Chronic Radiation Enteritis

mp327

julsthompson said:

Post radiation chronic HELL!

Dear ALL...I know what you're going through...I had ovarian cancer at age 17 (in 1973)...was burned to a crisp with radiation...and have been suffering the worst symptoms over the past 10 yrs...It's very depressing...with all of the blockage pain, watery stools and bloating, vomiting for hours and not to mention the leg and body cramps because of dehydration! FUN!...My small bowel is like beef jerky! YUK..I've always had an optimistic attitude regarding most everything ...however, when there's no light at the end of the tunnel..it's pretty sad.  I'm on all liquids now.  Most of the Dr's basically look at me & say.."Well, you should be happy to be alive and YOU LOOK REALLY GOOD"..Quote from Stanford Gastro JERK specialist!  I never went back...So my dears...Take it one day at a time...You are not alone in this ...Blessings XO, Julie

julsthompson

I really am sorry to hear about your long-term, ongoing issues with post-radiation issues.  I can relate, as I've had numerous episodes of small intestine blockages, once having to be admitted to the hospital.  My most recent blockage happened 3 weeks ago and I was miserable for 3 days.  I am extremely fearful of so many foods now and eat a lot of low-residue foods.  I know I am not getting all the nutrients I should be getting from foods and believe I suffer from malabsorption.  I do not gain weight and my hair continues to fall out, as if I'm anorexic.  However, I do eat a normal amount of calories every day, just not the amount of fruits and veggies that I should eat, due to the potential complications.  I can totally relate to your plight.  Blockages are SO very painful and scary!  I consulted a surgeon, just in case I get into an emergency situation, such as a rupture.  Obviously, surgery would only be done in that case because surgery would most likely lead to more adhesions/blockages.  It's kind of a lose-lose situation.  

Take care and know that I wish you all the very best.

Martha 

luckieslady

I think this is what I am dealing with

I can only have a bowel movement if I use an enema. When I do have a BM the bowel is long narrow and thin.. and soft but have symptoms of constipation ..pushing hurting and just cant go! I have no gas I might pass gas three times a week ma ximum IF I am lucky.My body is TIRED, I am neauseated a lot and feel like I will fall over dead. I have NO energy anymore. I feel zapped. I cant sleep at night it takes me forever to fall asleep and then when I do I toss and turn because of my hips hurt so bad. I have been diagnosed with osteoporosis and menapause I take no meds as I lost my insurance over a year ago and just now getting my insurance back.. this is really taking a toll on me mentally

shamayim

luckieslady said:

I think this is what I am dealing with

I can only have a bowel movement if I use an enema. When I do have a BM the bowel is long narrow and thin.. and soft but have symptoms of constipation ..pushing hurting and just cant go! I have no gas I might pass gas three times a week ma ximum IF I am lucky.My body is TIRED, I am neauseated a lot and feel like I will fall over dead. I have NO energy anymore. I feel zapped. I cant sleep at night it takes me forever to fall asleep and then when I do I toss and turn because of my hips hurt so bad. I have been diagnosed with osteoporosis and menapause I take no meds as I lost my insurance over a year ago and just now getting my insurance back.. this is really taking a toll on me mentally

learning, coping, hoping

This is my first post, I'm 3 weeks after treatment for stage 2 anal cancer, just trying to stay focused on healing.  I am sorry for what you are going through, I suspect my future will include many of the problems discussed in this forum. I've had some vaginal skin fusion, hoping that bowels stay unblocked, but I am pretty naive about what to expect.  I had so many taste mouth issues that I have eaten whatever I felt like eating once that part was over. I have eaten pizza, chili, and even candy because I am afraid I will never be able to so again and it was a rebellion against all that I am supposed to do... The other part is that I may have a secondary site and must have a difficult polyp removed from my cecum.  I grapple with similar issues of many here, from sex and intimacy, to insurance loss, divorce, parental caregiving responsibities, tightened muscles, depression, bowel issues etc. I do alot of praying, healthy visualization, and that has helped me get through this. I take it one day at a time and ask for whatever I need for that day...I have been up most of the night. Tomorrow is new day and the hope of a better one. I hope your obstruction passes.

 

tallorder5793

IBS Diet

Hi. I don't know if this is at all helpful. In my case, I found eating IBS-friendly foods helps me a lot. If you google IBS diet, you'll find lots of information.

Phoebesnow

shamayim said:

learning, coping, hoping

This is my first post, I'm 3 weeks after treatment for stage 2 anal cancer, just trying to stay focused on healing.  I am sorry for what you are going through, I suspect my future will include many of the problems discussed in this forum. I've had some vaginal skin fusion, hoping that bowels stay unblocked, but I am pretty naive about what to expect.  I had so many taste mouth issues that I have eaten whatever I felt like eating once that part was over. I have eaten pizza, chili, and even candy because I am afraid I will never be able to so again and it was a rebellion against all that I am supposed to do... The other part is that I may have a secondary site and must have a difficult polyp removed from my cecum.  I grapple with similar issues of many here, from sex and intimacy, to insurance loss, divorce, parental caregiving responsibities, tightened muscles, depression, bowel issues etc. I do alot of praying, healthy visualization, and that has helped me get through this. I take it one day at a time and ask for whatever I need for that day...I have been up most of the night. Tomorrow is new day and the hope of a better one. I hope your obstruction passes.

 

Shamaylm

Hi,

 

Welcome to the site.  I'm sorry you have some unresolved issues.  Keep us updated on your progress.

Mobjack

Still suffering?

I saw your post from four years ago when doing a search for Chronic Radiation Enteritis.  I am doubtful that you are still on this site, as no one has responded to any of my posts, which is frustrating. I suffer terribly from this malady and would love to have someone to talk to for encouragement.  But it seems this is not the place, or maybe I'm just the only person in the world who happens to now be suffering from this--not that I really believe that to be the case, but it sure does feel like it sometimes. 

Phoebesnow

Mobjack said:

Still suffering?

I saw your post from four years ago when doing a search for Chronic Radiation Enteritis.  I am doubtful that you are still on this site, as no one has responded to any of my posts, which is frustrating. I suffer terribly from this malady and would love to have someone to talk to for encouragement.  But it seems this is not the place, or maybe I'm just the only person in the world who happens to now be suffering from this--not that I really believe that to be the case, but it sure does feel like it sometimes. 

Chronic

Hi,

 

Please go to discussion boards, selecT anal cancer, select add new forum topic.  Please start your discussion here.  At least you will be greeted by the others.  You can also post on colorectal board as their treatment is similar to ours.  You can also try a website called colontalk.

 

Hi, nice to meet you.  

mp327

Mobjack said:

Still suffering?

I saw your post from four years ago when doing a search for Chronic Radiation Enteritis.  I am doubtful that you are still on this site, as no one has responded to any of my posts, which is frustrating. I suffer terribly from this malady and would love to have someone to talk to for encouragement.  But it seems this is not the place, or maybe I'm just the only person in the world who happens to now be suffering from this--not that I really believe that to be the case, but it sure does feel like it sometimes. 

Mobjack

I'm sorry you've received no response to your post from the past.  Please begin a new thread and I'm sure you'll get some feedback.  FYI, I am a 7-year survivor and still suffer a multitude of gut problems, ranging from constipation to full-blown diarrhea, malabsorption of nutrients, and worst of all partial small bowel blockages, of which I've had a few episodes.  I am scheduled for CT enterography on Friday to see if there are any underlying causes for the blockages, etc., other than the radiation damage.  Please let us know your symptoms and we will try to help you.

Martha

philly1953

Daughter with anal cancer

My daughter finished treatment for anal cancer about 8 weeks ago.  She is already experiencing bouts of being blocked up.  My heart just breaks for her and all of you.  The treatment is so horrible and they don't tell you about all the complications that a person has to live with the rest of their lives. 

Missgrace

Any new remedy?

I finished treatment eight years ago and have felt pretty good since then. Until recently, that is. About four months ago, I had a small bowel obstruction and I've had three more since then (five if I count the two that were diagnosed as "a bug"). I don't see any recent posts about radiation enteritis so I was wondering. . . .has anyone found some new magic drug or treatment? I am not the leastbit  happy about eating soft mush and liquids forever but that's not the worst of it. I have syncope and pass out when my belly hurts. (Usually  face first on the bathroom tile). The pain, nausea and fainting go on for hours and make me feel worse than I would have thought possible. Please, someone, tell me how to make this stop. 

AS12

low grade fever, loose bowels with no warning

Hello, I was diagnosed with anal cancer Stage 2 T2NO.  I have completed the radiation and chemo protocol on 12/10.  On 12/13 was told my blood count was 4+ and I could be a poster child for cancer.  I went back to work full time on 12/23 and have continued to have bowel episodes that are loose, pain in abdomen at times, times when  have to go a BM I have to go immediately.  Additionally, I have been running a low grade fever 99-100 with aches.  My memory is not all that good at times and I have a "bump" feels like hemmroid in anal area. Have communicated with physician, but no appointment until 1/22 following a PetScan on 1/20.  I am thinking I went back to work too soon, but not sure about the fever thing.  Comments or suggestions please.

Thank you

TaurianJo60

TONORA -chronic radiation enteritis

TONORA-      OMG! I am so sorry because I KNOW what you're going through... & so happy to have found someone else.  It took 3 mos of shear HELL before they found out what was happening to me (Feb-May 2019)-  I have been on PENTOXFYLLNE  400mg 3X;s a day w/100iu of Viatmin E once a day for 8 mos now. I can be vertical, and my pain is pretty much limited to mornings- some days good (30 min-1 hr of discomfort and/or pain, other days bad (2 hrs or more leaving me exhausted).....but it's by FAR better than 3 mos of being in agony and bedridden. I am now starting hyperbaric chamber/oxygen therapy. Dr think it will accelerate how ever much healing is possible. 

logoslives

Fasting

I would wonder whether fasting might help. It appears that fasting can help a lot of other conditions that involve inflammation, at least temporarily, including pretty severe rheumatoid arthritis. I'm not talking about fasting with the purpose of losing weight, I'm talking about fasting for health. I read Jason Fung's book and was impressed by how much it can help some people with otherwise untreatable conditions. Has anyone tried it?