Ginny's Cancer Blog

Sphincter “control”

I am only one month from completing radiation, and I have no sphincters muscle control. When I have to go, I have to go. I saw a physical therapist who gave me some exercises. Does anyone have any recommendations or can you tell me how long after completing treatment you regained sphincter control? Plus I have several bowel movements daily. Will this ever normalize? Help!

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Are you leaking at night or having to wear a Depends? I recall having this problem, and still sometimes do, but something to slow the bowel might help. It is a fine line to control the BMs and not create constipation. Stage 3 gets a bit more radiation, so I think it will take a little while, other Stage Three's please weigh in! i just remember while I was on time release morphine, I had more control, and less frequent movements. I did take stool softeners with it too, of course.
One month is not long, but please let your doctor know, might be able to prescribe something. I would not do bulking agents like Metamucil at this stage, it would expand the stool and likely be painful. But later it will be helpful. Sorry this is happening, it is so distressing, I know.
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Thanks for your reply. Not leaking. Just worried about being more than 40 ft from a bathroom! I quit those pain meds. Constipation was worse.
I've finished my radiation in November 2017 but still have urgency, frequency, and incontinence accidents. It's really hard to hold. Probably because of my levator muscle was involved. Peristalsis is slow. I have to do some pelvic exercises to help myself to empty the bowel. Metamucil and Psyllium make it worse, although my doctors advised them, and it works for some people. However, I can note some progress. Previously I couldn't hold at all. After a while I could hold for 2-3 minutes. Now I can hold may be for a five minutes. That's enough time to get to a restroom if it's available close by. And having a several BMs a day is a new normal for me.
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Definitely a new normal Ginny. Not saying it won't get better as you are very early in the healing process. I am 5 years out and stage 3. I still also have urgency and frequency issues. Not much control...I have had a couple of accidents and many close calls. I never wait if I have the need to go...I find a rest room ASAP. I do take an immodium or 2 when need be. My colorectal doc says it's quite normal and probably will remain the same. Does it affect my lifestyle?... maybe a little but definitely doesn't make me change plans,etc.
Take care!
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Thanks. Ugh
Ginny, I'm 2 years post treatment and stage 3, same issues as Sara. Some days/weeks are worse than others, but I still live my life, travel etc. You will get to know if you have food triggers and times of day when urgency is most common...our new normal I guess! Just happy to be alive, active and found this group xoxoxo
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Things do get better with time, but I would definitely check with your doctor - so annoying for you right now! I’m about 4 years out and things aren’t completely normal, but they are manageable. Does what you eat affect anything? I had problems with dairy after treatment, and I still have to be careful and know where the nearest bathroom is if I eat ice cream. It doesn’t stop me from eating it though! I hope you improve soon .
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Clearly too much fruit is a problem! Oh well, depends may be permanently in my future.
I had the same problem til abot my 15th week past treatment. Wore the depends constantly and didn't trust myself to go anywhere.Immodium helped me a lot and when it got to bad I took Lomotil,which what they gave me in the hospital.I'm at 25 weeks now and finally getting back to normal(my normal) but much better,even tossed the depends sometimes. I was stage 3,go in on Monday for scope from surgeon in hospital,petscans showed nothing,thank goodness. Hang in there,takes a lot of praying and look forward to tomorrow. Sandy
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Did you have painful bowel movements? I am three weeks out from treatment. Skin is healing pretty good. BM’s are excruciating
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I compared my bowel movements to “shitting razor blades “. Fortunately that cleared up and hopefully yours aren’t as bad. Problem will go away. My solution? Stop eating. That’s not what is recommended.
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It definitely makes you eat less for sure! It is my worst symptom right now. Hard to even sit normally while going to the bathroom!
Yes, razor blades, shards of glass and battery acid Pretty much describes it. I have too hover above the toilet sometimes I can’t even hardly sit down. Sometimes I feel like I’m not completely going. It’s almost like you stop just because it’s so painful. I have been taking the full dose of MiraLAX each day. It seems like it’s helped some but it is still painful.
I was a 3B and got lots of radiation, which sure has messed things up. During treatment, I had zero control, but that has gotten better with time (I'm 8 years out now). I still have accidents a couple times a month but they're not normal bowel movements but more like shots of wet gas that give me no warning.

I also have issues with frequency and use Lomotil on those mornings. Things will get better and better for you, you'll see, but don't get impatient because you're not even done with treatment. Healing starts about three weeks after treatment for most people.

Hang in there!
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Thanks!
Control has come back, a little less than before treatment. Being nearly 70, it's very common, even without radiation/chemo.
But, we have to keep kegeling the rest of our lives. Generally exercise as well helps. I find the best time to kegel is mid-stream, just try to let a very little out at a time.
Bowels are the same; multiple, but I'd rather that than constipation. I have to allow extra time in the morning; coffee, relax, and magnesium oxide 250mg helps me.
I hope you do improve quickly. For me it took a long time, on the other hand, I still feel I am improving 4 years out.
Sending you positive loving energy.
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I used Imodium, during treatment. I didn't take it at home bc I could rush to the toilet. But when I had I leave the house, I timed it so I wouldn't have any accidents. It worked all but one time (when I didn't take it)-that was embarrassing, but good thing I was at the doctor's office and the bathroom was available. It just hurts, and pain killers helped eased the pain for me. Hugs to you Ginny.. you are soon on the road to recovery.
Hello Ginny,
Sorry to say that this problem will take a while to get better. I had the same trouble for some months, and what helped was keeping a food diary so that I could work out the food that was not helping my digestion. This I started around 3 months post treatment. Before that everything was very difficult as I had diarrhea up to 8 times a day. But it got better! I started taking Imodium 2mg 1 x day and this has helped me enormously. Then I have changed my diet to make the stools more solid, so I eat carbs such as rice, pasta and bread, and leave out salad and raw stuff. That really doesn't agree with me. I haven't had constipation at all. The physiotherapist recommended that I use Psyllium fibre to bind and give bulk to the stools, and this works well for me.Having said that I would wait a bit before you try that as you are just fresh out of treatment and things need a bit more time to settle. I send you big hugs, as I remember this time well and it was a dreadful time!
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I'm 8 years post treatment and I still deal with fecal incontinence. I've learned to buy underwear in bulk at Costco. I no longer amembarrased to purchase adult depends as they have saved me several times. Unfortunately, while you might not destroy your undergarments...you still have to deal with the odor and find a place asap to clean up. I now know to not eat prior to any long distant road trip or airplane ride. Sometimes, with the best intentions...I still deal with accidents. Just was out sailing San Juans for 4th of July and felt the usual symptom of my intestines painfully flexing (only way I know how to explain.,..or similar to a severe stomach cramp) which I knew I needed to get to a bathroom FAST. Didnt make it. Again, I just try and not let it affect me so negatively. Clean up and try and face a new day. Most anal cancer survivors deal with some incontinence and/or digestive issues. I think it is just the damage that was done when you have pelvic floor radiation, I do think my symptoms are more extreme than most so please don't think you will have to endure what I go thru. Several survivors go on with NO long term or permanent symptoms. You will be able to find what triggers an episode. Usually raw veggies, spicy foods, alcohol, those kind of things. Mine seems to just happen with no real reason. Pretty much when I ear...I know I need to go to the bathroom not long after. I wish you the best!!!
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Post radiation irritation

my skin is clearing up with the help of silvadene cream, but my but crack is extremely irritated. I hope this clears up soon. Did anyone have any parts (of skin in pelvic area) that took a long time to improve? I have taken so many sitz baths. I don’t know what else to do.

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Hi Ginny. It took about a year for my skin to heal completely. I applied organic coconut and hemp oils to the sore area and used wet wipes only. I hope you feel better soon. Hugs.
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Hi Ginny, it does get better. Aquaphor was a life saver for me. It took a few months (about 3) for my butt crack area to feel better. That radiation is no joke, your skin does eventually heal though. Do you have pain killers, they really took the edge off for me. Hugs to you!
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Hi Ginny, Yes, it took forever for everything to heal, but it does. One thing my doctor warned me about was no Jacuzzi for two years.

I'm 8 years post treatment but Aquaphor is still my best friend. That whole area is very easily irritated still.

Hope you improve soon!
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Try drying with a cool blow dryer after sitz bath. I used RadioplexRx cream, https://mpmmed.com/products/radiaplex%C2%AErx-gel

you need a prescription, and maybe can find it locally, our non-chain pharmacies carry it. I call it the miracle cream! My husband had a bad chemical burn and it healed up it 2 days. Also make sure your white cell count is adequate, if low, healing is delayed. It WILL get better, sorry you did not find us until now, but so glad you did! Welcome!
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Welcome here, but sorry you have a reason to be join us. I was treated back in 2008 and remember what terrible shape my skin was in. I used Aquaphor and Silver Sulfadiazine. You have finished treatment, so it may take a few weeks for your skin to heal. Avoid toilet paper, it's too abrasive. Do not do what I did and avoid taking pain medication. Hang in there, things will get better!
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Good morning Ginny and welcome! Sorry you are having a bad time but you will find the best advice possible from this community...we've lived it!

Excellent suggestions here. I'm nine years out and still rely on Aquaphor to just keep everything lubricated. My dermatologist was a big help in the immediate aftermath of the treatment.

Soft wipes rather than toilet paper...really soft toilet paper is ok but in public places or even nice hotels what you get is like barbed wire!

Hugs...
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Yes, it seemed like many parts took forever to heal. But what helped me most was Weleda Diaper Rash Cream, Calendula. As a mother in the distant past, I had used this on my baby daughter when she had diaper rash and bright red tender skin and I thought - what the hell, nothing else has worked very much for me, so I'll try it. And it helped me a lot - no only to soothe the tissues but there are ingredients that help the healing process such as calendula and zinc. I did not like the ingredients in many of the doctor recommended products, some including petroleum products. I am sensitive to chemicals and many synthetic substances. So, was actively looking for a gentle and hopefully effective solution. Good luck with continued healing. I am a year after finishing treatments now and totally healed up in regard to skin irritations.
Thanks for the Calendula recommendation. I’d rather not have this skin problem 8 + years out, but trying to take it a day at a time 🤗
Just to clarify, the product is Calendula Diaper Rash Cream, and the company that makes it is Weleda. I tried straight up calendula ointment and different calendula creams, but none of those worked. Only that specific diaper rash cream. I hope this helps! Big hug to you - things will improve with time. And keep on experimenting and searching for what works best for you. My attitude was - I have a problem (actually many new ones) and I need to find solutions! I kept asking professionals and searching myself and I came up with a way to survive each of the challenges, one day at a time, despite as hard as it was to go through.
Hi Ginny, don't know how long u are from radiation but my skin closed after 3 weeks or so but continues to be mildly sensitive until now and I am 9 months out. I increased protein intake to assist burns in healing. As long as skin was opened, I used Silvadine cream twice a day to prevent infection.
I am only one month from completing radiation. The butt crack thing is the most annoying. Biggest problem is exercise helps with recovery but it’s the exercise that irritates my skin. Think I will also try calendula as suggested. Seeing dermatologist later this month.
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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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