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Long-Term Effects from Abdominal/Pelvic Radiation?

whitneyd74's picture
whitneyd74
Posts: 9
Joined: Jan 2003

Hello all! I had radiation after chemo and a radical hysterectomy at 26. Therefore, radiation kicked my butt, and was the WORST part of treatment for me. I think because of the build-up of crap being done to my body. I'm now 28, and still have stomach problems! Particularly GI problems. Does anyone know of the long-term effects from abdominal/pelvic radiation?

Me and my GI-Tract thank you!!

Bon1978
Posts: 16
Joined: Nov 2003

WoW! Where do you want me to start? I also was scheduled to have a radical hysterectomey which was discontinued as a result of positive lymphnodes. I then went through chemo, external and internal radiation. As you mentioned, that was only the beginning of my problems. I have since developed radiation enteritis and multiple bowel obstructions. I was hospitalized on and off for over four months before my second surgery. The radiation has damaged my GI system terribly and my last hospitalization lasted for six weeks. I am finally able to eat again, but only a very restricted diet, I now have Short Bowel Syndrome,etc. etc. I could go on and on. BUt tell me how much do you really want to know, I don't want to scare you?! I was beginning to think I was the only one that had these problems from the radiation. I would love to help you in any way possible.

idbaker's picture
idbaker
Posts: 5
Joined: Jan 2004

Wow!! I was begining to think I was the only one with long term effects. I will get what looks like radiation burns still and it has been 6 years. Radiation was the hardest for me too. I can't been in the sun or my insides feel like they are on fire. and also if I take too hot of a bath. Has any one else had this problem?

Bon1978
Posts: 16
Joined: Nov 2003

I haven't been out in the sun too much since I finished radiation, but I do have that problem when I eat certain foods. I can't tell exactly what it is, because it happens at various times, and its not when I've eaten spicy foods or anything. But I also get that feeling that my insides are on fire and there is absolutely nothing I can do to stop it. Have you found anything that helps with that terrible burning sensation? I would love to know a cure!

jhopkins
Posts: 7
Joined: Jan 2006

I'm experiencing radiation proctitis now. Is there anything other than the suppositories that u found useful or helpful? Thanks.

jhopkins
Posts: 7
Joined: Jan 2006

I'm experiencing radiation proctitis now. Is there anything other than the suppositories that u found useful or helpful? Thanks.

35trees
Posts: 1
Joined: Aug 2010

Just found this website and am interested in anything you found when you posted. I know it's been a long time since then. My radiation was also a long time ago and it doesn't seem to matter what I try, nothing really works with regards to helping the GI issues. Am I to believe diet is to be what was "prescribed" during the time of treatment? Fruits, vegetable and whole grains pose a huge problem if eaten in any quantity. What do you eat then that is healthy. I have been using an imodium product daily and it helps a little but I can't actually really count on it. HELP!!!

bea-mil's picture
bea-mil
Posts: 106
Joined: Jun 2010

Gluten free diet is th best plus from natural point of view you can do oak bark-tea sitz bath and propolis suppositories.
I hope this helps.
Bea-Mil

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I had 28 rounds of pelvic radiation in summer of 2009 for Uterine Papillary Serous Carninoma (a rare aggressive form of uterine cancer). I celebrated my remission with a trip to Greece, Turkey & Italy and came home with some serious digestive issues that my oncologists and nutritionist attributed to a slightly delayed reaction to all of the pelvic radiation I'd had. I have always (life long) eaten a high-fiber diet heavy on fresh vegetables and fruits I grow myself organically. The nutritionist put me on a low-residue diet based on the B.R.A.T. diet (ripe Bananas, white Rice, Applesauce, unbuttered white Toast). In addition to this, she had me eat at least 1 tablespoon of organic yogurt daily and take a multiple vitamin and calcium as my only supplements. This was in direct opposition to the way I had always eaten, and I hated it, but within 3 weeks my bowels had settled down and I was able to start GRADUALLY adding back in higher fiber foods, one at a time in small quantities, until I was back to eating my daily spinach salads and whole grain breads, etc. Now, any time I have bouts of diahrea, I go back on the BRAT diet for a week or so, and I can get my bowels back to nearly normal and start the process again of re-introducing higher fiber foods. (Sweets still bother my digestion, so I eat those only in moderation).

I forgot to add that the nutritionist wanted me to have 2 packets of Carnation Instant Breakfast every day that I was on the BRAT diet, to provide protein for healing. Each day I mixed one envelope of it into a small container of Greek yogurt, making it into a really yummy dessert, not too sweet and almost like cheesecake in taste. In the evening I'd heat up a mug of milk in the microwave and stir an envelope of the chocolate flavor into that and it tasted just like hot chocolate. Those 2 'treats' made that diet less grim and more nutritionally balanced.

earthgirl
Posts: 1
Joined: Jun 2011

Thank you, Linda for your post. I am a little scared to be going through 5 wks of daily radiation, after my radical hysto (one lymph node came up positive) but your experience with B.R.A.T gives me one positive experience to reflect on.

Carolann

jmsaussy
Posts: 7
Joined: Aug 2011

earthgirl-

August 27, 2011 will be four years from my diagnosis of carcinosarcoma of the uterus at age 42 (rare aggressive) Total hysterectomy, 27 treatments of whole pelvic radiation (2 high dose vaginal cuff treatments), mets to my lungs in December 2007 (making me Stage 4), lung resection January 2008 followed by 6 months of chemotherapy (3 days inpatient every 21 days) and I am cancer free.
This is my first post: I was looking for common side effects of radiation because my GI tract has never been the same. However, all I have noticed is an increase transit time for anytime I eat meaning I have to have a bowel movement urgently. I have very occasional diarrhea if I overeat especially late at night but controlled with OTC anti-diarrheals. When I exercise especially running, I inevitably have to go to the bathroom on my return or have that urgency feeling. All of this seems a small price to pay to be cancer free now. I eat and drink whatever I want although I am not a huge sugar eater and fruits and veggies do not seem to bother me anymore than pasta and steak.
The biggest surprise I had was the need for a vaginal dilator which they failed to tell me until they released me on the last day of radiation. They told me intercourse was the best form of dilation, but using the dilator was important. I still have some discomfort in certain areas, but enjoy a healthy, fulfilling sex life. So....don't be too scared...there is a wonderful life after all this treatment. Female cancers are difficult to talk about in general conversation but I make it a point to share when placed in that situation as it is nothing to be embarrassed about and the more we demystify and talk openly about this topic the better....

kimmiehedg
Posts: 27
Joined: Nov 2012

I am feeling desperate in finding something to make my cancer go away.  Any advice you have would be SO helpful.

 

Thanks and glas to ehar you are doing so well!

magg1960
Posts: 9
Joined: Nov 2009

Hi I had cervical cancer in march of 2000 and it returned in 2007 I also had radiation and chemo...the burns were awful in my pelvic area I then got healed and painful dilation and then the doc did some biopsys on the outside and the skin would not heal afterwards.I then went into a hyperbaric chamber for the wounds.........The scar tissue healed and closed my vagina completely I have tried dilating but just hurts and doesnt do any good .Has anyone else had this problem? ..............Maggie

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Sorry to hear your having this issue...it's not like you haven't had enough to deal with already. Another sister posted recently stating that she stopped dilating and closed up too. Stated they did a procedure to re-open her and it's been rough. Recently, I moved into my own bedroom at my house...long story. I finally did find the long lost dilator, but that's as far as I've gotten. After reading about the consequences of abstinence...I guess I should put it on the high priority list. Intercourse has always been painful since the treatments, but the alternative of trying to banish the thoughts of cancer out of my head by refusing to dilate does not appear to be a well thought through move. Hang in there! Has your doc made any suggestions as how to remedy the situation?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Even if you are regularly sexually active, dilate daily starting immediately after brachytherapy and forever afterwards. You CAN have a normal healthy enjoyable sex life after radiation but you have to do your part and it's really no big deal to do. If you read about the other uses of vaginal dilators (tiny ones for little girls who have been raped and need to prevent scar tissue so that one day they can still be mothers; graduated ones to forceably 'craft' a vagina for girls born without one), you'll know that there are others with hurts bigger than the ones we share. It's humbling to know what others endure and that always re-sets my perspective on my own cancer journey. ((((hugs to all who suffer))))

flowerpower2's picture
flowerpower2
Posts: 4
Joined: Sep 2010

Hi Maggie, I also had cervical/vaginal cancer 2005, 2007 (spread to vulva), 2010 (lymphnodes in the groin) that was treated with radiation and chemo, no hysterectomy. I also had the same problem with using the dilator afterwards...it worked for a little while, but then the vaginal area started closing faster than I could keep up with dilating. Bit of a shock at first and I felt like the only person this must have happened to. Also, not an easy thing to talk about with others. You're not alone. ;-)

QueenieQQ
Posts: 1
Joined: Sep 2011

Age 49 I had 5 weeks of daily radiation through the back of my pelvis for stage 2/3 rectal cancer in 2001, a year of chemo and a rectal resection.
A Gluten free diet has solved most of my digestive problems. ( Though life without a rectum is challenging) GF diet has also relieved arthritis.
I was told that radiation destroys gluten receptors, and lactose receptors which sets up gut inflamation. Even a tiny bit of flour makes my lymph nodes ache.
I have done physical therapy, acupuncture, hands on healing and yoga for the past 9 years to combat the muscle stiffness and bone pain at the radiation site. It keeps me flexible but the pain has not diminished. Any thoughts?

ksrivard
Posts: 2
Joined: Dec 2006

I had frequent severe abdominal pain which started 6 months after treatment. I was having partial small bowel obstructions. The surgery plus radiation to to my abdomen did a lot of damage to my small bowel. I was diagnosed with radiation enteritis. I had to stop eating any fiber because that would consistently cause a small bowel obstruction. I was warned that surgery to fix the problem was very risky because irradiated tissue does not heal well. From Jan 2008 to June of 2011 I had 30 partial small bowel obstructions (PSBO). In April of this year I had a PSBO that didn't fully resolve so it lasted for about six weeks. As a result I finally chose to have surgery by an experienced colorectal surgeon at the University of Minnesota. He removed about 12 inches of small bowel and a little of my colon. He said that the part that he removed had been damaged by radiation and was no longer pliable enough to be effective in moving the contents of my intestines along so it would get stuck and back up resulting in my many partial small bowel obstructions. He also said that there were several strictures in the small bowel and an extensive web of scar tissue. The scar tissue was left alone because it will just grow back, as were the strictures.
The surgery was a success! I can now eat anything I want to and I have no more pain. I had difficulty with uncontrollable diarrhea at first but I now take imodium daily and I am pain free and can eat a normal diet.
Before the surgery I found that I hated to eat because eating often brought on symptoms and pain. If radiation enteritis is your problem, it can be fixed! It is important to have the surgery done by an experienced colorectal surgeon though. The gut is tricky to do surgery on and an irradiated bowel is trickier.
How are you doing now?
Katie

lukefisk
Posts: 1
Joined: Jan 2013

I know this is years later but for someone who stumbles on this as I did, I can answer the question about the bowels. I had mine tested. The nerve cluster that controls the bowels also controls the bladder. Anything that gets near the rectum is forced out at high speeds. Also with the bladder. One could try an Intersim Divice which did not work for me, but may for someone else. Also stay away from spicy and acidy and greasy foods. Especially the last. You can have them once in a great while, but don't over do it. The BRAT diet is for babies with diarrhea. The long term diet is the low residue diet. Some gastro guys will argue to be on high fiber, and maybe even your GP, but low residue does work the best. Remember when you want to eat too much of a good thing that diarrhea does not stay in a diaper. Just ask any new mother.

I believe the burning in the gut is from damage to the colon. I kind of know when I have to go from the pains I feel in my abdomen. It can be from an hour to a few minutes when it starts. After evacuating the pain fades away after a few minutes. There is no damage to the bladder itself, but sometimes it feels like that is where the pain is, or on one side or the other. I tell the doctors and they look at me like I am nuts, but many doctors don't understand radiation damage. 

I had anal cancer and came up totally incontinent from the radiation, and it has only gotten worse over the years. I was offered a catheter for the bladder and a colostomy for the bowels. Two problems with this. The radiation also caused a spontaneous hip fracture, so any infections go directly to the hip, and then they pull the replacement hip out until it heals and then put it back in. The catheter is always prone to infection. As for a colostomy, I am on the fence. The doc told me I would be trading one batch of troubles for another, and who knows what the radiation will do to my bowels down the road. A colostomy could make problems for repairing future damage. But it might not.

Next up is the scarring of the skin on the outside. Lately, and I don't know why, it had become unbelievably itchy. I don't have any diseases and I use non scented non soap cleanser on the skin. I bleed and am so sore. I went to a dermatologist who gave me some vasaline consistancy steroid gel, and that causes the toilet paper to stick, ball up into hard little wads, which causes more pain and bleeding from the friction. There has got to be a way to heal this scarring. Wearing pads all the time doesn't help, I am sure.

Because of the incontinence I don't sleep well, having to get up and change clothing a few times during the night. I am forgetful because of the lack of sleep. Also this has all caused the depression to get even worse. Good luck everyone.

HUB_KLS
Posts: 3
Joined: Jan 2013

I had 35 days of external beam radiation from Dec 2011 thru Jan 2012. A huge hard journey that really even the docs didn't prepare me very well for. But once it's over and you heal up you can get back to almost yourself. BRAT diet helped along with yogurt and flora-q supplements . Yes use the dialators and candidly talk with your docs. An active (as much as you can) sex life helps so much. Don't rush it, it will get better. 

I am 1 yr post rad, and whew doing so much better. 

Hang in there all, it can get better for you!

Kar1
Posts: 4
Joined: Sep 2010

Hello all!

I was diagnosed and treated for 2b cervical cancer in spring of 2010. Thankfully, since treatment, I have remained cancer free. My treatment did not include surgery, but consisted of chemo and radiation, including brachy. Treatment for me was very tough on my bladder and intestines. Things improved considerably after finishing treatment. However, I soon discovered that I had a very sensitive bladder requiring frequent and urgent trips to the bathroom. What worked for me is following the diet for interstitial cystitis. There is a community of people with sensitive bladders, but not necessarily from radiation. Following the same diet has allowed my bladder lining to heal. Although, I still have to limit spicy and acidic foods, my diet is not as restrictive as before. Currently, I still avoid coffee and fruit juices.  I can now tolerate some spice and tomato sauce and comfortably eat in restaurants , which I'm quite satisfied with. I've followed the diet for about 2 years now to get to this point. So be patient, healing is a slow process. Also, be sure to drink enough water. When you have to go frequently, the tendency is to drink less liquid, but that concentrates the irritants and causes you to go more frequently. So drink more water and keep the urine dilluted and less irritating. The diet can be found at: www.ic-diet.com

The other thing I've been dealing with is radiation effects of the intestines. Since treatment my digestive system has been much faster than before. Also, I've had diarhea more frequently. I've had trouble with eating in a restaurant,  Basically, 10 minutes from the time I stand up to leave the table, I need to urgently go to the bathroom. The timing causes this realization to be in the car, so obviously not a good situation. I've also had trouble with blood in the stool. I had a colonoscopy that couldn't be completed because the radiation narrowed turns that couldn't be navigated with the scope. Then I was sent for a barium enema, the same day, since the digestive system was already cleaned out. The doctors have confirmed that there is no cancer, but there are radiation effects. The best description I've gotten is that the blood vessels in the colon are no longer friable. This means the walls of the blood vessels are thin and don't seal well. So any irritation causes them to bleed easily. I seem to be able to minimize this by avoiding shredded wheat, a full salad as a meal (side salads are fine), spinach, spicy food or aspirin. After taking antibiotics for a UTI in October, I started having more trouble. Then in December, I had diarhea for about 10 days straight. My weight began dropping quickly, so I made an appointment with the same doctor that had done the colonoscopy. He recommended trying probiotics. I had tried yogurt before, but it only seemed to help with meal it was eaten with.  The doctor recommended Align. It's over the counter. I've used it for about 7 weeks now. It works great. My systems seems to function normally and consistently. No more surprises after eating out. Usually, I take Align once a day with the dinner meal. If I forget to take it, it takes about 3 days to get back to normal. What I've heard is that different people may do better with different probiotics, so it may be worth trying a different one, even if a certain one doesn't work for you. Also, I've heard that it's better to only take one type at a time, as they may not work, if the different types are competing with each other. By the way, carbonated beverages are something I have eliminated completely. One glass of pop is enough to make me miserable for at least 4 days.

Hope this is helpful to others and that everyone can find something that works for them.

DAJ11
Posts: 1
Joined: Nov 2013

Identified with uterine cancer May 2012 followed by hysterectomy.  Three doses of chemo, then 28 doses of radiation (two of those internal) then three more doses of chemo.  Chemo was not as bad as the radiation.  Last radiation Dec 2012.  Have had a couple episodes of painful gas/cramps, most recent (Nov 2013) ended up in the hospital for four days.  The doctor could not find a blockage that needed surgery, but said that my colon was swollen (a swollen colon, LoL!) He felt that it was due to having eaten some high-fiber foods. It didn't occur to me that it could be related to long term effects from the radiation.  Then I read the entries in this discussion board.  My question is are these episodes related to the radiation and are they going to continue to get worse??  And...what kind of doctor do I go see: a gastro-enterologist or the radiation doctor?

mmcia
Posts: 9
Joined: Feb 2013

I had 4 chemos and 31 sessions of radiation, and yes, it messes up your bowels. The radiation causes scarring but the chemo irritates all your mucous membranes, including your bowels. I went on a white rice based diet, very bland, an Oriental friend taught me how to make 'congee'. It took a year from my last treatment for the diarrhea to get better. At it's worse I went to the toilet every hour, now I only need to go a couple of times a day, no more gas or sudden eruptions. I hope your healing goes faster than mine, I love spicy food so I fell of the wagon often; if you watch what you eat you might recover faster. Also I found milk (my favorite food group) to be intolerable, I switched to unsweetened coconut milk and that made the biggest difference. I took probiotics in tablet form which also helped.

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