girl. Meghan was so excited, so that really puts me at ease.
I will ask when I get off the computer what the name of the drugs are and will report back to my troop (you guys) with the name/s of it. Yeah strange isn't it, that we all have a different approach to this obstruction thing. I don't want to know a time span that is for sure because as Carlene and I'm sure the rest of you would agree, what do they know?
I also find it so true that the nurses are wonderful with information. I was pretty lucky to have the sames team as before, and one in particular who I really enjoy is here and she is absolutely wonderful, she really puts my mind to ease. Yes sleep is what I'm doing and I also brough my knitting with me, which I should have a blanket that could cover the city of Toronto completed by the time I"m out of here. I am so hungry and I go to Druxy's downstairs to get my coffee and can't stand looking at the Montreal smoked beef down there as that is my absolute favorite! Even when I came here for my regular appointments I wouldn't leave without my sammy! for now I have to pass. I haven't seen a doctor yet, which I prefere it that way for now.
Well I think I best get outtahea and back to my room, my nurse wants to get my meds to me and I'll find out what they are . Thanks to all of you for rallying around me and all your responses, I can't tell you how I look forward to coming her to this little room and hearing from you. Love, hugs and kisses to all of you. Collective prayers I know will work magic. I am feeling a bit better, menally, did I mention that I am not as distended as yesterday, good sign I say, and i hope I have another B movement today, that would be great. I'll be back later.
Linda
I have just been reading your blog. I am so sorry that you are alone at this time. Please don't be afraid we are all with you in spirit. It is good that you are able to get to a computer to send messages to us, please don't stop. You are not alone we are all here fighting this beast with you - draw stength from that.
MUCH LOVE tina xxxxx0 -
Thank heavens for the responses!!!!Tina Brown said:Hi Dorion
I have just been reading your blog. I am so sorry that you are alone at this time. Please don't be afraid we are all with you in spirit. It is good that you are able to get to a computer to send messages to us, please don't stop. You are not alone we are all here fighting this beast with you - draw stength from that.
MUCH LOVE tina xxxxx
I could feel the desperation in your post last night. I don't know much about obstruction so I did not respond because I could tell you were looking for answers. I kept you in my prayers last night, hoping that today would be a better day,and tomorrow, and the next day, etc.
Hugs and prayers,
Allison0 -
thank you so muchminky1225 said:Thank heavens for the responses!!!!
I could feel the desperation in your post last night. I don't know much about obstruction so I did not respond because I could tell you were looking for answers. I kept you in my prayers last night, hoping that today would be a better day,and tomorrow, and the next day, etc.
Hugs and prayers,
Allison
Well thank you so much for your responses, no news today, except for x rays tomorrow and I'm to see a diatician. Now for the name of the meds I'm on here it is....
Pantoloc and Maxaran
Well it seems that this computer room isn't the worlds best kept secret someone is waiting on it so I gots to go. Love to all.
Linda0 -
Drugsdorion said:thank you so much
Well thank you so much for your responses, no news today, except for x rays tomorrow and I'm to see a diatician. Now for the name of the meds I'm on here it is....
Pantoloc and Maxaran
Well it seems that this computer room isn't the worlds best kept secret someone is waiting on it so I gots to go. Love to all.
Linda
Hi Linda,
I looked up the drugs and didn't find very good information. It looks like Pantaloc is used for acid reflx and Maxeran is used to stimulate gastric emptying.
Praying for you!
Marty0 -
thanksMawty said:Drugs
Hi Linda,
I looked up the drugs and didn't find very good information. It looks like Pantaloc is used for acid reflx and Maxeran is used to stimulate gastric emptying.
Praying for you!
Marty
Hi Marty
Yes I thought it was something like that. The gastric emptying is definately what I need. I'm still bloated but it is gradrually going down. They are putting me on a level 1 diet, what ever that means, has to be better than what I was getting, clear fluids, how very boring, when all I want is a big piece of meat\!!!! Thanks for looking that up for me and I'll keep you posted. Love to all and huge hugs!!!!
Linda0 -
PantalocMawty said:Drugs
Hi Linda,
I looked up the drugs and didn't find very good information. It looks like Pantaloc is used for acid reflx and Maxeran is used to stimulate gastric emptying.
Praying for you!
Marty
Pantaloc is Canadian for Protonix.0 -
Probably not...dorion said:thanks
Hi Marty
Yes I thought it was something like that. The gastric emptying is definately what I need. I'm still bloated but it is gradrually going down. They are putting me on a level 1 diet, what ever that means, has to be better than what I was getting, clear fluids, how very boring, when all I want is a big piece of meat\!!!! Thanks for looking that up for me and I'll keep you posted. Love to all and huge hugs!!!!
Linda
I doubt you will be getting a big piece of meat anytime soon. I'm guessing that Level One diet is full liquids, at best. But that means anything you would normally eat with a spoon - like oatmeal, pudding, etc.
There is also a low residue diet that they often use for people with bowel obstructions. As the name implies, it is designed to produce fewer and smaller bowel movements. On the low residue diet you get bread, crackers, pasta, rice, milk-based soups, ice cream, etc.
I feel your pain. I was on liquids for a very long time.
Carlene0 -
more than thatHissy_Fitz said:Pantaloc
Pantaloc is Canadian for Protonix.
Hey there
Yes well they did graduate me to broth and crackers, and icecream!!! Supper I had a cream of potatoe soup, some broth, but my absolute favorite was the beautiful gorgeous peice of cheddar cheese and a slice of bread that I made a mini sandwich out of. some cookies and that yummy butterscotch pudding which I almost licked the container....lol....well I will be here for the weekend and should be out by Monday or no later than Tuesday, at least there is a light at the end of the tunnel. I promise not to piss away any days feeling modlin or sad, I am going to keep as busy has I possibly can without running myself ragged. Thanks for all your support and information it means so much to me. Now if I only can poop! LOL
Love and hugs to you all
Linda0
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