Need help

[llupp]

My 51 yr. old hubby has rectal cancer when they did the c- scan they found a tumor on his left kidney. He has went thru 6 weeks of chemo f5 and radiation fun fun. He has surgery in 3 weeks lar and partial removed of kidney. He will have a temp bag and after recovery 4 months chemo. What do I need to have at home to help with his recovery? What foods? Any ideals on what I can do to help him with all he is going thru. He is very optimistic and says he is going to beat this. Any supplies I need to have at home? I will do anything in my power to him thru this.

[chemo sabe]

Everything will be fine if he pays attention the surgeon. Your husband must pay attention to the instructions when they get set to mark the location for his stoma - it has to be positioned where there is no interference with pants or seat belt. Post-op, they will give a lesson on how to change the bag - pay attention - ask about stoma paste and barrier film - that raw poop will burn his skin big time.

My hospital uses the Coloplast one-piece bags and that is what I used. I used an on-line company for my supplies. The hospital should provide a starter supply kit but you will have to get on with the task of getting those. My colon was resectioned in 2 places, both my ascending and descending colon so my stoma was higher than many and I had to pay attention to my output. I was on a low fiber, low residue diet - pay attention to the surgeons directions.

Your husband must figure out a way carry the bag around. I dealt with it by purchasing long strap type tee shirts and using a part of the tee shirt to create a pouch to carry the bag and tucking in the rest. I wore my shirts out and it was not terribly visible. You will probably need mattress pads because some leaks are inevitable - turn wrong in bed and there will be a leak - maybe more.

The surgeon told me to control my output with Immodium. I asked him to write a prescription for the stuff so my drug coverage would pay. I took upwards of 8 per day - never less than 3 - 4.

Good luck

[Rockovage]

http://www.hhsc.ca/documents/Patient%20 ... ds-trh.pdf

Low residue diet works well with an ileostomy .

[llupp]

Thank you so much for your info. It has been more than I have received from the doctors. We do have a appt. with the nurse on the 16th so I'm sure I will receive info then. But it is nice to get some of the foods in now so I don't have to shop when he comes home. I will get the mattress pads ASAP. I already brought a mini fridge for his room and fill it with fluids and ensure . Again I am grateful to have someone to help me thru this journey. Thank you

[llupp]

Surgery was completed Monday and the doctors say it was a success. They had to take the whole kidney due to bleeding. He has been in a lot of pain and he is trying to adapt to the temp bag. He is a very proud man and doesn't like asking for help. I told him today it was time to take all the help given and feel bless to have it. I feel so much for him and wish I could take his place. Well good night it time to rest so I can get up and do it again , I have been going to the hospital at 5:00 am and staying until 10:00 pm .have a blessed day everyone.

[chemo sabe]

Soon you guys will be home and you may still be overwhelmed. Getting used to the bag was tough for me. Getting used to having poop problems was also hard on me. I did simplify things for my own pride and to avoid asking my wife for help. I had my ileostomy from Feb to Oct of 2012 so I had lots of experience. I changed my bag every 2 - 3 days.

First, I kept the area shaved so bag removal did not hurt.

On change days, I did not eat lunch. The thing with a stoma is that you do not know when you are going to go. Not eating lunch (or just having a light lunch of say soup and crackers) reduced the chances of an eruption while trying to clean up and change.

I would come home from work, prepare the new bag, remove the old bag and get into the shower. Not for my whole body, just to get the stoma area cleaned up and ready for a new bag. I used Ivory soap for this process. So I would get the old glue residue off in the shower.

Getting out, I would immediately cover the stoma with toilet paper which I had pre-staged and put the new bag under my arm to warm it prior to putting it on. Then I applied barrier film to the area around the stoma (otherwise, the poop will burn your skin) and then applied a bit of stoma paste to the new bag.

At that point, I just put the stoma into the bag but did not begin to press it in. For that, I would lay down on the bed, feet still on the floor to flatten out the area thus providing better adhesion without little ruts. I pressed the new bag down starting inside and working in a circular manner using one or two fingers.

To complete, I warmed the area with a hair dryer on low heat and do not stay in one place or you will weaken the bag.

As the behavior of a stoma is unpredictable, this process sounds simple but I found it could be very frustrating. Some days I felt so helpless I wanted to scream. But obviously I got thru it and so can your husband.

Regards

[Kathryn in MN]

A good ostomy nurse is an invaluable part of your care team. If you haven't been assigned one yet, look for one. In the early days you may have a lot of questions and some situations you need help with. They can really give you good guidance and ideas.

[O Stoma Mia]

... We do have an appt. with the nurse on the 16th so I'm sure I will receive info then...

Hi llupp - How did your appointment with the nurse go on the 16th? What kind of information did you receive? Did you receive training on how to fit and change a stoma bag? Who is going to change the stoma bag once your husband is discharged from the hospital?

Here is a link to a general ileostomy care guide. If you read this guide, you may find answers to some of your questions.

http://www.drugs.com/cg/ileostomy-care.html?printable=1

What type of stoma bag are they recommending for your husband (one-piece or two-piece)? What brand? Do you have information on where to buy supplies when you need them?

[llupp]

The appt was great very informative. As far as you going to change it we both are we are a team. He had his surgery. monday doctors say it was a success. They had to take the whole kidney, the pathogy said it was t1 and contain. The surgeon said if he was going to have kidney cancer this was the one to have very low reoccurrence. The rectal surgeon I'm alittle confused he said the chemo and radiation did the trick he took out the area and he has no cancer now. As far as he is concern he doesn't need chemo. The onco doctor say hell no 3-4 months for 48 hrs on port every 2 weeks to catch any left over cancer. Hubby is in a lot of pain and the bag has hit emotionally. But we will get thru it. I just brought him home the trip was alittle hard on him. We have a nurse coming every 2 days for 3 weeks to train and help us. I will get copies of the pathogy next week when we go into the doctors office. Thank everyone for your help and I am sure we will need more.

[Cj51]

I agree with Kathryn that your WOCN (Wound Ostomy Care Nurse) is absolutely an invaluable part of your team. She or he will help you pick the right appliance and teach you how to manage it. If things don't go smoothly for you, then ask your nurse for help and advice. DO NOT WAIT--if you are having trouble with leaks or skin issues, do not fuddle around until your skin is raw and sore--call immediately and get help. I speak from experience, too proud to admit I couldn't figure it out myself and I ended up with very sore and itchy skin for my efforts. My WOCN had products I hadn't even heard of and we cleared it right up. Don't get too bogged down in the details right now--there's no way to predict whether he'll have any problems, and if so what they will be. Let your nurse teach you, and if the products that they give you at the hospital don't work for you, then get others. All of the companies that make wafers and bags will send you free samples to try. I tried a few and picked one that I liked--a two piece worked for me. Your hubby might prefer a one piece. I liked the two because I could "burp" it if it filled with gas. You'll learn what works for you as you go along, and since the shape and size of his stoma will change as he heals, what works might change. Call around and get samples from the companies, you'll see what I mean.

I'd encourage him to learn to manage his stoma and the bag changes, etc. If he can it will go a long way towards restoring his sense of independence and control over the situation. Nobody likes to feel like a victim. If he needs help, he needs help, but if he doesn't, let him do it. Often, with people poking and looking at very private places, we just long to take back this very basic bodily function and make it private again.

Best of luck to you both,
Cj

[O Stoma Mia]

... We have a nurse coming every 2 days for 3 weeks to train and help us...

Hi llupp - Here are two things you might keep in mind when you meet with the ostomy nurse this week:

1. Stoma dermatitis - When the stoma wafer is changed, be sure to check if there is any redness of the skin underneath, and exactly where this is occurring. It might be due to an allergic reaction to the adhesive on the wafer, or it might be due to an allergic reaction to the barrier paste used, or to the spray or adhesive wipes used to clean the skin. If the shape of the red area of skin is the same as that of the stoma wafer, then this suggests that the wafer itself is causing the problem and needs to be changed to a different brand. If the red area is where the barrier paste was put, then it may be that the barrier paste is the problem. If the irritation is a small ring just around the stoma, then the problem may be that some stool and fecal matter leaked underneath the wafer. Discussion of this problem can be viewed in the following thread:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=18634

2. Parastomal Hernia - If the suture around the stoma is not allowed to heal normally and completely, a hernia can develop. This is when the incision splits open or becomes wider than necessary. This can occur if the patient tries to lift heavy items while the wound is still healing, or when the patient tries to push or pull something with strong force, thereby causing pressure on the abdominal muscles and a possible split at the incision site. This kind of situation should be avoided at all cost. During the recovery period, the patient must allow the wound to heal without putting any torque or pressure on the wound site. This problem is discussed in the following thread:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=10771

[llupp]

We went with a osteomy traveling nurse to come to the house. So far so go he drains his bag with a little assist. I do have a question should I wait until the stoma swelling goes down to order samples so he can try different bags. Right now he is going with the 2 piece he seems like it as much as your going to like something like this. The nurse t the hospital who had a bag recommended the 2 piece for him. He hates it but if it means living we can deal with it. Yesterday was his first day home and he had a lot of pain once we got that under control he slept thru the night. I can't thank everyone enough for all the info. All the info you gave us prepared us so we weren't in shock. I really feel for anyone who does not have the time to mentally prepared for this life changing event and just wakes up with a bag. Tomorrow will be our first change at home so wish us luck. Have a great day one and all.

[dianetavegia]

Quick question... Was the tumor on the kidney confirmed as a colon cancer spread? If so, your husband did NOT have 'kidney cancer' but a met to the kidney. It would be very rare for him to be dx'd with two primaries at the same time but you signature actually says that. Treatment would be different for 2 separate cancers.

YES..... he still needs chemo because of microscopic cells. The previous chemo shrunk the cancer down so small that the surgeon couldn't see it. That doesn't mean it wasn't somewhere in his blood or lymph system. Better safe than sorry!

[O Stoma Mia]

...they did the c- scan they found a tumor on his left kidney. He went thru 6 weeks of chemo F5U and radiation fun fun. He [had surgery last week] LAR and [removal of] one kidney. He will have a temp bag and after recovery 4 months chemo

... The rectal surgeon I'm a little confused he said the chemo and radiation did the trick he took out the area and he has no cancer now. As far as he is concerned he doesn't need chemo. The onco doctor says hell no 3-4 months for 48 hrs on port every 2 weeks to catch any left over cancer... I will get copies of the pathology next week when we go into the doctors office.

Hi llupp - If you will be seeing the doctor in the next few days, you should go to the doctor's office with a list of questions to be answered. (By the way, which doctor will you be seeing, the rectal surgeon or the oncologist, or both?) Be sure to bring a notebook and pencil, with your questions already written out so that you don't forget to ask them.

Pathology questions. Some of your questions should pertain to the original CT-scan, the pathology report and the precise diagnosis or tumor staging code that they came up with after surgery. What was your husband's CEA cancer marker score at the time of the surgery? What was the size of each tumor, T1, T2, T3, or T4 (for both the kidney tumor and the rectal tumor)? How many lymph nodes were taken out, and of these, how many were found to be cancerous? Was the cancer of the kidney a metastatic cancer originating in the rectal tumor, or was it a primary cancer of its own? (dianetavegia makes a good point here) Your goal here should be to obtain a clear statement of your husband's full diagnosis as it was at the time of the surgery. For example, did the CT scan also confirm that there are no visible metastatic tumors in the liver or in the lungs that need to be taken care of?

Chemotherapy questions. Additional questions to ask should pertain to the exact treatment regimen planned for the future. From what you have said so far (see above), it looks like your husband has already had 6 weeks of what they call neo-adjuvant chemotherapy, with a plan now for 4 months of what they call adjuvant chemotherapy to start a month or so after your husband's surgery of last week. The up-coming months of chemotherapy are not really optional, in my opinion; they are required in order to take care of any cancerous cells or lesions scattered about during surgery and too small at this point to be detected by a CT scan (also see dianetavegia's earlier comments). It's important to get rid of these microscopic cancerous cells/tissues before they grow and spread. The purpose of the earlier 6 weeks of chemo/rad therapy, in my opinion, was mainly to shrink the existing tumors so that they would be easier to remove by surgery, not to eliminate or cure the cancer completely. Your husband will still need to do the additional chemotherapy to "catch any left over cancer", as you have already stated. You should ask which drug combination they are planning to use in the up-coming 4 months of chemo. You could also ask when the new chemo sessions would start, because they would require good kidney functioning, and it might be a while before your husband's kidney function reaches the required level.

[llupp]

My husband had 2 primary at the same same time. The kidney cancer pathology came back as rcc stage 1 . The pet scan and c- scan show no lung or other organs involvement. The kidney surgeon wants frequent scans but feels with taking the whole kidney he got it all. The rectal surgeon says he could not stage it because of the chemo and radiation but feels it was a stage 3 he said the pathology came back no cancer . I see the rectal surgeon on Tues. and the kidney surgeon on Weds and will get hard copies of the pathology reports. I have talk to the oncologist on the phone and see him in five weeks to go over everything and start chemo. My hubby and I talk we have went this far No way will we forgo chemo at this point would rather do everything possible as the onco suggest. Thank everyone again for all your help. I wish that the rectal surgeon had the time to talk alittle more about the report he was always on the run in the hospital. The kidney doctor came in sat for about 1/2 hour and when over everything and living with one kidney. On a side note I asked my hubby joking if he grew up on love canal or some toxic waste site because of having 2 primaries, he didn't find it funny.

Hitherto nurse made her first visit today she was very informative. She really help my husband become more sure of his self with it. She explain more on diet and restrictions so not to get a hernia. I am really glad she coming 3 times a week for 2 weeks and then 2 a week for 2 weeks then we are on our own.