freaking out

Daisylin

Hi all,
Well, Lee had an overall good weekend, we even got out for a car ride and a trip to our local apple orchard's gift shop.

However...... His feeding tube site has been leaking dark brown liquid, lots of it, he soaked through his gauze pad covering several times during the last 18 hours, and it even soaked right through his clothing, bed sheets etc. You can actually see it dripping out of the incision site. More alarmingly, he vomited the same dark brown liquid during the night. We have no idea what's causing this.

We called the at home nursing agency on call nurse, and she said it was probably the liquid sennekot causing the dark brown colour. Now, my problem with that opinion is that since he has a GJ tube, the sennekot should not be in his stomach at all, which is where the tube comes out from (feeds directly into small intestine, bypassing the stomach) . He used sennekot at around 8pm last night, so also, should it not have made it's way onwards in a 7 hour period? I am freaking out right now.... Just as a side note, we have not had any issues with the feeding tube, just very small amounts of discharge which we were told is normal. A nurse is supposed to come out at some point this morning to see him, but they are pretty unpredictable in their timing, and it's not uncommon to wait all day and into the evening for a visit. I will call the palliative care doc this morning, but of course nobody there at 6am, so we have to wait.

I feel so scared and alone right now, I hope that before anyone has a chance to respond, we will have come up with some conclusions. I just needed to share with someone who will understand my fears.... thanks for listening
Chantal

Wpturner05

Chantal,
Does it have an
Chantal,

Does it have an odor? When was his last BM? Is he passing gas? Does it look grainy, like coffee grounds?

Daisylin

Wpturner05 said:

Chantal,
Does it have an
Chantal,

Does it have an odor? When was his last BM? Is he passing gas? Does it look grainy, like coffee grounds?

Whitney,
It does have an odor, almost smells like red wine, but of course he's not been drinking any of that!! last BM was 4 days ago, hence the sennekot...... he's been pretty gassy for months, but no more than usual, lots of hiccups and burping though in the last few days, since stent went in. Did not look like coffee grinds, just liquid mostly coming out.

Wpturner05

Daisylin said:

Whitney,
It does have an odor, almost smells like red wine, but of course he's not been drinking any of that!! last BM was 4 days ago, hence the sennekot...... he's been pretty gassy for months, but no more than usual, lots of hiccups and burping though in the last few days, since stent went in. Did not look like coffee grinds, just liquid mostly coming out.

Without seeing him or doing
Without seeing him or doing an assessment, it sounds like he has a possible small bowel obstruction. He should be evaluated as soon as possible for that. In order to diagnose, he would need to be evaluated by a physician and have an obstruction series. This is a series of X-rays that follow barium through the intestines with the use of X-ray.

Just my humble opinion, but i would call an on-call doctor and have him seen in emergency room. Again, my humble opinion.

((HUGS))

Whitney

Ericalynn

I agree with Whitney
Chantal,
I agree with Whitney it could be a bowel obstruction, you will not know with out an X-Ray. Unfortunately I think (just my opinion) that you should head back to hospital. Hopefully it will be something simply but without an Imaging study you will not know for sure.
I know you are frightened and we are all here for you
Sending positive thoughts your way
Love Erica

Wpturner05

Ericalynn said:

I agree with Whitney
Chantal,
I agree with Whitney it could be a bowel obstruction, you will not know with out an X-Ray. Unfortunately I think (just my opinion) that you should head back to hospital. Hopefully it will be something simply but without an Imaging study you will not know for sure.
I know you are frightened and we are all here for you
Sending positive thoughts your way
Love Erica

Now that's 2 of us - now go,
Now that's 2 of us - now go, I am obsessively refreshing this thread to see who chimes in and what your response is. Many, many hugs to both of you.

Whitney

Unknown

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Unknown

This comment has been removed by the Moderator

Daisylin

unknown said:

This comment has been removed by the Moderator

waiting
I called the cancer clinic first thing this morning, and they said to call the visiting nurse. So, I called, and now we're waiting for her to come. From there, sounds like she'd call the palliative care doctor, who would then do whatever she needs to do. Sounds kind of backwards and that we're wasting time..... So frustrating, but I suppose it's better than sitting in the ER for hours on end. Why can't we just get a break???? I feel like I'm losing my mind...
Thanks for all the replies,
Chantal

Daisylin

unknown said:

This comment has been removed by the Moderator

Sherri,
I have no idea, but from what we were told when they inserted it, they do it that way so that it bypasses the stomach entirely, so that if he vomits, he won't lose his nutrition from the tube. He's still vomiting the dark brown stuff, but the drainage from the tube seems to be lessening. I think you are all right about the blockage.....
Chantal

Wpturner05

Daisylin said:

waiting
I called the cancer clinic first thing this morning, and they said to call the visiting nurse. So, I called, and now we're waiting for her to come. From there, sounds like she'd call the palliative care doctor, who would then do whatever she needs to do. Sounds kind of backwards and that we're wasting time..... So frustrating, but I suppose it's better than sitting in the ER for hours on end. Why can't we just get a break???? I feel like I'm losing my mind...
Thanks for all the replies,
Chantal

Keep calling
Chantal,
Keep calling them and asking when they expect the nurse to arrive. Ask them how often you can call until she gets there . . . There is no reason he should be put off . . . I hope she arrives soon so lee can have relief.

Praying for both of you.

Whitney.

jss2011

Daisylin said:

Sherri,
I have no idea, but from what we were told when they inserted it, they do it that way so that it bypasses the stomach entirely, so that if he vomits, he won't lose his nutrition from the tube. He's still vomiting the dark brown stuff, but the drainage from the tube seems to be lessening. I think you are all right about the blockage.....
Chantal

Chantal and Lee
I have no idea about the feeding the feeding tube and blockages.
Just wanted to say I hope you both can get a break from all the hospital stuff for awhile.
You have been through so much, prayers for you both.

Hugs,
Julie

Daisylin

jss2011 said:

Chantal and Lee
I have no idea about the feeding the feeding tube and blockages.
Just wanted to say I hope you both can get a break from all the hospital stuff for awhile.
You have been through so much, prayers for you both.

Hugs,
Julie

nurse just came
The nurse feels like it's a blockage too, and after conferring with Lee's doctor, they decided to try home treatment first, with suppository and plenty of fluids. The nurse will be coming back later today, to check on him. If he still has a blockage at that point, the doctor will probably readmit him to hospital for further testing....... please God, no more hospital....... cut us some slack here!!

They were not sure about the brown stuff, but best guess is that everything is getting backed up into his stomach, including last nights sennakot liquid that we put in the tube.

Thanks for the love, advice and support, as always
Chantal

Wpturner05

Daisylin said:

nurse just came
The nurse feels like it's a blockage too, and after conferring with Lee's doctor, they decided to try home treatment first, with suppository and plenty of fluids. The nurse will be coming back later today, to check on him. If he still has a blockage at that point, the doctor will probably readmit him to hospital for further testing....... please God, no more hospital....... cut us some slack here!!

They were not sure about the brown stuff, but best guess is that everything is getting backed up into his stomach, including last nights sennakot liquid that we put in the tube.

Thanks for the love, advice and support, as always
Chantal

Do not let too much time go
Chantal, the brown stuff is liquid stool before it becomes solid. The smell is a combination of that and bile. It was pouring out of his site and he was vomiting because it cannot pass through the GI tract, so it has to go somewhere. He should have bowel rest - no tube feeds and nothing by mouth at the very least. The suppository may not be enough. I URGE you to not put anything in his gut until he has a BM. Do not let too much time pass today if he does not improve even slightly - call the nurse back in and see if they will get him in for imaging. He may need more aggressive therapy, such as an NG tube - I PRAY not, but it may be necesary.

KEEP HIS GUT EMPTY!!!! You do not want him to perforate.

Hugs to you and I will look forward to hearing updates

Whitney

Wife of patient 50378

Wpturner05 said:

Do not let too much time go
Chantal, the brown stuff is liquid stool before it becomes solid. The smell is a combination of that and bile. It was pouring out of his site and he was vomiting because it cannot pass through the GI tract, so it has to go somewhere. He should have bowel rest - no tube feeds and nothing by mouth at the very least. The suppository may not be enough. I URGE you to not put anything in his gut until he has a BM. Do not let too much time pass today if he does not improve even slightly - call the nurse back in and see if they will get him in for imaging. He may need more aggressive therapy, such as an NG tube - I PRAY not, but it may be necesary.

KEEP HIS GUT EMPTY!!!! You do not want him to perforate.

Hugs to you and I will look forward to hearing updates

Whitney

Chantal & Lee in London
My prayers are with you guys. I hope there has been a solution to the jtube problem from this morning. I am thinking of you Lee in London!! Take care Chantal.

Yes..... what a fabulous picture of you two.
Sal

birdiequeen

Daisylin said:

nurse just came
The nurse feels like it's a blockage too, and after conferring with Lee's doctor, they decided to try home treatment first, with suppository and plenty of fluids. The nurse will be coming back later today, to check on him. If he still has a blockage at that point, the doctor will probably readmit him to hospital for further testing....... please God, no more hospital....... cut us some slack here!!

They were not sure about the brown stuff, but best guess is that everything is getting backed up into his stomach, including last nights sennakot liquid that we put in the tube.

Thanks for the love, advice and support, as always
Chantal

Hope all is well now!
Just got on the site for the first time today....I'm praying they have found and corrected the problem Lee was having.

chemosmoker

Aspirated and vomiting not good with blockage...
Chantal and Lee,

Waiting & sitting on PINS and NEEDLES waiting to hear when he gets some movement or that you have gone to the hospital.

I have told you, but for others benefit, if bile gets aspirated through vomiting (usually worse when it is green or already more 'digested') the acidity of the bile WILL dissolve lung tissue and make it very hard for him to keep his blood-oxygen content up, causing a host of new issues. I read an article recently about this with an EC patient with a blockage that was let go for too long, and he vomited bile and aspirated it and as a result of some getting into his lungs, it dissolved his lung tissues and he died from THAT. He was unable to get enough oxygen, and they do not have a way to "fix" lungs from this condition.

I am NOT trying to sound horrible or scare you, that's why I told you this first before posting it, but with this crappy EC I don't want my friends taking chances and I don't want to lose anyone. Not to something OTHER than the EC, which none of us in Lee and my's position can control, beyond a point anyway.

I love you both and I am praying for you. The LAST thing I want is for either of you to have to spend any dam more time in or around a hospital!!! We ALL know you have had quite enough of that for a life time recently. YOU deserve a break if ANYONE does.

I am here for you. It is encouraging to read all the many posts and see how much everyone cares despite the problems we might face. What a great family we have here.

I will hope for the BEST, but if he doesn't improve and MOVE, don't wait for these nurses too long and get him to the hospital, please?

Love and hugs and anger shared for no breaks for you two yet,
-Eric

Daisylin

chemosmoker said:

Aspirated and vomiting not good with blockage...
Chantal and Lee,

Waiting & sitting on PINS and NEEDLES waiting to hear when he gets some movement or that you have gone to the hospital.

I have told you, but for others benefit, if bile gets aspirated through vomiting (usually worse when it is green or already more 'digested') the acidity of the bile WILL dissolve lung tissue and make it very hard for him to keep his blood-oxygen content up, causing a host of new issues. I read an article recently about this with an EC patient with a blockage that was let go for too long, and he vomited bile and aspirated it and as a result of some getting into his lungs, it dissolved his lung tissues and he died from THAT. He was unable to get enough oxygen, and they do not have a way to "fix" lungs from this condition.

I am NOT trying to sound horrible or scare you, that's why I told you this first before posting it, but with this crappy EC I don't want my friends taking chances and I don't want to lose anyone. Not to something OTHER than the EC, which none of us in Lee and my's position can control, beyond a point anyway.

I love you both and I am praying for you. The LAST thing I want is for either of you to have to spend any dam more time in or around a hospital!!! We ALL know you have had quite enough of that for a life time recently. YOU deserve a break if ANYONE does.

I am here for you. It is encouraging to read all the many posts and see how much everyone cares despite the problems we might face. What a great family we have here.

I will hope for the BEST, but if he doesn't improve and MOVE, don't wait for these nurses too long and get him to the hospital, please?

Love and hugs and anger shared for no breaks for you two yet,
-Eric

update
just a quick update, and a thank you for all your positive thoughts and prayers. Eric was right, we are a great family here.

Lee's nurse came by again in the afternoon, and after another chat with the doctor, we decided to say home, and try for movement here..... and VOILA, success!!! She told him the option was there to go to the hospital, but she would be able to do the exact things at home that the hospital would do, (without the scans)

The feeding tube site is still leaking brown/black goop, and he's vomited it a couple more times today, but overall, he seems to be much better tonight. We are going to closely monitor him tonight and tomorrow, and if there are any concerns at all, we are to either call the 24 hour on call nurse, or go directly to hospital. We were prescribed yet another anti-nauseant tonight, so we'll add it to the arsenal.

I still feel freaked out, the black goop is pretty disturbing (no one has really said what it was, but I think Whitney may have been right) I googled the heck out of it, and could find no mention of feeding tubes leaking that badly. Fingers, toes and eyes crossed that tomorrow finds us all clear.

Chantal

Laura23

Daisylin said:

update
just a quick update, and a thank you for all your positive thoughts and prayers. Eric was right, we are a great family here.

Lee's nurse came by again in the afternoon, and after another chat with the doctor, we decided to say home, and try for movement here..... and VOILA, success!!! She told him the option was there to go to the hospital, but she would be able to do the exact things at home that the hospital would do, (without the scans)

The feeding tube site is still leaking brown/black goop, and he's vomited it a couple more times today, but overall, he seems to be much better tonight. We are going to closely monitor him tonight and tomorrow, and if there are any concerns at all, we are to either call the 24 hour on call nurse, or go directly to hospital. We were prescribed yet another anti-nauseant tonight, so we'll add it to the arsenal.

I still feel freaked out, the black goop is pretty disturbing (no one has really said what it was, but I think Whitney may have been right) I googled the heck out of it, and could find no mention of feeding tubes leaking that badly. Fingers, toes and eyes crossed that tomorrow finds us all clear.

Chantal

Praying
Wow- what a crazy day! Hoping and praying that you have a better night and that this leak stops and the obstruction gets cleared quickly.

Laura
Wife to Luis
Dx 4/11/2011. T3N1M0
MIE 8/30/2011

Ericalynn

Daisylin said:

update
just a quick update, and a thank you for all your positive thoughts and prayers. Eric was right, we are a great family here.

Lee's nurse came by again in the afternoon, and after another chat with the doctor, we decided to say home, and try for movement here..... and VOILA, success!!! She told him the option was there to go to the hospital, but she would be able to do the exact things at home that the hospital would do, (without the scans)

The feeding tube site is still leaking brown/black goop, and he's vomited it a couple more times today, but overall, he seems to be much better tonight. We are going to closely monitor him tonight and tomorrow, and if there are any concerns at all, we are to either call the 24 hour on call nurse, or go directly to hospital. We were prescribed yet another anti-nauseant tonight, so we'll add it to the arsenal.

I still feel freaked out, the black goop is pretty disturbing (no one has really said what it was, but I think Whitney may have been right) I googled the heck out of it, and could find no mention of feeding tubes leaking that badly. Fingers, toes and eyes crossed that tomorrow finds us all clear.

Chantal

Everything is crossed
Chantal,
I am crossing everything I can think hoping that Lee will get to feel better. I am not 100% sure what the leaking is but I too agree with Whitney hopefully if Lee was starting to get obstructed and that issue is resolved the leaking from the tube will slow down and stop. If it does not stop I think a physician should see what is going on but you can take that One-day at a Time. I am so sorry that Lee has to go through this and you have to be freaked out with worry. Wish I could do more but know I am out here along with all in our EC Family sending positive thoughts that the worst of this is over.
Hugs to You & Lee
Please try to keep us posted we are all so worried about you both
Love
Erica

cher76

Daisylin said:

update
just a quick update, and a thank you for all your positive thoughts and prayers. Eric was right, we are a great family here.

Lee's nurse came by again in the afternoon, and after another chat with the doctor, we decided to say home, and try for movement here..... and VOILA, success!!! She told him the option was there to go to the hospital, but she would be able to do the exact things at home that the hospital would do, (without the scans)

The feeding tube site is still leaking brown/black goop, and he's vomited it a couple more times today, but overall, he seems to be much better tonight. We are going to closely monitor him tonight and tomorrow, and if there are any concerns at all, we are to either call the 24 hour on call nurse, or go directly to hospital. We were prescribed yet another anti-nauseant tonight, so we'll add it to the arsenal.

I still feel freaked out, the black goop is pretty disturbing (no one has really said what it was, but I think Whitney may have been right) I googled the heck out of it, and could find no mention of feeding tubes leaking that badly. Fingers, toes and eyes crossed that tomorrow finds us all clear.

Chantal

Glad to hear things are going better tonight
We have had a rough day too. In the hospital for the evening. Hope you all have continued success tomorrow.
Cheryl