Blockage

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Blockage

Postby Bev G » Tue May 16, 2017 12:16 pm

Grouseman, so good to hear your wife is on the mend. I hope she continues to improve rapidly.

Best warm wishes to you both!

bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Blockage

Postby CRguy » Tue May 16, 2017 12:21 pm

Ditto to what Bev says !

Good to hear things are better for her
Cheers buddy
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DarknessEmbraced
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Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Blockage

Postby DarknessEmbraced » Tue May 16, 2017 12:40 pm

I'm so glad your wife is doing much better!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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GrouseMan
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Location: SE Michigan USA

Re: Blockage

Postby GrouseMan » Tue May 16, 2017 5:10 pm

Had a set back today. She woke up this morning with major nausea. All the chemo she has done with little to none, and the blockage that also didn't cause it and now after finding relief fromher blockage she gets nausea big time. First time for everything I guess. Apparently her colon hasn't woken up yet after the surgery according to her nurse, and she is throwing up green bile again. Same reason I brought her to the ER stuff backing up I suppose. At that time she didn't have any nausea. Now its really bad. I am at the hospital and she is resting/sleeping. Because of her being in bed at an angle that makes her abdomen comfortable, her back is bothering her much more. She needs to walk but her back pain prevents her from doing much, especially swapping back and forth between oral, and IV meds. She hasn't ben able to get out in front of the back pain because of throwing up the oral meds. So this evening they switch back to IV. She needs to walk to get that colon attached to her stoma moving again! WAKE the FUCK UP already! (WTFUA) Sorry.... Needed to swear there for a min at her damn colon.

I hadn't heard from her all day - I expected she would text me at home as the day went on because I expected her to make rude jokes about the ostomy and the class on care etc she was suppose to start today. When she never returned my text I headed to the hospital again only to see her in her chair when I arrived throwing up some more. Nice. But Ive seen her phone home on the big white phone plenty of times before this journey started in those rare instances where she over indulged Doesn't help her I guess that the guy across the hall is hacking up and spitting goobers!

Oh well - hopefully she get over this soon, and can also get mobile.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Blockage

Postby jhocno197 » Tue May 16, 2017 6:58 pm

I am sorry she is having such a rough time today. Hopefully tomorrow will be better.

Swearing at the damn colon is ok. :)
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Blockage

Postby Lee » Thu May 18, 2017 7:52 pm

How's your wife doing? Better I hope. Hoping she's home surrounded by family, friends and love,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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GrouseMan
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Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Blockage

Postby GrouseMan » Thu May 18, 2017 11:57 pm

Nope she is still in the hospital. Continued back pain (apparently arthritis) that is actually getting worse It seems to me, is preventing her from being mobile which she needs to help wake up what's left of her colon, and stomach. Colostomy is healing fine, and they removed the epidural today which resulted in some more discomfort. But they can't seem to get a handle on the back pain. Doesn't help that my wife wont let them know when she feels its time for more pain meds. She is still throwing up and has nausea and not able to keep anything down really. She has never had this kind of nausea before. So she is on I believe three different nausea meds. The nausea would probably go away if she would just get up and get mobile. I basically yelled at her this evening before I left telling her to use that damn call button, and not wait for the nurse to just come in. She needs to call them for the pain meds and make sure they don't stretch out to far and she then has to start over to get in front of it again. Her nurse has 5 other patients to look after, and of course may not be able to keep an exact schedule, but by damn if she uses that button someone will come and see that she gets what she needs. I am getting pretty pissed off at everyone. I can't be at the hospital all day 24 hours we have too many animals to take care of and I have to at least try and work some (I work from home). So I usually go over late afternoon and spend about 3 to 4 hours with her. But seldom do doctors show up while I am there. I need to get there at the ass crack of dawn I guess because that seems when they come around. Today has been a week since I took her to the ER. Monday they did the surgery and Tuesday she was feeling really good. But the last two days have not been good at all. In fact - I think the lack of sleep from the nausea and throwing up. Drastic drop in weight over the last two months and the pain meds is making her some what delusional. We were chatting with the nurse and my wife out and out started to make things up that she thought was true - like we lived on a lake - we don't but a nearby street is named after a near by lake. That we had a bass boat that was blown away by a tornado. We had talked about tornado earlier in the conversation but the boat conversion was not related. Well we did have a bass boat but we sold it. It was never blown away by a tornado trailer and all, as she said.

I want to rant and rave about this- its been her stubbornness that has been the cause of most everything concerning this cancer. Desire not to go through the colonoscopy at 50 and her doctor agreeing that since she was so healthy and athletic she didn't need to worry about it - sound familiar to anyone? Then when the symptoms get bad she tries to compensate by dietary changes which is what clued me in something was wrong. GP still thought that it was probably diverticulitis, not colon cancer! I was the one that finally talked her into seeing a GI and getting the colonoscopy just to be sure. Ya - we became sure all right Stage IV spread to liver and spleen after CT scans. She did bounce back from the laparoscopic resection, but again that was because of her athletic build. Surgeon wished all his patients were as fit as she was. Three and a half years of continuous chemo with very little in the way of side effects really. Almost no nausea at all. Now the blockage leading to the trip to the ER- it probably started back in January or perhaps earlier still when her appetite started to flag. She kept complaining that she felt full all the time, and I kept telling her to talk to her doctors about it. But since she had bowl movements, and no one put two and two together and thought about the possibility of a blockage due to tumor growth in her colon again no one though to check, and do a scope. Everyone just assumed it would be caught with CT scans. Apparently not. She told the oncologist and her GP when the fullness feelings started. No one suggested she have another scope. Her back pain started probably last October - but they couldn't link that at all to anything except her new GP seem to believe it was arthritis based on an MRI. No sign of bone mets. So she continued to soldier on. Now she is doing the same thing in the hospital. I am getting mad as hell over all this.

Sorry about the rant.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Blockage

Postby peanut_8 » Fri May 19, 2017 12:43 am

I'm so sorry for everything that you and your wife are going through. I can relate to her stubbornness, and also feel your pain.

Please don't apologize for ranting. That's what we're here for. :(

Really hoping things get better for you two soon.

peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Blockage

Postby stu » Fri May 19, 2017 1:41 am

After the larger liver resection my mum had I still have etched in my brain standing at the bottom of her bed , isolated in swirling thoughts , unable to process her pain . I honestly thought oh my I have fought to get her gutted like a fish , what have I done!!! She was sensitive to morphine so made her really sick on post op pain meds with her sore abdomen too. Is her potassium ok? There is no polite way of saying this but my mum spoke a lot of rubbish post op. It was just the pain meds and my husband is able to talk me through from his work experience.
The talking complete nonsense freaked me out but it was a good thing too as she remembers nothing of those awful days I don't think I will forget.
I am glad your talking here . It's tough and you need the support. It is amazing how much difference a few days can make . Hold on and hoping today gives you both some comfort. I was glad I never met some of the medical staff as my mum kept telling them her daughter would not allow that. Pain meds , walking equipment!!!! So not true.
Take special care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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LPL
Posts: 651
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Location: Europe

Re: Blockage

Postby LPL » Fri May 19, 2017 6:21 am

GrouseMan said:
Continued back pain (apparently arthritis) that is actually getting worse it seems to me, is preventing her from being mobile which she needs to help wake up what's left of her colon, and stomach.

Just some thoughts/questions from me who is not diagnosed with CRC but who have Big back pain at the moment (probably arthritis).
1. "getting worse" - could that maybe be caused by the hospital bed? Or does your hospital have these fantastic beds that adjust to your body? (I had the 'pleasure' of experience one of those at SFGH after I had an accident in San Francisco). When my DH has had surgeries (not all being abdominal) and spent time in a hospital bed, he has complained a lot about back pain, blaming the hospital bed - it has taken a week at home in his own bed before his back is OK again.
2. These days now as my back is giving me bad pain - when I wake up in the morning, I have to force myself to endure the pain getting worse as I get out of bed. Because I know that after I have walked around, supported by a 'walking-stick', for a few minutes my back pain will slowly get better.
3. Can your wife's back pain be a spasm? (Pain all the time no matter what you do). I experienced that once and it was probably caused by low magnesium.

Please forgive me if these are stupid comments.
Just trying to think of some things that is preventing your wife being mobile.
All the best to you !
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Blockage

Postby MissMolly » Fri May 19, 2017 10:28 am

Grousman:
I would suggest that you talk with your wife's medical team and have them write an order for a physical therapy evaluation.

A physical therapist can help your wife regain her functional mobility (ambulation, balance and coordination) as well as weigh-in on her debilitating low back pain. It may be that the cancer, at a microscopic level, is causing lumbar nerve root irritation and pain.

A therapist can also help reduce the burdens that you are carrying in trying to motivate your wife to get out of bed.

There are many factors that impact a patient's recovery after surgery. I do not think that you wife is willfully choosing not to engage. I suspect that there are subterranean and unknown factors that are impacting her thinking and behaviors.

I was a physical therapist before chronic ill-health nabbed me. A good physical therapist can do wonders for a patient's mind, body, and soul. A referral for a physical therapist to see your wife would be a worthwhile ancillary clinician to add to your wife's team.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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juliej
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Re: Blockage

Postby juliej » Fri May 19, 2017 4:02 pm

GrouseMan, I totally understand your frustration. I'm one of those patients who are reluctant to call for more pain meds. :roll: Eventually I got a "good talking to" by the male nurse on my ward who explained about the importance of getting ahead of the pain and also how the body simply cannot heal while it's in severe pain.

Hospital beds seem to exacerbate any kind of back pain. You'd think they would cradle the body, but as far as I can tell they are engineered to make it easier to deal with the patient, not for the patient's comfort. You might see if they can give her Tramadol. It works very well on muscle pain.

You're right about having to get there at the "ass crack of dawn" to see the docs. Mine came around about 6 am. They return in the late afternoon, but the timing varies. Sometimes there was yet another visit, very late in the evening around 9 pm. Call the floor and ask the head nurse what time your wife's docs do their rounds.

Keeping your wife in my thoughts and hoping everything starts heading in a positive direction soon!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Blockage

Postby jhocno197 » Mon May 22, 2017 8:39 pm

Grouseman, just checking to see how you both are doing.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Blockage

Postby GrouseMan » Mon May 22, 2017 9:45 pm

LPL wrote:Just some thoughts/questions from me who is not diagnosed with CRC but who have Big back pain at the moment (probably arthritis).
1. "getting worse" - could that maybe be caused by the hospital bed? Or does your hospital have these fantastic beds that adjust to your body? (I had the 'pleasure' of experience one of those at SFGH after I had an accident in San Francisco). When my DH has had surgeries (not all being abdominal) and spent time in a hospital bed, he has complained a lot about back pain, blaming the hospital bed - it has taken a week at home in his own bed before his back is OK again.
2. These days now as my back is giving me bad pain - when I wake up in the morning, I have to force myself to endure the pain getting worse as I get out of bed. Because I know that after I have walked around, supported by a 'walking-stick', for a few minutes my back pain will slowly get better.
3. Can your wife's back pain be a spasm? (Pain all the time no matter what you do). I experienced that once and it was probably caused by low magnesium.



Getting worse because its a standard hospital bed, she hasn't been very mobile. And since activity actually helps to strengthen ones back, and lessen arthritic pain somewhat with the help of good anti-inflammatory meds being immobile in a hospital bed nauseous isn't helping. Your point #2 is a case in point. Its possible a spasm might be partially the cause but they now have her back pain management dialed in somewhat with a fentanyl patch. It's helped quite a bit. She thinks a spasm might be happening from the muscles weak as they are, are sore from the gag reflex and muscles used to throw up with.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

User avatar
GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Blockage

Postby GrouseMan » Mon May 22, 2017 10:49 pm

OK here is todays update. In less than 24 hours she has now thrown up 6 liters of green bile liquid. 3 Liters at about 10:45 pm last night and again at about 3:15 pm to day. Before she was throwing up small amounts but with the extreme numbers of anti nausea medication (3 to 4) and amounts max dose I think they are giving to suppress nausea she only throws up now when she is so full that she can't suppress the urge to throw up any more. Then she immediately feels fine, no nausea at all. What always precedes an episode is some acid reflux, that can be triggered by drinking water etc. She is usually able to hold down what little she eats, and that seems to pass into her colostomy bag. When she throws up there is nothing in it but green liquid. No solids at all. I suspect its more like GRED she is experiencing. And all the anti nausea drugs are doing is suppressing the gag reflex nothing more until she can't suppress it any further because she is full. Both times it was the same large volume - 3 liters each time.

For the first time in a in maybe a week I have actually managed to be in her room when a doctor has come by. A Surgeon this evening before I was about to set off for home (not even my wife's surgeon, or I suspect one of his residents or partners.) He suggested that we get her nausea under control so she isn't throwing up as much (its now down to twice a day ha ha ha...) and send her home and let her sit around on the couch feeling miserable all day or doped to the gills and out of it receiving IV fluids so she doesn't get dehydrated. Idea being she would be more comfortable at home puking her guts out with a nurse visiting her once a day for a few mins. If my wife wasn't there and I knowing I could have been prosecuted for assault I might have decked him right then and there. They are treating only the symptom not the cause. He says well if its not nausea causing her to throw up it must be mechanical - stomach or colon twisting and un-twisting and any fix would be very dangerous surgery (which I agree in the state she is in now it most likely would be). But I am not convinced this could be the case as she is eliminating into her colostomy bag just fine, though not a lot as she isn't eating a lot. Her blood work looks fine. Temperature is fine. BP and heart rate is a little elevated since this all started, but not as one would expect with a twisted stomach or colon, backing up 3 liters of watery bile. I finally convinced an older nurse that they need to look more closely at how this comes on and not discount the acid reflux preceding the event, and pressure in her lower left abdomen as the fluid starts to build. The night before the nurse wanted to test my idea that it was excess acid by giving my wife some tums. Those came up pretty quick about 2.5 to three hours before the big 3 liter event. But tums usually will not do much for real acid reflux caused by GERD anyway.

They had been giving her IV Atavan which made her loopy! Put her on the edge where she was having sort of wakeful dreams. She get a dose of that and no way I was getting her to get out of bed to try and walk the halls. Today the nurse gave her oral Atavan after the latest 3 liters of green liquid vomit. For a change she stayed alert. I had to leave to come home and take care of the dogs, so I don't know the outcome of this. But the nurse did say - Orally - this drug does tend to sooth the stomach better than IV drug, that goes to work directly on the brain. My wife was able to keep it down and not throw it up so that is something. She did eat a few forks full or chicken, some mashed potatoes and soft cooked carrots. Some strawberry Ensure that she detests (would rather have chocolate or vanilla), some pudding and some left over mint chocolate chip ice-cream I went to Stone Cold Creamery for yesterday (the nurse last night put the cup in a biohazard bag, put my wife's name on it and stuck it in the freezer for her when she wanted the rest). My wife was very amused when I retrieved it. Before I left we walk the halls and made two circuits of them before I left. She was reading the papers as I departed. I've not heard from her this evening. She is likely asleep by now.

My main problem is I can't be there all the time at the hospital, and its hit or miss if I see an actual doctor, especially one that has done more than just read her file. Not a one of them has spent any time actually observing her, examining her before after one of these episodes. No ones sampled what she is throwing up taken pictures or run any tests on it. All they do is measure its volume. First thing I would do is stick a pH meter in in. Another thing is maybe look for some cells. Or something unusual in it. Nurses have seen it but I doubt any of the doctors. The ones I talked to this evening thought it was what she had taken in - I assured them she had not taken in 3 liters of fluids that afternoon and certainly not 6 liter in less that 24 hours - I thought they had measured what she was taking in vers what was coming out but apparently math wasn't his guys strength! I guess I am biased because I was a Laboratory instructor at a university at one time and I had a lot of wishfull thinking potential med students in the classes I taught. I have to say if their performance in freshman chemistry and organic chemistry was any indication I would not want them as my doctors!

Oh well - enough bitching.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017


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