Long-Term Side Effects of Radiation on Intestines from Rectal Cancer Treatment

Hello everyone,

Forgive me for not sharing more about myself. I would like to ask if anyone can share their experience with long-term side effects of radiation treatment exposure to the intestines due to rectal cancer. I'm in my second week of treatment. I am curious to know what all people here have experienced months, if not years, down the road post-treatment. I'm really trying to understand what I could be facing. Having a full bladder to help "protect" my intestines has been a real challenge. Unfortunately, I'm not sure how much I can depend on it to be as full and as consistent as I want or need it to be. I'm looking at a permanent colostomy after 5 weeks of radiation and chemotherapy. My colon is, or was, healthy before treatment started. I'm really wanting to know how this will affect my colon and more post-treatment, as well as my new life and self with a permanent stoma. I hope what I am asking is clear. Thank you for sharing any tips or advice, but mainly your own experiences. And once again, excuse me if I don't respond right away or quickly.

Note to moderator: Please advise if there is a better place to post this. Thank you.

Hi and welcome to the site!

I had 6 weeks of radiation treatment for rectal cancer. I did not have a full bladder for treatments, although most other people seem to do this. It might be because the tumor invaded my bladder by the time of diagnosis.

I had my surgery with a permanent colostomy (and urostomy) 5 months ago. There was a lot of internal scarring that complicated the surgery. Otherwise, I have not noticed any long-term effects.

My colon seems to function about the same as it did before. Perhaps a bit more diarrhea, but I always tended that way.

Be sure to bring pads and a change of clothes with you to radiation appointments. I found the treatments gave me bad diarrhea and urgency that was tough to control. You will feel less anxious if you are prepared for an accident.

Why are you getting radiation?

He says rectal cancer. It's a pretty typical treatment for that.

Radiation followed by chemo shrunk mine from 12.5 cm to 4 cm... then it grew to 8 cm in 4 months (off treatment) that I waited for surgery. It was definitely working for me!

Our favorite mantra: everyone is different. So are our tumors. Maybe it did make your tumor angry.

Yes, I know that. However, if the person is going to end up with a permanent ostomy, why not just go in and cut the tumor out and be done, no radiation needed? See, I had the same stuff and was told before I started anything that I'd probably end up with an ostomy and a Barbie butt, but they wanted to try the radiation to see if it would possibly shrink it enough. Obviously, it didn't. Radiation is a very silent treatment, as in you don't see real side effects until the damage is done. So, for me, if I had known the long-lasting issues with radiation and my surgeon not giving me a 100% chance of it working, I would have just done the chemotherapy to make sure everything was killed off, but I wouldn't have agreed to the radiation knowing what I know now.

Everyone is different, and every tumor is different. In my case, I would not be here without both radiation and chemo. My tumor was inoperable, so it would have killed me. Damn near did kill me even with treatment to shrink it to an operable size.

He did NOT ask if he SHOULD get radiation. He asked about long-term effects. And you have written a novel about not liking radiation and wishing you had refused it, but not one word about what the long-term effects were for you.

Had he asked if he should, my advice would be to get a second opinion, then listen to the doctors. They know a hell of a lot more than we do.

So you still have your tumor, and you're doing treatments, or you're not doing treatments? If you went through radiation and it shrank your tumor but didn't get rid of it, then you still have it, correct? Five months is not long-term; I don't consider mine being done four years ago long-term. All I know is I still have the sunburned feeling, and I went through months of additional treatments to heal my radiation wound.

I had 46 rounds of Tomo radiation therapy for prostate cancer in July 2022. Tomo is very precise. It has a CT scanner built in. CT scan results direct the radiation course each time. Because internal organs move a bit day to day, aligning me on the table with just the tattoo dots and retention structure is only somewhat accurate. I hated having a full bladder.

Long-term effects for me: permanent tissue damage, basically impaired healing.

Three months after my radiation therapy, I had emergency exploratory surgery resulting in my colostomy. None of the surgeons wanted to do the surgery. They said they were all booked up. I'm F...ing dying, and they can't make time? Well... they knew I had radiation therapy. Finally, one surgeon said he would come in after his regular workday was over and do it. I did no prep or signed any paperwork. I told the doc I'd live with whatever had to be done. The first anesthesiologist declined to participate, so another was called in.

Several days after surgery, the bottom of my surgical cut, near my pelvis, popped open, even though it was held together by staples. It turned into a 1 1/2 inch diameter hole that leaked bloody fluid. I looked into a mirror... it went way back. I was worried the whole thing would pop open. With my surgeon's help, I did manage to slowly get it closed over a couple of months. The scar looks nasty.

Since I have reduced healing, I declined reversing my colostomy. Leaks were a possibility.

I completed 30 radiation treatments and 4 months of infusion chemo. That shrunk my 12.5 cm tumor to 4 cm. At 4 cm, the surgeons were willing to operate. In the 4 months I waited for surgery it grew back to 8 cm. Fortunately we didn't know that or my surgery might have been cancelled. They managed to get it out but the planned robotic surgery had to be scraped and sliced me wide open. 

The surgery was 5 months ago. I finished radiation 14 months ago. 

Radiation was done first because I was having so many symptoms. And it relieved or reduced most of the symptoms. I actually felt better. 

Chemo infusions gave me peripheral neuropathy that is ongoing and may be permanent. I need to use a walker and cannot drive because I cannot feel the pedals. 

I'm sorry you are still dealing with burns. Mine did get worse after I finished radiation. But they cleared up in about 6 weeks so I did not consider them long term for me. I haven't noticed any lingering effects besides the peripheral neuropathy caused by one of the chemo drugs and some surgical complications.. 

So, in the end, surgery is what got your tumor out, not the radiation. The radiation shrank it but didn't fix it, just like mine. I have the neuropathy too, better now than when it first started. I was told if it doesn't go away within 2 years, it's probably permanent. It's been right at 3 years now. Whether I can feel my feet or not, the sun is still out and the sky is still blue; might as well enjoy it. ☀️

Supposedly, since I did so many HBOT sessions to fix my radiation wound, they help with any future healing issues. Of course, I'll never know since I'm not going to have any issues until I'm like old.

HBOT was my next step if my surgical wound refused to close. I also refused reversal because I'm "done" with surgery. I'm lucky I survived all the past ones. Even luckier, I suffered no complications from chemo. Though, occasionally my wife says my brain is numb.

Nobody threatened me with HBOT. My body did a good job of healing, and my burns were never that bad. At last! I am better than someone! 🤣

My husband would say my brain has always been numb, so I can't say if it got worse. 🤣

I may have to have another surgery to fix the fistula, but I am all in favor of avoiding more surgeries. The last one was enough to last me a lifetime.

Missed this comment easier.

Yes, the surgery was what finally removed the tumor, but surgery was only possible because the radiation and chemo shrunk the tumor. So I'd say it was a team effort and not single out any one aspect.

Believe me, if surgery had been possible at the start, I would have done it in a heartbeat. I went to four different doctors trying to get it out. Every last doctor said no, the tumor is too large. The only choice I had was to take treatment or let the cancer kill me. And as sick as I was getting the last 2 months before treatment, I'd certainly be dead by now.

I'm very conscious that these things vary greatly. I would always advise a second opinion. People should ask questions and be proactive in their care. Remind doctors of pertinent details so the answers fit you. But, in the end, I follow 99% of all advice given.

Watch (use a mirror or have someone look) at your external skin. I had what you would call really severe sunburn. I'm not saying this will happen to you, just watch for it. There's no helping if it does happen, but good skin care will be needed.

Ask about internal issues like inflammation, proctitis, and what you can take, if anything, to alleviate pain or swelling. Look at food options to help inflammation and promote skin growth. Give yourself permission to feel awful. It is taxing, and it is okay to be tired and perhaps in pain. It will pass.