small bowel damage from radiation (radiation enteritis)

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RE: small bowel damage from radiation (radiation enteritis)

by dizjan on Wed Dec 08, 2010 09:57 PM

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On Apr 08, 2010 12:15 AM stanzie wrote:

On Feb 15, 2009 12:00 AM 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

JC I have exactly the same disease  as you. We need to talk. My sister`s initial are JC. I had Euteren cancer 2003. Radiation Enteritis is my cure. I am in the hospital now writing you. I am facing the same situation as you. Please call me or allow me to call you. I am a single woman who owns a B&B in Birchwood WI. My number is --Message edited by CancerCompass staff. For personal protection, email address and phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

I found this site today and got really excited.  I went through radiation and chemo for cervical cancer. Have suffered severe stomach problems since which are getting worse.  Had come to the conclussion needed to see a gasterologist.  Finally came to the conclussion I had become milt intolerant(everything I've eaten lately had milk in it and shortly after sick) Was looking it up on the computer and saw a link leading to this.  It sounds exactly like what I am experiencing. I would love to talk to others (email, phone) just let me know

Thanks

RE: small bowel damage from radiation (radiation enteritis)

by Abbala on Fri Dec 24, 2010 08:47 PM

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I have to take radiation treatments starting next week to shrink a mass of lymph nodes in my right groin area. The doctor said that I could expect side effects like diarrehea. So I have been doing some research as to what to eat and not eat to avoid some of the misery I have been reading about here. A Low Fiber, Low Residue Diet is a must right from the start of treatments (available on line). Nutmeg is recommended to sprinkle on foods to lessen the motility of the GA tract--available in grocery stores. Also, I can recommend Aloe Vera Gel (Lily of the Desert) to sooth and heal the GA tract and bowel--available at health food stores. Just read direction on the bottle and start slow to see how you like it. It worked for me when I had a diverticulitis problems years ago.

Abbala

 

RE: small bowel damage from radiation (radiation enteritis)

by AnnieGamm on Mon Dec 27, 2010 11:20 PM

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I too have radiation enteritis, a result of radiation damage to treat rectal cancer three years ago.  It caused an obstructed bowel two years ago, when 12 inches of my small intestines had to be cut out after becoming necrotic (dead).  After the surgery, I had uncontrolled diarrhea and abdominal pain, but my gastroenterologist in El Paso didn't know how to treat me, so I was referred to the M.D. Anderson Cancer Center in Houston to get a good diagnosis of what was wrong.  After thorough testing, they said it was radiation enteritis, a typical side effect of radiation.  They said if they had treated my cancer, they would have radiated me before performing surgery, since the colon surgery to remove the cancerous tumor (colectomy) was what had caused my small bowels to shift and become wedged between my pelvic bones, where the radiation had been aimed.  The Houston gastroenterologist recommended that I be put on a special diet (the ileostomy diet) and could use tincture of opium to control the diarrhea.  I used that drug for four months but started to get an obstruction again and didn't want more surgery.  On the advice of my gynocologist, I went to a colorectal surgeon, who told me this condition was permanent and would never heal.  He modified my diet to cut out all meat and include only soft foods, such as soup and mashed potatoes.  He also took me off the opium and put me on Lonox (Lomotil, or diphenhydrate with atropene), which worked much better for me.  After several months, I was tired of the strict diet and went to see a colorectal surgeon at the Mayo Clinic in hopes that he could give me better news.  He agreed with what my El Paso colorectal surgeon had said but told me that if I could get a CT scan while I was having the severe abdominal spasms and send him the test results, he may be able to see something that would help him determine if there was a way to surgically fix the problem or at least make it better.  Unfortunately (or maybe that's a good thing), I have not had spasms that last long enough for me to get to an emergency room and have an emergency CT scan.  That would probably take more than 2 hours, depending on how backed up the emergency room was.  So far, the spasms haven't lasted more than a few hours at a time, although I have them almost daily.  Some days the pain is quite severe, so I take oxycodone, and it usually helps me function.  Since that time, I have been seeing the El Paso surgeon about every three months.  He told me he has about 9 other patients who have the same problems I have, and when they don't stay on the strict diet, they end up in the hospital.  During my last visit, he told me I could try adding a little bit of fish or ground meat to the diet, and that has worked well thus far.  It helps me feel less deprived, and I have actually been gaining some weight.  However, I have to watch how much I eat in one sitting.  Eating small meals several times a day works best.  A friend of mine has had bowel problems her whole life and has had several surgeries, but she said they have not really helped.  The more of the intestines that is cut out, the more often you will have to have BMs, which gets very painful after the first 10 or more.  This is called "short-bowel syndrome," which I have because 2 feet of my intestines have been surgically removed.  I also have irritable-bowel syndrome, which also causes frequent diarrhea.  At least I can control it now with the Lonox.  I doubt that I should have more surgery, because from what others have told me, that could make things worse--not better.  Feel free to send me a private e-mail if you want to discuss this further.  I will be glad to share what I have learned over the past few years.   

Radiation damage after cervical cancer treatment

by conniep on Thu Jan 20, 2011 06:20 PM

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To dizjan, I went through treatment for cervical cancer summer of 2009.  It wasn't until Jan. 2010, that I thought I was getting an ulcer.  The discomfort was just below my diaphram.  Personal physician ordered prescription antacids, another doc said he'd give me a colonoscopy if I really wanted one, but didn't think it was necessary.  (none of these were oncologists, but knew I had treatment).  By August a colonoscopy was 'attempted'.  I had such severe protistis, that he couldn't even get the scope 'up there'.  On to a gastrologist, who seems to know what he's doing. 

I too became lactose intollerant.  I use Digestive Advantage for Lactose Intollerance.  Only have to take once a day.  Works fine. 

DON'T WAIT!  The longer you go undiagnosed, the harder it is to fix.  Do you have blood in your stool yet?  You should have them do a stool sample.  Mine started with only microscopic blood in the stool...now it's blood every day, and I have had 4 'flexible sigmoid colonoscopies', to repair the open vessels.  Did you have a hysterectomy?  I didn't and that was a good thing....protected the small intestine.  I hope others can offer some help with food, treatments, etc.  Good luck!

RE: small bowel damage from radiation (radiation enteritis)

by flipjane on Mon Jan 24, 2011 03:28 PM

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Hello

I understand completely and my advice to you is do not leave it too long as I tried to manage this myself and left it so late that I was admitted to emergeny and my bowel had collapsed to the size of a pin head, I was vomiting faecies and in horrific pain and discomfort. I had  a foot of my illeum removed and my bowel resected. Afterwards I was a lot better though I still had the diarrhea, bloating but alive. I just never go any where without knowing where the loo is.

I had a hystorectomy in 2001,cancer was found and I was sent to have a Pelvic clearance for endeno cancer of cervix (it had spread to my uterus and ovaries) I had a clot on my lung following this surgery and then cellulitus in my whole leg due to infection. I also had radiotherapy and chemo.

After recovering from this I thought I was on my way to a normal life again- wrong, the damage from the radiotherapy was starting to cause me discomfort- radiation proctitis,bloating, continual diarrhea and eating was not a prority as i felt ill all the time. I did not know what was wrong and hate going to doctors unless I am near death so plodded along. Then in 2003 I reached my limit-  after vomiting faecies, and my stomach being distended I broke down and begged my family to take me to emergeny. There they discovered my bowel had collapsed and the opening was only the size of a pin head- hence surgery was the only answer before my bowel perforated. They removed a foot of my illeum (small bowel) and were able to resect (this is an unknown as they never know what they will find till they open you when you have had radiotherapy). All in all that Op was fine, I still had the diarrhea and bloating and have resigned myself to that for life. I have noticed over the last 12 months though things were starting to get worse again (this is now 9 years after my initial surgery) I have just had another MRI and they have found a 5cm stricture in the large bowel and another 2cm one in the small bowel. My specialist has told me that the effects and damage from radiotherapy can continue for up 20 years afterwards. I know I will eventually have to have another resection but will just plod along for a while as this time I will probably end up with a temp bag to allow it to heal properly, as it is such a long recovery I will just keep going till I can stand it no more though this time I will not let it get to the vomiting stage. I have become lactose intollerant, and can honestly say that I would rather not eat at all.

I feel for you as no one told me the side effects before I had it though at the time you dont have a choice anyway. My only concern is that if I was aware of the side effects I would have gone to the doctor sooner instead I came very close to death. This time i know what is happening and have followed it up and will  now just manage it till I have no choice. I do not lose weight though, as i just continually feel bloated and uncomfortable. I hqve learnt to manage the bloating with charcoal tablets and also three different types of antibiotics on a regular basis.

RE: small bowel damage from radiation (radiation enteritis)

by dizjan on Thu Feb 17, 2011 07:14 PM

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Well after finding this site I started checking into this radiation enteristis.  I have found my miracle.  After I had colon surgery my doctor had told me I would need to take fiber every day and then a friend of my mothers had gone to mayo clinic and was told to try fiber (benefiber) and found great relief from the loose stools after eating.  So I went out and purchased a bottle of the powder of benefiber and I put two tsps in my coffee in the morning and then drink it at dinner and it has helped me tremedous and I can now eat without running to the bathroom.  Just a suggestion.

RE: small bowel damage from radiation (radiation enteritis)

by gypsy1021 on Sat Feb 26, 2011 08:16 AM

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I am so happy to have found this particular topic, but discouraged because everything I've read on here and things I've found while researching the internet have indicated that there is no cure.

Like most of you I was not informed about the side effects of radiation before I had 25 external and 5 weeks of internal therapy treatments for endocervical adenocarcinoma during the summer of 2008.  Everything was fine until January 2009 when the bloating, pain, and uncontrolled diarrhea began.  I had no idea what was wrong until I asked the oncology/gynecologist if it could possibly be the radiation.  He told me it might be and if it was that I'd have to learn to deal with it for a long time... that it might clear up on it's own. And that was pretty much it. 

Now, the cancer medication that they want me to take for the next 5 years after my mastectomy for invasive ductal carcinoma in October 2010 causes nausea, vomiting and severe stomach upset, in addition to the problems I have from radiation-induced enteritis.  These have apparently caused major issues with diabetes which, prior to 6 months ago, was under control.  The doc quadrupled my diabetes med and that also made the vomiting/diarrhea worse.  Then I met with a diabetes educator and she gave me a list of foods that I should eat, only I can't tolerate them because of the enteritis which is progressively getting worse.

Just shoot me now and put me out of this misery.  Not really guys, but sometimes I feel like that.  The oncologist gave me a 2 week holiday from the cancer med and the vomiting stopped.. still have nausea and diarrhea, but it's been a real joy not to throw up every day, but I only have a week to go.

I will try some of the suggestions you've provided and really pray that they give me some relief.  I wouldn't wish this crap on my worst enemies!

Thank you,

Linda

RE: small bowel damage from radiation (radiation enteritis)

by weston2011 on Sat May 14, 2011 01:33 AM

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I have something that you guys can try. It is based on regular foods but works just as well.

- seaweed, mushroom, Sichuan pepper, ginger

Just cook the above however you want and adjust taste according to your liking.

It will soften/moist the hardened/damaged the small bowel.

RE: small bowel damage from radiation (radiation enteritis)

by Pattieb on Sun May 15, 2011 08:43 PM

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On Aug 28, 2008 12:00 AM dalimama wrote:

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,

I too had uterine cancer and then 6 weeks of internal radiation. A few years after the radiation I started having bowel problems. Not being able to go to the bathroom very well. Years later it put me face down. I was at my wits end. My cancer Dr blew me off.  I then went to a colon specialist..she referred me to the UW. What happened is the muscles of my colon were fried due to the radiation. The result is the muscles in the colon not working properly. The Dr at the UW did an inner stem inplant. That is used for women that have urinary problems. What it did to help me is the have the nevers in my sacral nerve hooked up to an inner wire and pace maker. It has helped me about 70%, I still have problems and know it is now a life time problem. My cancer Dr nor where I had the radiation allerted me that I could have future problems. I am still searching for a better solution.

RE: small bowel damage from radiation (radiation enteritis)

by bregar on Sat Jun 25, 2011 09:09 PM

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I also have been looking for answers. This is my second time with cancer first was breast. Six years later i ended up with colon cancer. I wasn't to good with therapy and radiation this time. I had alot of side effects. Diarrhea is one of the biggest ones weight loss is another. Unable to eat, i'm in the bathroom 13minutes after i eat getting stomach pain, diarrhea, sometimes i do vomit. I ended up only weighting 86 lbs. From 174lbs. In jan 2010 i just keep going down. I was on tpn from jan.2011 until may 2011

Also i had a small bowel obstruction in oct.2010 that is when my problems went out of control.'

I did have colon resection when i was dx. With the colon cancer in jan 2010.'

Also i'm unable to have sex with my husband it seems like i have no opening in to my pelvic area?

Going to doctor this coming week and going to ask to go to the digestive center, they may have some kind of answers for me.

Some days in the bathroom i feel as i am just going to die. And some days i just wouldn't care and i am not like that i think it just is to much.

I hope that you can email me back  i'm sorry that you feel that way, but i just felt like i was the only one for the longest time..

Did you ever here of a thing called drops after chemo and radiation? Someone just said it sounded like i have that(going to look it up) and see what it is.

Take care bregar

 

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