How long to get to the "new normal" after everything is done?

BoulderSteve

hello everyone. I just registered this account so I could discuss things that others may have already been through as well as share my specific situation.

My background:

Found a 4 inch tumor (ended up being stage 3) at my very first colonoscopy late October 2020. I was 51 at the time. GI doc immediately set me up with a care team and they were trying to steamroll me through the process. While I appreciate that everyone was hurrying along, my wife (a doc) and sister (a radiologist) put things on pause to find the team that would be "right" for me. We ended up not using any of the GI doc's recommendations and picked an oncologist at one facility, a colorectal surgeon at another facilty and a radiation oncologist at yet a third location. Each person was amazing at what they did, but they had never worked together before. The surgeon wanted to go immediately to surgery and the oncologist wanted to immediately start FOLFOX. After a few imaging studies over the course of a week that showed the tumor spreading past the intestinal wall as well as several enlarged lymph nodes, we ended up with a treatment plan of 8 cycles of FOLFOX folowed by oral chemo and radiation for five weeks. Then an eight week pause followed by surgery with a temporary ostomy bag followed by the reversal surgery after the colon was healed up. That process finished up in July of last year - about six months ago.

When the process was finished, I was told that I am about as cancer-free as they can claim. They still found viable tumor cells in the very center of the four inch tumor, but the rest of the tissue and the 34 lymph nodes they took out all came back negative. Hopefully that good news will continue on my follow-up appointments.

I'll be happy to provide specifics to anyone interested on any of the stages along the way and what my experiences were, but now we get to the specifics of my questions and why I joined this board...

How long does it take to establish a "new normal"? I've only spoken with one other person who went through a similar treatment for colorectal cancer and she told me it took about a year. My care team (oncologist and surgeon) keep moving the goalposts on me. First it was 3-6 months, now it's 6-12 months. I feel that when I hit the year-mark they will tell me something else. They made the same claims for the neuropathy recovery and I've accepted the fact that it is pretty much permanent for me at this point. Thankfully it's minor in the fingertips, but the front half of both feet are completely devoid of feeling.

Physically I feel OK, but I don't trust my gut anymore. My current "normal" is that I have no bowel movements for a few days and then 24-36 hours of pretty much uncontrollable bowel function. We've changed my diet and tried variations of FODMAP. We added in dietary fiber at the suggestion of the surgeon. The oncologist had me start on probiotics, but that just made whatever bowel movements I had incredibly painful. Stool consistency hasn't changed since the ostomy reversal and I have little ability to hold it in when it's one of the "bad days". I literally finish going to the bathroom and then I have to sit right back down again.

Can someone perk up my spirits and tell me that things get better and if so, how long does it take? I understand that every physical body is different and everyone's recovery will be different, but I'm awfully down on things right now. I can't leave the house for more than a half hour without having to put on a diaper, carry a diaper bag and map out where the bathrooms will be on whatever my errand outing might be. I'd like to think that there's a pot of gold at the end of the rainbow of recovery, but I don't see it yet and I'd like to hear from others who have made it there.

SandiaBuddy

Steve, it sounds like you lucked out on the cancer, but maybe not so much on the bowel function. It takes some time for the body to normalize, but that likely provides little comfort to you now. Personally, I drink a teaspoon of psyllium seeds (Yerba Prima) in the morning, which seems to help with predictable bowel function. Many forum members have more personal experience with the issue and hopefully they will chime in soon. The forum is in a bit of a lull now, perhaps due to the revamp of the format.

airborne72

Steve:

As Sandia said, congrats on the "current" elimination of cancer. That was/is the greater concern for quantity of life. But your situation and concern now is about quality of life. My tumor and treatment regimen was similar to yours with the exception that I was a stage 2 AND I stopped the post resection surgery chemo therapy at three sessions. In my opinion it was doing more harm (neuropathy, fatigue, weight loss) to my quality of life than I was willing to accept. That was over 4 years ago and I remain cancer free.

Apparently I am one of the lucky ones whose cancer has not returned and who made it through the ileostomy reversal without permanent, debilitating bowels issues. I got reversed in late March 2018. For a couple of weeks I was "bathroom bound." Movements were frequent, unpredictable and uncontrollable. I was very discouraged, but still happy to not have the ileostomy. I slowly returned to my pre-cancer diet (50% of my daily food consumption was/is raw vegetables) and increased my physical activity level. Commensurate with that my bowels slowed down but still remained unpredictable. I reduced my trips away from the house until I got confident enough to deal with any consequences.

Over the years since then I have had some "accidents" but have been fortunate enough to avoid any social embarrassment. What really bothers me is that I still don't have total control over my bowels. I wore the diapers for a couple of weeks but then stopped - deferring that until I really get old (I am currently 70).

What do I think helped in my situation? Increase your daily physical activity. Experiment with your diet (what, when and how much you eat). Regulate all of your daily activities, which also helps to regulate your bowels.

Lastly, don't drink any cheap beer.

Be patient and try to not become discouraged. Never forget that the greater risk was brought under control. Cancer is lethal; fecal incontinence is a nuisance, albeit a significant nuisance that affects one's quality of life.

Jim

SnapDragon2

It takes a while for gut flora to rebalance. A good probiotic will help also along with the fiber. I take the refrigerated type probiotic and also butyrate.

beaumontdave

Welcome, I didn't get the top-shelf care some get, more like quick assembly line Kaiser-style efficiency, here in Cali., for most of seven years, but it worked out. The thing with Folfox chemo was, I did all 12, and some of the hand jive was with me still 18 months out, so have some patience, it may take a while. I didn't do the bag, but even without, the normalcy took it's time, but I'm now as I ever was, even 14+ years further on. Best of luck and clear scans to you from here on out.......................Dave

cacook

Steve, sorry you are having a bad time. I had my surgery 2009 to remove a 6 inch tumor. I did not have to get the bag and they took 24 Lymph nodes and found no Cancer in any of them. I had pretty much the same symptoms as you. My problem was I was always constipated. What worked for me is Myrlax to keep me regular. I do have some days where I'm on the toilet quite often. When that occurs I take Imodium A-D about 9:00 pm. By 10:00 pm I can go to sleep. So this is my new Normal. It took a few years to realize this. Everyone is different. I know that I had to stop eating peanuts and a few other things because it brought me much pain. You'll learn this as you go. Good luck Steve.

Sincerely Chris C.

STI_1911

Steve,

i know this topic is a bit old but i still wanna reply to it, because i am having the same kinda trouble right now. I had a T3N1b stage colon cancer, no bag needed but chemo for 6 month. That came all to an end around easter time this year.

Now my guts are recovering from that nuclear strike called chemo. I also talked to other "victims" and heard quite the same numbers as you did. Anything between 6 Month and a year is possible it seems. I feel recovering very slow and i have to be very caucious with what i eat. Fiber is no problem but protein. I used to take a protein shake after exercising at the gym. But now that makes me literally feel like exploding. Other stuff that causes pain are garlic, cabbage, caulifower and fish (because of the protein). But i feel little improvement every week. So when i eat fish now i am only suffering for a day. At the end of chemo it was two days.

So all in all i can say, very little steps, but each steps improves.

All the best

BoulderSteve

I'd like to say "thanks" to everyone for sharing their perspectives. When I wrote the first message, I was about six months out from the last surgery (the reversal to remove the bag). I am now about a year past that milestone.

On the health front, there is no sign of recurrence (yay!). The nerve damage from chemo is greatly lessened in my fingers, but the front halves of my feet are still pretty dead. Not sure that it will ever come back at this point but I guess it's better than the alternative.

The overall bowel issue is still there but I can pretty honestly say that things are better now than they were six months ago. I am still having a similar pattern of about two bad days in a row each week. Thankfully things seem to be better and more predictable on the good days. Recognizing the dietary triggers that cause problems seems to be pretty key for me. A lot of my issues seem to stem from foods that cause gas and bloating. If I can recognize it early enough, the Immodium pills that combine anti-diarrhea and anti-gas seem to help the best. Overall, my gut and digestion seems to have been changed by the whole process. Maybe it will continue to get better or maybe it won't... who knows! Overall, I would say that quality of life is better than six months ago, but it is obviously still below the bar of how I felt pre-cancer.

Good luck to everyone out there dealing with these issues!

nhernadi

At age 48, 29 years ago, I was diagnosed with rectal cancer. I had surgery with a very low sphincter sparing procedure. I was marked for a colostomy, but the surgeon was able to do a very low colo-anal anastomosis. After recovery I experienced frequent urgency and incontinence with my bowels, resulting in a rather poor quality of life, and I almost wished for a colostomy. However, after hearing about people doing periodic bowel cleansings for a variety of reasons, I thought I might try this for my condition. What I decided to do was to cleanse my bowels with an enema using a rubber water bottle and hose. I found this to work quite well. I have to do this every 2 to 3 days, and it takes about an hour or 2 to complete the process. This has allowed me to continue with a completely normal life other than the inconvenience of a couple of hours every few days. I have been doing this for over 25 years now. I am currently 77 years old, and I am quite happy that the surgeon decided not to give me a colostomy.

cacook

https://csn.cancer.org/discussion/324655/how-long-to-get-to-the-new-normal-after-everything-is-done

Steve, I had Colon, Esophageal, and Stomach Cancer. The Esophageal and Stomach Cancer followed 2 years after the Colon Cancer. I have been Cancer free for 5 years. Unfortunately you are correct, everyone has different issues during the recovery process. I can only eat small portions of food at a sitting due to the Stomach Cancer. Also I have to sleep at a 45 degree angle as I don't have a sphincter to keep the contents of my Stomach from flowing into my Lungs. As far as the Colon Cancer recovery, I go for about 2 days with no Bowel movements, then I kind of empty out on the 3rd day. One of the things that I have developed from the surgery is Crones disease. My wife and I still go on trips but we do not fly anywhere because sometimes on a flight you won't be able to make it to the restroom in time. My diet hasn't changed to much except I can't eat Fatback and beans anymore! :) My advise is to be patient, and get plenty of exercise. Even if its only walking. Walking for me does wonders. Think of it like churning Butter. It exercises all those muscles in the abdomen.

Sincerely,

Chris C.

STI_1911

Hi all,

since about 2 weeks i got a new problem. Every day i feel a discomfort in the lower abdomen and a light nausea. Not strong enough to throw up but enough to lower my appetite and to just feel bad. Last checks in June (CT and ultra sonic) did not show anything unusual. I want to go on a holiday trip to Norway next week but now i am a bit frustrated 'cause it does not improve.

Has anyone had the same experience of permanent nausea month after chemo ended?

Thanks a lot

SnapDragon2

Hey STI, how's your bloodwork? Blood panels can show alot. Such as liver and inflammation panels?

If bloodwork panels are in normal range then you might need to detox your sustem to rid yourself of the left over toxins from chemo.

Just a thought.

beaumontdave

STI, my recollection was light nausea, low appetite, the jaw thing of tension. It all went away, and did help take some weight off, or keep it off for the duration. It was low on my issue pole...................................Dave

STI_1911

Thanks SnapDragon and Dave for the good hints.

Blood panel check is on the way. What i also noticed is that the nausea kicks in for about 2 - hours then all ofa sudden disappears within 20 minutes. I have the feeling that this is somehow related to some neural point triggered along the colon, affecting the parasympathetic system.

@beaumontdave how long did those problems last?

cheers

STI_1911

just received the blood panel and it shows all 3 bilirubin values raised: total 1.93mg/dl; indirect 1.44mg/dl; direct 0.49mg/dl. Also anorganic phpsphor is low 0.68 mmol/L.

I will have my liver inspected with ultra sonic next wednesday.

have a great day

beaumontdave

https://csn.cancer.org/discussion/comment/1699526#Comment_1699526

STI, the symptoms increased with the FOLFOX treatments, as I did the 12 rounds, but they always faded by the end of the first week after treatment. Once it all was done, the lingering things were hand and foot numbness and tingles, which stayed around, in some noticable form for 1 1/2 to 2 years. I still can't be certain if I have residual nerve stuff, because I have hereditary CMT, a peripheral nerve disease, anyway. The cold water shocks/the heat fatigue stuff went away directly, as well. The hair thickened, my energy returned, I went to Vegas for my 50th B-day a couple weeks later, was quite the celebration as I recall. Little did I know, I was going to battle it, going to my liver for the next 7 years or so............................................Dave

STI_1911

Dave, congratulations for your way, it looks like everything went well.

I am just a bit concearned because my chemo is already finished since May this year. And now i have these bad bilirubin values and a pressure feeling around the liver. I am planning to go to Norway next week and of course i would like to enjoy it. That's why i am a bit careful and wnat to have it all checked before the trip.

thanks

Guido