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CT Scan - update

jen2012
Posts: 1188
Joined: Aug 2012

Just back from the hospital.   We met with the oncologist yesterday because my husband's pain has gotten worse and he can barely walk at this point.   Mostly hip pain that he has thought was a disc issue, as he's had them in the past, but he's popping pills and in so much pain that we have to figure out what is going on.   The oncologist thinks that he may have an abscess or some sort of infection.  The pain started right after his dilation procedure in September - he came home that day with fever and chills and hip pain.  Was better 2 days later, but still had some hip and leg pain.   Oct 1 went for another dilation - again came home with a fever and chills...the pain has gotten worse since then, but the last few days it's been unbearable.   Can't lift his right leg and if someone (aka 2 yr old) bumps into his foot, he gets a shooting pain all the way up his leg.  He needs a wheelchair to get to the radiology dept tonight.

Of course, it's hard for me not to worry about what it is....just hoping it's something easy to fix.

Chelsea71
Posts: 1168
Joined: Sep 2012

I am sorry he is in so much pain.  Try not to worry.  His CEA is low.  An infection sounds likely.  It must seem odd to "regular people"  that we hope for things like infections.  Remember back when an infection was bad news, not good?  Only in this crazy world of cancer.....

 

Ps. This dilation stuff seems odd.  Is it almost over?

Annabelle41415's picture
Annabelle41415
Posts: 4207
Joined: Feb 2009

Sorry that he is going through so much pain and I'm hoping that they can find out the reason why.  He should have test upon test to give you an answer and then they should be able to control the pain some how.  Please keep us informed and I'm hoping that he feels better soon.

Kim

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Varmint5
Posts: 371
Joined: Feb 2012

That sounds very painful. I hope you get answers soon and that it will be something easy to fix. I'm behind on everything and don't really know what you are talking about, the dilation, but even that sounds painful. I hate this disease and all the complications it causes. Thinking of you guys.

Sandy

rls67
Posts: 127
Joined: Nov 2012

I hope you find some answers soon and I hope your husband is pain free. Sending thoughts and prayers to your family.

rls67
Posts: 127
Joined: Nov 2012

I hope you find some answers soon and I hope your husband is pain free. Sending thoughts and prayers to your family.

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Lovekitties
Posts: 2900
Joined: Jan 2010

I apologize if you have explained this before, but what is the " dilation procedure " and what is it supposed to help with?  Is it to help open the artery in the leg?

If the pain is too great, perhaps you might request that he be admitted to hospital for pain management until they can assess the cause and get him doing better.  Living in pain is not good for the body or the mind.

If it were an infection wouldn't they be able to see an elevation in the white blood counts?

Was the CT with contrast? 

Hoping that they quickly come to a determination and get him feeling better soonest.

Marie who loves kitties

jen2012
Posts: 1188
Joined: Aug 2012

Thanks everyone. The dilation is to open a narrowing before surgeon will do the ileostomy reversal. Hes had it done 4 times I think and needs one more. Seems odd to me to Chelsea as I haven't read much about others needing this procedure.

I tried to convince him to get admitted yesterday...he's stubborn. But after a second sleepless night I'm insisting on answers today. He needed a walker to get to the bathroom last night and I had to lift his leg back in bed.

Good point on blood work Marie. I'm not sure...they did tests and cultures Tuesday but I haven't heard results.

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annalexandria
Posts: 2184
Joined: Oct 2011

I think you're going to have to really push for some answers at this point.  It's just not acceptable for him to be in this much pain.

If it's an infection, where and what is it?  They should be able to tell from his bloodwork if an infection is involved, right?  Wouldn't the white blood cells be elevated?  And if it is infection, wouldn't a course of antibiotics be appropriate?

When will you get the CT results?  Depending on what's going on, it may not have answers, but they should still get this read asap.

And I would ask for WAY better pain meds.  When I had a period of significant pain a couple of years ago, I had to move up from Vicodin to Oxycodone.  I wasn't thrilled with that, but I did get some relief, and that's critical.  It's terrible to be in such constant pain.

Hang in there, girl.  You know we've got your back in all this craziness.

Hugs coming your way~AA

jen2012
Posts: 1188
Joined: Aug 2012

Thanks AA - he now has a full collection of drugs...tramadol, percocet, oxycodone and vicodin.   They said he can alternate the oxycodone and vicodin, so that is what he's doing now.  Honestly, I'm a little nervous about him overdosing at this point.  You know when you are up all night but not completely with it - I'm afraid he's going to forget what time he took stuff.    On Tuesday, she suggested he try 3 Advils.  He hasn't taken advil in a decade because an allergist told him not to.  But out of desperation he tried it...it was the most relief he's had!  2 hours later, his bottom lip started swelling. Doctor says no more ibuprofen.  They are also calling in a low dose steroid - I told her we just need to manage the pain at this point, while trying to figure out what it is.  I'm a little disappointed - I was hoping it was an infection that they could clear up. Yea Chelsea, it is strange what we start to hope for.

Just got an email from the nurse - the blood and urine cultures from Tuesday afternoon are still clear, but they will continue to grow them for a week.  The preliminary results from the CT scan are also clear, but the doctor is going to go over and look them over with the radiogist.  I just don't know....my question to them is if the CT will show bone mets, infection, disc issues and enlarged lymph nodes.   Waiting for the answer.  He also has an MRI scheduled for Monday night.

 

jen2012
Posts: 1188
Joined: Aug 2012

I guess the culture grew from the time she emailed me til she called a few minutes ago.   There is an infection.  He has to go for more blood work in an hour to determine if it's the port or the rectal area.  When he gets the dilation, it's done with a sigmoidoscopy and i guess that could cause infection.   I'm thinking it's not the port and I am not too happy with the surgeon right now.  Shouldn't take the oncologist to figure this out when we have talked to him and his staff about this for 2 months now....grrrr!

Annabelle41415's picture
Annabelle41415
Posts: 4207
Joined: Feb 2009

At least you found out that it is an infection and hopefully now they can start to clear it up so he can feel better.  Thanks for the update.

Kim

RobinKaye
Posts: 93
Joined: Nov 2011

My husband has had 4 pre sacral infections.  he will have chills, maybe a fever...maybe not and often excruciating pain. Last infection four weeks ago the pain was so bad I had to call an ambulance as I couldn't get him down the stairs. You will probably be sent to an interventional radiologist, the abscess will need to be drained. I would definitely ask for an infectious disease specialist to determine the proper antibiotics. My husband was on the wrong antibiotic for his first two infections and was not dealt with as aggressively as he should have been. Not a criticism, most doctors know the basics regarding infections but a specialist can get right to the bottom of it and treat accordingly. 

jen2012
Posts: 1188
Joined: Aug 2012

Robin - how did they figure out it was an abscess?  The CT scan didn't show anything - they are supposed to take him for an MRI tonight.  Thanks for the info - I did ask for an infectious disease doc ...wouldn't have thought of that without your post.

RobinKaye
Posts: 93
Joined: Nov 2011

Jim's first infection was the result of an anastomic leak following surgery. when his back pain got so bad a couple weeks after LAR surgery the visiting nurse finally convinced the surgeon that this was not normal post surgical pain. I took him in for a CT and they could see a fluid/gas filled pocket in the pre sacral area, behind the rectum (which for him was now colon), and in front of the sacrum. He went in immediately for the insertion of a drain tube (butt cheek), IV antibiotics, overnight in the hospital and had the drain for 10 weeks. 

The second bout followed the barium enema test for his reversal. All looked fine on the x-rays but in 24 hours he had really bad chills. I had to insist on a CT because his white count was low.  This time it was determined he had a fistula, repeat treatment above and drain for three more months. 

All good again, he had his reversal and within a week the infection was back. It was during this round that an infectious disease specialist was brought in. He changed hs antibiotics, said they were wrong for the various strains of bacteria. The infection cleared but he kept draining, had the drain for five months and realized that nothing was going to heal so had the reversal reversed.  He was left connected in case he wanted to reverse again. 

We thought that would be the end, three months after the reversal Jim started getting really bad chills and a fever off and on. Because a visitor had gotten sick about the same time he did we just figured he was sick. Shouldn't have ignored the symptoms, at this point Jim was septic. This time the infectious doctor kept him in the hospital all week on IV antibiotics, the drain is still in (4weeks so far).  

I can't check back while writing and can't remember the name of the test your husband had but my guess would be that there might have been some damage: small nick or something allowing leakage from the colon to enter the body. We didn't expect this recent infection since that part of his colon isn't even hooked up and working but apparently it is always producing something. 

The first two infections I had to act like the crazy wife and insist on the CT, the third and fourth it was taken much more seriously. When you have a bacterial infection that has progressed to causing this much pain its not something to the taken lightly, sepsis can take over in a matter of hours. I'm also not knocking the IR doctors and others but it was the specialist who was able to determine what he needed. 

Jen, please keep us posted...will be thinking of you. This will be okay.  I think the complications from treatment have been worse than the actual treatment sometimes.

 

Robin

 

jen2012
Posts: 1188
Joined: Aug 2012

Robin - thank you so much for the details.  You guys have been through a lot :(       It sounds like the same thing...but nothing showed up on his CT.   I'm not sure what they are looking for on the MRI, but hopefully we'll have some answers today.

I hope Jim is feeling better!

RobinKaye
Posts: 93
Joined: Nov 2011

Keep pushing, he has an infection...that you know and they do cause a lot of pain. Its coming from somewhere. Do you know what bacteria they found? E-Coli?

Jim has been through a lot but it pales in comparison to so many others, helps me to keep things in perspective, but thank you. 

 

Robin

Chelsea71
Posts: 1168
Joined: Sep 2012

Please feel free to tell me to mind my own business but I think he could do better in terms of the care he's getting.  It seems his doctors aren't too concerned about the reattachment surgery.  This is unfortunate as it seems to be important to him.  I think this is a really good time to get a second opinion.  Perhaps a new team will have more to offer.  I really feel for you, Jen.  I know so well how this all feels.  The worrying, waiting, trying to figure it all out.......and you have the added stress of trying to hold it together for the kids.  At least the pain seems to be under control.  It's a horrible feeling to have your spouse in pain.  You feel so helpless.  Anyways, my money is on the rectal area.  I'm glad it's only an infection.  I'm guessing bone mets has been your fear due to that scare you had when he was diagnosed.  I am happy that this is not the case.  Stay strong.

 

Chelsea

jen2012
Posts: 1188
Joined: Aug 2012

I don't know Chelsea - he likes the doctors.  They were recommended by our friend that is a doc at the same hospital.   I emailed him tonight - I don't like to call in favors, but I'm hoping he'll get involved and make sure they figure this out fast.  He was very helpful that first month in getting scans and things moved to closer dates so it wasn't all dragging out.

I'm so glad the onc suggested admitting him tonight.  I wanted him to stay last night but he is SO stubborn.  He agreed (just for the pain meds I think!) but was still insistent that he was leaving Saturday by 11 to be at an event he was volunteering for.  He can't freaking walk...I wanted to strangle him.   Ugh...I know he doesn't want to let cancer rule his life, but really!  He is in so much pain that it is scary.   In 2 days he's gone from hobbling along, to needing a wheelchair or walker. 

Chelsea71
Posts: 1168
Joined: Sep 2012

Just remember, as quickly as things turned bad, they can turn around just as fast.  I bet he's back to his regular old self within a couple days.   It does seem like a good time to call in a favor.  I didn't realize he was admitted.  He will be home and back on track in no time.  I do admire his attitude!

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

I'm betting he'll be feeling a lot better soon.  He's in the right place to get things taken of (although I'm sure he hates it...my husband used to have to practically drag me in by the hair to get me to the ER).  Your guy's a tough one, that's for sure.  Thank goodness it was an infection and not related to cancer.  Infections suck, but cancer sucks a lot worse!

RobinKaye
Posts: 93
Joined: Nov 2011

Cancer is worse but infections can be just as deadly, come on quicker and kill within days or hours. Often
sepsis in a cancer patient is the actual cause of death, not the cancer. Between 200 and 350K people die each year from
sepsis. They might have had cancer as well or something else which compromised the immune system so a case of the chicken and the egg.
I know you meant well that it's great it's not cancer and I agree but infections don't necessarily suck less in fact they can be much worse.

A woman I know with end stage breast cancer died of sepsis...so what's the cause of death? She may have lived much longer with the cancer, maybe not...

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

from the Colon Club to this forum.  I won't be responding to any of your posts in the future.  If anyone here has any interest in this (probably not!), they can read the Obama Care thread on the CC to understand why I'm not interested in interacting with RobinKaye on this forum, or any other.

Sorry, Jen...didn't mean to momentarily hijack your thread.  Just wanted to nip this personal conflict in the bud.  Hope Mark is feeling better!

PS  As a person with stage 4 cancer, like Jen's husband, I have experienced both a variety of infections (including the peritonitis that almost killed me), as well as having my cancer metastasize.  At least for me, any infection was better than discovering that I had new mets with which to contend.  Hence, my comment.

RobinKaye
Posts: 93
Joined: Nov 2011

I would have made the same comment to anyone, infections are serious.  Note I said that you meant well, and that you were right that cancer was worse. That's all I meant.  It was not meant as an insult, sorry you took it that way.

Sorry Jen...

Lovekitties's picture
Lovekitties
Posts: 2900
Joined: Jan 2010

I hope that they can get that under control soonest.

Hugs to you both,

Marie who loves kitties

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

So sorry Jen.  I'll keep you both in my prayers.

UncleBuddy
Posts: 530
Joined: Aug 2013

Never feel bad about calling in a favor. You gotta do what you gotta do! I keep all of you in my prayers.

Lin

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