Guest Book
Hi there, come on in and SIGN our Guest Book
| Your name: | Janice Hauser |
| E-mail address - Optional: | merleandjanice@yahoo.com |
| City, State or Province: | Cochranton,PA |
| Country: | USA |
| Your comment or story: | I was 50 when I got my ostomy. I was in a serious auto accident Aug. 19, 2005. My legs were almost torn off and the Dr. on call decided to clean out knees to see if they could be saved, thanks to Jesus they were saved. Anyways, in Nov. 12, 05, my insides were messed up. Flown to Erie and they did an illeostomy on me,(this was all due to the MVA) until after the surgery was over and was given a 99/% chance of survival. I prayed again and Jesus saved me again and I was in heaven for a very short time. I asked that I wanted to live and not die and my prayer was answered. So, here I am going on 3 years of new life. I thank my God daily for life and my family. |
| Your name: | Robert Gutierrez |
| E-mail address - Optional: | timebandit1118@yahoo.com |
| City, State or Province: | San Antonio,Tx |
| Country: | Good ole "USA" |
| Your comment or story: | I have had my ileostomy now since April 2004,due to stage 3 co/rectal cancer.Yes it gets to me having one but i have three daughters and my wife who i have to here for and to be strong for also.I am now a stay home Dad due to my illness.I have become a stronger Christian husband and dad thanks to God!! |
| Your name: | mary |
| E-mail address - Optional: | missnancy48@aol.com |
| City, State or Province: | philadelphia |
| Country: | usa |
| Your comment or story: | i just wanted to let you know how thankful i am that i found this website. i've met and talked with the most wonderful people . it has helped me a great deal , mentally . it has got me back on track to a speedy recovery.just knowing other people with similar problems offering their solutions has been a god send.
thank you all so much . i'm doing much better and would love to be of help to anyone with questions . thank you . |
| Your name: | wilson nyakoko |
| E-mail address - Optional: | wilson18710@yahoo.com |
| City, State or Province: | Chitungwiza |
| Country: | Zimbabwe |
| Your comment or story: | I am appealing to anyone who can send me urostomy begs .Our health system is not working very well so please help me.My address-Wilson Nyakoko
18710 Unit L Seke South Chitungwiza Zimbabwe |
| Your name: | Lizzie |
| E-mail address - Optional: | izzmoyo@yahoo.com |
| City, State or Province: | chiredzi |
| Country: | Zimbabwe |
| Your comment or story: | Hey guys
My name is lee and i am 22.I have a permanent ileostomy due to Ulcerative Colitis.My ostomy is turning 2 on the 14th of june.I have been having lots of problems with my boyfriend and my ileostomy but then we broke up Last month before my birthday, he was too tired of being in a relationship with two women me and my ileostomy!.Now I am in love with a friend but aaaaah he doesn`t know yet he is so caring ,cute and I love him He has both,I mean a urostomy and a colostomy ooooh and he sang for me on my Birthday.We have never met but we talk on the phone almost everyday and i have seen his pictures he is really hoooot. Hope things will work out btwn us Love lee |
| Your name: | Lizzie |
| E-mail address - Optional: | izzmoyo@yahoo.com |
| City, State or Province: | chiredzi |
| Country: | Zimbabwe |
| Your comment or story: | Hey guys
My name is lee and i am 22.I have a permanent ileostomy due to Ulcerative Colitis.My ostomy is turning 2 on the 14th of june.I have been having lots of problems with my boyfriend and my ileostomy but then we broke up Last month before my birthday, he was too tired of being in a relationship with two women me and my ileostomy!.Now I am in love with a friend but aaaaah he doesn`t know yet he is so caring ,cute and I love him He has both,I mean a urostomy and a colostomy ooooh and he sang for me on my Birthday.We have never met but we talk on the phone almost everyday and i have seen his pictures he is really hoooot. Hope things will work out btwn us Love lee |
| Your name: | Kathleen |
| E-mail address - Optional: | cktm1234@aol.com |
| City, State or Province: | Boston, MA |
| Country: | USA |
| Your comment or story: | I had surgery in June, 2007 for recurrence of Ovarian Cancer and ended up with an infected and perforated colon. Another surgery in July to remove part of the colon and a temporary colostomy. Then the doctor decided that the temporary should be permanent but has now agreed to a reversal as long as I understand the risks - mostly infection. As much as I don't want to live like this forever I am a afraid of what could happen. Any help will be appreciated. I am seeing the GI surgeon in early April. Thanks |
| Your name: | Terry (Antonio) |
| E-mail address - Optional: | teximtex@hotmail.com |
| City, State or Province: | Manchester |
| Country: | England, UK |
| Your comment or story: | I have FAP had the operation in 1981 after twelve years of absolute pain and severe incontinence have returned to work after years of dehydration, after breaking heel/ankle in 1984 wife no longer wanted to be married to a cripple that was a freak of nature - Have manged to answer her perverse viewpoint, as are working as photographer and have a wonderful female friend Sara and many friends now.
If anyone has a partner like that eject them from your life and get your own life - it is a lovely world now as have no troubles and yes are confident - have a nice day! |
| Your name: | Robert C Holcomb |
| E-mail address - Optional: | robcholcomb@cox.net |
| City, State or Province: | Providence, R I 02906 |
| Country: | U S A |
| Your name: | Rox |
| E-mail address - Optional: | cea05@brightchoice.net |
| City, State or Province: | Marengo, Ohio |
| Country: | USA |
| Your comment or story: | As an ostomate and an ET nurse I appreciate this site. We all are constantly learning from others and this site provides that resource. I have a permanent colostomy as a result of rectal cancer Oct 2001(radiation/chemo). I feel blessed every day. I have had one other surgery for bowel obstruction-2004- from adhesions-may have been a result of a combo of radiation and surgery. Thank you for this resource. |
| Your name: | Vickie T |
| E-mail address - Optional: | victak@hotmail.com |
| City, State or Province: | Diamond, Ohio |
| Country: | USA |
| Your comment or story: | Ileostomy done on December 2007 - hopefully to be re-connected at a later date. Looking for support, tips and facts! |
| Your name: | darrell w nixon |
| E-mail address - Optional: | dwnx2003@yahoo.com |
| City, State or Province: | des moines ia |
| Country: | usa |
| Your comment or story: | had a colostomy 1/7/08 bi problems yet. wondering how long other people took to reverse it. do they use the same
cut as before and did you have any problems. |
| Your name: | bill b |
| E-mail address - Optional: | sparkle001@att.net |
| City, State or Province: | burbank, ca |
| Country: | u.s. |
| Your comment or story: | I've learn a lot since I had my ostomy. Had it reversed a month ago. Still in some pain, but it's getting better.
Sincerely, Bill |
| Your name: | CallMeJane |
| E-mail address - Optional: | callmejane88-hernia@yahoo.com |
| City, State or Province: | Michigan |
| Country: | USA |
| Your comment or story: | I had emergency surgery 9/27/07 for "stercoral perforation" of the sigmoid (descending) colon. No DV, IBD, Chron's or anything. Perfectly normal colon otherwise. About 8-9" removed; temporary end colostomy. Since then a small grapefruit-sized parastomal hernia; wear a hernia belt. REVERSAL SCHEDULED for 2/13/08--5-1/2 months later. AM SCARED of complications. Reversal will be open, to reattach colon, repair parastomal hernia, and fix keloid scar mess twisted up right at my belly button. He says he can make central incisional scar better if he can remove my BB as well. Fine by me--I'd rather have a better less adhered-to-my-insides scar than keep my BB. MAIN WORRY: Hernia repair. I hear it is not very successful BUT these are mostly studies of people who had the repair while KEEPING their stomas. My stoma will be gone, and he plans to use alloderm in repair, sew up ostomy hole mostly, leaving a little bit open for wet-to-dry healing to reduce chance of infection. PLEASE, ANYBODY WHO HAS HAD A SIMILAR HERNIA REPAIR, please email me w/ any advice. I really want to do the right thing here & my surgeon is open to suggestions. Thank you! |
| Your name: | marilyn saxon |
| City, State or Province: | nichols, SC |
| Country: | USA |
| Your name: | Jeremy |
| E-mail address - Optional: | patjer08@yahoo.com.au |
| City, State or Province: | SALISBURY EAST, STH AUST |
| Country: | AUSTRALIA |
| Your comment or story: | I have found this site to be very useful & informative.
Support for Ostomates & people with Bowel Cancer is non existent here in South Australia, apart from my Stomal Therapy nurses who have been extremely good & patient. I have recommended that they mention this site to other new Ostomates. My operation was an unplanned one for bowel cancer in October 2006 and I awoke, shocked, to find that I had an Ileostomy. It did not take long to get the hang of things despite the initial reaction. Life is pretty much back to normal with work, gym & swimming although the ongoing treatment for the remaining Cancer (Xeloda tablets) does affect energy levels at times. Still, at least I am still alive, able to do these things and am saving for a holiday for our 40th wedding anniversary in 2014. |
| Your name: | kendra |
| E-mail address - Optional: | nykkole6@yahoo.com |
| City, State or Province: | statesville nc |
| Country: | usa |
| Your comment or story: | I have a urostomy, Have had one for 10 years now. some days I feel like crying all day. I do not mean to feel sorry for my self, but i just have so many problems with it. It leaks all the time and I am on medicare so the bags cost so much and I can only get 20 a month, they changed my paste and my bags do not stick. Some days I have to wear a towel all day cause i have changed my bags 6 or 7 times that day and I am out of bags till next month. I wear Cymed. I guess i just needed some one to cry to sorry, Kendra |
| Your name: | Ginny |
| E-mail address - Optional: | ketobudi@yahoo.com |
| City, State or Province: | PA |
| Country: | USA |
| Your comment or story: | Hello. What a nice site. I hope my question isn't too personal. My friend had his colostomy reversed about 4 months ago. While he experienced some sexual difficulties during the 8 months that he had the colostomy (for Colorectal CA) since the reversal he is not able to do anything. This has him depressed now. Also he is still needing to wear diapers for sudden bouts of diarrhea. After he went through the surgery, had chemo and radiation and the Dr told him he was clear - he was so happy. And the Dr said it would take a while for everyting to ge back to normal. I have been trying to help him emotionally and am glad I found this site. He doesn't use a computer so I am asking if anyone has had this problem if you have any advice I can give him. He is 53 years old. I appreciate all of the stories I've read here. And hope that everyone dealing with this makes out OK. Please send e-mail to ketobud@yahoo.com. Thank You, Ginny |
| Your name: | Dee |
| E-mail address - Optional: | snooty369@yahoo.com |
| City, State or Province: | Salem,Va |
| Country: | USA |
| Your comment or story: | Hi My Name is Dee in 2003 I had A Hemorrhoid Surgrey And after that I My stool kept coming out all the time it was so bad I had to were A pad and I was very rawl couldnt hardly walk so I had A colostomy in 2004 but not doing to good with it so finaly I went to another doctor and he had told me that when I had my daughter caused A 2 or 3 tear on my anus and I would have to have surgrey to correct it so I had all the test and he said that he would have to overlapp my anus to make it tighter and than I could get change over has any one had this would like to talk to you about how much pain |
| Your name: | Julie |
| City, State or Province: | Manchester |
| Country: | England |
| Your name: | Gloria Huff |
| E-mail address - Optional: | gdbhuff@comcast.net |
| City, State or Province: | Richmond VA |
| Country: | USA |
| Your comment or story: | My mother-in-law had 3 surgeries in 3 days last Christmas, due to ruptured colon (day 1), dead tissue (day 2), repair and ileostomy (day 3). We have had constant problems with the bag- it won't stay on. We go through 2 to 10 bags a day. I'm about to lose it!! We've tried every paste, cream, spray, powder, eakin, bag, wafer, etc. Nothing works. Tape doesn't help. Home health nurses are baffled. She must stay in bed, due to bag problems. A more normal life would be so wonderful. |
| Your name: | Margaret |
| E-mail address - Optional: | clancymcg@sympatico.ca |
| City, State or Province: | Ontario |
| Country: | Canada |
| Your comment or story: | Just wanted to wish all of my friends in Ostomy Land the very best for Christmas and the New year. Let's hope for a coming year of Peace and Goodwill to All.
Be grateful for good health and the ability to exist with a handicap whatever it may be. I thank God for my :bag: every day. . |
| Your name: | sarah Floerchinger |
| City, State or Province: | Phoenix |
| Country: | usa |
| Your comment or story: | Infant with ileostomy can't go a day without changing bag several times
|
| Your name: | Mel |
| E-mail address - Optional: | familygals@eastlink.ca |
| City, State or Province: | Halifax, NS |
| Country: | Canada |
| Your comment or story: | Hello
My husband just had the reversal surgery and i was reading some of the comments on here from other people. This is a very informative site. Thanks |
| Your name: | Roberta Leeder |
| E-mail address - Optional: | robertaleeder@shaw.ca |
| City, State or Province: | Alberta |
| Country: | Canada |
| Your comment or story: | Hi,
I have an ileostomy (24 years)and my stoma is sick. It's longer, swollen, hard and very painful. I'm waiting to see a specialist. If anyone else has gone through this I would really appreciate some advice or help. It's been so long since I've had any problems, this is disappointing. |
| Your name: | Wendy |
| E-mail address - Optional: | cowpads2002@yahoo.com.au |
| City, State or Province: | NSW |
| Country: | AUSTRALIA ~ OZ |
| Your comment or story: | Haven't signed in for a while, I appriciate this site so much. I had Colon Cancer & Rectal. But that was in 1999, I have a permanent Ileostomy. But I am still here and still of use to the world family and friends, and raising a 7 year old Grandson, yes I am Nanny to 5 boys under 10yrs. Pretty good if I do say so myself. Regards Wendy, email me if you like to have a chat. Ciao ! |
| Your name: | Jessie |
| City, State or Province: | East Islip, NY |
| Country: | USA |
| Your comment or story: | I had surgery in January 2007 for colon cancer and left the hospital with an ileostomy. Have gone through "aggressive chemotherapy" (which is finally finished) and will have the ileostomy reversed in January of 2008.
I know I am very lucky that I am well on the road to recovery. I wanted to express my appreciation for the the "Evansville Ostomy News". The information, suggestions, tips and humor have made my journey much more comfortable and I am grateful. |
| Your name: | Betty |
| City, State or Province: | Freehold, NY |
| Country: | USA |
| Your comment or story: | Just dropping in to say "hello". I haven't written for awhile. |
| Your name: | Becky |
| E-mail address - Optional: | rbmorris@pldi.net |
| City, State or Province: | Oklahoma |
| Country: | USA |
| Your comment or story: | I had cancer in my bladder in Dec 2005. We had no chose but to take out the bladder and have a Urostomy. Well that was better than cancer. My problem is they had to take some of the vaginal area out due to the fact that the bladder is hooked to the vaginal area. For about a year now it hurts so bad when my husband and I have intercouse. I have been to GYN, 2 Urologist, 2 Surgeons. But no one can help me. Can someone help me please.
Oh! By the way "I love this site." |
| Your name: | Belinda Robson |
| E-mail address - Optional: | binnirob@btinternet.com |
| City, State or Province: | Scarborough |
| Country: | England |
| Your comment or story: | Have had ileostomy for 3 years followed by rectal excision 2 years ago. Also have had MS since I was 15. Anyone else got that strange combination? Anyone like to write from anywhere. All mail and contact gratefully received!Excellent website means you're not alone. Have no family or friends much so contact with people who understand is great. Greetings to all you brave ileostomates. |
| Your name: | Brandy McConnell |
| E-mail address - Optional: | brandyto81_38@yahoo.com |
| City, State or Province: | Edinburg, Illinois 62531 |
| Country: | USA |
| Your comment or story: | Looking for some support,wether it be pen pals or anything. I have chrons disease diagnosed in 96 I am 26 now. Have had multiple surgeries. Have a permanent ileostomy. Have had over 75 kidney stones. Starting to get very depressed. Any help of any kind would be of great appreciation.
Thanks, BRANDY |
| Your name: | Bob Capurso |
| E-mail address - Optional: | robert.capurso@cityofyonkers.com |
| City, State or Province: | NY |
| Country: | USA |
| Your comment or story: | Hi, I'm 45, with an ileostomy since '03. I enjoy checking in with this site every now & then, and I like the newsletters. Go Evansville! |
| Your name: | carolyn spain |
| E-mail address - Optional: | cspain4912@msn.com |
| City, State or Province: | silver spring md |
| Country: | usa |
| Your comment or story: | I just came back from the hospital with a hernia that caused a very painful blockage.
any information on treatment options would be appreciated. I had my surgery 40 years age and am now 77,slim and in good shape |
| Your name: | rusty |
| E-mail address - Optional: | dreamjumper@aol.com |
| City, State or Province: | knoxville, tenn. |
| Country: | U S OF A |
| Your comment or story: | THANK YOU THANK YOU THANK YOU.,.,.,FOR ALL YOUR STORIES, IT MAKES MY 12 YEARS OF DEALING WITH CANCER,MINAMAL,COMPARED TO SOME OF YOU. GOOD LUCK TO EVERYONE OF YOU ! AND MAY GOD BLESS YOU |
| Your name: | Val Hollard |
| E-mail address - Optional: | vksyn@xtra.co.nz |
| City, State or Province: | Kerikeri Northland |
| Country: | New Zealand |
| Your comment or story: | I have Crohns disease, I am an old crohn, I was diagnosed
4 years ago at the age of 72. I didn't know I had a sick colon until I lifted a heavy table and tore my colon and fractured my back which resulted in the diagnosis and a colostomy. I look at this as just a fact of life I am alive and well, the only thing troubling me is a stoma hernia, I will not attempt to have it repaired because it is not always successful and I would rather stay as I am, thankyou for your newsletter, I look forwar to reading it. Take care everyone, love from New Zealand. |
| Your name: | BETTY CURRY |
| E-mail address - Optional: | betty.curry@comcast.net |
| City, State or Province: | CLOVIS |
| Country: | USA |
| Your comment or story: | I'VE HAD AN ILEOSTOMY SINCE 1993. I HABITUALLY HAVE DEPLETED SODIUM AND IRON. ANY ONE ELSE WITH THAT PROBLEM OR SUGGESTIONS? |
| Your name: | Joey |
| E-mail address - Optional: | stpierrejoey@yahoo.com |
| City, State or Province: | Cut off, La.. |
| Country: | USA |
| Your comment or story: | Thank you, it was very informative reading every ones comments.. |
| Your name: | Jennifer Roberts |
| City, State or Province: | Maryland |
| Country: | USA |
| Your name: | Karen Heister |
| E-mail address - Optional: | momheister@comcast.net |
| City, State or Province: | Palmyra, Pa. |
| Country: | U.S.A. |
| Your comment or story: | Thank you for all the info it really helps!! I enjoy your site |
| Your name: | Florence & Doug Siddall |
| E-mail address - Optional: | siddall@eastlink.ca |
| City, State or Province: | Pictou Nova Scotia |
| Country: | Canada |
| Your comment or story: | Doug has a Colostomy, And I have an Ileostomy, He had Rectol Cancer & I Ulcerative colitis. Doug has been Cancer free for 13 years and I, after three major Opperations am doing quite well, oh we have made several trips to the Hospital with Blockages, but that is something we try to control. In one of your News Letters there were forms to print off about Emergency Room Information, could you let me know which one. I did print some off but have used them and we found them wonderful. I made them up ahead of time & when one of us had to go the Information was right on hand
as we are usually in a hurry. Enjoy Your News letter and find many helpful tips. Thanks from Both of us Sincerly Florence & Doug. |
| Your name: | Eva |
| E-mail address - Optional: | evabernath@comcast.net |
| City, State or Province: | Sali, MDsbury |
| Country: | USA |
| Your comment or story: | I had a routine colonoscopy inJune of 2007 and was hospitalized with pain in lower left abd quad on8/9/2007
Thank youand had to have a bowel resection and a colonoscopy. I would love todialogue with any one who may have had a similar experience. I was dx with diverticulosis and told to increase fiber which I did. A mystery. Thank you |
| Your name: | Ted |
| E-mail address - Optional: | tdhooge@aol.com |
| City, State or Province: | Jupiter, FL |
| Country: | USA |
| Your comment or story: | I just posted this to one of your folks, thought it might help someone else. Ted |
| Your name: | Gary Reynolds |
| City, State or Province: | Orlando |
| Country: | United States of America |
| Your comment or story: | Thank everyone so very much for all the advice and encouragement. I have had my ileostomy for just over a year now and am gaining confidence by the day. Every contributor's tips and advice have been a great help. I have realized that there is really nothing one cannot do with an Ostomy given the proper knowledge. Thanks everyone. |
| Your name: | Denise Sertã |
| E-mail address - Optional: | dsjfarah.rlk@terra.com.br |
| City, State or Province: | Rio de Janeiro |
| Country: | Brazil |
| Your comment or story: | Hi!
I am 48 and i have a illeostomy to a bad congenital forming, since I was 4. I'm married and I have a little son with 6 years old. I'm a desingner and I work in a health security company. I'd like to know, where can I find urostomy supplies (by Convatec) in Orlando- Florida. I'll be there in november, 2007, visiting Disney, with my son and husband. Where can I find a good place with a good price? Thank you PS. Sorry about my poor english. Denise |
| Your name: | Linda |
| E-mail address - Optional: | mrsdge@yahoo.com |
| City, State or Province: | NJ |
| Country: | USA |
| Your comment or story: | Thanks for the great info source you provide with your website.
Hi, My Mom has been using the Hollister #3631 colostomy bag ever since her surgery. Hollister (in their infinite wisdom?) has however decided to discontinue that product. I would like to know if anyone could reccommend a product that most closely matches the Holllister #3631. She is so unhappy with the bags they are sending her right now it is affecting her confidence and self image so I really need to find something better for her. Any help you could offer would be so greatly appreciated. Thank You Linda |
| Your name: | Iseilia Fisk |
| E-mail address - Optional: | iseilia@msn.com |
| City, State or Province: | Albuquerque, NM |
| Country: | USA |
| Your name: | Kevin |
| E-mail address - Optional: | kthompson21@austin.rr.com |
| City, State or Province: | Texas |
| Country: | The RED WHITE & BLUE |
| Your comment or story: | May 2004 had 18 inches of colon removed due to perferation.
In and out within 2 weeks. All is O K .COOL Fast foward to Dec 2005. Lots of pain and could not keep anything down. Now have a bowel blockage due to adhesions and scar tissue. Go in to have blockage removed. pretty routine I thought. Surgery on Jan. 2006. Things seem ok until a day later a nurse smells a strange odor in wound area. Doctors verify something not right reopen and find infection causing septic shock and onset of renal failure. Swan -Ganz catheter inserted into my heart.Short time later an abdominal fistula forms. Spent 26 days in ICU then tried to repair fistula.This time wound bed left open to watch for any other problems. 1 week later fistula reappears .SUCK!!! Had another surgery to attempt a resection and be rid of fistula. Came out of this one with an ileostomy and colostomy plus a wide open gut. After 10days no sign of fistula but come day 12 it is back.I about lost it at this point but wanted it gone. 14 months later I was finally released from the hospital with an ileostomt colostomy AND an abdominal fistula that bothers me most of all.Been home now for 5 months. can't do a whole lot with fistula still here.Wound bed quite concave so not much luck with any appliances I've used. |
| Your name: | Pat |
| City, State or Province: | victoria bc |
| Country: | canada |
| Your comment or story: | I've had my illeostomy for over 10 years now. I had to have a second surgery because of crohns desease. So i have no large instestine and six inches of my small bowel removed.
Now i have constant pain and pressure. They say i have no signs of crohns but my liver enzymes are high. Yet the pain is not on my right side. It's where my crohns originally started when i was 5 years old on my left side. I'm getting tired of the run around by doctors. I have signs of swollen ankles, painful boils that bruise after they burst. I was wondering if anyone else has had these signs and still the test came back negative. My blood test say a different story it says my crohns is active and like i said my liver enzymes are up. so the doctor thinks it's my liver. Can the liver cause the same symptoms as crohns. |
| Your name: | A.J.Howard |
| E-mail address - Optional: | ajh428@yahoo.com |
| City, State or Province: | South Carolina |
| Country: | U.S.A. |
| Your comment or story: | I had been having problems with a relationship and thought my nervous stomach was causing my loose bowles.I finally got a divorce in the fall of 2004.In febuary of 2005 my colen ruptured after eating dinner.The pain was severe!I remember going to the hospital and waiting until i passed out.I woke up straped to a hospital bed with no idea what had happened.I guess because im a smoker and had nemoina twice in a short period not too long before i had trouble breathing during surgery.But i came home with a colostomy bag on and got a reverseal about 7 months later.I had some bleeding months later and had pollips removed.My stool has some blood now and then and my stomach upper and lower is still sore?The doctor said the scare tissue left thin walls in areas?I also tire easy?I cant seem to get back to the point where i was before!I asked about physical theropy but the doctor said the weakness would be permanet?I am very greatful to just be alive but is thier anything i can do to rebuild my strenth without over doing it?Please email me!Thanks. |
| Your name: | Patricia |
| E-mail address - Optional: | real_lady@verizon.net |
| City, State or Province: | Troy,Ohio |
| Country: | USA |
| Your comment or story: | I was wondering with all the adjustments being made threw Homeland Secruity and the Red Cross. How ready are these and other facilities to give help an Ostomy patients in an emergency? Where would we go for supplies. I believe that most should be prepared to wait three days before rescue. I can only order so many convex apliances at a time from places such as Edgepark becuse of insurance and Medicare regulations.
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| Your name: | debbie |
| E-mail address - Optional: | debyd@webtv.net |
| City, State or Province: | danbury,ct. |
| Country: | USA |
| Your comment or story: | I have an iliostomy for 1 month.The bags have been leaking. No one seems to know how to stop the leakage. I am now using 2 bags a day. Professionals (ostomy nurses, RN's,Doctor, medical asst.) have no answers.Does anyone have a solution to enable me to keep a bag on for a few days?????Thanks for any help you have. |
| Your name: | Kimmy Jones |
| E-mail address - Optional: | kimjanj@yahoo.com |
| City, State or Province: | Euless, Tx |
| Country: | Tarrant |
| Your comment or story: | I am looking for Ostomy personals. I was wanting to put my picture up but I lost the e-mail and address. If someone could help me I woulsd be greatful.
Thank you so much. By the way I have had my colostomy off and on for 40years. I am 51,and wiuld like to make some friends in the same situation. THank You |
| Your name: | Paula Chappell |
| E-mail address - Optional: | mamafaux24@aol.com |
| City, State or Province: | Brownsburg, IN 46112 |
| Country: | USA |
| Your comment or story: | My Mom (at almost 90 yrs.old), had her colon removed. Dr. Glass determined it would not "reattach" properly, during a minor invasive surgery for bleeding from diverticulitis.
This has caused Mom to live in a nursing home, because her 90 yr.old husband cannot handle (understandably) the day to day work of attending to her bag. She was only allowed a min. of visits from nurses, and attendants, with Medicaire. Our dilemma right now, is allowing her visit her home, restaurants, & relatives, without the horrid "leaking", or "bursting" bag, which she has had occur multiple times. Also, her husband ascertained that not having elastic banded slacks resting on her bag, helped the control of leaks/bursts. We have not heard anything from The Indpls. Chapter of your organization, thus I am writing to you folks, and I'm happy to be a member of an active, and obviously caring group! Thanks, & blessings, Paula Chappell |
| Your name: | Frank J |
| E-mail address - Optional: | franjo@bestweb.net |
| City, State or Province: | Cortlandt Manor, NY |
| Country: | United States |
| Your comment or story: | I had a ileostrmy on July 12, 2007. I am having a tough time with leaking bags. Part of the problem maybe the stool is still too liquid. Does anyone know where I can find a comprehensive list of low fiber foods that will help bulk up the stool. Any help would be greatly appreciated. |
| Your name: | Vivian Lapp |
| E-mail address - Optional: | maggieviv@hotmail.com |
| City, State or Province: | NY |
| Country: | USA |
| Your comment or story: | I just found this site today, very interesting reading other peoples stories. Anyone out there had an incisional hernia yet? I just had one repaired, am in more pain now than before My surgery was in May of 07 and still under care of the surgeon and have to go back in September. Just how common are these hernias? |
| Your name: | sherron |
| E-mail address - Optional: | dhnaii_1@yahoo.com |
| City, State or Province: | orlando fl |
| Country: | usa |
| Your comment or story: | my son 25 yrs old, dx - uc had colectomy in jan 07, j-pouch in june 07, looking forward to have ostomy takedown. I am reading alot of negative stories behind this. Is there any positivity toward this procedure. is there a special diet foods to avoid. look forward to hearing from someone.
mom |
| Your name: | JASON VINCENT MOON |
| E-mail address - Optional: | smithmaureen47@aol.com |
| City, State or Province: | ALDRIDGE,WALSALL |
| Country: | ENGLAND |
| Your comment or story: | IM 40,LIVE WITH MY PARTNER MAUREEN NEAR BIRMINGHAM ENGLAND.HAVE LARGE BOWELL REMOVED & PERMANANT COLOSTOMY DUE TO BOWELL CANCER,I ALSO SUFER WITH GRAND MAL EPILEPSY & BLADDER PROBLEMS OF WHICH IM HAVING BOTOX INJECTIONS INTO THE BLADDER TO HELP.IM WILLING TO HELP OTHERS WHO NEED HELP OR ADVICE ON DEALING WITH EPILEPSY,CANCER OR BLADDER PROBLEMS.E-MAIL ME ANYTIME. |
| Your name: | ken smith |
| E-mail address - Optional: | sasmith1@sympatico.ca |
| City, State or Province: | ont. |
| Country: | canada |
| Your comment or story: | had ulcerative colitis for some time finally needed surgery entire large bowel removed illeostomy pouch installed had j pouch installed during first surgery only an hour to have illeostomy rconnected been two weeks now feel better dr. keeping me on almost liquid diet to prevent stitches in reconected area heal properly some accidents but not even close to being as bad as having wafer let go which i unfortuately had constantly feel like i have been given my life back thankr you dr. bellevue |
| Your name: | Joyce Ike |
| E-mail address - Optional: | joycey5522@yahoo.com |
| City, State or Province: | Jackson Center, Ohio |
| Country: | USA |
| Your comment or story: | Hi,
I have had a colostomy since 2004. I use to swim but haven't since my surgery. My daughter just put a pool in and I would love to swim. I need all the help anyone can give me. I'm so afraid something bad will happen. I'm 52 and have let this surgery change my life. Can I swim without worry? I have 2 beautiful granddaughters that I would love to have fun in the water with. HELP and THANKS Joyce Ike |
| Your name: | Virginia |
| City, State or Province: | Chicago, IL |
| Country: | USA |
| Your comment or story: | Looking for tips for successful reversal of an illeostomy. After a year and a half with illeostomy due to rectal cancer, my friend is ready for reversal. He is concerned about poor bowl control and pain. Any suggestions to prepare and improve outcome? |
| Your name: | wayne Richardson |
| E-mail address - Optional: | wayne716@hotmail.com |
| City, State or Province: | Ft Worth, TX |
| Country: | USA |
| Your comment or story: | I am 80 years old and I had a urostomy 3 months ago. I sure am having misgivings about the choice I made. |
| Your name: | Bill L. |
| City, State or Province: | Phila |
| Country: | USA |
| Your comment or story: | This is best web-site.
These ideas are basic for new ostomates. 1 rely onyour ET nurse 2 Purchase Phoenex Magazine (it conctain address of ocal group that you should join to develp friendships who will asist you with problems) Also latest madical data, products,may spuppliers Hollister and ConvaTEc who have experts to answer question as many others. Our Assocition United Ostomy Assn of America www.uoaa.org Phoenix Magazine PO Box 1605 Mission Viejo,CA 92690 These are basics and from them untold knowledge - experience can add many other suggestions.. We are in a learning quest and each person has unique itness. |
| Your name: | cathy |
| E-mail address - Optional: | cswhalen22@hotmail.com |
| City, State or Province: | illinois |
| Country: | usa |
| Your comment or story: | looking for a pen pal to correspond with. separated and waiting for divorce to be final. 44 years old and have had a illiostomy for around 2 yrs due to uc. thanks to good friends ,loving kids,wonderful brother and strong faith i've come through with a postive attitude! It is a challenge on a daily basis but have met wonderful people who have given me great ideas. Also very curious about irrigating??? please let me know if you have any suggestions....thanks cathy |
| Your name: | ALA OWERRI |
| E-mail address - Optional: | owerri@msn.com |
| City, State or Province: | newberg oregon |
| Country: | usa |
| Your comment or story: | THIS IS AN INTRESTING SITE THAT HAS HELPED ME ALOT. |
| Your name: | sherry |
| E-mail address - Optional: | slucas@nb.sympatico.ca |
| City, State or Province: | Saint John,Newbrunswick |
| Country: | Canada |
| Your comment or story: | I would like to reply to Holly Pelley's letter written on
June 17th 2007.It sounds like your having a terrible time holly with your j-pouch.Five years ago i had a j-pouch which gave me the same kinds of troubles that you are speaking off.I now have a permanant ostomy due to extreme prolems,if you would like to chat more about this i would love to hear from you and share some info with you if i may.Please feel free to write and i'll answer what i possible can..... |
| Your name: | elizabeth mcparland |
| E-mail address - Optional: | elizabeth@emcparland.wanadoo.co.uk |
| City, State or Province: | sowerby bridge |
| Country: | england |
| Your comment or story: | Hi everyone, have never done anything like this before so bear with me.My stoma will be eleven years old on the 4th July.I had rectal cancer which resulted in a permanent colostomy.Small tumours were then found in my liver so I had about eight months of chemotherapy. I am still here to prove it worked. Last Christmas I had to have a hysterectomy due to endemetrial cancer. The doctor said it was not conected to the other cancer which for some strange reason i found wildly funny!! (hysteria)?????Anyway it does me good to read about all the very brave people.If anyone would like to get in touch with me, feel free. |
| Your name: | Aaron |
| City, State or Province: | Delavan, Wisconsin |
| Country: | U.S.A |
| Your comment or story: | I'm 17 years old and have had a temporary colostomy for almost a year due to hirshsprungs disease.
|
| Your name: | Holly Pelley |
| City, State or Province: | Nova Scotia |
| Country: | Canada |
| Your comment or story: | My j-ouch was made in Feb/07 and in May had the external pouch removed so I can go normally like everyone else. I recently had to have the pouch stretched and I am still suffering with diaherra and then constipation. Surgeon tells me all is ok. I have a fisher and sores inside and I am bleeding from these sores. He stated no special diet needed but why am I feeling so crappy. I go to the bathroom anywhere's from 40-50 times a day minimum. Sometimes this may be less but not by much. I need to locate every bathroom. Any advice would be helpful as none is given by my surgeon.
|
| Your name: | Diane |
| E-mail address - Optional: | postiedi@shaw.ca |
| City, State or Province: | Victoria |
| Country: | Canada |
| Your comment or story: | Hi Everyone...
I have a ileostomy due to Crohns. I am 54 and would like to chat with all singles. No one really knows what we go through except another ostomate...I am really lucky, no problems since the surgery. |
| Your name: | Milton Cooper |
| E-mail address - Optional: | medi_cooper@yahoo.com |
| City, State or Province: | Auburndale Fl |
| Country: | USA |
| Your comment or story: | NO COMMENTS AT THIS TIME |
| Your name: | Linda Kattenbusch |
| E-mail address - Optional: | lkatten@gov.nl.ca |
| City, State or Province: | Gander, Newfoundland |
| Country: | Canada |
| Your comment or story: | I have been diagnosed with ulcertative colitis 25 years ago. I am married with two beautiful daughters, one 11 and 9. Over the last ten years or so I have had three major flare-ups which I was hospitalized, one being Apr. 27/07 to May 20/07. I am now on prednisone and remicade every 8 weeks. I am in remission and feeling good. While I was in the hospital my gastroenterologist suggested I see a surgeon during my hospitalization which I did. I want the surgery but very scared. Anyone with words of encouragement or otherwise? TKS |
| Your name: | TERESA SANCHEZ |
| E-mail address - Optional: | TERE376@AOL.COM |
| City, State or Province: | ILLINOIS |
| Country: | USA |
| Your comment or story: | 56 YEARS OLD OWN A COLOSTOMY AND UROSTOMY.
BEAUTIFUL WEB. |
| Your name: | diane |
| E-mail address - Optional: | nediane611@verizon.net |
| City, State or Province: | boston Ma |
| Country: | USA |
| Your comment or story: | Hi All,
Checking in to once again praise this wonderful site for all the valuable information it has passed on to folks like us with ostomy problems Hi Whilma in Brookline: I lost your e mail address and think of you often Hope all is going well And Sandra in West Virginia. I am still here. Right now I am dealing with some liver issues and just recently had the fluid on my lungs removed. I was in the hopital in February with internal bleeding in my stoma due to coumadin. Had to stop taking it and a vena cava filter was put in the vein. I found adhesive stoma powder does help the wafer adhere to the skin better. Might not work for all, but worth a try. Am here for anyone who wants to vent and we do all have those days. Right?? Diane |
| Your name: | Tammy J. Wampler |
| E-mail address - Optional: | osamiface38@yahoo.com |
| City, State or Province: | Bremen, Ohio |
| Country: | United States |
| Your comment or story: | I went to my ER last April, (2006) where it was determined that I had suffered from Salmonella poisoning. The ER doctor removed about 8" from my colon, then installed a colostomy bag. He then assured me that it would be reversed in 3 months.
He knew I did not have insurance, and that it was a self-pay situation, and since I couldn't pay him as fast as he wanted, He told me that I would have to come up with thousands of dollars before he would do the reversal. well, I don't think I want someone like that operating on me after all, so I need to find an organization who will help me. I am on welfare now, with a medicaid card, but the reversal surgery is not considered to be necessary, so it will be difficult to find a Dr. who will do this for me, since it is considered elective surgery. I am a 45 yr. old mother of 3, who had Viral Encephalitis 15 yrs. ago, and it is very hard to remember. would someone please write back who has had a similar experience, or who could offer a little support? I am grateful to God for my life, and I deeply appreciate any prayers. Thank you, Tammy Jo (osamiface38@yahoo.com) |
| Your name: | manuel s. hernandez |
| E-mail address - Optional: | aitdelnorte@yahoo.com |
| City, State or Province: | huntington beach, ca |
| Country: | US |
| Your comment or story: | None as of yet |
| Your name: | Ed Petro |
| E-mail address - Optional: | ortep1936@yahoo.com |
| City, State or Province: | Abiliene,Texas |
| Country: | USA |
| Your comment or story: | I had a Ileostomy on Feb.14th 2007. I thought that was the end for me,but thanks to a great daugthers & a son-in law and a great nurse I found out it was not the end. I am doing well and feeling great. I didn't know what was happening when I had this feeling that led me into the Er and surgery. Thanks for letting me talk, Ed |
| Your name: | Norma DiBlasio |
| E-mail address - Optional: | aerobicnut@aol.com |
| City, State or Province: | MD |
| Country: | USA |
| Your comment or story: | I am 83 years old and have had my illiostomy for a year.I am having problems with stool gathering around my stoma and irritating it. The skin around it is fine it's just the stoma that gets irritated. Any suggestions? |
| Your name: | Cindy Johnson |
| E-mail address - Optional: | wezie46@insightbb.com |
| City, State or Province: | Bloomington,IN |
| Country: | USA |
| Your comment or story: | Hi,I have had a urostomy for 32 years.I had bladder cancer and they had to romove my bladder at the age of 19.Since I have had two hernias in 26 years the doctor decided to put in an Indiana Pouch since they had to change my urostomy sight.
I was thankful for the surgury to save my life.Now I am thankful for life. If I can help anyone just e-mail. Cindy |
| Your name: | Wendy |
| E-mail address - Optional: | kcl454@aol.com |
| City, State or Province: | California |
| Country: | USA |
| Your comment or story: | I have had an ileostomy for almost 30 years. |
| Your name: | adam aucoin |
| E-mail address - Optional: | aaucoin@astound.net |
| City, State or Province: | concord, ca |
| Country: | usa |
| Your comment or story: | I am a recent ostomy patient and want as much information as I can possibly get. I had rectal cancer and the surgeons couldn't save my rectun, sphincter or anus. I have a permanent colostomy. |
| Your name: | Ed Arnold |
| E-mail address - Optional: | redeye611@yahoo.com |
| City, State or Province: | New Haven, CT. |
| Country: | USA |
| Your name: | glenda bailey |
| E-mail address - Optional: | glendarabbit10@yahoo.com |
| City, State or Province: | Iowa Falls Iowa 50126 |
| Country: | U.S.A |
| Your comment or story: | I am a 53 year old female. I had to have a ileostomie 4 years ago. I had to have one because my colon and bowel were all knoted together. I will have to have it the rest of my life. I had a lot of trouble with it because they did not do the surgery right the first time. When they did it the first time the had it to close to my belly button.
My bags were always leaking because they would not seal. In Feb 2007 the doctor did surgery to move the ileostomie over to a different site and I have not have any problems with it since. Glenda R Bailey |
| Your name: | Donald Carethers |
| E-mail address - Optional: | d.carethers@yahoo.com |
| City, State or Province: | Hou.Tex 77091 |
| Country: | USA |
| Your comment or story: | I found out in 4-99,i had colon cancer and did not know what to think or do.I had good Doctors that help me thourgh my treatment but learning how to live with a permented colostomy,i learn by trying and reading.I did not know about web sites like this.It has been 8yrs now and i have been blised.I use to think i was the only one who had this,i am glad to find sites like this.I will pass it on |
| Your name: | barbara dodson |
| E-mail address - Optional: | bdodson102@aol.com |
| City, State or Province: | california |
| Country: | usa |
| Your name: | Sandra Stevens |
| E-mail address - Optional: | woolley1898@verizon.net |
| City, State or Province: | Martinsburg,W.V. |
| Country: | U.S.A. |
| Your comment or story: | Hi Everyone,
This is my second time reading this site.I have seen a few names that I have been in contact with.Some of you I have lost touch with.I wish every one the best.I will of had my Colostomy a year next month.I have finally gotten things straightened out with my Colostomy.It has taken me a while but now no complaints off hand. How ever there is a different problem that I have been having.I have been having a lot of pain in my abdomen.My stoma nurse has no idea what could be causing it.Is there any one else out there,that may have the same problem.I am wondering if it may be from my Colostomy,or if I have developed an infection of some kind.I would love to hear from anyone that may have the same problem,or may know what is causing it. This is really a great site to go to for help and answers.I appreciate everyones help. Thank You Sandra Stevens |
| Your name: | Margaret |
| E-mail address - Optional: | clancymcg@sympatico.ca |
| City, State or Province: | Ontario |
| Country: | Canada |
| Your comment or story: | I love to read all the comments people share with each other and now I have a prorblem which I hope someone else has had and can share advice about. I had to have emergency surgery in Panama City in March after suffering severe adhesions on board a cruise ship. Since this surgery my colostomy is causing me a lot of pain when feces is expelling. I take stool softeners every night and a laxative once or twice a week but still I suffer, sometimes to the point of almost screaming with the pain of it coming through. Even as I type this I an having a problem - the opening is extremely smalla but was working just fine prior to this last surgery. Has anyone had a similar problem? I would appreciate hearing from you. |
| Your name: | sharon jones |
| E-mail address - Optional: | sharon_btsn@yahoo.com |
| City, State or Province: | north carolins |
| Country: | usa |
| Your comment or story: | i am looking for friends to make and talk about al the ostomy things ,share our stories and figure out new things, like yhe gov. won't help with supplies talk about the newest developments. i haven't done much research since i had my ileostomy in 1997. thanks and have a blessed day. sharon |
| Your name: | DIANNA |
| E-mail address - Optional: | panddmey@sbcglobal.net |
| City, State or Province: | INDIANA |
| Country: | USA |
| Your comment or story: | Hi Everyone, I have colorectal cancer. I had my surgery July 7th, 2006 last summer. I had a rectal tumor removed and got a temporary loop ileostomy (which leaked stool constantly). I had months of chemotherapy and 6 weeks of radiation. I also had several intestinal blockages while I was getting chemo treatments. My small intestines colasped a week after each chemotherapy treatment. I am now in remission. Just two weeks ago I had ileostomy reversal surgery. I am still recovering, NOT FUN. Doc says if the cancer comes back I may have to get a permanant colostomy. I am so grateful for this site. At fist I didn't know there was help and support out there. I found this site about 5 weeks after my first surgery. I also found another site which was extremely helpful www.Ostomyland.com. I hope no one minds me posting it. I want to thank everyone who helped me and if I can be of help to someone else just email me. When I feel a little better I will post day by day what it is like to get this ileostomy reversal surgery for the first 14 days. Better days are ahead, DIANNA |
| Your name: | JULIE |
| E-mail address - Optional: | QUEENFLOWER73237@WMCONNECT.COM |
| City, State or Province: | ST. PETERSBURG,FL. |
| Country: | USA |
| Your comment or story: | IN 2006 I HAD TO HAVE AN ILESTOMY INSTALLED AND I AM HAVING SO MUCH DIFFICULTY IN KEEPING THE POUCH ON. I HAVE PSORIASIS UNDER THE POUCH WITH STAYS RAW ALL THE TIME. CAN YOU GIVE ME ANY HELP OR HINTS ON HOW TO KEEP THE POUCH ON MORE THAN A DAY. YESTERDAY I HAD TO INSTALL A NEW ONE 6 TIMES, WHICH GETS REAL EXPENSIVE. THANKS FOR YOUR HELP. |
| Your name: | paul |
| E-mail address - Optional: | pbennettpaulb@yahoo.com |
| City, State or Province: | ca |
| Country: | USA |
| Your comment or story: | I am a 37 year old male still coming to terms with my colostomy. I have had my colostomy for almost six mmonths due to colorectal cancer. I would apperciate any advice from any one with experiance with my condition, |
| Your name: | Margaret |
| E-mail address - Optional: | clancymcg@sympatico.ca |
| City, State or Province: | St.Catharines Ont. |
| Country: | Canada |
| Your comment or story: | Hello: I always read with interest what is written by most of you and to those who are frustrated with having to become acquainted with bags, pastes, etc. time will teach you how to cope and to begin to appreciate the difference a colostmy or ileostomy makes to your life.
There are so many excellent tips in this newsletter - most of them so very helpful. When I read what some of you have to put up with, I thank God I have been given wonderful nursing care etc. My husband and I just came through a minor nightmare in that we were put ashore from a cruise ship at Colon and taken by ambulance to Panama City where I had major surgery for adhesions and obstructions. It was hard to cope for as well as very little English being spoken, my husband is completely blind. Again we have to be thankful, as both our son and his wife were at the hospital waiting for us to arrive. I would not wish this on anyone - i.e. to be transferred to a foreign port. I have to say the doctors were supberb as were the nurses. Be gratefull for all the good things that can come out of something bad. Thank you again for all the news and insights into the lives of others. M.R..M. |
| Your name: | denise in texas |
| E-mail address - Optional: | denise-tx@houston.rr.com |
| City, State or Province: | Houston, Texas near NASA |
| Country: | USA |
| Your comment or story: | Hi,
My Ostomy is the result of Anal Cancer (2 yrs ago) followed by the inability to really control my BM, living in adult diapers and making life pretty miserable. Well, even before the diagnosis I had IBS so it really has been years since I've had good control. A couple of months ago my doctor sent me an ostomy nurse to teach me how to irrigate. She was a wonderful girl and had a great sense of humor. WOW -- even with the ostomy I was spending most of my time in the bathroom and now... I can pretty much count on needing to go about 2 times a day. My bags stay clean and dry (well, as dry as a humid area like TX allows anything to stay ~smile~) I hate cancer. I hate the change in my life now but I don't hate my ostomy. Now that I irrigate I do have to say it is the one thing I actually have that has improved! Oh, and the cancer is gone for now. I'm sad today. Another dear friend passed away last night and I'm sad. Last October my uncle passed away after only being diagnosed 4 months before that and he wasn't as advanced as most of us by the time we are diagnosed. I think he didn't have 1.) the medical most of us get and 2.) the will to fight it. Is it awful to say on many days I don't have the will to fight it either. But, I have a 10 yr old so I'll have to stick it out a while longer. I am really happy to find you all. I don't remember signing up here but I must have or someone who loves me did it for me. The chemo they say has left me with a bit of "chemo brain" (meaning my memory is yuck - the short term kind anyway) It is good to be here and it is good to be among others who have questions and answers. I wish their was a group place we could talk to each other faster but when I click on those links they don't seem to work which is sad. I'm sorry :-( Today is just a sad day. I'll write again though. Much care from Texas |
| Your name: | John |
| E-mail address - Optional: | jfmitchell38@tx.rr.com |
| City, State or Province: | Plano TX |
| Country: | USA |
| Your comment or story: | I had a Illeal Loop August 2003 and now have a large parastomal hernia. Very nervous about the repair, and getting close to having to make a decision. Any input from those who have experienced this?
Need to hear words from the experts who have done it and lived to answer this email. |
| Your name: | Pat Ledger |
| E-mail address - Optional: | tatupat@aol.com |
| City, State or Province: | Wisconsin |
| Country: | USA |
| Your comment or story: | I have been blessed with the Friendship of Elizabeth Lynn after becoming her Penpal through this Ostomy Site 1 year ago. Liz planned to visit me in Wisconsin in June. So sad....I received a call Saturday that Liz passed away from Cancer. This leaves a very large void in my life since Liz and Me shared everything possible this past year through email excitedly awaiting her visit to Me in Wisconsin in June. God must have needed a very special Angel when he called for Liz. HE has Liz now in HIS safekeeping. No more Urostomy adventures for Liz. Just wanted to make sure I covered all the Ostomy sites since Liz' Family asked me to post her passing.
I received a Urostomy 3/21/06....Liz was there for me this past year on my Urostomy adventures. Sincerely, Pat Ledger |
| Your name: | Karen Proffitt |
| E-mail address - Optional: | makemelaaf@aol.com |
| City, State or Province: | Athens, AL |
| Country: | USA |
| Your comment or story: | I am scheduled to have a colostomy on April 18th and am terrified! I am a nurse of 22 years and have taken care of hundreds of people with ostomys but this is different. I am so scared and afraid I and the people around me will not be able to cope with the osomy. I know I sound crazy, but I feel these are legitimate fears. I have chronic diarrhea right now and have felt that I can not cope with this problem either. To save my life because of the excessive weight loss the doctor reccommended this surgery. I am afraid of potential skin problems, the accidents with leakage and the smell. Of course I am having these problems now with the diarrhea, but I feel having it in front of me will be a bigger challenge.
Thanks for letting me vent!! Write me for any suggestions or advise. |
| Your name: | Janna Eidson |
| E-mail address - Optional: | eidson5@alltel.net |
| City, State or Province: | Doerun, GA |
| Country: | USA |
| Your comment or story: | I am a 46 year old women . My ileostomy has been a part of my life for 21 years. I have a wonderful husband and we have been married for 26 years. I have 2 children and 1 grandchild that we love dearly. If anyone needs to talk about their ostomy e-mail me. I know all the tricks about the ostomy. What to do and what not to do. From sex to what to eat and what not to eat. All I can say to everyone with a ostomy is don't sit around and fill sorry for yourself. Get out and help others and be thankful for your life. Because I am very thankful for mine . God Bless You!! Janna
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| Your name: | Marisela Pacheco |
| E-mail address - Optional: | lisa1ryan2@aol.com |
| City, State or Province: | New york |
| Country: | USA |
| Your comment or story: | My son Ryan is five years old. Ryan was was born with a birth defect causing Ryan to have to use a colostomy bag for the rest of his life. My prescription plan (Express Scripts) does not cover ostomy supplies. I have medical insurance but ostomy supplies are just not covered and I do not understand why when this is a condition that my son will have to live for the rest of his life. If anyone knows of an organization that donates ostomy supplies please contact me at lisa1ryan2@aol.com. Thank you. |
| Your name: | Mae |
| E-mail address - Optional: | rafiki_n_me@yahoo.com |
| City, State or Province: | Louisville KY |
| Country: | USA |
| Your comment or story: | I'm an RN here in Louisville KY. And last night I found out that one of my friends whom I work with has an ileostomy. Randy is the coolest nurse I have worked with on night shift. He said he had it for 7 years after suffering from UC. As he tells me his story, he cracks jokes about it...we laughed...and he said it was one of the reasons why he wanted to be a nurse. He probably told the same story to his other friends but it has a different impact on me. I was really touched (but I was trying to hold back the tears) His positive outlook and perspective in life makes him a wonderful person. I love working with him...but now I love him more because of his ileostomy. I think it's sexy :) I just wonder if he has a name for his stoma...
The articles & stories I read here are inspirational. Thanks for sharing them. |
| Your name: | Rae Ann Guzzo |
| E-mail address - Optional: | rguzzo@csd99.org |
| City, State or Province: | Glen Ellyn, Illinois |
| Country: | USA |
| Your comment or story: | I had a hernina repair and tummy tuck in June, 2006, I also had to have 2 more surgeries in the same area because I couldn't heal. In the interim Intervention radiology placed 4 separate drains. The last attempt to drain the wound a wound vac was used. I am now on wet to dry banadages. Much more has happened in the interim, however, I am interested in the effects of the alloderm. |
| Your name: | Angela Cortez |
| E-mail address - Optional: | kcac27@charter.net |
| City, State or Province: | Louisiana |
| Country: | USA |
| Your comment or story: | Facing surgery to remove sigmoid colon due to battle with diverticulitis and perforated colon. Doctor will resection colon and I will have temporary ileostomy. After 6-8 weeks of healing, will reverse the ileosomomy. Anyone faced similar situation. Would love to hear from you. The fear is overwhelming and affecting my mental state greatly. |
| Your name: | William R Hummel |
| E-mail address - Optional: | hummelbill@att.net |
| City, State or Province: | Las Vegas, NV |
| Country: | USA |
| Your comment or story: | I was diagnosed with Crohn's Colitis 30 years ago, and had an ilestomy someone 11 years ago.
Life has been challenging, but having the ostomy was unquestionably the right decision, particularly in the quality of life that I've not had previous 20 years. Now I am experiencing some of the side effects of Crohn's, I believe. Last January and May, I had two attacks of cellulitis in the groin area that was resolved with very heavy antibiotics. Twelve days ago I was hospitalized and diagnosed with Pyroderma Gangrenosum. The name sounds pretty scary in the open sores and ulcers on my right leg below the knee and above the ankle which have responded relatively well to prednisone. There is no doubt that being immunosuppressed makes my life or challenging, and maybe I need to return to 6-MP or some stronger form of medication. Best to all, make every effort to enjoy life. You only get one chance. Bill H. |
| Your name: | Debb Leyland |
| E-mail address - Optional: | jrussell23@cogeco.ca |
| City, State or Province: | Ontario,Canada |
| Country: | Canada |
| Your name: | Darolyn Barnett |
| E-mail address - Optional: | cancerpouch@yahoo.com |
| City, State or Province: | Eden Prairie, Mn. |
| Country: | USA |
| Your comment or story: | I've had an "Indiana Pouch" for almost five months now and sometimes i wake up in the morning, sit down, wait,and then "damn!" I have to stand up and go through that routine I've come to know so well. I'm a 45 y/o woman diagnosed with a rare form of urethral cancer. According to the MAYO CLINIC, I'm the 51st person to have this type. Lucky me. I'm trying to start a support group for people with an Indiana Pouch, if you are interested E-mail me at cancerpouch@yahoo.com To everyone out there dealing with cancer; Keep your head up, you're above ground |
| Your name: | Joanne Williams |
| E-mail address - Optional: | cyberblossom56@yahoo.com |
| City, State or Province: | wy |
| Country: | United States |
| Your comment or story: | hello everyone! what a wonderful site. the stories are all amazing.just looking to make some friends to chat and to share tips on our buddies (our ostomies ). i've had my baby since march 1999 due to cancer. the only problem i have with my ostomy is that it is so active and i'm always in the bathroom, are there any good products that work well? also what foods are good to slow things down? thank you all for listening. take care and god bless. |
| Your name: | Elizabeth Lynn |
| E-mail address - Optional: | elizabethlynn11253@btinternet.com |
| City, State or Province: | Perth |
| Country: | Scotland |
| Your comment or story: | Hi,
I have a urostomy due to bladder cancer, my op was April 2005, I have got used to my bag now & sometimes even forget that I have it.I now have liver & bone cancer just tried to go through another bout of chemo but they stopped it after 3 months as it was doing me no good, my tumors were still growing .I know I dont haver much time left but I am a very strong person & intend to enjoy every bit of time I have left,if I am spared I am off to Wisconsin in June to meet up with my lovely pen pal I met on this site. Take care & thank you for taking time to read this Elizabeth x |
| Your name: | Mike Freedman |
| E-mail address - Optional: | mbfree1@bigpond.com |
| City, State or Province: | SYDNEY |
| Country: | AUSTRALIA |
| Your comment or story: | Congratulations on your informative Site
Sincerely Mike in Manly |
| Your name: | Kathryn Blum |
| E-mail address - Optional: | katenkaboodle@verizon.net |
| City, State or Province: | Follansbee WV |
| Country: | USA |
| Your comment or story: | I have enjoyed receiving the newsletter and have found many hints that have helped me with my ostomy. However, I stopped getting them. I hope registering again means that I will get them again. Thank you so much for the info. My Crohns and ostomy have had to take a backseat recently, as I have been battling breast cancer. Does anyone know of any changes in ostomy care that is effected by chemo and radiation. I am having a difficult time keeping a seal now. |
| Your name: | Michele |
| E-mail address - Optional: | rathbun5629@earthlink.net |
| City, State or Province: | Ohio |
| Country: | U.S.A |
| Your comment or story: | Someone PLEASE talk openly about sex after an ileostomy!! I am 37, obviously married to a one of a kind man, he has stayed with me through dozens of surgeries, and even more hospitalizations. I had my ileostomy done only several months after marriage. We went from sex daily, sometimes several times a day to now......maybe a dozen times a year. (THAT is a total lie.....6 times a year!) I used to be confident with myself. I cringe when he touches me. I WANT to have sex, I want him to know how much I love him. I want to be a normal woman again! They have attempted a reversal; however after 8 hours they could not even reach the ileostomy through scar tissue and adhesion's; blood loss was great and they had to abort the rest of the surgery. They will try one more time. After all of the surgeries; hospitalizations, (all due to a drunk doctor who had no idea he even hit someone when he got out of his car) and no, we are not rich! Only millions in medical debt due to insurance companies refusing to take me or keep me, luckily I have good insurance and am on disability, I cannot get past this intrusion in my life. My stoma is small enough that I wear the smallest pouch, but sometimes I feel like I cannot go on. Anyone with any help would be so appreciated! And I am ashamed as I look back and see what I just wrote.....I know I should be thankful for my life; I do not have a terminal illness, etc. I just have no idea how to get back something WE lost! I wish the best for all of you! Sincerely, Michele |
| Your name: | Emma Jenny Taylor |
| E-mail address - Optional: | PopIdol649@yahoo.co.uk |
| City, State or Province: | Milton Keynes |
| Country: | England |
| Your comment or story: | This site is great |
| Your name: | Owen M. |
| E-mail address - Optional: | osm1971@hotmail.com |
| City, State or Province: | Belgrade, ME |
| Country: | USA |
| Your comment or story: | I have had an ostomy since 2001. I could go on for days with stories about the challenges I have had with the ostomy. I never joined any support groups and the advice from the ostomy nurse at the hospital who did the surgery was minimal. I should have joined a group, it would have helped me so much as far as knowing what to be prepared for. At this point though I have had everything go wrong that could with an ostomy. I consider myself an expert on the subject.
What I am really looking for now though is a woman who also has an ostomy in my area who would like to get to know me. Dating is pretty challenging when you have an ostomy. I have a 7 year old son and am divorced. Feel free to email me if you are interested or know someone who might be. |
| Your name: | Phyllis Martin |
| E-mail address - Optional: | phyllisjmartin@AOL.Com |
| City, State or Province: | FL |
| Country: | USA |
| Your comment or story: | I enjoy all the useful information from your News Letter.
I have an ilestomy and have learned more useful information in this letter than from the Doctors or Reading many Books. Thank You. |
| Your name: | Patti Suler |
| E-mail address - Optional: | pattiksuler@aol.com |
| City, State or Province: | Houston, Texas |
| Country: | USA |
| Your comment or story: | I didn't have to struggle with the decision of bowel diversion, I perforated during my fourth colonoscopy in 14th months following what I believed to be the longest, never ending, personal relationship between my butt and my bathroom [ulcerative colitis and/or Crohns]. I woke up five +/- feet of colon less and felt a whole lot better. New addition to my life "JR", ileostomy, we have just finished our first year together. I spent five days in that hospital and took my lobster tail stapled belly home and haven't looked back since. I returned to work three months after surgery. I love my ostomy support group and attend faithfully. The monthly newsletter from this group has been part of my staple. I have offended some and touched others with my new life style. Regardless of how hard this new struggle can be at times, I know it is a blessing that I blew in a medical environment, .02 miles from the Medical Center, in the hands of Doctors and not in the middle of the night, on the road, in a meeting, at the grocery store or any other place. Expect a miracle.
If sending email response to this notation, note ostomy in the subject line to bypass spam filter. |
| Your name: | Rick |
| E-mail address - Optional: | probefix@aim.com |
| City, State or Province: | Burlington,Vt |
| Country: | U.S.A |
| Your comment or story: | I hope to hear from those of you who have had success in finding someone to share your lives with who are willing to accept the fact that you have an ostomy. Feel free to e-mail me with any advice you can come up with. Thank you all. I have had an iliostomy for over 2 years now. |
| Your name: | Patricia D Ledger (Pat) |
| E-mail address - Optional: | tatupat@aol.com |
| City, State or Province: | Kewaskum, WI |
| Country: | USA |
| Your comment or story: | I received my Ileal Conduit/Urostomy due to Neurogenic Bladder-MS in March 2006. At first I was so relieved....the pain caused by the MS-Spasticity was all that was on my mind 24/7 and now is was gone and I had a Urostomy. During the Ileal Conduit/Urostomy surgical healing period I developed a large Parastomal Hernia plus another hernia lower on the midline..this was revealed during a CT & CT-Loopogram....during the repair it was discovered that the larger Parastomal Hernia contained my bowel. Although it was very painful I hesitated getting the repair done because I was very weak, anemic, and afraid as the repair would be my 3rd surgery in 2006....my 5th abdominal surgery in my life...I am 57. September 2006 I had the Parastomal Hernia repair surgery and a 12x12 Alloderm Mesh reinforcement placed in the Stomach and around the Stoma to prevent further hernias. I continued to have the pain thinking it was again post-surgical healing...it did feel much like the pre-repair pain though. In November I returned to my Urologist...a top Urogynecologist... at a Major Medical Teaching Hospital. I begged to put off another repair surgery until after the Holidays. My Doctor decided to Scope my Stoma January 2007. Just to get into the Stoma my Doctor had to dilate the Stoma and then moving forward with the Scope found it to have many curves and had difficulty Scoping and pulled out saying I could decide when to be repaired for the PROLAPSED STOMA. I chose to wait awhile since my Stoma is still producing Urine....must be my Angels watching over me AGAIN. My Doctor said if urine stops flowing, bleeding, pain gets intolerable go to the ER...I will have Kidney Ultrasounds regularly until I make up my mind..can't tolerate the pain etc. If anything worsens he has told me he will intervene. I will be calling him because I must lay down to prevent the pain from getting out of control. I know that this is no way to live. I truly believe that my Ileal Conduit/Urostomy has enormously improved my life but I have to get through the complications and hopefully get on with just me and my Stoma. I highly recommend that people with known hernias make sure to check with their Doctor to find out what is in their hernia. Bowel can get strangulated...I have no medical training but I was told this. When we found out my hernia contained my bowel and the Parastomal Hernia was larger than my Doctor's fist..ME AND MY HUSBAND WERE SHOCKED...whoa!!!! I am not that big of a person but the hernia originally looked like I had a cantaloupe protruding from my Stomach to the right of my Stoma. I have been told that the surgery to repair the current Prolapsed Stoma will involve a midline incision again, pulling the Stoma straight and excising the excess.....I have wondered if the excess being pulled through will tug on my Ureters/Kidneys...I must have needed the length that was originally allowed....My Doctor said there is a "s curve" and crimps that can cause infection to breed plus the Stoma has become pushed up subcutaneously ....maybe I will come out of surgery with the Stoma relocated....maybe that will be my Angels watching over me AGAIN. Only time will tell if I get brave enough to get this needed repair.....I will be calling for the "discuss the intolerable pain" appointment today. I do have Kidney Cysts and a small Kidney Tumor-Angiomyolimpoma and don't want to place more strain on my Kidneys so may just have to do the repair. Wish me strength to make the necessary decision.
I appreciate reading the Newsletter..tips..stories and have made a terrific Penpal through your Penpal Ostomysite. Thankyou so much for all you do to get the info out to us. Sincerely, Pat Ledger |
| Your name: | Richard Eckstein |
| E-mail address - Optional: | richardlakemary@aol.com |
| City, State or Province: | Orlando area, Florida |
| Country: | USA |
| Your comment or story: | I have both a Colostomy and Urostomy since Jan. 2006. Most all problems have been faced and solved to great satisfaction. For those who have questions or problems? It is hard tohelp if you do not put in your e-mail address???
Every path has a few "puddles"! |
| Your name: | jamie zimmerly |
| City, State or Province: | north freedom |
| Country: | united states |
| Your comment or story: | i had cervical cancer 4 years ago, due to radiation damage i have had a colostomy for 3 years. now, i fear i am in need of a urostomy as i have a fistula in my bladder also due to radiation. |
| Your name: | Ed Krueger |
| E-mail address - Optional: | kruegered@hotmail.com |
| City, State or Province: | hugo mn |
| Country: | USA |
| Your comment or story: | like your site good tips. I have had an Illeostomy (29 years) |