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Recently Diagnosed / Long Term Bowel Control Issues

bgman1022
Posts: 7
Joined: Apr 2012

Hi All
Just recently diagnosed(03/28) and begin treatment(no surgery) next monday. First of all I can't express how much it means to have found this website, not only for all of the information of my upcomming rigors, but the emotional and moral support provided by and for the members. As I'm sure you all can attest to the unknown of the upcomming is frightening. From reading prior posts I have a idea of what to expect and for that i'm greatful.
The one issue I was counseled on by my Radiation Oncologist was the potential for sphincter muscle damage or weakening resulting in bowel control issues. Have any of you post-treatment members experienced this and if so has it been permanent???? At this point this seems to scare me the most!!
Any insight will greatly appreciated and once again thanks to all for being there.
Scott

mp327's picture
mp327
Posts: 3112
Joined: Jan 2010

I'm very sorry you have a reason to be here, but it's good that you are finding this site helpful already. I hope you find comfort in knowing that most of the people here have come through this treatment with few residual issues that can not be tolerated. As for bowel control issues, I dealt with that during treatment and for a little while afterwards. I think the old adage "Never trust a fart" applies here. It was hard to tell what was gas and what was more for awhile. However, I am now over 3 1/2 years past treatment and it rarely happens anymore. I don't think you'll deal with this as a permanent side effect, but be prepared during treatment to have possible control loss at times. One thing I hope you are receiving is radiation delivered by IMRT (Intensity Modulated Radiation Therapy). This type of therapy targets the tumor without compromising the surrounding tissue, which can reduce the chance of weakened muscles and permanent damage. One other important thing to remember during treatment is to stay well-hydrated. If you have diarrhea (as is quite common), you will lose copious amounts of fluids, so it's critical to replace them. I always tried to drink 8 oz. of water every time I had used the bathroom so I would not get dehydrated. Please let us know how Monday goes for you and if you have any more questions, please ask! I wish you all the best.

eihtak
Posts: 887
Joined: Oct 2011

Welcome, and I wish you well with your journey. I want to second what Martha said about staying hydrated, it will help in many different ways and such an easy thing to do. I can not offer much advice on the bowel issues, before my treatment began I had colostomy surgery and a year later it looks as though it will be permanent. Even with that I did have problems during and shortly after treatment, but within a couple months back to normal and I expect you will be also. The anal area will get extremely sore tho from the radiation and many people come up with different methods of rinsing to sooth and clean their bottom. My husband installed a hand held shower hose attatchment so I could easily rinse my lower half in the shower and it was a huge help. Another idea is a small squirt bottle that you can fill with water to just rinse when sitting on the toilet. There will be lots of great advice as you progress, and don't feel that any question is not worth asking. I will add you to my prayer list for smooth treatment and quick recovery.

AZANNIE's picture
AZANNIE
Posts: 396
Joined: Mar 2011

As you've found out, this website contains a wealth of information from ones who have gone through this. There was concern that the radiation would damage my sphincter muscle because the mass was tangled in it. I'm happy to report that this didn't happen! I did have some bowel issues during treatment - urgency and diarrhea. This continued for awhile after treatment. I'm 10 months post treatment and so far so good.
Wishing you all the best as you begin treatment!

Ann

bgman1022
Posts: 7
Joined: Apr 2012

Thanks to all of you who replied with helpful and encouraging information. Breezed thru PICC line insertion and chemo teaching only to be thrown a curve ball today. Seems a enlarged lymph node in chest area appeared in the CAT scan. Per the oncologist this is not a normal progression of anal cancer so they are somewhat perplexed. A PET scan is next on the agenda with hopefully good results, if not possible biopsy next. I'm learning real fast "don't get too comfortable" with the situation. I think tonite might be a good one for a Zanax!!!

mp327's picture
mp327
Posts: 3112
Joined: Jan 2010

Please let us know when your PET is scheduled. I'm sorry there is another concern in your case, but it sounds like your docs are jumping right on it. I hope the scan shows that this is nothing sinister. Please keep us posted and I wish you the best results with this.

bgman1022
Posts: 7
Joined: Apr 2012

Well finally after all the diversions treatment starts tomorrow. PET showed spots in the chest hot but the issue was resolved with a bronchoscopy/biopsy showing I have a slight case of scarcoidosis. Which needs no treatmentTthank God !!
Not sure whether I'm excited or apprehensive just know the sooner I get started the sooner it's over. I guess my main question now is how soon do people normally begin to experience side effects (my treatment plan is the standard 5FU,Mitomycin,radiation)????
Wish me luck and thanks for all your support.
Scott

Dog Girl
Posts: 100
Joined: Sep 2010

Scott,

I was able to go about 3 weeks without bad side effects. Some people get mouth blisters from the chemo (I think it is the 5 FU that causes some people to have the blisters), but I just had thrush and the Black Magic mouthwash cleared that up. I did really well with the first round of chemo. They pushed steroids and anti nausea meds first and I felt a little queasy that week, but the anti nausea meds nipped it in the bud. Most of my bad side effects were from the radiation burns. While they can be bad, the skin does heal fairly quickly post tx. Besides the hydration issue already mentioned, also try to go into rad tx with a full bladder. That will help lift the bladder out of the radiation field. Also be sure to tell your drs or NP of any and all side effects. I had never really had to take pain meds before so I didn't realize they can cause constipation, but by the time I needed them I was down to drinking one milkshake a day. (I had plenty to lose thankfully. I joked about how bad did you look when you look better AFTER chemo and radiaiton! LOL) Good luck and remember the motto here; weeks for years!

MyHopen413
Posts: 38
Joined: Mar 2012

Of course side effects are different for everyone, but usually it seems that they start 2-3 weeks into treatment. It seems the most common side effects are mouth sores, fatigue and diarrhea. Also, if you are receiving radiation, you can get burned, but that usually doesn't get really bad until the last week of treatment or the week after. I worked the first week of treatment, carrying my chemo bad around. But by week 3 I was at home. You have to rest, drink lots of fluids and let your doctor know if you are having problems with diarrhea. My doctors gave me Lomotil for the diarrhea, which I alternated with Imodium if my diarrhea was really bad. They also gave me a special cream to help my skin and had me take 4 Sitz baths a day, which just amounted to sitting in a tub of lukewarm water for 10 minutes a time. The mouth sores can be yucky, but they don't last forever, just a week or so in my case.
I'm so grateful your "hot spots" in your lungs turned out to be not cancer. I had a similar scare in my first tests after I finished treatment, so I kind of know the feeling. Best of luck to you.

rds711
Posts: 113
Joined: Dec 2011

Hi Scott,

I finished my treatment 4/4/12 and am doing very well. There were some rough days towards weeks 4 & 5 and for about 10 days after my last treatment due to the burns. I however had very little side effects from the chemo , only a tender mouth (no sores) in week 2 that only lasted a few days.

I was like you the period before treatment started drove me nuts with the waiting. Once I started I was good because I finally felt I was doing something to fight back and like you I just wanted it over.

Remember everyone is different and not everyone has the same problems or degree of problems. I hope that you have minimal side effects. It is imperative to stay hydrated and to keep up your nutrition as best you can. Avoid caffeine as it can assist in dehydration.
I was told by Oncologist to eat popsicles and drink cold fluids the week of and after chemo to aid in decreasing mouth sore issues. I did that and only had "tender mouth" , no sores. Ice cream was great too. Contact your MD if you have issues with nausea or if unable to get in fluids.

As for the radiation I used aquaphor cream initially and put it basically over groin, buttocks and thighs. When the burns showed up and I had open areas I started using silvadene on them, awesome stuff and I think it really helped speed healing of those areas.
Just remember to make sure you shower it all off before your radiation treatments.

I used nonscented, no alcohol baby wipes instead of toilet paper. Do not wipe but instead pat. Sitz baths can help too.

Scott, my advice take it one day at a time. Before you know it it will be over. You can do this! Keep us posted on your progress.

Will keep you in my prayers,

Randy

mp327's picture
mp327
Posts: 3112
Joined: Jan 2010

I hope your first day of treatment went well. I just wanted to let you know I was thinking of you and wish you all the best!

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

Hi Scott,

I was afraid of this too but didn't experience these symptoms of loss of control except when I am really throwing caution to the wind diet-wise. I like corn and spicy foods neither of which agreed with me before and certainly don't agree with me now. The consequences are greater now than before but still manageable. I thank God that everything works every day. It seems like a miracle what I took for granted before. Keep eating the ice cream. I actually eat Hagen Daz lowfat frozen Yogurt every night now but ate real ice cream protein shakes during treatments. I lost about 20 pounds and have kept the weight off so far, finding this to be the best part. Keep us posted as to how you are doing. It's been almost a year since my diagnosis. When I was at the point you are at now I was worried time might stand still but it didn't and I feel better than I had in a long time now so keep hanging in!
All the best,
Sandy

Angela_K
Posts: 374
Joined: Jan 2011

I have had maybe three bowel leakage issues in the weeks immediately following treatment, but they were all very minor, minimal leakage. Then it all went away. My doctor told me before treatment started to focus on daily kegel exercises and then she would remind me at each weekly appointment during treatment to do them daily. Thanks to her I have the strongest sphincter muscle in town. :)

I found this link for men from Livestrong. Hope this helps.

http://www.livestrong.com/article/156044-the-results-of-kegel-exercises-for-men/

Angela

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