New Caregiver - brother rectal cancer

judymw

Wish we weren't part of this group, but here we are.  My younger brother (52) was diagnosed about four months ago.  He had been dealing with bloody stool for six months to a year.  Finally took him for a colonoscopy and was notified right there that he had a very large tumor about 10 cm up and it was about 85% blocking his rectum.  After two MRI's, CT scan, PET scan and blood work we were finally set up with; medical oncologist, radiological oncologist and a surgeon.  He went through 38 days of radiation concurrent with six chemotherapy pills a day at the same time.  He finished chemo and radiation last Friday.  He was doing well up until about the last week of chemo and radiation.  Then he had continuous diarrhea, incredible pain going to the bathroom.  He is normally 145 lbs.  He now has continuous diarrhea with an inability to control his bowels.  We spent Christmas in the emergency room where he was weighed at 100 lbs.  He has been admitted to the hospital.  Our mother found out she had pancreatic cancer and died 8 days later.  This is the first long term illness we have had to deal with.  Any advice would be helpful.  As the only sibling (there are six of us) that is caring for him, even though I have a full-time job as a police officer, I'm exhausted and emotionally on empty. 

Trubrit

Welcome, Judymw

I am sorry you find yourself here as a caregiver.  

Did your brother have surgery before chemo/rad?  With a tumour that big and blocking the rectum, I would have thought they would like to get it out?  I also had a blocked bowel, and surgery was first on the list for me. 

I had an awful time during and after radiation, and while I lost weight, it certainly wasn't as much as your brother. 

As far as bowel control, he will have to find out what works for him as far as foods. It is trial and error, and then of course it can change. 

I kept a food diary - still do - and a BM  diary - still do - that way have been able to figure out what foods are good and what foods are a no go - or make me go go go - 

The need to keep hydrated is real, when the bowels are loose. It is easy to think that water would just make them runnier, but the opposite is true, and the body needs extra fluids, when they are being eliminated at such a rapid rate. 

There is a condition, the name of which I can't remember, even though I have it, where the body becomes familiar with places and things.  Hard for me to explain, so let me tell you how it works for me. 

For the longest time, it seemed, I couldn't leave the house because I was tied to the toilet. So, when I was finally able to get out of the house to walk around the block, I would get to the top of the street and my bowels would let loose. This happened once, twice and on the third time I thought, now wait one darned minute, why does it happen in the exact same spot?' So I read up on it, and it is the body conditioning itself.   That is one thing your brother will have to watch out for. It can keep you tied to the house longer than is needful. 

UPDATE: Right now, the closes I can get to the condition I am talking about is Latchkep Incontinece. 'The mere glance of an object that we relate to an action can jumstart the brain's process to a more urgent need to experience it all subconciously" Ginnie Love - Ph.d  

Have they staged your brother? 

I am so sorry about your mum. What a shock to go so fast after diagnosis. 

Come to us will all your questoins, we are all here to help. 

Tru

abita

I am surprised his team has

I am surprised his team has not addressed this issue with him. Also, his hospital should have a nutrionist who can help him know what to eat. This sounds serious and the experts should really be the ones you ask about this specific issue. I would ask to see the nutritionist. 

mojogirl67

Worth The Time For Checking

My husband had uncontrollable non-stop diarrhea thruout chemo. We found out too late that he had DPD deficiency. There are groups pushing now to have a simple test done before patients start chemo that could save so many lives and misery. DPD deficiency is the body's lack of an enzyme which can not break down the chemo that is given. Toxicity will build up in the body and one of the major symptoms will be the uncontrollable diarrhea. Your brother's issues could be something totally unrelated but it is worth checking I think. Wishing you and your family strength to get thru what you are facing....M

judymw

Trubrit said:

Welcome, Judymw

I am sorry you find yourself here as a caregiver.  

Did your brother have surgery before chemo/rad?  With a tumour that big and blocking the rectum, I would have thought they would like to get it out?  I also had a blocked bowel, and surgery was first on the list for me. 

I had an awful time during and after radiation, and while I lost weight, it certainly wasn't as much as your brother. 

As far as bowel control, he will have to find out what works for him as far as foods. It is trial and error, and then of course it can change. 

I kept a food diary - still do - and a BM  diary - still do - that way have been able to figure out what foods are good and what foods are a no go - or make me go go go - 

The need to keep hydrated is real, when the bowels are loose. It is easy to think that water would just make them runnier, but the opposite is true, and the body needs extra fluids, when they are being eliminated at such a rapid rate. 

There is a condition, the name of which I can't remember, even though I have it, where the body becomes familiar with places and things.  Hard for me to explain, so let me tell you how it works for me. 

For the longest time, it seemed, I couldn't leave the house because I was tied to the toilet. So, when I was finally able to get out of the house to walk around the block, I would get to the top of the street and my bowels would let loose. This happened once, twice and on the third time I thought, now wait one darned minute, why does it happen in the exact same spot?' So I read up on it, and it is the body conditioning itself.   That is one thing your brother will have to watch out for. It can keep you tied to the house longer than is needful. 

UPDATE: Right now, the closes I can get to the condition I am talking about is Latchkep Incontinece. 'The mere glance of an object that we relate to an action can jumstart the brain's process to a more urgent need to experience it all subconciously" Ginnie Love - Ph.d  

Have they staged your brother? 

I am so sorry about your mum. What a shock to go so fast after diagnosis. 

Come to us will all your questoins, we are all here to help. 

Tru

They did not stage him.  I

They did not stage him.  I thought it was weird but since we are new to this I didn't ask.  They wanted to do chemo and radiation first and then have the surgery to remove a portion of the rectum then connecting the two pieces.  He would have a temporary colostomy bag for two to three months while the connection healed and then be reconnected and remove the bag.  That is the plan anyway.  

A nutritionist is supposed to come see him in the hospital.  He does not have a job where he has insurance and hasn't been able to work since this started for obvious reasons.  He is on, I believe the state provided insurance.  I have to say it has been pretty awesome as he hasn't received any bills.  He normally works different construction jobs.

Anyway, I'm at work and just spoke to him on the phone.  He has had a couple nurses assistance who have been really snotty to him regarding him not making it to the toilet and going a little on the floor.  Clearly they have no concept of what he is going through.  That makes me so angry.  If I was there I would be making a formal complaint.  Clearly they are in the wrong business.   Otherwise he has had very kind and compassionate nurses and doctors.

I really applaud all of you who are fighting this battle.  I guess we don't know what we are capable of until we are faced with adversity.

God bless.

Lovekitties

chemo and radiation are cumulative

The effects of these treatments is cumulative so it is not surprising that he is now feeling his worst.

Some things that might help...get a bidet attachment for the toilet....can be gotten at big box store or even on line at Amazon.  This will help to clean area which is super sore with less discomfort.

Many have found help with the BRAT diet to "tighten up" stool.  This stands for bananas, white rice, apple sauce and white bread toast.

Wishing bro best results and you strenght and wisdom as his care giver.

Marie who loves kitties

annie4145

judymw said:

They did not stage him.  I

They did not stage him.  I thought it was weird but since we are new to this I didn't ask.  They wanted to do chemo and radiation first and then have the surgery to remove a portion of the rectum then connecting the two pieces.  He would have a temporary colostomy bag for two to three months while the connection healed and then be reconnected and remove the bag.  That is the plan anyway.  

A nutritionist is supposed to come see him in the hospital.  He does not have a job where he has insurance and hasn't been able to work since this started for obvious reasons.  He is on, I believe the state provided insurance.  I have to say it has been pretty awesome as he hasn't received any bills.  He normally works different construction jobs.

Anyway, I'm at work and just spoke to him on the phone.  He has had a couple nurses assistance who have been really snotty to him regarding him not making it to the toilet and going a little on the floor.  Clearly they have no concept of what he is going through.  That makes me so angry.  If I was there I would be making a formal complaint.  Clearly they are in the wrong business.   Otherwise he has had very kind and compassionate nurses and doctors.

I really applaud all of you who are fighting this battle.  I guess we don't know what we are capable of until we are faced with adversity.

God bless.

The nurses shouldn't give him

The nurses shouldn't give him a hard time. That is crazy.  I also had chemo and radiation and had very bad diarrhea the last week of chemo and was also hospitalized a few days in the last week of radiation.  I literally couldn't make it from the bedroom to the bathroom.  I had to end up wearing diapers for a couple of days.    I found that of the nurses at my hospital, some were great.  Others didn't do anything to go out of their way. . (I used lidocaine before going to the bathroom to help with the pain.) 

Also, it sounds crazy, but I would lay in the bathtub for hours after discharged from the hospital, and if I had to go, I would go and then just drain and refill the tub. It really helped because it didn't burn when I went in the water, but it would burn otherwise.  He just needs to start rebuilding his strenght.  He needs to eat as much as possible.  Also the doctors can increase his anti-diarrhea medicine if they have not done so already. They ended up giving me a strong type (some type of narcotic type derivitve which helped, but tasted terrible.) 

Real Tar Heel

judymw said:

They did not stage him.  I

They did not stage him.  I thought it was weird but since we are new to this I didn't ask.  They wanted to do chemo and radiation first and then have the surgery to remove a portion of the rectum then connecting the two pieces.  He would have a temporary colostomy bag for two to three months while the connection healed and then be reconnected and remove the bag.  That is the plan anyway.  

A nutritionist is supposed to come see him in the hospital.  He does not have a job where he has insurance and hasn't been able to work since this started for obvious reasons.  He is on, I believe the state provided insurance.  I have to say it has been pretty awesome as he hasn't received any bills.  He normally works different construction jobs.

Anyway, I'm at work and just spoke to him on the phone.  He has had a couple nurses assistance who have been really snotty to him regarding him not making it to the toilet and going a little on the floor.  Clearly they have no concept of what he is going through.  That makes me so angry.  If I was there I would be making a formal complaint.  Clearly they are in the wrong business.   Otherwise he has had very kind and compassionate nurses and doctors.

I really applaud all of you who are fighting this battle.  I guess we don't know what we are capable of until we are faced with adversity.

God bless.

My doctors never gave me a

My doctors never gave me a stage (I have CRC with one liver tumor, both removed, currently on chemo). They just told me (after finding unexpectedly that it had spread) that I am oligometastasic. I'm thinking they may believe staging can interfere with treatment in that it can create unecessary stress.