Too many bowel movements

I am about 5 months since end of treatment. Had a PET scan and there is no malignancy! The pain and itching is beginning to subside.  However, my biggest problem is frequent and abnormal bowel movements.  I am seeing a therapist at the Pelvic Health and Rehab center in San Francisco and will try some hyperbaric chamber treatments.  Does anyone have any tips? Will this improve over time? I can't leave the house before 10:00 am and am afraid to travel, especially on an early morning flight. Yikes!

Laura, Maggie sent you a hug.
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I didn't do hyperbaric, but I have heard some people swear by it. I doubt my HMO would pay for it.
I must confess, I retired after treatment (don't know how I made it through work, after that)
So I pretty much don't do anything until about 10am. It helps my whole day, in the way of rest and routine, not to interrupt that.
When that happens it's so stressful, and disruptive, and I tend to get constipate (which is worse) and then I can't go.
I have come to the conclusion, this morning, that I must take lysine, and use Aquaphor, every visit. I was fighting the new normal; making myself miserable. The lysine, is so good for skin.
A suggestion may be, eating foods that keep thing more solid; may require a change of diet. There is the soluble and non soluble fiber to consider as well.
I hope that things settle down for you soon!
Hugs
E
Nathan likes this comment
Thanks
Hi Ginny! It does improve....not back to "normal" but will get better. Mornings are tough for many including myself...Im a schoolbus driver and I am out the door by 6AM...I just make ue I am up at about 4:30 to give myself plenty of time to "go" once or twice. I am 5 years out and can tell you urgency is stil an issue. When I have the urge there really isnt putting it off...I look for a restroom. I do take an Imodium or 2 when it seems a bit too urgent...maybe once a week at this point. It really helps slow things down.Diet can also play a big part in this too. You will figure out what triggers it, but for now I would try taking a cople of immodium and see if that doesnt help...also time, sweet time will make things better too I believe.
Take care!
Sara
Janice likes this comment
I switched to a plant based diet. That’s probably not helping, but not going back given the health benefits. Thanks
I have to tell you in regards to a plant based diet...too many veggies.. especially uncooked really can do me in🥺...just sayin...
Marcia likes this comment
Same here but only 2 months post. I make no appts in the mornings, can't even sleep in the raw anymore lol. I hope we hear some good stuff from more experienced travelers but I am getting some relief using lomotil. Taking one at every meal and bedtime and things have gotten a lot better since I started that. I'm a flight attendant so you can imagine my anxiety about going back to work.
Thanks!
Oh also, taking a good probiotic at night seems to help some too.
Hi Ginny, I'm almost 2-1/2 years out from treatment and still urgency, which docs say is normal. Since I'm retired, it's not as critical, and when I travel, I get constipated, so less worry! Diet does play an important role as well as exercise. Wish you well!!
Thanks
Have you tried a broad spectrum probiotic at bedtime? A little bit of Metamucil might help too, but start very low, you don't want to bulk up the stool too much. I would try 1 level teaspoon to start, in the morning. Don't forget to drink water during the day. Please let me know if you tried this and how it worked. I had 2 months of hyperbaric, no real change.
Will try
Sounds familiar. I am 11 years out of treatment and things are so much better than I remember them being the first 2 years after treatment. I think it's just going to take some time for things to improve for you. But try keeping a food journal. Tracking what you eat and how your bowels react may provide some clues on diet modifications. Also, I think it's ok to take Imodium as needed. Patience is key in recovery, so try to be patient!
Sandy likes this comment
I believe it will improve as u figure out the foods and drinks that u can partake that gives u good bowel movement not too loose or constipated. It's a science to make this happen. Even then, I would still have to plan bathroom trips into my day, going when theres a bathroom available even if I dont really have to and getting to know where all the bathrooms are like at Starbucks, trader Joe's, whole foods, hospitals, etc..its definitely life altering.
Congrats on your PET scan, excellent news!! Yes, the weird bowel movements do subside over time; and probably different for everyone. I travelled about 5-6 months post treatment and took Imodium. Hope this helps. :)
Interesting reading responses for me, being a Hospice Nurse and almost begging patients to Not use Imodium or Metamucil.
Seeing that Imodium does have a place to be helpful after reading the positive results here.
Metamucil, I'd still be careful about as if it sits in bowel too long it gets hard and can become bowel blockage. Thinking Miralax a safer option.
My training hasn't allowed me to consciously use either one, (crazy or not) but will use Miralax at bedtime if feeling constipated.
Ginny, 5 months out I'm sure I was still struggling as you are, since I'm 10 months out now and feel bowels are finally cooperating at least more than they had. I wouldn't have been able to travel before now.
However, we are all different,
And Thom seems closer to your life style than myself, so I concede to him lol.
Best of all, it does get better and this group has taught me that.
Olga, Thom like this comment
my start times during the work week are after 9:30 am....before then I am on the toilet easily 3-4 times just making sure that all is out and coast is clear!!...my new normal!!!

its funny Ginny that now I actually pay quite a bit of attention to my booty and its inner workings....I also have become a clean-behind the scene-and in front too--.... thanks to my bidet, its nice to have the cool water cleaning and not have to use toilet paper but to pat the area dry....AND THEN I DO A WIPE WITH ROID PADS WITH A BIT OF ANTI BACTERIAL JELL..... IT SMELLS LIKE A BED OF PETUNIAS:)

HONESTLY, I STILL DONT QUITE KNOW WHAT FOODS WORK AND DONT WORK TO CALM THE INNARDS....CAUSE THE REACTIONS ARE NEVER THE SAME

GO FIGURE:).....

YOUR ON YOUR WAY....KEEP LOOKING FORWARD
Thom likes this comment
Ginny, Your treatment and progress gives me hope. Ever since my 2008 treatment (seven weeks of radiation) my anal sphincter has been shot. Urgency is sometimes a disaster. You've inspired me to pursue similar treatment here at the Univ. of Pennsylvania. Thanks!
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Vital Info

Posts

June 27, 2019

San Mateo, California 94403

November 25, 1958

Cancer Info

Anal Cancer

Squamous cell carcinoma

April 8

Stage 3

4.1 - 5.0 cm

Yes

Mitomycin

Loss of myself

A lot of people are suffering but keep fighting

Send me positive loving energy every day

Lymph node in hip

Kaiser Northern California

June 14

Anal pain, narrow and frequent bowel movements, leakage, general irritation

6 weeks, very painful skin peeling, bleeding, razor like bowel movements

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