small bowel damage from radiation (radiation enteritis)

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small bowel damage from radiation (radiation enteritis)

by dalimama on Thu Aug 28, 2008 12:00 AM

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I am searching for anyone who has experienced small bowel damage from radiation therapy. I was diagnosed with uterine cancer in 9/05. Had radical hysterectomy followed by 6 weeks of radiation to the pelvis and abdomen. then had chemo. Just a few weeks after chemo, side effects from radiation began. Over the past 2 and a half years I have suffered from severe bloating, vomiting, diarrhea, cramping, weight loss, partial blockage of my small bowel resulting in hospital stays for bowel rest and TPN (intraveinous nutrition via PICC line or port). I have difficulty eating due to bloating and can't maintain enough calories to keep weight up.

Am now considering surgery - small bowel resection. Am concerned that the damage is extensive and the surgery may make my quality of life worse than it is now. I am grateful to be alive, but just can't comprehend that there's no one out there who is trying to help us survivors survive the treatments prescribed. I am at my wit's end. Please respond with any stories and suggestions. Thank you,

RE: small bowel damage from radiation (radiation enteritis)

by angel2be on Fri Feb 06, 2009 12:00 AM

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Hello I am also a cancer survivor.  I had rectal cancer almost 21 years ago and had radiation and chemotherapy. The radiation burnt my pelvic bone and I also have small bowel damage. I live in Michigan and have been searching for years to get help with bowel obstructions due to radiation damage to my small bowel.  I have had over 20 partial bowel obstructions since having rectal and bowel surgery for my cancer. I know exactly what you are going through. I have had many of your symptoms and have just found a doctor who is willing to listen to me and is willing to help me.  I am also contemplating surgery very soon.  The doctor wants to do exploratory surgery so he can remove any radiation damage if he finds it and he says it will stop my obstructions from happening.  From my history and some testing he did on me he feels that I have radiation damage to the small intestines, but the only way he will know what he can do is to do an exploratory surgery to correct the problem.  I feel for you, I have been in and out of the hospital for the last 20 years with bowel obstructions and it is very frustrating along with the other symptoms I have, like bouts of diaherria, I too went through not being able to gain weight, cramping alot, they even felt I wasn't getting enough protein.  It has taken years to get to where I am by trial and error with foods.  There was a time I didn't know what I could eat and not have a problem.  I wish you well my friend. If you would like to talk or e-mail me, please feel  free to respond.

RE: small bowel damage from radiation (radiation enteritis)

by JC1018 on Sun Feb 15, 2009 12:00 AM

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I am a 49 yr old that had vaginal cancer 3.5 yrs ago. I was treated with chemo and radiation. My cancer responded well to the treatment, but the radiation damage has turned out to be a worse ordeal now, as it seems it does not want to go away. I had sacrel fractures from the radiation and then found a had severe osteoporsis which was radiation induced. The fractures healed in a few months and I went on thinking I was doing great, but nine months after radiation ended I began having severe abdominal pain, nausea and vomiting bouts that lasted anywhere from 2 to 16 hours. They come and go very intermittantly, never knowing exactly what will set it off. I have been hospitalized twice and made proabably 8 to 10 trips to the ER with vomiting that just would not stop. The symptoms disappear within a day or two. Usually my abdomen which is usually distended will remain tender a few days. I have no symtoms in between these attacks and am otherwise active and healthy. I have found that high fiber foods are a big no for me, if I eat bland foods what would be considered an unhealthy diet for most and with that  I do much better. I was put on a steroid last year called Entocort which I took 9mg a day for 1 full year until I obstructed again last month. This is a drug only intended for several months at a time, but I could not come off it without issues. For the first time in 3.5 yrs. they captured the small bowel obstruction in a CT film last month. I was excited thinking I could have that section removed and go on to be normal again, but the surgeon I visited twice was very discouraging, he said we could do a laproscopic exploratory surgery but he may or may not find any one section he can remove. It seems like such an iffy toss up, I have opted to try and heal some more on my own. I have been scoped and scanned to pieces and have swallowed the camera pill twice. Never has anything been found until last month, my gastroenterologist has been stumped, he knows I have intermittant bowel obstructions, but never been able to find just where. The camera pill revealed ulcerations and narrowings, but does not tell them where. Prior to radiation/cancer, I was extremely healthy, never had stomach or digestive issues.  I underwent hyperbaric oxygen therapy this past year also. I had 60 treatments in high hopes of healing my body. I can see some healing from that in the pelvic region, internal & external, but the intestine still has a way to go. I was told the streroid I was on could be hindering healing as steroids do, so I am off that now just in case I need surgery and in hopes the hyperbaric treatment will continue healing. I have been wondering if anyone else suffered from this sort of damage and interested in knowing whatever you had tried and found to work or information your doctors are giving you. My doctors are not giving me anything really. No one seems to know anything and I know there just has to be a doctor out there that knows something about this, what can help, like diet, natural herbs or remedies or any other medical treatments. I would really love to eat a salad again! I wish you the best in getting help and healing. Please email anytime.

JC

RE: small bowel damage from radiation (radiation enteritis)

by dalimama on Mon Feb 16, 2009 12:00 AM

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Dear JC, I know exactly what you are going through. I've tried everything, including hyperbaric chamber therapy. I think that helped with the constant diarrhea, but not much else. Yoga sometimes helped. Certain positions I think helped get things moving or at least relaxed me. I also tried massage. One person seemed to work wonders, but I couldn't get consistent appointments. the other person made me feel worse. So if you try it make sure they are familiar with bowel obstructions. Acupuncture seemed to help for awhile. Especially if I watched my diet. I cut out everything - sugar, wheat, alcohol, processed meats. Tried protein shakes, etc. Of course I felt better then, because I wasn't eating! Lost too much weight and doctors freaked out and put me on TPN (intraveinous feeding via a port in my chest). Would still have problems and every time it took longer to get rid of bloating and cramping. Also tried hypnosis/sensory imagery and an anti-depressant. I was told it would help send message signals from the brain to the gut. Your gut is considered like a second brain. I was also very depressed with the situation. I do believe it helped somewhat. Whenever the cramping/bloating would start, anxiety would kick in and make it worse. So, I would take attivan to help calm myself down, then listen to hypnosis tapes to relax. It would take about an hour, but would help. I also met with a clinical psychologist in the gastroenterology department once a week. When I would have a bout, would switch to a liquid/clear diet till it got better. As time went on, it took longer and longer to get better. Eventually, I couldn't take it and met with 3 different surgeons. I am "fortunate" in the sense that my obstruction was clearly viewed on ct scans and small bowel x-rays. My original surgeon (gynocological) said she could do the surgery and would ask another surgeon from the hospital to assist. Neither were experts in colorectal surgeries. I just didn't get a positive vibe from her. She saved my life from the uterine cancer, but I felt it was time to move on. Met with another guy, but he seemed so clinical and again didn't instill enough confidence in me. I knew they couldn't guarantee success or the fact that I might need a bag temporarily or permanently, but I just wasn't convinced. Met with the 3rd surgeon and his first question was why did I wait so long? I started to cry and said I don't know. I knew the first year, they didn't suggest surgery because of radiation damage and that I might not heal properly. 2nd and 3rd year I kept trying anything to avoid surgery. Every time I suggested something to my doctors they would just shrug and say, "you could try that. Don't know if it will work." Not once did they tell me that nothing would fix it. It might alleviate symptoms, but never fix it. That's what the 3rd surgeon told me. He wiped away my tears, patted me on the forehead and told me he could fix it. Surgery was scheduled within the month. I went to the hospital early due to an infection in my port. While in the ER experienced severe pain in the abdomen. They gave me heavy duty pain killers, nothing helped. Finally put a tube in my nose and down my throat. I began throwing up and it continued for a long time. The nurses couldn't believe how much came up. I had been bloated for days and would begin each day by vomiting. Once the vomiting stopped in the ER I felt so much better. Kept the tube in for about day and half. Begged them to take out finally did. Stayed in the hospital to get rid of infection so I could keep scheduled surgery date. Had surgery and 8 inches of small bowel was removed. I also had part of my transverse colon and right colon removed as I have a genetic gene deletion that predisposes me to colon cancer (uterine is a secondary, just got that first!). Mother and sister had colon cancer. I was eating by week's end. That was early October. have not thrown up since that day in the ER and have had no cramping or bloating. Ate a huge bucket of popcorn today with my daughter. (I ate most!) Have had a salad, just a little harder to digest raw veggies. My stools are still very loose, but it is manageable. I am told it could take 6 mos. to a year for it for it to be more formed. It's a drag, but at least I have my life back and have gained about 25lbs back. I was down to 91lbs. go talk to different surgeons at different hospitals. Make sure they are colorectal surgeons and see if they are familiar with radiation enteritis and bowel obstructions. During the surgery, he took an instrument and ran it through my entire small bowel to ensure there were no other obstructions. he said I was not a good candidate for laproscopic surgery. That it was best to get in there and look at everything. After everything you've been through, you need someone who understands your battle. There is no guarantee that I might have another blockage down the road. Radiation is the gift that keeps on giving! However, I will never wait that long again. Not sure where you are located. If in the midwest, my doctor is at Rush - Dr. Saclarides. He came highly recommended by many friends and different therapists. If you have any more questions, let me know. No one should have to suffer like that. I'm grateful I'm alive, but to be honest I'm pissed that no one is out there trying to figure out how to help people like us once they've killed all the cancer as well as the good cells. There are too many of us out here for our doctors not to know what works and what doesn't. Good luck. Please keep me posted.

On 2/15/2009 JC1018 wrote:

I am a 49 yr old that had vaginal cancer 3.5 yrs ago. I was treated with chemo and radiation. My cancer responded well to the treatment, but the radiation damage has turned out to be a worse ordeal now, as it seems it does not want to go away. I had sacrel fractures from the radiation and then found a had severe osteoporsis which was radiation induced. The fractures healed in a few months and I went on thinking I was doing great, but nine months after radiation ended I began having severe abdominal pain, nausea and vomiting bouts that lasted anywhere from 2 to 16 hours. They come and go very intermittantly, never knowing exactly what will set it off. I have been hospitalized twice and made proabably 8 to 10 trips to the ER with vomiting that just would not stop. The symptoms disappear within a day or two. Usually my abdomen which is usually distended will remain tender a few days. I have no symtoms in between these attacks and am otherwise active and healthy. I have found that high fiber foods are a big no for me, if I eat bland foods what would be considered an unhealthy diet for most and with that  I do much better. I was put on a steroid last year called Entocort which I took 9mg a day for 1 full year until I obstructed again last month. This is a drug only intended for several months at a time, but I could not come off it without issues. For the first time in 3.5 yrs. they captured the small bowel obstruction in a CT film last month. I was excited thinking I could have that section removed and go on to be normal again, but the surgeon I visited twice was very discouraging, he said we could do a laproscopic exploratory surgery but he may or may not find any one section he can remove. It seems like such an iffy toss up, I have opted to try and heal some more on my own. I have been scoped and scanned to pieces and have swallowed the camera pill twice. Never has anything been found until last month, my gastroenterologist has been stumped, he knows I have intermittant bowel obstructions, but never been able to find just where. The camera pill revealed ulcerations and narrowings, but does not tell them where. Prior to radiation/cancer, I was extremely healthy, never had stomach or digestive issues.  I underwent hyperbaric oxygen therapy this past year also. I had 60 treatments in high hopes of healing my body. I can see some healing from that in the pelvic region, internal & external, but the intestine still has a way to go. I was told the streroid I was on could be hindering healing as steroids do, so I am off that now just in case I need surgery and in hopes the hyperbaric treatment will continue healing. I have been wondering if anyone else suffered from this sort of damage and interested in knowing whatever you had tried and found to work or information your doctors are giving you. My doctors are not giving me anything really. No one seems to know anything and I know there just has to be a doctor out there that knows something about this, what can help, like diet, natural herbs or remedies or any other medical treatments. I would really love to eat a salad again! I wish you the best in getting help and healing. Please email anytime.

JC


RE: small bowel damage from radiation (radiation enteritis)

by mountains on Wed Apr 08, 2009 12:00 AM

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I had radiation treatments years ago, its caused alot of permanent damage. Im having more help from herbal products, instead of clinical.

Alot of these radiation treatments should be done away with, theyre too damaging and alot of people dont know that before they take the treatments.

RE: small bowel damage from radiation (radiation enteritis)

by JenniferDM on Sun Apr 12, 2009 12:00 AM

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I came online tonight to try and find some herbal or homeopathic remedies for my father, who is suffering from radiation enteritis. If you wouldn't mind sharing what has worked for you, I would love to hear more. Thanks!

RE: small bowel damage from radiation (radiation enteritis)

by his_baby on Fri Apr 17, 2009 12:00 AM

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On 4/8/2009 mountains wrote:

I had radiation treatments years ago, its caused alot of permanent damage. Im having more help from herbal products, instead of clinical.

Alot of these radiation treatments should be done away with, theyre too damaging and alot of people dont know that before they take the treatments.


hi and thank you for being here.  i too am suffering with RE and wonder what herbal products have been of help to you.  thanks in advance.

RE: small bowel damage from radiation (radiation enteritis)

by oregon_girl on Fri Sep 11, 2009 12:00 AM

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i also have small bowel damage to radation treatments from endrometrail cancer.they said it is radation entrinitus and not much can be done. i went through 3 months of throwing up and couldnt eat or drink i lost lots of weight i went from  150lbs down to 122 and was put into the hospital 3 times before  i finally had a surgeon step in and say something had to be tried  at least as i was litterally dieing.im 57 years old.. the surgeon removed some of my bowel  right at the  joining area of the small and large bowel.i am no longer  throwing up its been since easter in april when i had the sugery about 6 months now im doing alot better but now i have bleeding from the rectal area and they feel its from the entrinitus and not much they feel they can do. when they did the sugery they also pealed off some of the burned tissue of entrinitius they are hopeing i might not have any more problems for a few years at least but they cant guarentee it.i am eating again and gained back 7 pounds i do have to be careful what i eat however as soe things bother me and i bloat get gas real bad and i do have the  bowel problems of having to go to the bathroom often some days its good and others its hard. i also have developed an urge to  pee more often.and have to wear a pad sometimes even depends. im so mad at cancer centers of america because i think radation needs to stop until they can find a way to help people like us yes they cure the cancer i give them that as i no longer have cancer but i do have the symptoms of what comes after  and it seems they have NO real way of taking care of this stuff. my surgon said she  dosent like it either as way to many of us get dumped on emergency rooms and the Dr's cant help so most of us do die.my Cancer dr went into denial he flat out told me i didnt have entrinitius but then later after the sugery he appoligized in some small way saying he really didnt know much about this as he wasnt trainned in it only on how to get rid of the cancer. he is trying to help me now the best he can.i have heard herbs help some peole and i wans wondering which ones to try if any one of you know or have done so please let me know.. im going to look for an  herbioligist an dif i find out anyting i will post it.. thanks for listening to my story and im so glad i found this group as i have looked all over the net trying to find someting to help  and im glad i found out im not alone in this tortue even though i wish you were not going through it either..may god bless you all and may he give us they answers we need to help others....

RE: small bowel damage from radiation (radiation enteritis)

by oregon_girl on Fri Sep 11, 2009 12:00 AM

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please can you tell me what herbs have helped you soi may try them also, feel free to email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 place small bowel damage in the mesage line  thank you any help  is appreciated.

RE: small bowel damage from radiation (radiation enteritis)

by oregon_girl on Fri Sep 11, 2009 12:00 AM

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I totally agree with you.....

On 4/8/2009 mountains wrote:

I had radiation treatments years ago, its caused alot of permanent damage. Im having more help from herbal products, instead of clinical.

Alot of these radiation treatments should be done away with, theyre too damaging and alot of people dont know that before they take the treatments.


 

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