One patient with glioblastoma still alive nine years later
by deborah.lightfo on Thu Jan 27, 2011 01:24 AM
Lou I think I figured out your irrigation of the bowels is for people without the bag. Please tell me how to go about doing it, I am interested. It sounds like you can relax for a bit and not have to run to the toilet all the time. I'm gaim for that.
Thanks Lou, sorry for being confused on my previous email.
by lsrforndr on Thu Feb 03, 2011 09:23 PM
On Jan 27, 2011 1:24 AM deborah.lightf o wrote: Lou I think I figured out your irrigation of the bowels is for people without the bag. Please tell me how to go about doing it, I am interested. It sounds like you can relax for a bit and not have to run to the toilet all the time. I'm gaim for that.
Thanks Lou, sorry for being confused on my previous email.
On Jan 27, 2011 1:24 AM deborah.lightf o wrote:
My husband was diagnosed with stage 2 rectal cancer in October 2009. He had the standard treatments - radiation, surgery, illeostomy, chemo and illeostomy reversal. His illeostomy reversal was done July 9, 2010 and he had serious problems with cluster bowel movements. He followed the MD Anderson Bowel management program faithfully. One day about 2 weeks ago he started having clusters every 30 minutes for 24 solid hours. Lomotil or immodium did not seem to do any good. After reading and MUCH research, I finally found a sight that mentioned "sugar" causing some people problems. My husband is diabetic, so he was carefull, but we never realized that pizza sauce, ham glaze, etc would have so much sugar. To make a long story short, he started watching EVERYTHING with sugar and has since stopped taking fiber after meals and takes very little lomotil. He has 2 or 3 large movements per day and no clusters at all. In short, he has his life back. I think the MD Anderson program works for most people, but if you are getting worse instead of better , try other options and keep searching for new info. Don't give up - it does get better !!!
by lsrforndr on Thu Feb 03, 2011 09:24 PM
by billsjan on Sun Aug 28, 2011 09:05 PM
hi can i just say ii have had all the burning stinging pain and not able to eat much food but i have been normal now for 11 monthes the hospital put me on lpoeramide capsules i take 3 in the morning 3 in the afternoon 3 befor bed and i am able to eat anythink i like go shopping when i want to my life has changed i also take 2 co-codamol in the morning and 2 befor bed my life is so much better let me know how you get on
by sue.molenda on Sun Sep 25, 2011 11:21 PM
On Jun 22, 2007 12:00 AM Thankful wrote: On 6/11/2007 Ruth Ann wrote:Hi I am new to this site. I was diagnosed with rectal cancer Stage II in Mar. 06. I had chemo and radiation prior to surgery in Aug. 06. This last March I had my temp ileostomy reversed. Since the reversal I have had a lot of problems. I am having lots of pain during bm's and blood on tissue. Went to see the doc and he at first said it was an anal fissure, but then two weeks later he said it was just complications from the radiation treatments. Has anyone else ever experienced this and what was your solution to it? I am on 2 antibiotics and hydrocortisone cream for the anus area. Thanks, RuthI am new to this site as well. I am 8 weeks into an illeostomy reversal, and having problems. It all started a year ago, when I was having problems, blood, urge to have a bm but nothing came out. I finally had a colonoscopy done and the doc said there was a tumor there. I go in for surgery, expecting the tumor to be removed, but it was rectal cancer, which is best treated with radiation and chemo to shrink it before they try to remove it. So they put in a colostomy, left the tumor, and sewed me up. A week later I had to have the colostomy fixed as it had gone necrotic, and so then I was given an illeostomy, on my right side. After weeks of radiation and chemo, I had surgery to remove the tumor and all was well. Then I had to have four more months chemo to make sure they got all the cells. Finally I had the reversal surgery, 10 months after the first surgery. I find I go to the bathroom a lot, and only small pieces come out. My butt burns like hell. I don't know if I should be taking stool softeners, or fibre, or what. Maybe my stool will always be like this? I don't think the docs have the answers - so I"m looking to people who have had this surgery. Do we every really get back to normal? Will I every know if its going to be a fart or a poop?
On Jun 22, 2007 12:00 AM Thankful wrote:
On 6/11/2007 Ruth Ann wrote:Hi I am new to this site. I was diagnosed with rectal cancer Stage II in Mar. 06. I had chemo and radiation prior to surgery in Aug. 06. This last March I had my temp ileostomy reversed. Since the reversal I have had a lot of problems. I am having lots of pain during bm's and blood on tissue. Went to see the doc and he at first said it was an anal fissure, but then two weeks later he said it was just complications from the radiation treatments. Has anyone else ever experienced this and what was your solution to it? I am on 2 antibiotics and hydrocortisone cream for the anus area. Thanks, Ruth
I am sorry to hear that you and others are having problems with reversals. I have no advice. My ostomy is irreversible. I suppose the best I can say is that, as "shitty" as it is to live with an ostomy, it is apparently worse to live with complications after reversal. I hope and pray that you'll get past the current difficulties and that normal bowel function will resume, eventually. You might need to give yourself more time to heal. I'd buy a juicer or make friends with the folks at your nearest juice shop... Jamba Juice or wherever... and try doing a juice fast until things feel better down there. Juicing has the power to regenerate damaged tissue, and besides, the absence of bulk and fiber, temporarily, will relieve the burning butt issue until you start to feel better. Let me know how that goes, if you try it. Also, carrot juice has mega antioxidants to kill residual cancer cells. You cannot harm yourself by doing a juice fast. Try it for a week or two. Get a book on healing juices. My favorite is a combo of organic apples, carrots, and a tiny bit of ginger. Sometimes I add a little beet or celery to that. Delicious, nutritious, and healing. Try it for yourself. Keep it up for life... not the fasting, but juicing before meals or instead of the occasional meal is excellent for overall health and wellness.
by jeffy56 on Wed Nov 30, 2011 01:17 AM
Just found this site thank God ! On november 22 2010 I had rectal surgery,ileostomy then two months later ileostomy reversal.I thought that I would be back to normal in no time boy was i wrong.I went back to John Hopkins were I told them about going for ever having bits and pieces as I called them which is cluster bowel movements I believe at which time I was told I needed to get dialated which I had done twice so far but I still have cluster bowel movements three to four times a week.Thankf ully they come at night from dinner time to two or three in the morning.I also just had surgery for a hernia that was a mess about a month ago. I feel great most of the time but the clusters are really getting too me.Can you tell me what the MD Anderson Bowel management program is or if anyone has any suggestions. Thanks
by sue.molenda on Wed Nov 30, 2011 01:56 AM
Deborah, irrigation for ostomates is only possible for patients with a lower bowel colostomy. They must have fairly well-formed stools, not liquid. It doesn't work for people with ileostomies.
However, for people who do not have ostomies, there is colonic irrigation... and that's a different deal. It's most usually done in a clinic that has a all the equipment to do it without a huge mess. I don't think they do it to keep you from having to go to the bathroom often. It is usually just to clean the colon because a clean colon makes for a healthier body. You should have regular bowel movements daily. Irrigation for ostomates helps to eliminate the need to wear a bag all the time, or to feel the constant gush of shit through the stoma, into the bag, which is something like I imagine hell must be. At least, it feels like hell, to me.
An ostomate who irrigates sometimes can wear just a stoma cap, instead of a bag, and that would be so freeing. I really would like to do that. One day I'll get around to making that change in my routine... as soon as I find the energy to pursue the discussion with my doctor.
Meanwhile, if you want your colon reamed out with a colonic irrigation now and then (do not do this daily. It isn't how we are meant to exist) here is a link to a YouTube video about the process.
by deborah.lightfo on Wed Nov 30, 2011 02:32 AM
Thank you kindly for your reply. I am having a much better time of it, going more frequently instead of once per month. I seem to be better since I increased the amount of fiber in my diet. I do however still leak often, but I would say it's on the mend.
Good luck to you.
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