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POST COLORECTAL TREATMENT
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May 15, 2019 - 12:50 pm
Hello to all CSN Members, I am in search of recommendations/suggestions that the community may be aware of with regard to discomfort from bowel movements as detailed below: Background:
Treatment:
It's approximately 4-months since my reversal and I experience tremendous difficulty and painful bowel movements. Stool is watery at times and despite efforts to bulk-up with fibre intake even artificial fibre, I have excesssive burning and itching in the anal region. A sigmoidoscopy revealed mild radiation proctitis and doctors have advised that it could take up to 18 months before I feel better. In the meantime I continue to try and constipate with Immodium and other derivatives. Anyone with similar effects of this as described above and have found a way to deal with it would be much appreciated. Sincerely Anjan
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Joined: Mar 2019
Hi and welcome
Hi Anjan,I am sure that more long term members will be here soon to welcome you to the forum and offer you their experiences.
I am still new here,and my surgery is coming on May 31,so I do not experinced yet what you did. If you don't mind,I would like to ask you a few questions;
My diagnosis (Jan 22,2019) is almost exactly the same as yours,but the treatment had been different-consisting of Xeloda pills taken 5 days a week at home,and radiation at the same days at the hospital. Both treatments lasted 5 weeks. I finished it on April 8,tomorrow is my MRI and next week CT scan...so I don't know yet what changes happened to the tumor,hopefully it shrunk.
You had been taking Xeloda pills and Oxaliplatin;had you taken the pills at home and Oxaliplatin as IV in hospital? How often? What exactly is a "cycle" or a "round"? I am not sure that I undestand the terminology yet; English is my second language,and until now I never needed to learn medical terms.
May I ask you did you have scans after the treatment before the surgery? Did you have a good results...meaning the tumor had shrunk? And how did you handle the FOLFOX chemo? Was it easier compare to previous chemo?
Sorry that instead of giving you some answers I am asking you questions...but there is similarity between our diagnosis,so I am trying to compare treatments,and eventually the results; about my experience with surgery and whatever happens after I am going to be able to write in a few months.
I hope you'll get lots of answers and help on this forum,which is very informative and helpful.
I wish you good luck,
Suzy
Joined: May 2019
Hi Suzy
Hi Suzy
To answer some of your questions:
Yes. I did have an MRI after taking XELODA Pills at Home and Oxaliplatin via IV at the Hospital. It took approximately 5-hrs for Oxaliplatin and the other drugs to be dispensed before I was allowed to leave. My Oncologist was not particularly impressed with the slight change in Tumor size reported in the MRI. For this reason, I was switched to the course of FOLFOX. FOLFOX (5-FU) is administered over a course of 3-days at the Hospital. It is slowly dispensed. The drug is extremely strong and any increase in the Pump-Rate could cause severe numbness in the hands as well as soreness in the throat. I experienced this on my last Chemo. I used the term round or cycle to refer to every visit I appeared for to have Chemo.
With regard to your concern about Tumor Shrinkage, I can say that I had complete success with Radiation as it shrunk both tumors such that there was no physical tumor to be removed by the surgeon during the procedure.
Hope I addressed your questions. Good luck. Have lots of faith.
Joined: Mar 2019
Thank you,Anjan
Thank you for your response. I am sorry that you have such unpleasant side effects after your treatment,but hopefully they slowly go away...even though be it 18 months,as your onco dr. suggested,seems to me too long. But having tumor completely disappear due to radiation is a huge success and a reason to be happy! Hopefully you'll get some help from your doctors or advice from members of this very helpful forum.
Suzy
Joined: Sep 2014
To Suzycruise, in my opinion
To Suzycruise, in my opinion Folfox is the owrst chemo to be on as far as side effects.
To Anjan, I'm sorry, I have no answers for you but this is why I'm happy to still have my illeostomy five years later. When I got it I couldn't wait to get rid of it and I think sometimes people are too quick to do that. I've always had IBS and my surgeon said it would likely be worse after if I have to reversed. No thanks. I'm only mentioning this for people who haven't had their's reversed yet and are on the fence about it. Think about it seriously. There have been people on here who have become incontinent that way. I cannot imagine living with that.
I hope you get some suggestions that will help, Anjan. Sorry about your situation.
Jan
Joined: May 2019
Thanks Jan for your
Thanks Jan for your encouragement.
Anjan
Joined: Jan 2010
Any help from Dr?
Just curious, did your doctor offer any suggestions for easing the pain, itch, burning?
I know that for external issues folks here have used a bidet...you can actually get one that fits on your exisitng toilet. They have also used desitin which is made for baby bums and baby wipes.
For internal issues they have gotten scripts for suppositories.
For bulk up many use the BRAT diet...Bananas, Rice (white), Applesauce, Toast.
Hope you find something which works and helps.
Marie who loves kitties
Joined: Jan 2013
Ah, good old FOLFOX 5FU & Radiation
I had them all, six years ago, and while I am blessedly NED (no evidence of disease), the side effects from treatment are a daily battle.
I have a bad case of stenosis, Joint damage and severe thinning of the skin around the rectal area, I do not have proctits. When my bowel movments are anyting other than smooth, I damage the area due to the thinning of the skin, which casues the throbbing, heavy, needing to go feelings that I believe portitis causes. I read about the nerve damage caused, sending messages to the brain that there is a bowel movment, when their isn't. That helped me to understad it better.
The only thing I can half suggest - and I say half, because I bet you've pretty much tried everything - is to keep a food journal. Get to know what foods make the bowel more liquid, and which make it firmer - well, as firm as yours gets. For me (and I understand it is different for everyone) knowing what works with my body is half the battle, the other half, I just have to live with.
I do also have a bidet - $26 from Amazon and works like a dream. Not only does it soothe but it cleanses without ripping, and it also stimulates, which I think helps the hemmeroids that are there becasue of the weird bowel habits.
I wish you the best as you figure out how to alleviate some of your discomfort.
Tru