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Not Again!!!

rmap59
Posts: 266
Joined: Jun 2007

I will appologize in advance for bringing this subject up again. I know that you all have told me it will take time and patience but my bowels seem to rule my life. It will be one year this Friday since my surgery, stage 3 rectal, removal of half of my rectum. I have tried many different things in order to be normal but to no avail. I still go very frequently and in very small increments(if you know what I mean). It hardly ever feels like I am done. Any comments and or suggestions would be appreciated. If you tell me time and patience then that is what I will accept. And by the way, my life is good!!
Robin

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Robin,
If you don't ask here, where can you ask? I am assuming you have spoken to your surgeon about this? I remember at the hospital where I had my surgery done they had some info. on bowel training. Maybe if you look on the MD Anderson website you can find something.
Another thought I had was that if I were you I would consult with a naturopathic physician (N.D.), one who deals with cancer patients if you can, they can probably help you with things you can do diet wise, and also with supplements. I think I mentioned before, I have the same problem, but only in the morning. The first time I go I am never done. The second time usually does the job, at least for the morning. I am sure there is a way to retrain your bowels, I am just not sure how to do it!
Best Wishes,
Susan H.

4law's picture
4law
Posts: 112
Joined: Dec 2004

My sugery was 3 years ago. The good news is that the cancer is gone and regular testing shows I'm still NED. I still have frequent bowel movements and often have to repeat until I feel I'm empty. There has been improvement over time and I've learned to adjust. For example, I get up extra early just to have a light breakfast, wait an hour, then have a bowel movement. Wait, have another -- you know the routine -- until I feel ready to face the day. I found that approximatrely an hour after eating something I have to go again. Without a rectum the remaining portion of colon that took its place is simply not as large as the rectum and therefore doesn't have the same capacity to store stool. Trying to stay a bit constipated is the best approach because it stretches the colon that is used in place of the rectum and increases the holding capacity. I find that a banana with my morning cereal and rice with my dinner is helpful. I understand fully what you're going through because I also feel my life revoles around going to the bathroom. Lately, I have a lot of gas after eating, which feels like a pressure against my anus as if I have the urgency to go. I wonder if you, or anyone else, have this same problem, and what if anything helps? This is a real drag and realistically I don't see any way out because we are living with a makeshift rectum. But as you said, life is good, and this sure beats the alternatives.

rmap59
Posts: 266
Joined: Jun 2007

4law,
Yes, I have the same problem with the pressure. Dont know if I have to go or just gas. It hurts too! I have tried gas X, helps maybe a little. If you find anything let me know, same here. Thanks for your reply.
Robin

davidsonxx's picture
davidsonxx
Posts: 137
Joined: Mar 2007

I am also about a year past my reversal and have had a lot of problem with gas. I also tend to swing between constipation and diarrhea. I started taking probiotics about a month ago and it seems to be helping the gas and helping to normalize things. Since I haven't been taking the probiotics that long I'm not quite ready to give the credit to the probiotics but I definitely plan to continue taking them. The big test comes next week when I have to travel for my job. That always made my system go bonkers in the past.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Robin,

I really had to think about this, because I have just adjusted to life. I am 3 years post surgery that took my rectum and sig colon, if you remember.

My life is fairly normal, but I must admit, as I think about it, I have made alterations. I always have beano and lactase in my purse, to cut down on the gas possibility. As with 4Law, about an hour after eating, especially the dinner meal, I have the most urgency. About half the time, I need to make more than one trip, just to achieve complete emptying. I have, over time, found the foods that cause trouble, and adjust to it. No, I haven't stopped eating them, just know to be near a toilet when I do...the only food completely out of my diet is popcorn...but the surgeon said that would be the case...

As you have seen from my posts, I don't stop living. Travel is a big thing for me, especially now that I am semi-retired! I still have my moments, and, to be honest HATE the thought of a colon cleanse (lol). Fruit juice gets me 'going' if I have trouble, and bananas stop a runaway flow...

The fact that your life is good says it all...at one year, well, I was just getting a handle on my bathroom visits...'potty training' all over again, since what was now my storage organ (rectum) used to be a processing organ (descending colon).

I guess what I am saying is, after 3 years I can safely say, Yes, it DOES get better with a 'tincture of time'.

Hugs, Kathi

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

BTW, don't scare me like that...I thought the beast had come back....lol!

Hugs, Kathi

rmap59
Posts: 266
Joined: Jun 2007

Oh Gosh! Sorry I wasnt thinking about what that sounded like. Sooo glad its not that.
Robin

RunnerZ
Posts: 185
Joined: Feb 2004

Robin, I am a 45 year old 9 year survivor of stage 3 rectal cancer. I too had half of my rectum removed and have struggled with the same issues you are discussing. I do have to tell you that one year post-op is a very short time in terms of this kind of recovery. I just noticed on my last beach vacation that I was much more comfortable than in the previous years....so my function is still improving nine years after surgery and treatment! Many of the recommendations i would give are already here...and it is good to hear that I am not alone. I too get up early so that I can use the bathroom before I go for a run in the morning. That run then ususally helps me go again before I get ready for work! Some days I have to find a bathroom 3-5 times and some days once or twice. It IS a pain and a reminder of what we went through, but I figure that I don't have any alternatives but to deal with it the best I can and smile my way through it! Excercise helps me feel better about my body in general. Patience with your body and your mind!

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Robin!

Not knowing what you have tried I apologize if you have already tried these things:

probiotics and digestive enzymes. These support the whole digestive system and ours are out of whack. (well most people's are, we just happened to get the added slap of cancer in our pipes). these two things help to restore proper function and most of us are lacking in them.

I hope this helps. I'm reading a really good book right now all about enzymes and just how important they are to basic life.

Have you read The Makers Diet by Dr. Jordan Rubin? He had major digestive issues (Crohn's Disease) and he healed it. Though I don't really follow the diet, I think his info on intestinal health is hugely informative for all of us.

peace, emily

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

I have to tell you that the enzymes are part of my routine now. They really helped my 54 year old sister (who is a nurse practioner and had every test in the book) who had cramping and was unable to eat past 6 pm because the pain kept her up all night.

She just bought acidopholis with probiotics tablets from Trader Joes and it has completely fixed her problem.

I was so impressed I take Bio 12 available at Whole Foods or health food stores in the refig section. I thought it might help as I am still in chemo land.

Just another though! Wish you well Robin.

Jen

wesparris
Posts: 11
Joined: Apr 2007

Hello...I had my entire colon taken out last September except for 6-7 inches of rectum. For me Metamucil wafers twice a day plus Immodium twice a day has worked wonders. Using them together I go 3-4 times a day and it is fairly solid, and I eat whatever I want. The key imho is the Metamucil wafers. If I just take the Immodium without the wafers, I go 10-12 times a day and it is much looser, so they make a huge difference.

Hope that helps,

Wes

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Robin, I feel your pain. I had all of my rectal tissue removed when I had my tumor removed in 6/03. I had an ileostomy that was reversed 8 weeks later. I spent the next 18 mos. in the bathroom or looking for one. I had constant pain, my bottom was always sore and raw. I had occasional incontince and frequent constant trips to the loo. I went all day and all nite. I was also back to work full time. I cried daily. I tried everything---diet, meds, not eating--nothing helped. I finally opted for a colostomy and haven't looked back. I no longer search for bathrooms, the pain is gone. I sleep all nite unless I have to pee. If you want you can email me.

Maureen

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Robin,
I just thought of one other solution I read about on colonclub.org a while back. This person gave themselves daily enemas and said it had finally freed him from this problem of living life around the bathroom. It makes sense, obviously if you don't have poop in the shoot so to speak, then you don't have to go to the bathroom all the time. It would certainly solve the problem of feeling like you weren't done. I don't know if you are quite to that point yet, but it might be something to consider and it helped this guy. If you look on that site through the archives/old posts, you can probably find it.
Best of luck,
Susan

rmap59
Posts: 266
Joined: Jun 2007

Thanks Susan, I have thought about that before and didnt know if it would be safe but I will ask my surgeon this month. I will also go to that website. Really appreciate the reply.
Robin

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