SparkPeople Living with an Ostomy Team Messageboard Do you or someone you know live with an ostomy? Join us and support one another as we strive to get healthy while living with an ostomy. SparkPeople Living with an Ostomy Team Messageboard Why I'm Here Hello fellow ostomates, <BR> I recently had a partial colectomy that ran into complications. I was supposed to have a one-stage surgery, but the remaining ends of the colon didn't repair well, so to be safe my surgeon placed an ileostomy. I also developed a post-surgical abdominal abcess that made me very sick. I couldn't eat and lost 25 pounds over 2 - 3 weeks. Now I'm 8 weeks post - op, feeling good, and I've regained 10 pounds and am hungry ALL THE TIME. <BR> <BR> I knew the 25 pound los... Sun, 22 May 2016 23:09:33 EST Odor Control Products and Ideas I'm not vegan and I love garlic and onions so I'm really trying to find a product or idea to keep the odor down, especially when I'm out and have to empty my pouch. <BR> <BR> I found this review of products by a vegan osteomate: <BR> <BR> <link><BR>eodorants </link> Tue, 3 May 2016 15:19:00 EST Instead of sachets I spoke with my pharmacist about using thick it in my bag to thicken my stool. Like most people my age I'm on medicare and there are some products they consider not necessary. I got a sample of Nu-Sorb. It is from Hope Industries in Calif. An 8 oz bottle run about 45.00 plus shipping ( which is close to 15.00). <BR> <BR> Thick it is used for persons that have problems with swallowing. It is safe for the gastric mucosa so it won't hurt the stoma. You just put the desired about into the... Sun, 28 Feb 2016 16:29:23 EST Gelling Sachets I just received an offer for a free sample of these gelling sachets: <BR> <BR> Diamonds™ Gelling Sachets with ActiveOne™ Odor Control solidify liquid contents and reduce or eliminate excess gas, enabling the user to achieve a flatter, more discreet pouch. Not only does this result in greater comfort, but users often find that Diamonds™ sachets help prevent leakage and sleep disruptions caused by the need to drain or release gas. For ileostomy or liquid stool output. <BR> <BR> I tried anothe... Tue, 20 Oct 2015 17:51:59 EST Skin Sleuthing Great article about dealing with skin problems: <BR> <BR> <link><BR>leuthing/ </link> Sat, 26 Sep 2015 19:19:41 EST Article on using Duoderm for peristomal skin care Found this article about using Duoderm to deal with problem areas on peristomal skin. Interesting. I think I'm going to give it a try as soon as I can get some Duoderm. <BR> <BR> <link><BR>duoderm-to-protect-peristomal-skin/ </link> Sat, 26 Sep 2015 18:11:27 EST Intro Ileostomy placed in November 2014 secondary to JPouch failure. Had sepsis after surgery and a longer recovery time than expected. <BR> <BR> Married, work in academia, am a total geek/nerd. Have two kitties, two nieces, and three nephews. Looking forward to feeling healthy again and rebuilding my stamina. Recently purchased a lime green FitBit Zip to help me with that little project. Am successfully up to 5k steps per day. Am aiming for 10k by October-ish. <BR> <BR> Glad to be here! ... Mon, 13 Apr 2015 14:54:27 EST Hi There... :) <BR> My name is David, and I was looking for a digestive issues support team that could understand my particular situation... and I think I have found it! *hopeful grin goes here* <BR> <BR> I had an illeostomy when they found a rare kind of tumor on my sigmoid. The Tumors are technically benign, but recurring. Each time one grows, it starts out on connective tissue around an organ, and it is very fiberous- it then begins to calcify, which tightens, causes strictures, and eventually gangrene... Sun, 22 Mar 2015 18:28:11 EST Dr. advice about constipation since surgery?? I'm wondering what advice you've been given to avoid constipation, be regular, etc. since surgery? Tue, 17 Mar 2015 09:11:09 EST Important information I was hospitalized at the beginning of this week. I had a blockage of my intestines. I have had this before. When I talked to the doctor after I got out of the hospital, I was asking about a pain killer he had prescribed for me several months ago. Much to my amazement and horror he explained that painkiller (Dilaudid or Hydromorphone) could have caused the blockage. Evidently any sedative painkiller can have that effect since it makes the digestive system work more slowly and it can get block... Thu, 26 Feb 2015 18:32:44 EST How to tell when you will leak I always have wondered exactly how to tell when you desperately need to change your ostomy appliance before it leaks or turns loose. Well, I had a horrible leak and partial turning loose at the beginning of this week. Unfortunately it happened during the night, so I didn't get too many signals ahead of time. This morning I was thinking that perhaps it might go another day, but then I started getting feelings of bubbliness on my skin under the appliance. Sure enough it was starting a leak so I... Fri, 14 Nov 2014 15:39:15 EST A colostomy I'm on my second colostomy. <BR> <BR> The first colostomy, irreversible, Christmas, 2008, with removal of the anus and rectum, closing the opening ocmpletely. The stoma "rose" died in January and the stoma closed despite weekly dilation. <BR> <BR> I didn't even know it could close up. But thanks to Brenda Elsager's book, "If the Battle is Over, Why am I Still in Uniform? <link><BR>-Uniform/dp/1931945063/ref=sr_1_6?s=bo<BR>oks&ie=UTF8&qid=1415501279&sr=... Sat, 8 Nov 2014 18:29:24 EST Exercise after surgery I just had yet another hernia repair surgery the end of August. I don't want to do it again. Neither my last surgeon nor the one who did this surgery has felt that I need to take it easy on exercise or any other physical activity. This bothers me because I keep getting hernias. Has anyone gotten any different advice? I don't want to sit around any longer than necessary, but I don't want to do any damage to myself. Sat, 8 Nov 2014 14:45:51 EST Swimming Since my 2nd colostomy, I go swimming twice a day. Partly because I love it. But also because it keeps peripheral neuropathy at bay. No leg pain all night if I work out in the deep water at least once a day. So, <BR> <BR> Do you go swimming? How do you manage it? Wed, 30 Jul 2014 19:58:51 EST Start page Team Bonus Points WooHoo ssss I have 5 teams I click the bonus flags for each day. Living with an Ostomy is one of them. Today is the 2nd time in a week 50 points has come up for this little team!! <em>244</em> <BR> <BR> So I thought we could give a shout out when we earn the team some points like that. Whatever you think is worth sharing!! <BR> <BR> Bravelute Thu, 20 Mar 2014 21:38:25 EST Newbie here 2 yr ileoNEED weight loss for jpouch I just had my 2yr anniversary on Feb 2. I have gained 20 pounds since my surgery and so I need to lose 80 to 100 lbs now. I had ulcerative colitis for 16 years before surgery. I wish I would have had the colectomy earlier as I was steroid dependent and gained all the weight after my diagnosis. I had always been a healthy weight before diagnosis at age 29. I also have MCTD etc. so I would appreciate any recommendations for effective low impact exercises to start with. I have been having ... Fri, 7 Feb 2014 21:08:17 EST Hello, New Person Alert Hello, I am excited about finding this team. I have and ileostomy for about two years now. It was done emergency style and the doctor who did it really didn't take much interest in me afterwards. I only saw him once after the surgery (first visit to the office he was on vacation). I did ask him about reversal and he said it was possible but didn't really tell me much else. I finally got in contact with a different surgeon who is willing to do the reversal surgery but would like me to los... Sun, 5 Jan 2014 15:42:04 EST Glad to find this team Hi, I'm Barbara. I'm 64. I developed ulcerative colitis in 2009 and developed pan colitis in October of 2011. At the time I was on cumadin for a blood clot and was bleeding too much. They had to take my colin to stop it. Having been a nursing assistant for many years I already knew how to care for it, but that didn't make the emotional side of having an iliostomy any easier. I've already had two hernias repaired and think I have another but don't have the insurance to deal with it right now. ... Sat, 19 Oct 2013 17:38:13 EST UOAA convention in FL August 6-10 I'm attending the UOAA convention next week. <BR> <BR> 1. Is anyone else going? <BR> <BR> 2. Anything you'd like me to find out? <BR> <BR> Ostomy nurses will be holding clinics. I haven't signed up because my nurse from the 2nd surgery will be staying with me when she arrives. But I am concerned about mine shrinking and closing for the 2nd time. But then again it could be the weight loss. <BR> <BR> 3. Have any of you noticed a major change in diameter of your stoma (smaller) after a big ... Fri, 2 Aug 2013 22:23:09 EST Planning an Ostomy Memorial/Wake Okay, this might sound weird, but I'm planning a memorial/wake for our missing parts for our support group meeting in October. <BR> <BR> They were taken from us, and they are missed! And we haven't had "closure" to mourn their passing, like someone might do after a miscarriage or a death. I didn't care much when they removed my tonsils, or wisdom teeth, or appendix. I possibly should have cared about my gall bladder. But I seem to miss those parts they took out with this surgery! <BR> <BR> ... Tue, 25 Jun 2013 09:25:28 EST Make Sure Your Thyroid is working ! Wish I had known all this info before I go so sick my colon had to be removed. Dr. Hotze is compassionate about helping women get their health back in ways conventional doctors wont do. If you want a great informative book on how to know if your thyroid is working SLOW, get this new book FREE. All you have to do is pay shipping! The book comes out next month. Go to this website to order: <link> </link> <BR> He also wrote in 2005, a wonderful book on bio-identical hormones... Mon, 27 May 2013 12:01:09 EST Anyone thinking of getting a J-Pouch. .contact me! I love mine and glad I had UC so I could get one. But I did go almost 3 years with the bag. I got pretty good at it. Was hard cycling in Hot Houston and all the exercise I do. It was my BIG motivator to get my weight back down. After getting to finally EAT from UC starvation, I instantly went from 85 lbs to 160! Gross on a 4'10" old body. I can eat all the veggies Dr. Joel Fuhrman suggests on his Eat To LIve food plan. I love his books. Sun, 26 May 2013 23:53:28 EST colostomy I had a perm end colostomy in May '12 due to colon cancer. I still haven't figured out how to exercise with it and am beginning to have issues that include gas and stoma pain. <BR> <BR> Any suggestions to exercising? I have put back on almost 1/2 of the weight I lost during chemo and plan to walk a 5k in 2 weeks. <BR> <BR> Mon, 11 Mar 2013 22:40:51 EST Get your thyroid checked by the right doctor!!! These doctors have helped me tremendously and I love/trust them. They tell the truth more than mainstream brainwashed doctors we normally see. You have to watch the whole YouTube video to see all the symptoms low thyroid has. I had all these before getting on Armour Thyroid and feel great. <BR> <BR> <link> </link> <BR> <BR> Get his book Health Happiness and Hormones by Dr. Steven Hotze Wed, 23 Jan 2013 12:29:01 EST How to prevent bleeding at peristomal skin I've got a weird problem (well I think it's weird). The skin that is attached to the stoma is raw and bleeding. Just around the stoma and only goes out about 2mm. My stoma is recessed and there is no way to put the flange so that it's over this area as it's raised up somewhat right there next to the stoma. Think of your eyelid w/ the eyeball being the stoma. <BR> <BR> Anyway...I decided to try using the skin protectant powder and spray at most changes of bags (usually at home in the morn... Sat, 19 Jan 2013 11:14:20 EST Support Group Meetings? Do you go to support group meetings? My local organization has an afternoon meeting that follows this pattern: <BR> <BR> speaker, business meeting (usually short), and refreshments/socialization; and people with problems speak individually or in small groups with out WOCN when she is there. <BR> <BR> <BR> We recently had a couple start an evening meeting which sometimes has the speaker from the previous afternoon meeting, but not often. It is more like my idea of a support group with those... Tue, 15 Jan 2013 18:05:34 EST Food Alphabet Game A - apple <em>41</em> Fri, 2 Nov 2012 16:50:45 EST Great Resources Ostomy Boards and Forums <BR> <link> </link> <BR> <link> </link> <BR> <link><BR>wforum.php?f=1 </link> <BR> <link><BR>hp?sid=dde5726cd8c1429c17c5e69a12b8c311 </link> <BR> <BR> Excercise with an ostomy <BR> <link><BR>lifestyle/exercise/ </link> <BR> <link><BR>yle/healthy/sports... Sat, 27 Oct 2012 19:52:41 EST Ostomy Support Network Would you like to be a supporter for those new ostomates who would like answers to the issues we've all dealt with? We would like to set up a way to put people in contact with you so that they can ask questions privately and not feel embarrased about it. <BR> <BR> If you are willing to volunteer to help another ostomate along the road to wholeness, post your reply below. <BR> <BR> If you are a SP member wanting assistance with something you can click on any member who has designated them... Sat, 27 Oct 2012 12:12:50 EST Hi, New Adminstrator for the team I went ahead and volunteered for the position. Hope to help things out so the team doesn't die away. <BR> <BR> Does anyone have any suggestions for what we would like to focus on goal wise and as a group? Open to any and all ideas. Sat, 27 Oct 2012 10:28:38 EST Newbie to the team, but not to ostomies Hi, I am new on the team. Almost a decade ago, I ended up with a colostomy after an emergency operation since I was totally blocked. About 3 years later I had a colostomy takedown since I had a persistent ulcer under the base plate of the appliance. Then about 3 years ago, I had a scheduled ileostomy since I was having increasing problems again and it was discovered as part of the surgery that I had precancerous cells. I guess I dodged a bullet. <BR> <BR> I have had problems with my applianc... Wed, 19 Sep 2012 19:06:25 EST Do you have Ostomy Nutrition Questions? I'm giving a presentation at our osotmy support meeting tomorrow. I'm sharing "Eat to Defeat" based on Dr. William Li's video. <BR> <BR> It would be helpful if I knew what questions you have about nutrition, as someone living with an ostomy. I've been living with this presentation so long, I'm afraid I'm not thinking clearly. So your questions could be a reality check, to be sure I'm really prepared. <BR> <BR> You may send me a private SparkMail if you'd rather not reply here on the discu... Wed, 19 Sep 2012 16:58:37 EST Introductions I was at Spark People between my first cancer diagnosis, October, 2007 and the second in November 2008. After surgery, radiation, and 5 months of chemo, when I was declared cancer free, I started working at losing the weight. SP was very helpful. <BR> <BR> The second diagnosis wasn't supposed to happen, but that's cancer for you. This time, I needed the colostomy, over Christmas. That operation was fraught with problems and needed to be resited in May, 2009. <BR> <BR> Everything is fine wi... Mon, 20 Aug 2012 23:17:37 EST Hi Just wanted to introduce myself..I'm 36 and I've had Crohn's Disease for 20 yrs and have had an ileostomy for 7. Married, American Ex-Pat, living in England now and have had troubles with dieting for's extra hard with an ostomy but really sick of being overweight..hoping to make some friends along the way, who understand how hard it is. I also suffer from infertility but trying not to let that get me down as well. Thanks for listening! Sat, 26 May 2012 08:56:16 EST new hi to all was on here as justbea left sparks for awhile and been on now awhile <BR> <BR> now i am on as rockandroll7 <BR> <BR> so hi from florida <BR> <BR> <BR> Mon, 21 May 2012 17:49:14 EST I've had a totally illeostomy since 1997. My illeostomy was due to having Familial Polyposis. I was 24 when I had it done. It was rough at first, but I finally got used to it. I of course still have problems from time to time, but I make it through with the help of my boys & my husband. It's always nice to be able to talk with others who have the same problems & issues. <BR> <BR> God bless you all! I pray those still dealing with problems from their ostomies find the help & support they need. If I can help please let me kno... Mon, 21 May 2012 14:13:16 EST OUCH! Ugh, I've had to take 10 days worth of prednisone for an allergic reaction and now the end of my ostomy and the skin around are RAW. It's not fungal, although I do have meds for that, but anyone have any ideas on soothing the angry beast. I still have 3 more days of prednisone. <BR> <BR> Tami Wed, 9 May 2012 09:18:51 EST Ideas I was just wondering if anyone had any ideas or wanted any health games to play? I want to keep this informative and interesting but am running 2 businesses & delivering newspapers on the weekends. Does anyone want any challenges to compete in or keeping a daily log of how you are doing at drinking water or eating our fruit & vegetables? Wed, 9 May 2012 02:35:56 EST What foods don't agree with you? My trigger foods are whole wheat, rye, whole grain bread or cereal. I can only eat chicken in gravy with no reactions. I recently found out that peanuts are out because of the oil content. I can eat small amounts of peanut butter. I love fresh fruits and vegetables in season but have to watch the fiber content. I do get diarhea from cole slaw & saurkraut but since it naturally cleans the blood. I do it maybe once a month and usually feel better 2 days later. <em>24</em> Thu, 12 Apr 2012 17:35:44 EST Double bagger is new to team Hi Everyone - <BR> <BR> I have been here at Sparks on and off for the past 5 years. I have a lot of medical issues that make me leave and then when I am stable again I come back. I have a Urostomy (1973) and a Colostomy (1993) due to a birth defect. I am hoping to be able to help others. <BR> <BR> Linda & Twilite (Mobility Service Dog) Mon, 26 Mar 2012 08:36:34 EST New to Team I have been with SparkPeople for years. I had my colostomy surgery in 2009 and it never occurred to me until today that there may be an ostomy team. I am just trying to deal with the lifestyle change and its still not easy. Mine can not be reversed. I had rectal cancer that invaded the vaginal area so it had nothing to do with my actual colon. No only did they have to remove the entire rectal area they had to remove the bottom half of the vagina and use muscle from my inner thigh to reconstru... Mon, 20 Feb 2012 14:01:10 EST What foods, recipes do you use? DH has a new ostomy. We are doing full liquids and soft solids. Our proteins are eggs, cheese, fish, chicken. I've been making a lot of blended soups so he gets his vegetables. I haven't cooked rice yet -- he's having problems with his gut slowing down and I'm afraid that might thicken things too much for him. <BR> <BR> Here's one dish I came up with -- I don't have to worry about low calorie for him because he has lost too much weight. <BR> <BR> CHICKEN CUSTARD <BR> <BR> Preheat oven to... Mon, 13 Feb 2012 17:41:06 EST Husband having trouble with new ostomy Well, perhaps as more people join, this team will become more active! My name is Ruth Ann, and my husband just had ileostomy surgery last month. He is still healing. We have managed to get him onto a soft foods diet, but his gut keeps slowing down, and then he is in pain from the peristalsis that produces no results in the bag. Anyone else have that kind of trouble? He is in bed now in pain again. He has not been able to work since his ostomy. He works from home, so the sooner his body... Mon, 13 Feb 2012 10:00:01 EST We need to keep our team? Been busy with baby... Is everyone too busy for this now? Just post a quick question or helpful hint for the holidays? We need to keep our team? Sun, 11 Dec 2011 11:16:18 EST anyone here still active in this group?? just wanna see if this group is still active for community? i am new to sparkpeople and want to join groups that relate to me and my lifestyle but desire active members as well. :) ya wanna just comment if your active on here and we can see what kind of community is still present and relating. : ) thanks! d Tue, 2 Aug 2011 12:08:34 EST hey there! i am new to sparkpeople but LOVE the idea of this group! i am 41, mother of 2 and have crohn's disease. i would love to get to know some of you, your lifestyles, your triumphs, and your diet suggestions!! :) Sun, 31 Jul 2011 14:09:19 EST How do you all keep cool with the summer heat? When I had my ostomy bag, the sweat and heat made it a challenge for my wafer to stay on. I used the Active Lifestyles Products called Sure Seal Rings. They were applied on top of the wafer and kept it on when doing sports and especially water sports! I tried to keep really active the whole time I had my illeostomy bag. We need to keep our group going or it can be erased like my jpouch group...they just cancelled it without any waringl Wed, 1 Jun 2011 22:46:05 EST What are your new year resolutions? Mine are simple. To eat real healthy several small healthy meals a day. Cut out almost all sugar and sweets. Exercise at least 30 minutes everyday and some of those being the high intensity interval training. (Walking my dogs is not enough anymore!) I want to get more organized with my drawers and closets, as well at the kitchen cabinets. Last and not be a great Nana to my new grand daughter to be born the end of the month! I will be baby sitting her after my daughter goes back to ... Tue, 18 Jan 2011 17:28:52 EST who do you tell? <BR> This is a place where you guys can express your opinions on who you should tell about your ostomy surgery. <BR> <BR> I have told very few people. I grew up in a home full of shame and this was just one more thing for me to feel shameful about. I don't want the shame anymore. I want to embrace this as a part of me that has to be accepted...just like any other thing about me Tue, 26 Oct 2010 12:51:13 EST Positive Quotes.. add yours Don't struggle to change the circumstances of your life.Give love through your good feelings and what you want will appear ! <BR> Mon, 25 Oct 2010 15:03:28 EST Physical Activity with an Ostomy Many healthcare professionals do not recommend people living with an ostomy participate in contact sports such as boxing, wrestling, or football because of possible injury to the stoma from a severe blow. People living with an ostomy include distance runners, weight lifters, skiers, and swimmers, and often participate in most other types of athletics. <BR> <BR> One man who has taken this to heart is Rob Hill, who went from barely being able to make it up a flight of stairs, to running, biki... Mon, 25 Oct 2010 14:49:34 EST I have a Urostomy I have Urostomy.. I have have had it for years now. Still to this day I am trying to come to terms with it. I am hoping this team will be able to help Mon, 25 Oct 2010 14:30:52 EST Here I am ! Hi! I'm Maureen. I am 45, mother of three, insurance professional and fitness lover. I remember thinking that the ostomy surgery I had in 1991 would be the end of my life. It has been the complete opposite - it has enabled me to realize so many dreams come true. My favorite personal achievement is running the MORE Half Marathon in Central Park, NYC - right past Mount Sinai Hospital where I had my surgery. That event signified how long my journey has come and proved to me I had the abili... Tue, 5 Oct 2010 10:58:32 EST Hello Group I'm Christine I just wanted to take a moment to introduce myself. My name is Christine, I’m a 34 year old single mom from West TN and I had my ileostomy surgery in April 09 after dealing with Ulcerative Colitis for 19 years. I was to the point where I was having flare ups more often and the medicine was not working. In Jan. 09 when I went for my yearly exam my colon was 90% covered and the Dr said so far there was no cancer but being that the meds where not working my only options where to either do the IV... Sat, 7 Aug 2010 17:35:43 EST Hello Hello! : ) Hi name is Robin and I am ready to commit myself to a healthy, active lifestyle! I just turned 30 (as of a few days ago) and am a mommy of a 2 1/2-year old little man, and have been married 3 1/2 years. Shortly after our wedding I was diagnosed with Ulcerative Colitis and a month after that we became pregnant : ) Becoming a mother is by far the coolest thing I have ever experienced, and I absolutely adore my child. My disease was very aggressive and I had a proctocolectomy w... Sun, 11 Jul 2010 03:15:17 EST I have an illeostomy and an urinary diversion. I need some info. if anyone can help. I get in the pool and I am ok with the illeostomy. But with the urinary diversion I haven't been able to waterproof it. I have tried sveral things including the sticky plastic wrap type stuff-tegaderm? My dr. wants it waterproofed because of infections that I get. Part of the problem too is that this diversion leaks and that is why the tegaderm doesn't seem to do the trick. I don't think that I can get into a dry suit. <BR> I would appreciate any and all ... Sun, 30 May 2010 22:59:10 EST Introductions Hello! New group member here. I'm 48 and I've had my colostomy for about a year and a half. Unlike most of the members, if what I have read in postings is any indication, the problems that led to my begging my surgeon for a colostomy were hydraulic in nature. <BR> <BR> I'd already had four surgeries (the first three were two years apart and the third and fourth were less than one year apart) for various structural problems--prolapsed rectum (surgeon relieved me of a foot of bowel), cystoc... Tue, 13 Apr 2010 15:10:08 EST Hi - I am New I am new to SparkPeople - only since mid February. I have an illeostomy due to Ulcerative Colitis and i have had the ostomy for over 20 years now. I also developed osteoarthritis which has stopped me from playing the sports i love; the ostomy didn't. <BR> <BR> I worry about getting the proper nutrition since not having a large intestine. i gained a lot of weight the 4 years i was on and off prednisone and ACTH and i haven't been able to lose it yet. <BR> <BR> I hope SparkPeople can help me... Mon, 8 Mar 2010 20:18:40 EST Got my new J-pouch working today...a real poop! No bags anymore. Still in the hospital and feel great. I should have done this a long time ago. Found a great doctor and use my ostomy support group for Houston for info and share with others who had this done. It feel so good to be in the mid 100's now. I am going for at least 100 pounds now and then build up some muscle weight. LBJ <em>319</em> Wed, 3 Mar 2010 19:00:19 EST Hi, I'm new I've been here before, quit, come back...but now I'm finally ready to stay for good! I had a Kock pouch ostomy in 1979, worked for 10 years (but w/lots of problems), then tried a Barnett pouch (5 surgeries in one year!), now have regular bag-pouch...all started from ulcerative colitis at age 12...just thankful there don't seem to be big problems, small hernia, just have to chew really well! Sugar (like in a soda) is terrible, goes through like water...I need to lose weight, just eat healthi... Sun, 14 Feb 2010 11:48:06 EST Hi After being misdiagnosed with IBS for two years, in 2007 I was diagnosed with stage two anal cancer. Shortly after finishing chemo and radiation; I had severe abdominal pain. I ended up having a permanent colostomy due to the damage of my colon caused from the radiation. The radiation also damaged my bladder. My name is Sharon, I am 56 years old and I reside in Michigan with my husband, Mark. We also have a cat, a Siberian Husky, and a pair of lovebirds. I currently am doing strength tr... Sat, 30 Jan 2010 11:46:38 EST Getting a j-pouch for Christmas??? Or New Years... Been wanting to do this forever but had to get my weight way done for it. I am worried how bad I will feel after and won't be able to exercise for a while. Better now than latter. No telling what will happen to healthcare if I wait. They would not approve. Will be in hospital during New Years! Sat, 19 Dec 2009 15:33:31 EST how do you exercise I walk for 30 minutes a some chair exercise for 20 minutes Sat, 7 Nov 2009 16:36:38 EST abc healthy food A... apple Sat, 7 Nov 2009 16:34:37 EST Products revisited Hello everyone! <BR> <BR> I just reviewed the length of wear thread to see if I could pick up any info, but though I'd add a new thread to see if anyone has any advice. <BR> <BR> Apparently I am allergic to my bag, we are hoping specifically it is the adhesive in the tape on the convatec bags, so I am in the midst of testing other products. <BR> <BR> My problem is that everything else I've tested fails pretty fast (or I am so paranoid it is that I take it off and switch). <BR> <BR> So far... Wed, 28 Oct 2009 01:28:01 EST hi I am new to this team, hoping to support others as well as get support Sun, 25 Oct 2009 15:04:10 EST Hi, I am also new to the team. I am a 42 year old female with an ilieostomy for 12 years. Had a two year battle with Ulcer of Colotis then ostomy surgery. Five years later discovered I have Crohne's Disease and had perfirated stomach ulcer surgery. I have been taking Remicade for almost 6 years. Last week the doctor told me my Crhone's and RA are under control. I was in shock! My former doctor never told me I had RA! I help my husband on our dairy farm. I have 3 grown step children. We haven't had an empty nest for a full ... Sun, 11 Oct 2009 02:51:28 EST moldable wafers Guess youall can tell by my posts i am having issues with my supplies. I am getting a sample sent to me and suggested by convetec of a moldable type waffer. Does any one use these and can tell me about them? <BR> <BR> ALso how close to your stoma do you think your waffer cut-out should be? justbea <BR> <BR> no one relied to my other question on here yet guess every one is busy? Thanks to anyone who can answer either . Sun, 13 Sep 2009 00:18:34 EST stoma sizes ANYONE KNOW WHERE ONE CAN OBTAIN A PAPER PATTERN TO MEASURE STOMA SIZE? <BR> <BR> ALSO <BR> <BR> dO YOU CUT HOLES IN YOUR WAFFERS OR USE PRECUT ? <BR> <BR> HOW CLOSE TO THE STOMA SHOULD ONE COME? <BR> <BR> A PAL OF MINE HAS HERS VERY CLOSE ALMOST ON IT <BR> <BR> IS THIS GOOD ? I WAS TOLD TO USE LARGER HOLE THAN <BR> <BR> STOMA BY AN ET LONG AGO . JUSTBEA Sat, 12 Sep 2009 11:19:40 EST wafers? can any one tell me what is difference in these two wafers- <BR> <BR> stomahesive or <BR> <BR> durahesive <BR> <BR> <BR> i use stomahesive , i have a longer stoma, <BR> <BR> pal of mine says durahesive she uses for flush. <BR> <BR> Any one have opinion on DIFFERENCES? <BR> <BR> thanks just bea <em>58</em> Sun, 6 Sep 2009 14:21:32 EST Cymed pouches Anybody have any experience with the Cymed microskin pouches? They were backlogged on orders from last year... and I guess they still kind of are because they're not giving out samples anymore. <BR> <BR> Have you seen them? <BR> Just wanted to know what you think. Fri, 21 Aug 2009 12:36:09 EST hi new to this team looking forward to this team and sparks and supportring each of you Wed, 19 Aug 2009 10:56:50 EST Anyone considered getting the J-pouch? I always wanted the jpouch but the doctor wanted to make sure I didn't have when he waited too long after my illeostomy surgery, my depression from the bag helped my weight ballon up from 85 lbs to 170! Yuk at 4'10"... I went when I was 150 and he said he wouldn't do the pouch until I lost 20...I gained 20 more making the 170. Dumb.. now I have lost the 40 and he said better outcome with more weight off! So I will have it done after I have lost 50 pounds!!!! Had anyone known so... Tue, 18 Aug 2009 16:42:02 EST Hi there from a new member. I just wanted to say hello to my new team and tell a little about myself. I'm 46, overweight & out of shape. I am a 12 year colon cancer survivor with an ileostomy. I am currently unemployed, since April, and decided that I would try my best to use this time off productively and not get in a rut sitting in front of the TV gaining even more weight. I stumbled across the spark people web-site and have been hooked ever since. Looking forward to communicating with new friends. Fri, 14 Aug 2009 12:24:20 EST SWIM SUITS ANYONE WANT TO TELL WHAT TYPE THEY WEAR THAT HIDES POUCH BEST THEY HAVE TRIED. I START WITH MINE WHICH HAS BEEN UP TO NOW A SUIT WITH A SKIRT. I HAVE NO LEG ISSUES THO AND THEY DRIP SO MUCH AND NEVER REALLY DRY NOR CAN YOU SUN . I HAVE A FARMERS TAN MINUS TOP OF MY LEGS DUE TO THIS TYPE OF SUIT I AM SICK OF TO BE HONEST. THERE VERY COSTLY ALSO. <BR> I HAVE DECIDED TO TRY NEWE OPTION: <BR> TOP OF MY TWO PIECE WHICH IS LONG AND A PAIR OF " BOARD SHORTS "VERY TIGHT AND REALLY EXERCISE ... Fri, 14 Aug 2009 10:55:16 EST JUST A HOWDIEE TO ALL HELLO TO ALL, <BR> <BR> SAYING HI FROM NORTHWEST FL, IS ME JUST AN <BR> <BR> OSTOMY LADY HERE TO LOSE A FEW POUNDS .. WITH HELP. ODD HOW THEY SEEM TO GO TO .. THAT AREA NOW THE POUNDS . JUSTBEA <em>9</em> Wed, 12 Aug 2009 21:53:22 EST Cosmetic surgery Hi everyone! <BR> <BR> I'm at the point in my life where I look in the mirror and begin rethinking my stand on "cosmetic medicine." <em>41</em> <BR> <BR> Then I wondered if I could get it done on my belly? Can they do a tummy tuck or liposuction when you have an ostomy?? <BR> <BR> Anybody think of this or done it? What are your opinions? Sat, 8 Aug 2009 12:03:38 EST Use an emoticon to express how you feel... <em>213</em> Sat, 25 Jul 2009 12:19:05 EST Where is everybody?? Hi All, <BR> Where is everybody on this team? I know we're not that big but people haven't posted here for days. Let's support each other in our new healthy lifestyle changes!! <BR> <BR> Hope to chat with you all soon... <BR> <BR> Peace, <BR> Lori <BR> <em>252</em> Wed, 22 Jul 2009 17:54:50 EST I have a BCIR!! I have a BCIR. Had it since 1996 and it works great!! No real problems with it only minor issues taken care of with antibiotics. <BR> <BR> If anyone needs info on the BCIR you can contact me here or email me or if you have a BCIR I'd love to hear from you too!! Thu, 16 Jul 2009 17:24:33 EST Hi!! Hi to my fellow ostomates!! I didn't know there was a spark team for us but I guess I never really looked until now. I'm so glad I found this team! <BR> <BR> I was diagnosed with UC when I was 10 and had a total proctocolectomy when I was 32. I had a temporary Brooke ostomy for 6 months and elected to try the Barnett's Continent Intestinal Reservoir (BCIR). I've had it since January 1996 and I love it. I've had minimal problems with the ostomy itself and only a handful of minor infectio... Thu, 16 Jul 2009 17:21:42 EST Sorry I'm MIA! Hi everybody! Sorry I've been out of contact for so long... too much going on for me to handle. Came back in June after what was supposed to be a short two week stay in the northeast -- turned into almost 3 months! And before I could get myself settled, my cousins arrived from Taiwan. We went to Disney World and now I'm filing a complaint with the state against them for violating my rights! I can't talk too much about it right now. But they are obviously unprepared to deal with the chan... Fri, 10 Jul 2009 02:14:11 EST What kind of belts does everyone use? Since I first got my illeostomy in Nov of 2007 I have been researching different belts to wear to smooth the bags down close to the skin. I love my belt that I bought online from a French company. It's basically pantyhose material large enough to cover your entire stomach and smooth out the bag so that it lays flat against the skin. However, in the summer time it is really hot and tends to get uncomfortable in the warm weather. <BR> <BR> I was just wondering if anyone knew of any other belts... Tue, 30 Jun 2009 09:21:52 EST Nice to find this team I am a member of many ostomy forums, but am very happy to see that there is a group of us on SP too. Weight loss and IBD and ostomies are, for me at least, very intertwined, and there are some things that come up that I wouldn't feel comfortable discussing on a message board in the non-ostomy community. So I am looking foward to getting to know some of the people on this team, and also to see if anyone I know from other sites (C3life, Facebook, etc) is here too. You'd know me as Kermit on C3.... Sun, 28 Jun 2009 12:35:48 EST a filter that actually works...! Hi there! <BR> <BR> I'd thought I'd drop by with my experience with a pouch that has a filter which actually WORKS! <BR> <BR> I'm one of those people who panics over a ballooning pouch so finding one with a good filter was essential. For awhile I was using Hollister's Karaya pouches that have a replaceable filter. I loved it! The problem with most filters is that when they get wet, they become useless. But I could replace the filter whenever I needed to. Unfortuantely they were one p... Sat, 20 Jun 2009 21:34:50 EST For ostomates with no insurance... Check out these groups for supplies... <BR> <BR> <BR> <link> </link> <BR> <BR> <link> </link> Sat, 20 Jun 2009 21:25:18 EST Eating healthy with an ostomy So, in one of the other topics, someone mentioned obstructions when eating a lot of fruits and vegetables and it made me much fruits and vegetables do you all tend to eat? <BR> <BR> a year out from my ostomy surgery and I still avoid most fruits and vegetables. I try to reintroduce various produce back in my diet, but I'll admit I am terrified of the pain and hassle when something gets stuck (thankfully, I've had blockages but no obstructions.) <BR> <BR> I keep a list of no-no ... Sat, 9 May 2009 01:24:14 EST I have a illeostomy since April 2006! Not what I expected after 55 but I feel so much better than with the sever ulcerative colitus. I thought it would be nice if we knew what everyone had? Want to get the rest of us active? Thu, 7 May 2009 14:23:12 EST Sure Seal Rings save the day in summer! These come in 2 sizes: square medium and round small. Thin sheet of sticky plastic that make the wafer waterprooff. I use both sometimes when real hot. I walked a 1/2 Marathon and during training with these. They also help when swimming. <BR> <BR> <link> </link> <BR> <BR> Email them for samples or try to get Edgepark to send samples? Thu, 7 May 2009 14:20:59 EST so hard to diet, when you are constantly hungry.. various things make food dash through me really quickly and then i am hungry just liked i'd never eaten.. anybody else have this problem and what do you do? Thu, 19 Mar 2009 14:39:37 EST What is the length of time you can wear a bag? i get 4 days now and thats the most... curious if i should change to something different. i've been in this particular Hollister bag almost for 30 years. so i hate change as i know it. Sun, 15 Mar 2009 22:30:01 EST Is This Group Still Active? Hi All, <BR> <BR> I just found this 'team' and as I am an ileostomist of 6 years, and am trying to lose weight I thought I'd introduce myself. <BR> <BR> My name is Ammi, I frequent one other weight loss site and one ostomy board. I figure joining this team should be the best of both boards. Though it seems we need some more action. <BR> <BR> I am 40, married with one precious daughter and one step daughter from hell. I live in South Wales, and I've been dieting on and off for as lon... Tue, 20 Jan 2009 10:43:04 EST Alloderm for hernia repair? Hi Everyone - <BR> <BR> Hi - <BR> <BR> Has anyone had a parastomal hernia repair using Alloderm? If so how long ago and was in successful? <BR> <BR> I am heading for hernia repairs around the colostomy and the surgeon wants to use Alloderm. <BR> <BR> Any information would be gratefully appreciated. <em>304</em> Sat, 18 Oct 2008 20:57:27 EST Eating issues Does anybody besides me have digestive difficulties? What CAN you eat? What do you avoid? <BR> <BR> I have stomach dumping with short bowel syndrome. Vegetables are a waste of time. I'm always hungry! Beans, pinto and black, seem to slow things down and stick around longer. Looking for something satisfying that isn't full of fat and sugar. Wed, 10 Sep 2008 22:55:22 EST Back in action! Just wanted to drop by and say "hi" and find out how everyone is doing. I've been in Florida for over a month... yes, in direct line with "hurricane" Fay. The darn "eye" hung over us for two days and dumped tons of water! But overall, the trip seemed to help my recovery and I am doing much better. <BR> <BR> Drop me a line and tell me what you've been up to! Sun, 31 Aug 2008 14:54:31 EST Ostomy questions What type of Ostomy do you have? <BR> <BR> How long have you had your Ostomy? <BR> <BR> IF you do not mind answering why did you need the Ostomy? Mon, 18 Aug 2008 05:21:02 EST Colostomy help Hi Team - <BR> <BR> I do not know how many here have Colostomies but was wondering if you do have you had issues with bowel obstructions due to eating so many fruits and veggies? <BR> <BR> What do you do to help with this? Wed, 23 Jul 2008 05:20:31 EST Can we share what products we use and like? We all went thru the maze of companies and products to use with our condition and it would be nice to see what everyone found to work best. Maybe in sharing we can find something new for ourselves? I'm in the mist of needing to try something new. My old wafers are melting when I do lots of exercise! Don't want to use that as an excuse. Now I have to change? I love the Coloplast Assura line because they had a extra large bag I could use at night and not have to get up all night! If you all ar... Tue, 6 May 2008 10:54:34 EST Can we share what products we use and like? Some how two of these got posted...sorry! <BR> <BR> <em>20</em> <em>30</em> <em>213</em> <em>220</em> Tue, 6 May 2008 10:54:16 EST What are you all up to? Still here? What new things have you found to make 'Living with an Ostomy' easier and more bearable? What things help you exercise when it gets warmer? Do you all swim, bike, exercise and all the other stuff? What things have you found out you cannot eat? <BR> <BR> Just curious...! <em>213</em> Wed, 16 Apr 2008 12:42:23 EST Now 2 Ostomy teams? Have ileostomy since 2006! Wow, this team and the other one I found a long time ago...Weight Loss with an Ostomy Team! We now have 19 members so far! Now I find you all! I am lucky that sticky glue on the wafers does not bother me. A friend at my Ostomy group has to use the old fashioned Kaya pouches with a milder glue. I love the Sure Seals to add protection to my regular wafer. They help went swimming or sweating from exercise. Use them when I walked a Half Marathon and now with my spinning classes and long bike... Wed, 9 Apr 2008 16:02:48 EST Allergic to glue! Okay, I'm a little new to this ostomy-thingy and I've started to have itching and burning from the glue used in the wafers. My ET nurse has recommended some non-glue pouching systems using silicone wafers. Anybody ever heard of this? Try it? I'm getting desperate as I am scratching myself to death! Tue, 4 Mar 2008 22:04:31 EST just a little hi just wanted to drop by and say hi.I dont know that many ostomates so it would be nice to talk to more people who understand my thought process. <em>104</em> Mon, 18 Feb 2008 10:30:23 EST Hello Hi my name is Kara and I've been living with an ileostomy for 2 months now (so its still new to me and I'm still getting used to it). I would really love someone to talk to about it because it's hard to talk about it with my family or friends because they don't really know or completely understand what I'm going through and am living with. Thu, 17 Jan 2008 01:15:14 EST