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HAVING SERIOUS ISSUES WITH TREATMENT

JoeCal1952's picture
JoeCal1952
Posts: 8
Joined: Jan 2020

HI,

I am 67 and was was diagnosed with colorectal cancer about 2 months ago and now undergoin treatment. It was stage 3 but didn't touch the muscle.

They started me on a Chemo pill called Xeloda and radiation at the same time. I was doing fine until about 4 days ago. I now am in day 16 of 30 treatments.

They had to discontinue the Xeloda because I developed hand and foot syndrome. They will restart it at 1/2 doses when this clears up, but this isn't my major concern.

The radiation has got to the point where my rectum is burned and painful. It also has caused extrememe gas which when I try ta pass the gass, a grey liquid comes with it and it burns like you would'n believe.

This has caused me to be afraid to eat. I am afraid that when I go to the bathroom the pain will be unbnearable. I actually get up 20-30 times a night with these gas attacks.

Other than that and losing a bit of weight, I am getting there, but I need to eat. Does anybody know of anything to do to relieve to rectum burning? Also, how to stop these gas attacks. They gave me gas x and it made it worse.

Thanks!

JoeCal

 

Trubrit's picture
Trubrit
Posts: 5113
Joined: Jan 2013

Ah, the radiation burn - I remember it too well.

It sounds like you pulled the short straw with radiation, and get to suffer.  When I think back to my radiation treatments, i shudder, as I also pulled the short straw. 

I know that folks here will share with you their advice. Unctions, dietary, solace. I can share mine, but at the end of the day, nothing helped me, and it ended up being one very long, painful journey to Hell and back - but I did get back and I thank everyone and everthing involved in my life for that. 

Lets talk about the gas.  While I had gas during treatment, and I did pass a gelatinous type substance, I didn't have it as bad as you seem to be having it. My Raditaion Oncologist told me that it was normal, but didn't go further than that.  I too was scared to eat. I had to make myself eat something and then dread the point where I had to eliminate.  I could suggest you keep a food diary - always a good idea, even if it doesn't end up helping with this - to see if the gas is any worse after eating certain foods. 

I will say though, that sometimes NOT eating cuold actually make the symptoms worse. The body needs fule, and if it doesn't get it, then it can go haywire.  Its like thinking if you drink lots of water you will have MORE diarrhea, but it is not the case. More water, less diahrrhea. I think it could be the same with food. 

Now for the burn. The external burn at least.  I used a few different unctions before I settled on PURE ALOE. It is not the gel, more like a liquid and needs to be kept in the fridge. It was very soothing, but of course, nothing really worked. 

Aquaphore and Balmex were two that I used, along with a Pure Vitamin E oil and there was another one I really liked called Bio-Oil - I did read, after using it that it has mineral oil, which is supposedly not good so I quit using it.   They all soothed a little, but nothing really stopped the burn.  And of course, you know NOT to use anything in that area when you go in for your radiation treatment. 

I spent an awful lot of time in agony during and for about a month or so after treamtent. It truly was Hell on earth. 

I hope you find something that helps, and I know others on the forum will answer you and have great advice.  

Good luck, and keep on visiting us. We're really  quite the crowd. 

Tru

 

JoeCal1952's picture
JoeCal1952
Posts: 8
Joined: Jan 2020

Well-You sound exactly like me. The docs always said "that's normal" but never really gave me solutions to alleviate the external pain. I have no internal pain at all....

I will take your advice on the pure aloe, although it is hard to even get to the spot that is burning. It is that painful. 

Also, seems a few minutes after I have that gass attack, I have another. Like shoveling it against the tide. I will start eating something though. I think you are right that I need to maintain my energy level and not lose too much weight. Thanks for all the input and God Bless!

JoeCal

Trubrit's picture
Trubrit
Posts: 5113
Joined: Jan 2013

That is what it felt like to me.  Like I was having contractions, and passing even the tiniest bit of tissue or BM was like having a baby.  So now you know what it feels like for women - HA! 

Unlike having a baby, which was also arduous, at least that was over and done with in a few days - three day labour for one of mine - radiation was like having contractions day in and day out for weeks and weeks.  Yes, it was allot worse than having a baby, and my second one was delivered C-Section without anesthetic; and while that was horrendous in itself, it only lasted an hour.  I guess I wouldn't do either birth or radiation again, to be honest. 

Yes, keep your weight up, because if you lose weight, the markers - tattoo or stickers - will not be accurate, and they will have to map you again. 

That feeling of having to go again and again and again is called Proctitis. Here is a link PROCTITIS.  Casued by the inflamation from radiation.  I also read somewhere that nerves are damaged, and messages to the brain telling us we need to go, are being sent. Thus the urge to go and a few seconds later go again. So on and so forth. 

And I'm not going to tell you it will be over soon, because soon in not soon enough. 

Tru

JoeCal1952's picture
JoeCal1952
Posts: 8
Joined: Jan 2020

Thanks for the input, but I also have had serious gout attacks that last weeks and makes having a baby feel like sitting on the beach , so I am told- lol - 

Thanks for the tip on wieght loss and the markers. I'll bring that up to my radiologist

 

SnapDragon2's picture
SnapDragon2
Posts: 260
Joined: Nov 2019

Hi JoeCal,  I found that a sitz bath with baking soda in it worked so good.  The baking soda nuetralizes the toxins from your stools.  I actually hung a bag beside the toilet filled with baking soda and water and rinsed after going to the bathroom every time (redneck bidet).  The other thing is lotion.  Like Tru said, pure aloe was also a butt saving reliever.  AND, stay ahead of the inflammation.  I took advil thru radiation.  Good luck to you.  You will make it thru!

JoeCal1952's picture
JoeCal1952
Posts: 8
Joined: Jan 2020

It seems I am doing everything right except eating well. I have to keep my weight up.

Im will take your suggestions and put them to use.

Thanks!

Sestra17's picture
Sestra17
Posts: 54
Joined: Jan 2018

That is a great idea!

AnneO1965's picture
AnneO1965
Posts: 146
Joined: May 2019

Hi Joe, lots of warm baths and the flushable wipes saved my bum.. Didn't stop it from burning like heck, but made me think I was doing something about it.  Good luck!

JoeCal1952's picture
JoeCal1952
Posts: 8
Joined: Jan 2020

Any input helps and is appreciated... I have the wipes and they do help, but I go so often the it is really a pain. otta keep movin forward!!!

SandiaBuddy's picture
SandiaBuddy
Posts: 1048
Joined: Apr 2017

Let me preface with the fact I have no experience with radiation. so to the degree radiation causes the gas, this might not apply.  But I have had bad gas since the surgery/xeloda (capecitabine), and your chemo may play a role in the condition as well.

It sounds like the gas is a real crisis, and perhaps you will be open to trying a variety of strategies.  The first that kept me alive during chemo was drinking baking soda, mixed in water (bicarbonate of soda).  It gives fast, if not lasting, relief.  The so-called H-2 blockers also might help.  Cimetidine (Tagamet) has a known anti-cancer effect, as a bonus.  Prescription doses of cimetidine are often 800-1,600 mg, so you could take it liberally.  The H-2 blocker that works best for me is ranitidine (Zantac).  Unfortunately, it has been linked with promoting cancer, but on a short-term basis, it might be worth a try.  Famotidine (Pepcid) is similar to ranitidine, but not as effective for me.  Also, proton pump inhibitors like prilosec are be highly effective.  If you could get some relief, they might be incredibly valuable in the short run.

I recently got a new GI doctor who recommended liberal use of Gaviscon (you can take 16 a day [along with a ppi or h-2 blocker]).  I took one last night before bed, and only got up once (which is great for me), so that might be worth a try as well.  All of these drugs are available in generic form for reasonable cost at Walmart.  The Gas-X (simethicone) suggested by your doctors strikes me as a simplistic and weak approach to a serious matter.  You have to eat to keep up your stregnth and heal.  This is an important matter and if over the counter remedies do not work, you should consider seeing a separate gastroenterologist and impressing on him or her the importance of this issue.

Best of luck to you.

JoeCal1952's picture
JoeCal1952
Posts: 8
Joined: Jan 2020

Thank you very much for this info. I have most of these things you mention right here in the house.  wil start off with the baking soda and go from there. It was so bad last night I had to get up every 5 minutes with a gas attack that produces a fluid that is painful as all hell. I will keep you posted, and thanks again!

SandiaBuddy's picture
SandiaBuddy
Posts: 1048
Joined: Apr 2017

The Gaviscon before bed is really helping me, but we are all different.  

Annabelle41415's picture
Annabelle41415
Posts: 6430
Joined: Feb 2009

Welcome, and I'm sorry that you have to join us.  We are a wonderful group that can help you get through all of this journey you have begun.

The radiation burn is terrible, but unfortunately, it is so common.  It is wise to get a good barrier (my go-to was Calmoseptine) and apply it liberally.  Also, a sitz bath, or just sitting in the bath tub will help. 

You need to eat to keep your strength up so you can get through the treatment.  Changing my eating habits didn't help me at all, so it's a matter of grin and bear it, and for me cry every time.  I'd sit there with tears because it hurt so bad.  Too bad the doctor's don't warn you ahead of time of these terrible side effects.

Gas can be terrible and make you miserable.  Walking helps some so make sure that if you feel those gas pains come on to get up and move to make the gas move down and out.

Wishing you the best going forward, and just know that there is nothing you could ask that we haven't experienced or heard before.  We have been prodded in the worst place possible so a lot of our dignity and modesty went out the window.

Kim

JoeCal1952's picture
JoeCal1952
Posts: 8
Joined: Jan 2020

Thank you for the input! I have to get this gas attack thing under control. The radiation burn hurts a lot, yes, but If I didn't keep getting these fluid producing gas attacks, then maybe I cound address the burn. I would do a sitz bath, and then 5 minutes later I am back on the bowl. Thanks and God Bless!

annie4145
Posts: 180
Joined: Jul 2018

I hope the rest of your treatment speeds by.  I believe I used lidocaine for the last part of my treatment.  (it burned going on a bit, but I would put it on in small little bits at a time (actually someone helped me because it is sort of hard to put on yourself), so the burning from the medicine was manageable and it made it at lot easier to go to the bathroom.  I also spent alot of time in the tub.   I had diarrhea constantly , and by the time I got myself taken care of, I had to go to the bathroom again, and it would wipe off, and then I woudl have to start over!  Horrible period of time, but hang in there.  It will be over before you know it and then you can start feeling better.  

 

annie4145
Posts: 180
Joined: Jul 2018

PS I forgot two good things. Clean hand towels.  I used them alot, and then would just wash them (in hot water).  It would allow me to lay on the couch or bed and wipe the occasional mucus issues that I seemed to have in the weeks after treatment.  And baby power.  I would use it LIBERALLY to dry up the moisture that I had.

Trubrit's picture
Trubrit
Posts: 5113
Joined: Jan 2013

I used chucks on my bed all of the time, as I had issues with bowel incontinance. 

I have a large amount of hand towels that are specifiacally for drying my butt, (and seperate ones for urination becasue I am a woman) as I use a bidet ALL of the time at home.  

The bidet is a Godsend. Even now, almost SEVEN years post radiation. 

Tru

Capox Dude's picture
Capox Dude
Posts: 77
Joined: May 2019

These great folks who have been through it have some great ideas and real life experience.  Certainly worth listening to their collective wisdom.  I wish you the best.

JoeCal1952's picture
JoeCal1952
Posts: 8
Joined: Jan 2020

Sorry I have been offline for a bit but I was struggling with many issues during treatment. Things are better now thanks to ALL of your help and input. Today is day 23 of 30 radiation treatments and I have adjusted to pain levels and appraoching the end of treatment. I sure hope after they scan me the tumor is gone, or small enough to remove without having a colostomy. Thanks to all! I'll be back with the final results! God Bless!!!

SnapDragon2's picture
SnapDragon2
Posts: 260
Joined: Nov 2019

Wishing you the best news!!!!

annie4145
Posts: 180
Joined: Jul 2018

you are in the home stretch... almost done!

Annabelle41415's picture
Annabelle41415
Posts: 6430
Joined: Feb 2009

That is good that you are almost done.  Hope that you continue to do well until the end of treatment.  Remember that it will continue to work approximately 6 weeks after treatment ends so you might end up with some residual side effects.  It won't be anything new, but it won't start getting better right away.  Keep up the great attitude.

Kim

ellend
Posts: 95
Joined: Apr 2016

I also had similar side effects from the radiation/chemo treatment. I don't remember the gas as much as the searing pain. As other people mentioned, sitz baths helped to soothe the area. I also used Calmoseptine and Aquaphor as barriers to protect the skin in the vicinity. I also had internal pain. The radiologist gave me a prescription for suppositories that helped reduce the internal swelling and pain as well. I don't remember whether I could do that during the treatment, or he waited until after the treatment was complete. My surgeon also gave me samples of creams that could be used internally to help alleviate pain. It does get better, but the radiation makes long term changes to the area and unfortunately, it probably won't be the same.

The radiation/chemo course worked well for me in terms of knocking out the cancer. The tumor shrunk to the point it was almost gone. Mine was very close to the anal verge and it shrunk enough that I didn't have to live with a permanent iliostomy. I had a temporary one because the surgeon wanted to let the area heal before reconnecting everything. I hope you don't have to live with a permanent iliostomy or colostomy.

Ellen

danker
Posts: 1231
Joined: Apr 2012

Radia gel from wall mart wii sooth the radia burn. As bumppy as the road may be,it is doable. Becomming NED is woth all the agrivation! Hang in there!!

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