CancerCompass message board discussion started by dalimama on 2/10/2008 http://www.cancercompass.com/message-board/message/all,20799,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with uterine cancer 9/05. Had radical hysterectomy, 6 weeks of radiation and then 6 sessions of chemotherapy. Lost lots of weight with radiation and felt nauseous all the time. Had some diarrhea, but it was manageable. Just a few weeks after chemo, I started to have horrible bloating and cramping. Finally went into the hospital and had a small bowel obstruction most probably due to scar tissue from surgery and radiation. Went on TPN for a month. Seemed better after that, but every time I ate food, I would get bloated and crampy. Would have severe vomiting about once a month. Went to an acupuncturist and seemed to have some improvement, but if I over did it with food or stress related activities, would have a set back and each time it was harder to get control. No one could tell me what to do. I finally went to see a holistic doctor who basically told me to cut out all foods except vegetables, good fats and chicken, turkey or fish. No deli meats though. I lost 10 lbs within 6 weeks. I was already losing a pound or two a week from cutting back on foods (lost taste for alcohol and if I was bloated couldn't eat anyway). I went from about 150lbs to 98 lbs. Was dehydrated, fatigued and depressed. Did I mention that I have 3 kids. I was a complete wreck. The holistic pushed more good fats and protein shakes. I would still bloat up. Finally, 2 years after my diagnosis, my oncologist brought me in the hospital for a port in my chest so I could do TPN. I received the nutrition 7 days a week. I've done that since September and now am down to 2 days a week, but having trouble maintaining weight. In September, the doctor also hooked me up with the gastroenterology team that finally put a name to my suffering - Radiation enteritis.Within a few weeks, I had gained about 10 lbs back, but now had constant diarrhea. This was not a symptom prior to trying the holistic diet. I've had 2 major accidents with the diarrhea. Was mortified. Fortunately, I don't think anyone was around, but it was horrible for me. Now I'm told I should take immodium every day. I don't know why I have an issue with that, but now I guess it's what I have to do. I am currently considering anti-depressants as well. My clinical psychologist (part of the gastroenterology team) tells me people with radiation enteritis have had some success with anti-depressants. Some have also suggested the hyperbaric chamber to increase oxygen and blood flow to the radiated areas. Has anyone tried that? Has anyone had success with anti-depressants?Now that I've written this book, has anyone had these same symptoms? I want to start living again and have energy for my kids. I'm constantly telling them I don't feel well, my stomach hurts or I'm afraid to go out because I might have an accident,When is the medical profession going to figure out how to treat the side effects of cancer treatment so that we can lead somewhat normal lives? Don't get me wrong, I'm grateful to be alive, but I'm just having a hard time enjoying that life.Even the slightest improvement would help. dalimama Sun, 10 Feb 2008 00:00:00 GMT Hello...I am doing as much research as I can about Radiation Enteritis. My mom has almost the identical story as yours. I can really identify with almost everything you discussed and have much empathy for your situation.With this research I'm doing now, the most disturbing fact is that it is evident that doctors do not seem to be taking very simple preventive measures to avoid these life threatening residual effects of radiation. According to statistics, it is only 5-15% of patients undergoing radiation in the pelvic region that suffer from chronic radiation enteritis. After digging a little deeper, I have come to believe that the number is likely to be higher...much higher. It is of much interest to me to expose the obvious risk factors involved in pelvic radiation treatments, to shed a bright light on the preventive measures which should be protocol for all doctors before starting and for during the radiation treatments, to find more resources on innovative and effective treatments for those suffering with chronic radiation enteritis, to force the modern medical profession to face these distressing facts and address them accordingly.I am working on putting together a website specifically and exclusively for sufferers of radiation enteritis in hope that unifying our experiences will bring about an awareness for this underrepresented growing group of forgotten cancer survivors.I know that you posted this back in February, but I hope that you will come back and see my response. You are most definitely not alone. And I hope you are stable & doing well.Feel free to email: --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-- ...and I hope to have the website up and running very soon.  my_moms_advocate Wed, 23 Jul 2008 00:00:00 GMT here is a link to a website from the UK that you or anyone else suffering with this may find helpful:http://www.late-effects-radiotherapy.co.uk/ my_moms_advocate Wed, 23 Jul 2008 00:00:00 GMT I am the author of http://www.late-effects-radiotherapy.co.uk The site was originally written and published in 2000, though it has been developed quite a bit since then and we now have this new domain name. It is my wife that had the endometrial cancer who suffers from the damage caused by the necessary radiotherapy needed to save her. Unlike some of her peers, she does not blame those who treated her.However, we constantly seek ways of improving life for her. The latest, just today we have bought a juicer so that she can get the nutrients that she lacks from not being able to eat most friuts and veg. So if the juicer can extract the good stuff, leaving behind the blocky fibrous stuff - well lets hope it will be useful. late-effects Fri, 15 Aug 2008 00:00:00 GMT I'm sorry it has taken me so long to reply. I was just going through old e-mails and realized I had not even read this one. How is your Mom and what is her status now? I am still doing TPN. I 've been on it now for almost a year. I never thought it would be this long. It seems like this might be my only answer to maintain my weight, yet I'm sure there are long term consequences to this as well. I met with my doctor last week to talk about surgery. I always kept this as a last resort hoping it would resolve everything, but now she doesn't even know if that would help. Well, with an attitude like that, I don't think she will be doing my surgery. I know they can't guarantee any results, but I just can't get beyond the hope that there has to be somebody out there that can help me. I agree with you that there has to be more of us out there. But the fact that our cancer surgeons don't know how to deal with us once they've cut every thing, radiated everything and then topped it off with chemo, is so frustrating. There has to be someone out there doing research on how to help those that are cancer free and now are suffering from the effects of the treatment. I have now begun my search for a surgeon. Friends have told me to look for a colorectal surgeon. It's been about 2 1/2 years that I've been dealing with this. The sad thing is that I know there are others that suffer more than I do. I am trying to do a liquid diet right now to rest my small bowel and reduce the bloating, but I have no will power! Just ate a piece of turkey! One silly piece of turkey and a few starbursts and I look like I'm pregnant. Of course the other option they offer is to cut it all out, give me a bag and be on TPN for the rest of my life. Sometimes I think I should just stop eating and deal with it. do the TPN. I certainly feel better when I don't eat. I even have more energy when i depend only on the TPN. I got over not drinking any more. Maybe it's time to let go of the food. I just wish there was a way for the small bowel to heal itself. According to my doctor, it doesn't and the radiation could do further damage. I do believe the hyperbaric treatments are helping, but not to the degree I had hoped. Please write back and let me know some of your mom's details and also keep me posted about your website. I don't know how to begin to look for an expert in this area that can help me. Let me know if I can be of assistance. ----quote------ On 7/23/2008 my_moms_advocate wrote: Hello...I am doing as much research as I can about Radiation Enteritis. My mom has almost the identical story as yours. I can really identify with almost everything you discussed and have much empathy for your situation.With this research I'm doing now, the most disturbing fact is that it is evident that doctors do not seem to be taking very simple preventive measures to avoid these life threatening residual effects of radiation. According to statistics, it is only 5-15% of patients undergoing radiation in the pelvic region that suffer from chronic radiation enteritis. After digging a little deeper, I have come to believe that the number is likely to be higher...much higher. It is of much interest to me to expose the obvious risk factors involved in pelvic radiation treatments, to shed a bright light on the preventive measures which should be protocol for all doctors before starting and for during the radiation treatments, to find more resources on innovative and effective treatments for those suffering with chronic radiation enteritis, to force the modern medical profession to face these distressing facts and address them accordingly.I am working on putting together a website specifically and exclusively for sufferers of radiation enteritis in hope that unifying our experiences will bring about an awareness for this underrepresented growing group of forgotten cancer survivors.I know that you posted this back in February, but I hope that you will come back and see my response. You are most definitely not alone. And I hope you are stable & doing well.Feel free to email: --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-- ...and I hope to have the website up and running very soon.  -----end quote------ dalimama Sat, 23 Aug 2008 00:00:00 GMT