Anyone like me?

steelerfan
steelerfan Member Posts: 26 Member
edited March 2014 in Colorectal Cancer #1
I am new to this group and so happy to have found you! I hope someone can give me some pointers because I feel like I am losing my mind. I was diagnosed with rectal cancer 9-10-04 at the age of 45. I had 6 weeks of chemo and radiation that shrunk my tumor down to almost nothing. I had surgery on 1-3-05 and followed with 6 months of chemo after. I tolerated everything really well both mentally and physically. I looked good and had a positive outlook. My husband and 3 kids were a great support for me as well as the rest of my family and friends. My doctors told me I could be the poster child for how everything could turn out in the best possible scenerio. My lymph nodes were all negative and I didn't even have a bag after surgery. Now this brings me to my problems--I am still having numerous bowel movements daily and sometimes the urgency is unbelievable! If I am not right near a bathroom, sometimes I don't make it. It seems I never have just one bowel movement and I'm done. I go once, then maybe 5 minutes later, then 15 minutes, then 10 minutes, etc. There is no rhyme or reason to it either. The time of day is different, what I eat is different. I can't seem to regulate it at all. I am a diabetic and the doctors seem to think this is part of the problem. They also tell me it takes time and everyone is different, but I can't take revolving my life around bathrooms. It has gotten to the point that I just don't go anywhere for fear of not making it to the bathroom in time. I get so humiliated. I am so grateful to be a survivor but I want my life back. If anyone has any suggestions or can tell me what they have done I would greatly appreciate it!

Comments

  • 4law
    4law Member Posts: 110
    #2
    It is strange reading your message because it is like reading about myself -- even the dates of diagnosis and surgery. I had a temporary bag following surgery, however. I find that I am constipated most of the time, with the same numerous and multiple bowel movements as you. I can stuggle on the toilet for a while, have a bowel movement, and then within minutes, have to go again -- and then within 10 or 15 minutes, again. Everything seems to revolve around going to the bathroom. Also, I usually have to go approximately 60 to 90 minutes after eating. I was told that being constipated was better than having soft stools, because the portion of the colon now in place of the rectum is smaller and being constipated "stretches" it to give it larger capacity. I have a check up visit with my surgeon later this month, but I suspect he will tell me what he has told me it the past, that I am doing fine, etc., etc. Sometimes I feel guilty complaining, because after all, the cancer is gone, my prognosis is good, and I am alive -- but I, also, would like to learn how to get back to a more normal routine.
  • alihamilton
    alihamilton Member Posts: 347 Member
    #3
    Firstly, welcome to the board! I am glad you tolerated treatment so well and that you are doing well. The problem with frequent bowel movements is very common after this surgery and I really do not know the answer. My husband was dx stage 111C in July 2003 and still has this problem. He does take Metamucil but we are not sure if this helps. He is pretty much Ok during the day but he eats a very small breakfast and lunch and then a huge dinner!! This means that many evenings he is in the bathroom several times, and it is a matter of urgency. Like you, there is no particular food that causes this. We are fortunate in that we live near his office so the there is this comfort that he can come home if he had to. Also we live in a small townhouse, so the bathroom is close. But we never go out to dinner and we do not travel. If we visit friends, he prefers to go in the day rather than the evening. And if he eats there, he would only take a small amount. Maybe your diabetes does contribute to the problem but stay optimistic as time definitely helps. My husband is much better than he was a year ago. I am just so glad to have him alive and well that some adjustment to our life style was not a problem.

    Give it time...I am sure things will improve.

    Ali
  • tkd3g
    tkd3g Member Posts: 767
    #4
    Hi Steelerfan

    I only have a minute, but I had to reply.

    First off, I could be your twin. EXACT same situation. I was Stage3 Rectal CA. 43 at diagnosis, same treatment and attitude, and outcome.

    I have found that sugars and I do not get along. Seems my colon can't process it. Then I get those really urgent bouts.

    I would suggest you really track what you eat. It has everything to do with the way my bowels react. I stay away from many food the day before I need to go somewhere.

    Also, Immodium is a life saver. I am not one to take lots of drugs, but this one is in my pocket everyday!

    I have to run.

    Best of luck. E-mail me if you want to. We can compare poop stories :)

    Barb ( will it ever be "normal" again?????)
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #5
    Hi,

    I agree with Barb. Immodium is my new friend. I have it stashed everywhere. At home, at work, in the car, in my pocketbook. I would say also if KathiM chimes in, she eats small amounts at meals because large meals make problems. I'm also diabetic. Does this make your sugars all over the place? Are you drinking lots of water? I take Immodium when I know I'm going out. It is horrible to make sure you know where all avail toilets are. We have all done that and only we can understand that dread. I also agree you should track what you have for meals. Maybe you can find a pattern. I know people say eat fiber but does that make it worse? I heard you have to eat lots for about a month before it starts working. Keep us informed on how you are doing and glad you found us. HUGS!!!

    Lisa
  • RunnerZ
    RunnerZ Member Posts: 185
    #6
    steelerfan,
    Even though I am a Bills fan, I will lend you my experience. I was diagnosed in 1999 at the age of 36 with stage 3 rectal cancer. Like you, I had preoperative chemoradiation, surgery, then 6 months of chmemotherapy. My pathology report showed no cancerous cells, the cancer having been wiped out by the chemoradiation. Everything seemed great...but the fact that I had to use the bathroom so often. Well, I can't say everything will ever be perfect, but I have learned that the recovery cruve is years and not months. I still have to eat lightly if I am out for the night, but my days in the courtroom (I am a prosecutor) are not filled with bathroom breaks as often. In my first years after surgery I had to run within a mile or so of a bathroom...now I run 10 miles and don't worry about it, as long as I stick to routine meal times, etc. Stay very hydrated, eat healthy, avoid gumbo (I found that out)...and things will get better a little bit at a time. Also, excercise helped my system regulate itself (I run and lift weights). Good luck and keep in touch...and let us hope you Steelers have another banner season.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #7
    RunnerZ said:

    steelerfan,
    Even though I am a Bills fan, I will lend you my experience. I was diagnosed in 1999 at the age of 36 with stage 3 rectal cancer. Like you, I had preoperative chemoradiation, surgery, then 6 months of chmemotherapy. My pathology report showed no cancerous cells, the cancer having been wiped out by the chemoradiation. Everything seemed great...but the fact that I had to use the bathroom so often. Well, I can't say everything will ever be perfect, but I have learned that the recovery cruve is years and not months. I still have to eat lightly if I am out for the night, but my days in the courtroom (I am a prosecutor) are not filled with bathroom breaks as often. In my first years after surgery I had to run within a mile or so of a bathroom...now I run 10 miles and don't worry about it, as long as I stick to routine meal times, etc. Stay very hydrated, eat healthy, avoid gumbo (I found that out)...and things will get better a little bit at a time. Also, excercise helped my system regulate itself (I run and lift weights). Good luck and keep in touch...and let us hope you Steelers have another banner season.

    Uh-hem...

    "Another banner year"? Puh-LEEZZ!
  • spongebob
    spongebob Member Posts: 2,565 Member
    #8
    Ahoy, steelerfan -

    I don't usually associate with Steelers Fans (I grew up in Cleveland and Indianapolis is my hometown), but I will make a "SemiColon exception" to my "No Steeler Fan" clause... ;-)

    It WILL get BETTER! It took over a year for my colon to get sort of back to normal - still not 100% there (or even 90% there) after 5 years, but I'm not complaining. You will probably always have to go more often than the "normal" person - that's just a matter of storage capacity. Some foods will rocket right thru you, though. You'll learn what you can eat at a restaurant and what you can eat at home (where your own throne is nearby)

    One thing you should watch out for: I noticed that my body doesn't really absorb iron anymore from food. As a result, I take about 1000 mg of iron and 1000 mg of vitamin C daily. That works for me. be sure to talk to your doc if you feel fatigued or short of breath. Could be you havethe same issue as well.

    Anyway, best bet is to:

    1. Eat several (5-6) smaller meals (that's better for your diabetes, too)

    2. Drink 3-4 liters of water daily (going all the time leads to dehydration)

    3. Try metameucil or some other fiber supplement. With SemiColons, it tends to slow things down instead of speed them up as advertised. Our stuff tends to bond to the fiber and give itself some form. That is a good thing.

    FYI, for the first year after my surgery, I carried around a change of drawers with me. Never really had to use them, but came mighty close a couple of times.

    Welcome to the SemiColons!

    - SpongeBob

    PS - The Steelers are OK when they're not playing Indy or Cleveland...
  • CAMaura
    CAMaura Member Posts: 719 Member
    #9
    Hi there - I don't have any definitive answers for you as my cancer was cecal and not rectal. But, I have to tell you that my intestines do react to what I eat. Here is what I have found: the cleaner and better I eat, the more calm my intestines seem to be. I remember thinking during chemo that whole grains and salads would be too much for my system; but with them, my trips to the bathroom decreased. Sugar and refined breads and white rice and cow's milk cheeses send me there...Yogurt and soy milk and goat's milk cheeses and NO red meats but lots of huge salads and nuts and brown rice and juicing keeps my body calm. It might be worth a try...I hope this helps you. The 'prescribed' diet re: my oncologist and any other hospital-driven nutritionist was the opposite of what my body really wanted. Take care and I hope you find some other good ideas here - Maura
  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
    What sport is this? Golf? Swimming?

    Welcome to our little 'group'. My surgery was 5/05, and Lisa said it well...I eat 6 small meals instead of big ones. Some of my evenings are spent in the vicinity of the bathroom, it seems that once started, the part of colon that was made into my rectum forgets it's suppose to hold, and just process! process! process! like a good colon should. But, I, too, drink alot of good old water, AND I found the chemo, etc made me lactose intolerant. This little milk sugar was responsible for MANY of my 'emergencies' before I figured it out!
    The go, and then go, and then go is something called 'incomplete emptying' according to my surgeon...without the normal rectum, the colon doesn't know WHEN it's done...sigh....
    BUT it seems to get better daily...and I just accept the fact that my life has changed....and if I am going to eat 'naughty', I make sure there is a clean restroom around!!!
    Good luck, and stay strong!

    Hugs, Kathi
  • cincinner58
    cincinner58 Member Posts: 1
    #11
    I could have sworn I was the only one with this problem. I had stage 1 anal sac canal ca. I am 6 mo. out from chemo/radiation for 6 wks. I too have problems with the urgency and if I am too far from the BR, well you know what happens. I have been extremely frustrated and have become a prisoner in my own home. If I try to go somewhere, I usually have an accident. My Surgeon told me I have some muscle damage of the sphincter since my tumor was so close to the anal area. I was told to take Imodium and stay somewhat constipated. I find that miserable. My only other option is a colostomy. I am giving this another 6 mo. to maybe improve from the result of my radiation. I feel better that I know I have others I can discuss this with, that are struggling with this as well.

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