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just dx and have questions

bjohnson
Posts: 13
Joined: Jan 2007

I was just told today that I will have to have surgery to remove rectum mass of 2cm. Since it it within 5cm of the anal line?? the colon cannot be connected so there will have to be a colostomy. This was not the news I wanted to hear. What can I expect as for as time in hospital for surgery, taking care of the stoma and maintainence of the bag? Needless to say, I am depressed and am looking for support. I have a very loving wife of 45 years with some med problems and hate to see her faced with dealing with me in this condition. I am also still working and would like to keep on for at least 2 more years and maybe then consider retirement. Is this going to be possible? I have been surfing the web for info and found this site. Have read some of the discussions and you all seem to be knowledgble and very caring. I would appreciate any advise.
thanks and may GOD bless and keep you.
BJ

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Good morning.

You will quickly learn that this is a great place for support. Everyone who posts a message is affected by this dreadful disease either through caring for someone else, or going through it themselves. Having a million questions is probably an understatement! Initially, you will have so much information thrown at you from your doctors and medical professionals that it may seem overwhelming. Be careful to not try to use information obtained through the internet as 100% accurate. You can go to 100 different web sites and get 100 different opinions.

You can continue to work and maintain your "normal" lifestyle. Yes, things may be altered with regards to how you view your body with a colostomy, but tons of people live everyday with it. I had a temporary ileostomy which was able to be reversed. And as odd as it sounds, I almost missed having it when it was reversed. You will find that laughter will carry you through the rough times. Although your body will not be the same, cancer cannot touch your spirit and drive to survive. Each day further from your original diagnosis, you will feel better. Fear turns into power and education.

You will meet folks on here diagnosed everywhere from 10 minutes ago to 10 years ago. Each of us will be able to offer you support every step of the way. Check out the web pages of some of the common names you see in these discussion threads. It will give you a better sense that we are all here for you.

Keep in touch, and stay strong,

Stacy

bjohnson
Posts: 13
Joined: Jan 2007

Thanks for the reply. I do appreciate the positive that you express. This just seems to be a dreadful life changing event. Since I am new to this type of communicating, how can we get in a chat room with only cr survivors.

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

The chat rooms accommodate every form of cancer, and every level of relationship (whether it be survivor, actively getting treatment, caregivers, grieving family members), and at times is overwhelming. I used to be on there often, but sometimes the conversation gets a little too far off the mark, so I only occasionally pop in. If you'd like, let me know when you plan on being there, and I can roust up a group of Colon Cancer folks to be there the same time. Evenings are probably most convenient for most.

Remain positive! YOU CAN GET THROUGH THIS!!

Stacy

fedester
Posts: 757
Joined: Jul 2004

hi bj,
sorry to hear you have the beast.
first i would get another opinion, as far as the colostomy bag. many on this site have a perm or had a temp bag myself included.
you will learn to care for it, you will need a good stoma nurse, they are usually connected with the hospital. my sister in law just had anal cancer and had radiation and chemo and it has shrunk. now she will be going for surgery to remove tumor and she will need no bag. alot of times the drs don't want to do more than they have to. that is why she got a second opinion.
where are you located.
be well
never,ever give up!!!
bruce

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi BJ: I'm so sorry you have to be here. You already seem to have a lot on your plate. I have had a temporary colostomy which morphed into an iliestomy. It is something you need to get used to, but I joke that instead of using my back end I now use my front end. I live in Canada, but I'm sure the process is the same in the States. I had a nurse come in for several weeks to teach me how to clean and replace the bag. I don't find it onerous at all, and eventually, you get into a routine where you know exactly when you are going to have a movement, what happens when you eat what, etc. Once you get to this type of comfort, going to work should not be a problem. There is also a website UOAA which deals entirely with ostomies. I found this site much more helpful due to the cancer.

I think the wonderful news I see in your post is that it has not spread, correct? You'll probably be able to work as LONG as you want.

Monica

bjohnson
Posts: 13
Joined: Jan 2007

Hi, Monica,I am beginning to feel the support getting stronger because of the wonderful responses to my fleece that i put out there. This is so good to be able to talk with people that have had the experience. I have worked all of my life and realize the importance of experience when dealing with an unkown job or subject. So far the results have shown no spread, it is still contained inside the colon. I am scheduled for another scope with ultasound next wed. to help determine the depth into the wall. When does the oncologist come in? This has all been done with the surgeon so far. How long can I wait? This waiting is beginning to make me very nervous.
BJ

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi BJ: I'm stage IV, so I was sent to the onc right after surgery. I know that there are different protocols for different stages, such as whether or not chemo is necessary. I would only suggest that you at least speak to an oncologist to get all your options. I have a friend whose brother in law, 60 years old, was at the same stage as you. He was told by his surgeon he did not need chemo, however, when he obtained a second opinion, chemo was definitely advised as a preventative measure. Whether you choose that route or not is entirely up to you, but at least you can be well informed and make your own decisions. I pray that the rest of your results show no spread. God bless. Monica

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi BJ,

I want to say I'm glad you found us even though it is under these circumstances. I'm a stage 3 colon cancer survivor dx Dec 2005. This is a great place to ask questions, vent, and find support. We are the "been there, done that" crowd and are always glad to help. There are quite a few on this board still having an active life style even after getting a bag. Another great site to see this is the colon cancer calendar. http://www.colonclub.com/colondar.html
There is one model that opted for a colostomy bag because his life was so compromised by bowel issues and his cancer. HUGS and know that we are here to help. I'm sure others that have bags will chime in soon.

Lisa F.

66Rose
Posts: 58
Joined: Dec 2006

BJ,

My greatest fear was waking up with an ostomy and I did, it is an ileostomy though, somewhat different then a colostomy.

However, I have gotten used to it and it is supposed to be Temp, as soon as my rectum heals.

But my life line when I first got it was this site:
http://www.uoaa.org/forum/index.php

They are SO AWESOME there and everyone there has had or has an ostomy, I highly recommend you go there and introduce yourself and the suuport you will get is amazing!

Be patient with yourself and may I suggest that when you get home from the hospital with it, have help changeing the wafers, I have or should had a weak stomach, over that now, but I nearly fainted the first few times I had to change my wafer, just have someone there in case this happens to you, it is very emotional at first, but it gets easier.

If you have other questions before or after you can e-mail me, I would love to help!

God Bless,

Liz
www.runlizrun.com

changing
Posts: 135
Joined: Oct 2006

Hi BJ, Welcome! I'm sure others who have a similar DX will be on later today to help you. Right now I'm the caregiver as my spouse has stage 3c colon ca. The only advise I could give you now is, to try and seek out an oncologist. We've found the Cancer Centers have surgeons who are oncologist.We live in NJ and go up to Fox Chase Cancer Center in PA. Where do you live? My husband went to a surgeon first and had the surgery without seeing the onc first....later we found out that the onc would have done things a bit different.....small things like more scans and blood tests. Just food for thought. I enjoy the way you express your self...like the "fleece" and belief in God ....I'll be praying you'll have wisdom as you start this new journey. Remember you're not alone and I do hope your wife can come on-line when she's ready. We can laugh,and pray toegther and share the jitters at times. Take care we'll be looking for you, Ginny

bjohnson
Posts: 13
Joined: Jan 2007

To changing, Thanks so much for your thoughtful reply. I am in the Land of Opportunity, The Natural State, the home of one of our US presidents-Arkansas, not far from Memphis, TN. I may still consider going there for another opinion, although we have a very good regional med center only 15 miles away with good surgical groups. This is where I'm going now. Memphis would be a little far. Distance makes it so difficult for the families. Although they say we need to do whatever it takes to beat this thing. The surgeon has ordered another scope with ultra sound to see the depth of the tumor. thank goodness it has not yet spread.
BJ

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi,

It sounds like you have a similar problem as to what I had. My rectal cancer was within 5 cm also. My surgeon thought we could avoid the colostomy. I saw an oncologist and had chemo combined with radiation. The tumor shrunk greatly and 2 months later I had just a local excision. There were no cancer cells in the specimen. However 8 months later I had a recurrance and in April 2006 had an AP resection with a permanent colostomy. I was in the hospital 6 days. Walking after surgery is most important. I bought an IPOD prior to surgery and walked up and down the halls listening (and in my mind dancing) to the music. I was out of work about a month after that surgery. I did do 9 cycles of chemo after, stopped due to side effects. That chemo was recommended because I had the previous radiation and they didn't think they could accurately stage me.

About the colostomy. I dreaded it too. However it has not been a problem and if I had known how easy it is to take care of I would have pressed for it the first time. The hardest part is the first bags you get are transparent and that is depressing. However I quickly changed to the ones with an opaque cover and they are not bad. I wear normal clothes and have no problem taking care of it. You also want to make sure the bag is vented so it doesn't balloon up. Having a good stoma nurse is very important. My surgeon said he would place the stoma where the nurse marked it. It is about level with my belly button but if it is too low it can be a problem with keeping the seal. For other tips on the colostomy feel free to email me on this site. One nice benefit is that I don't have the urgency that was present before surgery and don't always have to know where the bathroom is. You do have to watch how much you lift or you can get a hernia in the stoma area. I chose to ignore that advice and have developed a small hernia and have just ordered a support belt. However the grandchildren are 30-40 lbs so I still want to pick them up.

I highly recommend that you consult with an oncologist before having your surgery.

Good luck and feel free to ask more questions.

Dick

bjohnson
Posts: 13
Joined: Jan 2007

Thanks vinny3, The info from experience is just what i am looking for. The surgeon says he does not want to take a chance on recurrence due to the location so therfore insists on th AP and the colostomy. He thinks also no chemo will be needed, but seems like most have had chemo first then the surgery. What about diet? Boy i do love to eat good food. As of late, I have been more into more fruit and fiber, but this seems to be too late. Should have been smarter years ago. I am cutting back on amounts of the good stuff, need to lose a few pounds. Back to the more serious. Are you still working? I had no plans of retiring early, BUT. How long do you need the nurse for the stoma/Can you take care of it yourself after a while? Sorry, I didnt realize I was asking so many questions. I cant seem to stop them.

BJ

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I'm working fulltime, it doesn't interfere. It had no effect on the sexual functioning. No diet changes have been necessary for the colostomy but I have been trying to eat a better diet because of the cancer. I would remmend talking to the oncologist about chemo after. It may depend upon your stage. If I had it to do over I would have the surgery first and see what stage I was at. It depends upon characteristics of the tumor, how deep, and if any nodes are affected. The problem with having chemo and radiation first is it cuts down the number of nodes thet get. The more nodes they get , and that are negative, the better. There were only 8 found in my specimen and you feel more secure if there are over 15 and they are negative.

Dick

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I forgot to mention earlier about the nurse. She changed the colostomy bag after surgery and showed me how. I may have gone in then for the next change and then it was about every 3 weeks until the stoma shape and size was stable. That was probably about 2 months. After that I just call with questionsor see for particular things like the belt support I just ordered. There can be an occasional emergency. Myseal started leaking because the bottom of my stoma became convex (?) and she showed me how to handle that

cherriann
Posts: 156
Joined: Mar 2006

hi bj,
i know the dread you feel. back in july i had my rectum removed and am now living with a permanent colostomy. let me start by saying that thou not a easy road it is not as dreadful as you will imagine. i now use irrigation as a form of evacuating and life isnt as rough as i thought it would be. even without irrigation i got use to the bag pretty fast. beings you will most likely have most of your colon left your ostomy will be more easily managed. if you want more info on this go to uoaa, they have great info on that board and it really helped me get thru it all. also i work 2 jobs and went back to work after 5 weeks, my jobs are very physical so it was slow at first but im doing pretty well now considering im still on chemo. if you have any other questions dont hesitate to ask.
take care, cherri

taraHK
Posts: 1961
Joined: Aug 2003

Hi BJ. My history is very similar to yours. I had a very low rectal tumour. The goal was rectal-sparing surgery but in the end my tumour was too low and I had an APR with permanent colostomy. I had chemoradiation prior to surgery. This was 5.5 weeks of radiation (M-F each week). The chemo was pretty light. Has anyone discussed radiation with you? It is good that you are having the ultrasound -- my understanding is it can be v. useful in staging. Like you, I only dealt with my surgeon in the early stages. I didn't see oncologist till after ultrasound. Before surgery, two things: make sure you are as healthy as possible. And insist on seeing a stomy nurse. As others have mentioned, s/he should help you figure out the best placement for the stoma (which the surgeon will follow). This can be critical for clothing afterwards, etc. After surgery, two things: (1) make sure you get adequate pain relief (2) get up and get walking. Walk as much as you can, both in the hospital and after you get home. You will be achy for a little while but I was walking around the track within a week of discharge.
Work and other activities: it may take one month after surgery before you can return to work or take up activities and 3 mos before you feel 'normal'.But, I went back to work and also took up physical and other activities quite quickly. I am lucky that i have some flexibility in my job so i could rest or work at home occasionally if I needed to.
I had chemo after surgery (I was stage 3 or T1, N1, MO. I was able to work during that, mostly.
Colostomy: yes, it is a big adjustment -- especially psychologically. But, for me, it is truly "no big deal" anymore. I can wear what I like, work, hike, swim, jacuzzi, etc. Two important things: (1) a good stoma nurse to advise you initially (2) research and try several -- even many -- products, untill you find what suits you best. There are many options out there. The major companies will send you samples, and a stoma nurse may give you samples, too. I'd be happy to share details with you on what works best for me but of course something else might work better for you. Finally, some people are able to 'irrigate' -- which means then wearing a tiny appliance (more like a bandaid) and no output during the day. That's what I do. Feel free to email me on this site if I can provide any more information. (Click on the little envelope logo beneath my name). Good wishes to you. Keep asking questions!

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Hi BJ,
Sorry to hear about your situation. I also have a rectal tumor that is coming out Feb 5th, it is extremely likely that I will wake up with a colostomy. My radiation and chemo has shrunk it significantly, but it still may not be enough. Have you had chemo and radiation????? I live outside the Memphis, TN area and highly recommend West Clinic if you want a second opinion. I also have an amazing surgeon in Memphis. I am only 32 and he said living with a colostomy is not the end of the world. He fully expects me to be able to return to work in 6-8 weeks. I'm sure you will be able to do the same... Best of luck...

Kiersten

pink05
Posts: 553
Joined: Mar 2006

Hi BJ,

You have gotten some great advice so far. I just want to say that I have known and heard of many with colostomy bags and they continue living completely normal lives. Yeah, I'm sure it takes some getting used to, but once you are used to it, it probably won't be as bad as you think now. I would, however, consider a second opinion from another surgeon. My dad had to have a right colectomy and if we would have gone with the surgeon that the gastroenterologist recommended, he would have had a more invasive procedure. We did tons of research and found an excellent surgeon who was able to do the surgery laporscopically. I know that your situation is different and that your tumor is in a different area of the colon, but definitely ask another surgeon's opinion. Sounds like this was caught early. Praying that everything goes well for you. Please let us know how it goes.

God bless,

-Lee-

Kaye2003
Posts: 86
Joined: Mar 2004

You came to the right place. The people on here are great. I've cried, laughed and prayed with/or in connection with more than one of them. Many will remain in my memory as an important part of my life if I live to be 100.

My husband was dx Oct 03 very similar to your tumor site. Surgeon dx, said he would have a permanent colostomy. Sent us to onc. Husband had rad/chemo (Xeloda, he was the first patient here with crc to be put on it). Had final colonoscopy, ct scan in early Feb 04. Tumor had shrunk small enough to be removed with no colostomy. Then had chemo again for 3 months. The cancer actually saved my husbands life. During the ct scan they found he had an abdominal aorta anyreusm(sp). The doctor said left undetected it would have killed him within 3 years. Had surgery for that 8 months after cancer surgery. As of today he is still NED.
Get a second opinion concerning everything, chemo, rad, etc.
The most important thing is to keep your faith. God saw us thru the hardest times we could imagine and we survived. I think we are probably better, more understanding people because of our experience.
I will keep you in our prayers.
God Bless,
Kaye

LOUSWIFT
Posts: 372
Joined: Aug 2006

I agree with fedester on the second opinion. By many standards here your tumor is on the small side but very close 5cm to the problem so there isn't much tissue to reconnect and if reconnected you run the risk that cancer cells may remain. Still it may be enough and the risk is yours to take. Take some time find out the best doc in your area and seek him out for an opinion.

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