small bowel damage from radiation (radiation enteritis)

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RE: small bowel damage from radiation (radiation enteritis)

by Mandy1234 on Mon Feb 18, 2013 11:43 PM

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Mary Lou , I have a support  Group," share your cancer stories', if you would like to talk about your cancer . Barb B.

RE: small bowel damage from radiation (radiation enteritis)

by stanzie on Tue Feb 19, 2013 05:39 PM

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On Feb 18, 2013 11:43 PM Boudreault wrote:

Mary Lou , I have a support  Group," share your cancer stories', if you would like to talk about your cancer . Barb B.

I may of missed something, but I will await for a response on where to join.

RE: small bowel damage from radiation (radiation enteritis)

by Jen0529 on Tue May 14, 2013 01:45 AM

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I also had cervical cancer with radiation and chemotherapy. I have to admit that although I knew and felt the affects of radiation at the time, I did not know how much it would affect my life on a daily basis. I agree with you of always having to know where the nearest toilet is located or sometimes even worse having accidents. It makes me feel like a child. Worse yet is that I too feel like doctors just dont seem to take seriously how life altering this can be. I hope to find a treatment for it someday and I wont give up trying but sometimes it just feels hopeless.

RE: small bowel damage from radiation (radiation enteritis)

by Marshajp on Tue May 14, 2013 03:41 AM

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I'm so sorry, it is life altering and because we don't have obvious signs of illness people don't understand. I have  been having worst problems after 7 yrs so I started reading medical reports and prognosis "no cure". I do lots of searching when I feel bad, and I don't see where resection ends all problems just some and adds some? Anyone have input on this?

I am always scared  that I might get another blockage,abcess,fistula and need surgery and to pay for that I loose my house. I can't get to Artist Markets to sell my art because of bathroom issues. I also read malnutrion and related diseases are problems, I know my energy level is getting pretty low also.

Try not to blame yourself for food choices,everyday I would blame it on what I ate the day before and think I could change it. It never mattered and now  I barely eat anything and am loosing my appetite because everything makes it hurt.

I was offered Vicodan by all the Mds I complained to even I though I am a recovered alcoholic. I took that for 5 years with not much change. I stopped because getting addicted to a narcotic could only add to the mess. I wish I could tell you a cure, try to not let it take over, when I can I do as much as I can and some days are no go. It's not easy to lose days but don't focus on it do what you can. Take care

 

RE: small bowel damage from radiation (radiation enteritis)

by stanzie on Tue May 14, 2013 01:33 PM

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I too am a recovering alcoholic. I am having my birthday in a couple of weeks. 22 years of sobriety. I do take percocet. It is not the worst thing. For Me! You should call me sometime so we can talk. 715-354-3494. It would be nice to talk to someone with the disease to relate too. I may be able to suggest some things. I have had radiation enteritis for 10 years now. Along with a new disease each year. Pleaase call. I think it would be helpful for us both. Mary Lou

RE: small bowel damage from radiation (radiation enteritis)

by stanzie on Tue May 14, 2013 01:33 PM

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I too am a recovering alcoholic. I am having my birthday in a couple of weeks. 22 years of sobriety. I do take percocet. It is not the worst thing. For Me! You should call me sometime so we can talk. 715-354-3494. It would be nice to talk to someone with the disease to relate too. I may be able to suggest some things. I have had radiation enteritis for 10 years now. Along with a new disease each year. Pleaase call. I think it would be helpful for us both. Mary Lou

RE: small bowel damage from radiation (radiation enteritis)

by stanzie on Tue May 14, 2013 01:37 PM

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where is the support group?

RE: small bowel damage from radiation (radiation enteritis)

by pattyjean1957 on Mon May 27, 2013 05:36 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 also had Uterine cancer in 1993. The intensive radiation left me with radiation enteritis. I suffered with the bowel obstruction for 20 years, due to the fact they didn't protect my organs while radiating. My gastroenterologist tried everything for years. Between the diarrhea and vomiting I  have been in pain for years.  They finally did surgery to removed 2 feet of intestines along with a part of my colon and rehooked everything back up.

Now the vomiting and pain is gone, but the diarrhea is out of control. Nothing and nobody is helping. What is left? A colostomy bag????? I'm 55 and I can't eat hardly. I have lost 20 pounds and am still losing.

I see "stanzie" you are from WI, so am I. I have an appointment in Milwaukee, at Froedert to see a specialist but that won't be till September. Does anyone have any suggestions on what to do or what kind of Dr. to see? I am at wits end.

thanks all

RE: small bowel damage from radiation (radiation enteritis)

by beejaypea on Mon May 27, 2013 06:16 PM

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Hello

My husband is a colon cancer survivor but also has radiation enteritis as a result from his radiation treatment.  We saw an oncology surgeon a few months ago and he suggested a drug called octreatide, which is an injection.  It treats short bowel syndrome where the symptoms are the uncontrollable diarrhea, same as the radiation enteritis.  There is another called Gattex that just became available.  Both are very expensive.  We have not tried either due to cost.  You might also try googling SBS, short bowel syndrome, where there is good information on things to try.  I would like to see a Dr that could help with nutrition, as my husband has malabsorption and is deficient in MG & others.  Have not found anyone yet that has helped.

Good luck!

RE: small bowel damage from radiation (radiation enteritis)

by Shannonc13 on Wed Oct 23, 2013 07:09 PM

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I am hoping to start hyperbaric therapy soon for the same issues. I was wondering how you are doing now after some time has passed
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