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| Name: | Pauline Akpalialuk |
| E-mail address: | paulineakpalialuk@hotmail.com |
| Comments: | Hi, my name is Pauline and i have a ostomy almost a year now and still trying to get use to it and just want to meet new people with the same situation and this is a very helpful site. |
| Name: | Dale Amato |
| E-mail address: | philamato62@comcast.net |
| Comments: | Hi,I have had a colostomy since May. I'm getting use to my stoma and this last month have been trying to eat fruit and other foods with success. I'm a little nervous about going to a ostomy support group next week, but I think it will do me good to meet other ostomies. |
| Name: | paul |
| E-mail address: | pauljl64@yahoo.com |
| Comments: | im looking to meet some single females in the same situation ive had a colostomy for 4 years now and would be nice to chat with someone ok if interested write back thanks paul |
| Name: | paul |
| E-mail address: | pauljl64@yahoo.com |
| Comments: | nice site ive hade a colostomy for 4 years now and would realy like to meet some single women who would like to chat just makes things alot esier when you both have the same thig in common ok well if your interested write back thanks paul |
| Name: | Val |
| E-mail address: | vsoftspungold@hotmail.com |
| Comments: | Hi there....I am in my 50's and have had ten ops.
My Ileostomy didn't work right so it's been re-shaped, then stapled then moved...still not right and I have a lot of other medical peoblems. Sometimes it's hard to keep perspective on our lives. I think a lot of us will have 'down ' days. then we pick ourselves up and start smiling again. I'm glad this web page is here for people with the same problems to contact each other...it must help. Wishing you all a good day....Val. |
| Name: | Kim |
| E-mail address: | kkforrest@hotmail.com |
| Comments: | My son has found out he has u/c he is 11 years old! His case is severe and he's only 63 pounds soaking wet. His iron level was low and he is always so tired. If anyone has had this at this young of an age and could give me some pointers that would be great. |
| Name: | Sunshine |
| E-mail address: | sunshine_townsend@hotmail.com |
| Comments: | I had to have a colostomy and a ileoconduit in /67 due to cancer of the uterus that spread to my colon and rectum. At that time they knew very little about that type of surgery.To say the least there was very little infoto help and the pouches were very "primitive"..Finding suitable clorhing has been very difficult and at first I sewed alot of my own..It has been a long road basically on my own..I found the Drs can do the surgery but know very little about the problems that arise when trying to cope with the problems of wearing 2 bags..(I call them the "Twins")BUT it awesome to be alive and I thank God every day for letting me live--bag or no bag...I mind the hot weather very much but all in all its a great journey..
I am a 74 yr old female |
| Name: | Zada |
| E-mail address: | zadahaws@comcast.net |
| Comments: | I am new at the "Bag" but otherwise old, 85. I have severe arthritis in my hands. This makes the bag difficult to manage. Any suggestions on a bag that is easier or put on and one that has a closure that is easier. Any suggestions would be helpful.
Thank you, Zada |
| Name: | Ken |
| E-mail address: | kenmyersmusic@yahoo.com |
| Homepage URL: | http://www.myspace.com/thekenmyersproject |
| Comments: | I've had a stoma now for over a year. I am still trying to adapt slowly but surely. I am very happy to be alive and I am going to get involved with my local ostomy support group in order to help others.
Peace and best wishes, Ken |
| Name: | AHEMD |
| E-mail address: | AHEMD@YAHOO.COM |
| Comments: | AHEMD MUGU GOOD WORLFD MAGA |
| Name: | Kevin Lawton |
| E-mail address: | lawtonkp@yahoo.co.uk |
| Homepage URL: | http://www.lawtonkp.co.uk |
| Comments: | I had an ileostomy for a year before having j-pouch surgery. I had problems with my ileostomy from day-one but have a new lease of life since having my j-pouch surgery. If anyone else has an ileostomy and is considering j-pouch surgery, you may find my website informative. |
| Name: | Sonja |
| E-mail address: | sweetwheels50@yahoo.com |
| Comments: | im a 52yr young lady with a colostomy and a urostomy. id love to hear from other ostomates. |
| Name: | Michael |
| E-mail address: | mikeyarmo@hotmail.com |
| Homepage URL: | http://www.crohnsforum.com |
| Comments: | Hi there Gizmo,
While I do not have an ostomy, I do have CD. I like your site and I think a lot of the members of my forum would like it also. www.crohnsforum.com is a forum for anyone affected by any form of IBD. We would love it if you joined us to share in the information, support and laughs we all have together. Currently each new member triggers a $0.10 donation to the CCFC (Canadian foundation for Crohn's) which should give you an even greater reason to come to the forum. I know everyone would love to hear more about you and know about your site. Hope to see you there soon and feel free to let anyone else you know affected by IBD know about the site and promotion. Take care, Michael |
| Name: | john |
| E-mail address: | jjnicholls@hotmail.co.uk |
| Comments: | the good thing that has come out of people like ourselfs,is that we can talk about it,it does help when you your not on your own.ive started with ulcerated colitis in 1993 it got worst,in 1999 i was taken into hospital only to find out i had crohns, ive had two ops im left with illostomy for life,it was the best thing for me,now i lead a normal life no pain just scars but everbody is scared in one way or another.lifes to short make the most of wot you ve got.laugh every day you ll feel good about yourself,rember a problem shared is a problem halfed.goodlook |
| Name: | Ray yarn |
| E-mail address: | rtoyon@aol.com |
| Comments: | Hay there. I read a few of the comments from people. I cannot believe there are people in the world that went through all the things I went through when I first got my illiostomy. I am trying to get a revision for a koch pouch > Has anyone ever heard of it. are there complications with it. I just saw a specialist at walnut creek kaiser and he told me all about it I am a little scared becauser I am not having any problems with my illiostomy but am just tire of looking at it and dealing with all the supplys and noises that it makes. Some one out there do you know any thing about a koch pouch. It is similar to illiostomy but it is inside you stomach and you use a tube to empty it. Just a little hesitant to trade my illios for a koch that might have problems. |
| Name: | den |
| E-mail address: | denaced@yahoo.com |
| Homepage URL: | http://denace.bravehost.com |
| Comments: | i've had my "bag" almost two years now and just about getting used to it. was caused by a strangulated hernia. hospital told me to go home and take an aspirin two days later i had emergancy surgery and lost three inches of colon. bag was "tempory until they tried to reverse it and found i was to badly damaged to repair. there is a medical negligence case going through right now. anyway just saying hi and well done |
| Name: | anthony m. sciotti |
| E-mail address: | tsciotti@csloxinfo.com |
| Homepage URL: | http://csloxinfo.com |
| Comments: | I had my illeostomy surgery since 1995 and was glad to have it. The one thing I want to say that change your bad every two days this avoids having infections and aviods becoming itchy.
The one question i want to ask is how long can a person live with an illeostomy because i heard that as time goes by some other thing pop up like arthritis, enemia, etc. Is this true. |
| Name: | kylie |
| E-mail address: | gangstaa_tears@hotmail.com |
| Homepage URL: | http://nexopia.com [ username kylee07 ] |
| Comments: | Hi, my boyfriend has had crohns for 7 years now, and he was recently admitted into the hospital again, he had a flare up, and they gave him a CT scan the other day, they said the scan was clear and that he is doing better, im just trying to find someone to help me understand exactly what crohns is, another answer im looking for is what the odds are that our daughter has it as well and what signs i should watch for incase she does... so yeah anyone who thinks they could help me understand better, plz email me and put importent or crohns in the subject box so i dont think its junk mail... thank you... all of this has been really hard, but i think that finding out more will help me understand |
| Name: | Penn State Pal |
| E-mail address: | lkeefe@cfl.rr.com |
| Comments: | Have UC for forty five years. Steroid dependent for about two years and now my Dr is recommending surgery. Terrifies me. Amyone out there who got off of steroids after two years? GI dr tried mercaptor.Nearly died from hepatitis and bone marrow depression. Trying probiotic diet now which does not seem to make a difference. |
| Name: | yolande |
| E-mail address: | yolandew@hfr.co.za |
| Name: | Bill P |
| E-mail address: | akmidsun@hotmail.com |
| Comments: | I suffer froma form of MS which causes all kinds of nerve problems.....
To include BOWEL and Bladder. The Bladder I have a handle on but the bowel is a different story. I have a relaxed sphincter problem and have enema to in sure that theres no accidents. I DON'T WANT A ILLEOSTOMY Coloplast makes an expanding rectal plug only avaiable to the UK market. Anyone know of how I'd be able to obtain some of these? Sure would be helpful to give it a try? thanks for taking time to answer? Bill ΤΏΤ |
| Name: | LESLIE PATTERSON |
| E-mail address: | N/A |
| Comments: | PLEASE CALL ME AT 719 369-7673
I HAVE SAME DIEASE AND HAVE AN ILIOSTOMY AND 15 SURGERIES IN LAST 18 MONTHS AM 41 FEAMALE NEED SOMEONE TO TALK TO |
| Name: | Judy Nemeth |
| E-mail address: | jnjnemeth |
| Comments: | My husband is suffering from a radatation burn from bead inplants he had put in last year for prostrate cancer, he was scheduel for temp colonosphy the 29th but put it off, thinks he is going to have to have it done so burn will heal. He is taking hyperoberic oxygen treatments has had 24 they say he will have to have 50 or 60. He dont want the temp colonosphy, i have been trying to incourage him. |
| Name: | Helen |
| E-mail address: | helenreason@tiscali.co.uk |
| Comments: | My Father had an ostomy 2 years ago after suffering from ulcerated colitis for around 20 years, the first 18 months after his operation he was fine, really enjoying life and looking forward to being able to go anywhere without the worry of having any 'accidents', now he is suffering again he keeps getting blockages and had surgery a couple of days ago, tanks for taking the time to read this. |
| Name: | Cathy |
| E-mail address: | freepanther36@hotmail.com |
| Comments: | I`m 40 in July and have had a colostomy for about 8 years due to Crohnns Disease. I was diagnosed with Crohns almost 18 years ago. Are there any women here with an ostomy that can share what they wear for a swim suit? I am going to spend the summer with my mother in Minnesota, and she has a pool. I only had one swimsuit I could wear and now I can`t seem to find any swimsuits that are made for us ostomates. My old suit is wore out. |
| Name: | Jerry Hames |
| E-mail address: | jerryhames@hotmail.com |
| Comments: | I am 46 and have had an ileostomy since 1989. I am having weight gain problems. I find most diets are not sympathetic to ileostomies. Raw vegetables tend to cause me problems. Any ideals will be appreicated. |
| Name: | Bruce Stromert |
| E-mail address: | poncho18@yahoo.com |
| Homepage URL: | http://bgsponcho@yahoo.com |
| Comments: | Well I realy don't know how to start so here goes. At about age 10 I was bounceing on my parents bed like I should'ent [learned the hard way]. Well I bounced so high I bounced right off the bed onto the floor and got 3 stiches for all my bounceing. Thought that was it until a year or 2 latter. Now that was 44 years ago. At first the siezures were strong [grand malls]. They got lighter and lighter through the years, The ammount of sez stayed the same. Then I think we found a combination, except it made me woozy,dizzy and a few others. About that time I entered the hospital to have a rotor rutter job done on my leg because of neurophy. Well I was laying there one day [pretty well doped up from the epilepsy meds. and my nero. stoped in to see me. Needless to say he ran and scheduled tests that resluted in cutting the amount of meds.I was taking in half. Took a couple of days but everybody seen a big differance. About half a year went by and everytime I'd go to the bathroom, uraniton would be OK, but to have a B/M that was trouble. Looked like rabit turds, I did'nt now it but my rectrum was being squeezed to death. They ran test after test to find out. Finaly they said thier going in, [never said thier was a problem or not] guess they figured if they found something they fix it. glad they had that attitude because I was gettyng sore there. They went in and my intestine had a strangelhold on my rectrum and other parts. Well they took my rectrumand whatever,sewed me up down there, gave me an ostomy on left side of body. That was July 10 2003. Funny thing about all of this is when I have auras or siezures they were camming out my rectrum. NOW WHAT? Well when I have an aura or seizure it gets to where the rectrum was,and its like thiers a roadblock. All my siezures and auras moved through the middle of my body and out my butt back when they could. But I have found that my siezures have gotten better [lighter]over the years. George my osyomy just hangs thier. He's usually good for6 7days tops. I was coloplast,convetec supplies. 1 piece bag, instead of the ekin ring, I use a strip paste where my scars are. |
| Name: | nick amos |
| E-mail address: | namos@cfl.rr.com |
| Comments: | keep up the good work. |
| Name: | lisa |
| E-mail address: | lustylisax@aol.com |
| Comments: | Hi i am a 22 years old i have had an illeostomy for nearly 3 years now, i did have it reversed but due to complications i had to have it back, the thing is i find it very diffucult to find clothes to wear and not just that i find the actual bag very unattractive and so clinical!!! I feel that if i have got to have an illeostomy i want to make it part of me for example i would like to have a cover to place over the bag maybe a lace one for bed, a coloured one for the day i just dont think because i have an illeostomy i should have to look it and feel disgust, i pick my own style, colour and make of clothes why cant i have the same choice when it comes to illeostomy pouches! i have wrote to illeostomy suppliers and they said that they dont make covers for illeostomy pouches so what do i do now! well i thought maybe if i wrote down how i felt other people might feel the same and we might be able to do something about this. well if anyone else feels the same please get in touch. |
| Name: | katrina ketch |
| E-mail address: | katrinaketch@hotmail.com |
| Comments: | hi im 34yrs old have 3 children and have just had all my large bowel removed and now have a bag. im finding it very hard to deal with this mentally aswell as scared to eat things incase i block up. has anyone got a good list of do and donts for having this.I also am considering haveing the small bowel made into a pouch later and reconnected does anyone have info for this good things and bad oints of views etc. Is there any chat rooms with people with this you can talk to.this has been the best site ive found so far thank you kat x |
| Name: | Jack |
| E-mail address: | jackith@hotmail.com |
| Comments: | hey, i stumbled on this website trying to find out about crhons...my girlfriend has it but i don't really know much about it and would like to find out as much as i can..so if anyone tell me more about it that would be awesome thanks... |
| Name: | Susanne |
| E-mail address: | shirkiessister@aol.com |
| Comments: | I had Colon Cancer in 1999, removing colon and rectum.First in my family.Last September my oldest son 26 had the same surgery, than God is doing fine.Then Feburary 30,my youngest 17 had surgery.He is going in 3 weeks to have second part done with his J-Pouch.
His doctor was the one who let me know about the Kock Pouch.He asked me if i had one.I am trying to find out all the information on both of these kinds of pouches.I haven't decided if i want to go through all that again.I've been fighting these bags for 3 years, breaking out from them. Doctors can say something is great.But they don't really know unless they live with them from day to day.God Bless Everyone. |
| Name: | Gary |
| E-mail address: | sgt203@hotmail.com |
| Homepage URL: | http://www.msn.com |
| Comments: | 37 yr old male diagnosed with crohns in 94. one year later after much pain and suffering, i had a total collectomy. yep they took it all. looking for some info on a possible reversal. can anyone help? god bless. |
| Name: | Paul "Double Barrell Colostomy King" Yerby |
| E-mail address: | BmpMem@swbell.net |
| Comments: | You're site Rocks!!!!!! Great Stuff!!!!!!!!!! My wife and I Both love it...... |
| Name: | Irene |
| E-mail address: | IrenOF@aol.com |
| Homepage URL: | http://Crohns Disease/ulser-active colitus |
| Comments: | Would like to chat with anyone about crohns disease or ulser-active colitus. Had surgery done in 1986, I started off with ulser-active colitus than was told that I have crohns. the years have be up and down. Now I am dealing with leasions on my legs. Does anyone have this problem? Thanks to Gizmo's Ostomy Page I have found people with the same problems I have |
| Name: | Jd |
| E-mail address: | natureboy2222@netzero.net |
| Comments: | Hi, great site...i was found to have a cancerous tumor on my lower colon in Jan 2002...4 cm up from my rectum...had surgery following July and had 10 inches of my colon removed...i was fitted with a loop illiostomy....over the past 14 months or so, i have learned to live with in...it really does not bother me.....i am scheduled for a reversal
next month....and i just cant wait....the doctors tell me i should not have ANY problems after the reversal, because i still have 90% of my colon. living with an ostomy is not as bad as you might think....people, you must adapt !! it could have been a lot...lot....lot worse....just sit back and tell yourself that you CAN DO THIS...its not that bad.....please feel free to email me... :0) p.s...they got all the cancer...had a P.E.T. scan 6 months ago and no cancer cell anywhere :) |
| Name: | C.C. |
| E-mail address: | ladyc2233@aol.com |
| Comments: | Please help me -I've had an epidural for a strain ,I recieved in 4/29/03.at work.Diagnosed as lower lunbar strain.Ever since they gave me an epidural I have been drawing very bad in my left hip and groin and upper stomach .It hurts very bad when I take a step and on my feet very long at a time.Of course no one wants to admit it,but I've worked all my life.I am now 57(didn't have these problems before epidural)and have been working pressing dry cleaning since 1970.In fairly good health.Has anyone else been faced w/this .please let me know A.S.A.P TY God Bless |
| Name: | GLORIA |
| E-mail address: | glrsquil@aol.com |
| Name: | drew |
| E-mail address: | driouxbie@hotmail.com |
| Comments: | hey giz.
29. crohn's for 15 years. just got rid of the colon...on with the ostomy. thanks for this page. this is definitely a needed resource. totally one of those things that i thought i would rather die first than have, but am getting used to the "no pain" thing. thanks again and best wishes to all. cheers -d. |
| Name: | RuthB |
| E-mail address: | nospam@please.com |
| Homepage URL: | http://www.angelfire.com/sk/ruthb1 |
| Comments: | Wow-you were really brave!For years I was on steriods-2 months off and I became bedridden again.Due to vanity I always said if I had to get an ostomy-I would prefer to die with dignity.After too many surgeries to fix a rectal/vaginal fistula,one was fixed-another one started in a diffrent spot.I finally had no quality of life,but by this time my daughter was only 8,I was really the only sane one to raise her.I had the temporary illeostomy-after 19 major surgeries,my surgeon refused to do anymore,except a permanent illleostomy.My daughter needed a mother,so I did it.Low and behold-eventually I was dating again-never thought that would happen.Anyway I am going on too much here,on my page,if you care to visit,for the first time this year I felt comfortable in sharing about having an illeostomy.
Thanks for sharing your story. |
| Name: | melinda gray |
| E-mail address: | saphire69039@aol.com |
| Homepage URL: | http://lifegoeson |
| Comments: | none |
| Name: | Rhonda Madison |
| Homepage URL: | http://www.4guests.com |
| Comments: | I suffered with cancer for one year. Hopefully I'll stay in remission. |
| Name: | Dawn |
| E-mail address: | Char877@aol.com |
| Comments: | I enjoyed reading some of the postings in your book, and have found that I too share many of the same problems or experiences as others. But with Faith it isn't the fight it is the Joy in knowing you were given another chance. |
| Name: | Scott |
| E-mail address: | Sunnitb@hotmail.com |
| Comments: | Hello,
I am a 36 yr old male who suffered with Crohns disease for 13 years. I had to have all my colon removed only to find I had a miracle. The surgeon and reports come back to say I have suffered from Ulcerative colotis. I have the option of reconnection in 6 months to 1 yr if I choose. I have had my new blessing on my side for about 1 month and I can't tell you how happy I am with my life. No more accidents in my pants, My skin has cleared up totally, My joints no longer swell like they use to. I am well I just have my waste exit my body at a different point. I am very athletic and run approx 3 miles a day. I have a QQuestion and a comment. My surgeon is Vendie Hooks in Augusta, Ga. I did research for 3 years before selecting him as my surgeon. He does a Brooks Illestomy. This is a special type (Please do your home work and find a expert colon rectal surgeon) it makes all the difference in your experience. Second, I am a scuba diver.........Can anyone tell me where I can find a hard cover for my ostomy so I can continue to dive? God Bless and I hope this is a becon of light to anyone who needs it. |
| Name: | Julia Haywood |
| Homepage URL: | http://www.4guests.com |
| Comments: | very informative site. thank you |
| Name: | Julia Haywood |
| Homepage URL: | http://www.4guests.com |
| Comments: | very informative site. thank you |
| Name: | Diane Mason |
| E-mail address: | dianemason1@yahoo.com |
| Comments: | Could anyone please help. My mother has had an iliostomy for 35 years. She has very sensitive skin and has developed an ulcer on her skin right by her stoma. She has tried several different bags and preps but no luck. Can anyone help? Thanks a bunch.
Diane Mason |
| Name: | davidjring |
| E-mail address: | davidjring@aol.com |
| Comments: | My son Scott has CD and has had the disease for 15yrs
just so wonderful to read these pages, your all wonderful, dave ring |
| Name: | zwrdl |
| E-mail address: | zwrdl@erols.com |
| Comments: | I(male) have recently had a colostomy. I would like to have sex sometime soon, but can find no suppliers of cummerbunds and/or opaque pouches made for sexual contact. Can anyone point me to some suppliers of same?
Thank you ever so much. Michael |
| Name: | SteveMallinson |
| E-mail address: | crsy123@aol.com |
| Comments: | i had my colon out in march 2003, it was completely riddled with uc, apart from getting an mrsa infection in my wound i am feeling great. having a bag is something you have to get used to, my wife and kids have been monumental in their support and in return i am going to get on with my life with them, bag or no bag. I hope to return to hospital for reversal surgery in time to have a pouch created and eventually to be plumbed back in, if you have had this surgery whats it like? is it worth it, i've heard some negative stuff, I can live with the bag, but rather have the surgery, any thoughts. |
| Name: | Vanna |
| E-mail address: | vanna@cuteandsingle.com |
| Homepage URL: | http://cuteandsingle.com |
| Comments: | Nice job on your web site! |
| Name: | RICH STEWART |
| E-mail address: | RSTEWART02 @AOL.COM |
| Comments: | LIFE HAS BEEN HARD FIR ME LATELY . I AM 30 YEARS OLD AND JUST DIAGNOSED WITH CROHNES IN 2002 I HAVE HAD PART OF MY SMALL INTESTINES REMOVED AND ABOUT TO UNDERGO ANOTHER OPERATION TO HAVE MORE REMOVED . WHAT DOES A SINGLE MALE DO FOR MEDICAL ASSISTANCE WHEN HE HAS BEEN TOLD HE CANT WORK.
I ALSO STRUGGLE WITH EPILEPSY. I HAVE FILED FOR DISABILITY AND TURNED DOWN ONCE. PLEASE COMMENT??? |
| Name: | Debra Ensley |
| Homepage URL: | http://www.4guests.com |
| Comments: | Fantastic site. |
| Name: | Diane |
| E-mail address: | postidi@shaw.ca |
| Comments: | Hello from Canada...
I have had this computer for a few days only.Was going to throw it out the window...Still might if I keep screwing up. I,m 45 years young, single and would love to hear from other ostomates. Have crohns, deal with it fine. Have to, if you want to move on with your life.... |
| Name: | angelbaby |
| E-mail address: | happy2bealive@earthlink,net |
| Comments: | I need to find a center were I can take my child to sit with other kid and talk about ther family devorce problem so they can understand what different kids go through with there parents.my son is so angry he is 9 and I feel he needs kids to talk to HELP ME TO FIND GROUP |
| Name: | Helen |
| E-mail address: | helenkimmerling@hotmail.com |
| Comments: | I was diagnosed with Crohnes disease 3 years ago and had to have most of the large bowel removed and I now have an illiostomy.
I am hoping if all goes to plan to have a reversal next year. I wondered if anyone could give comments on reversals .. how long does it take to re=train yourself to use the back passage again .. is it very painful. I suppose I'm concerned after being in so much pain with Crohns is better to just stick with the illiostomy!! I have found it very hard to meet anyone or sustain a realtionship since my operation and would love to hear from women or men who have tips about how to tell someone about it etc .. I'm 25 years old Thnk you |
| Name: | Bill Carlton |
| E-mail address: | WWCARLTON2000@YAHOO.COM |
| Name: | John |
| E-mail address: | goldmaja@whitman.edu |
| Comments: | My mother had an ileostomy reversal about 3 months ago. Since then she has suffered severe complications and received little advice or help from the medical profession. I was hoping that some real life experiences and treatments for complications might be found.
She has been going through a rough cycle of getting badly plugged up ever since the reversal. The cycle goes like this: 1) she eats a big meal because she is hungry or she eats a food that her bowels are intolerant to 2) then her bowels plug up and start intense cramping 3)soon she throws up everthing in her stomach and painful cramps continue, she is still unable to pass anything 4)this lasts for about 2 days during which she is unable to eat anything (only sip on water), if she eats, she throws it back up and the cramps get worse 5) finally, on the third day, she finally passes the blockage and the cramps slowly recede in intensity and then finally in frequency. As a result, she is left very weak and has lost lots of weight. So then we start her on a chicken broth diet and slowly re-introduce solid foods to her starving body until the something triggers the process to start all over again. The first couple of times she was able to bounce back from these plug-ups, however, it has gotten to the point where she is quite weak and her body cannot handle anymore of these major set-backs. I was wondering if you have had or ever heard of similar complications and had any advice for my mother. Thank you so much for taking time to respond to this e-mail. Take care. John |
| Name: | Ruth Weir |
| E-mail address: | musket35108@yahoo.com |
| Comments: | I have had a colostomy performed almost one year ago. At first I felt dirty and ugly. I did not expect it. I have ov cancer, and went in for surgery for that. Came out with colostomy also. But it saved my life. It is buying me time to continue to fight ov cancer. Does anyone know of a site where some clothes or special bathing suits are available. I now need to wear oversized shirts, and forget about a bathing suit.
Did anyone go thru a phase of feeling like a freak? Or is it just me? I am coping much better now, and will be starting on a new chemo next week. Would love to hear from anyone. Ruth |
| Name: | Alice Anne Allen |
| E-mail address: | AliceAnneAllen@dc.rr.com |
| Comments: | Hello
Have an illiostomy and love to read anything related to it.. Thanks for the great information |
| Name: | James Gile |
| E-mail address: | ggresume@aol.com |
| Comments: | Ihave had my ileostomy for 23 years - do well - work full time and realize the the bag that goes with me all the time saved my life -- I also had a Whipple procedure done six years ago - there are good days and bad days but without the ileostomy I would not be alive today - I had familial polyposis - my father also had it and he died from cancer when I was nine - my brother Larry had the problem - later had an ilestomy as well but he died in 1995 - he waited a little too long to have the surgery.
I love my life and I have a companion that has been my side for 8 years and very supportive. Please write to me if I can be of help. I am 52 years old. Jim Gile |
| Name: | Lisa Stanley |
| E-mail address: | camaroz28123@yahoo.com |
| Comments: | Had my littly gift since May 3 of this year. Was told I had endimethrosis and ended up being colon cancer. I deal with the as my son Chris calls it my Crap sack(sorry) okay. I really didn't have a choice, but that is just fine I love life to much to have it any other way. I am almost 39 years young and have been married to Mark for 21 years, we have three boys 18,16,14. They all have been great. They seem to think that I make it easier for them to deal as they say because I think it is no big deal, and that is just what it is no big deal. I to have had a couple occasions where my wafer had decided to free it self and in Wal-Mart of all places but I just told my sister-in-law gotta go and went to the car, although I did tell Amanda I would try not to go in her car again. I will have to have a scan done in November to check on my cancer to see how the Chemo is doing. The doctor says I worry him because it appears to him that there is nothing wrong with me, see you can't tell, Gosh they said I had cancer for at least 7-10 years and didn't know it, you think I'm going to let a bak get me down. My faith in god will get me through this and anything that comes up in the next chapter in this book of my life. Love to hear from you. Lisa |
| Name: | GMA |
| E-mail address: | rtexpgma@webtv.net |
| Comments: | Hi
I am 64 year old female and I guess I have had it all. In the past year I have had 4 surgeries, 1st for what they thought was a hernia and blocked bowel then a colonostomy, then ileostomy, and then finally surgery to reverse all that. I wore the appliance for a total of about 10 months and really hated every minute of it, but I have to say it was better than the alternative. I am doing well now except have diareaha most of the time.Would like to hear from anyone who might know how to solve that problem. |
| Name: | pammy pouch |
| Name: | Lori |
| E-mail address: | loridangler@yahoo.com |
| Comments: | Hi! Looking for some support and information. I'm looking at illestomy surgery in next few months and would love to hear from others who have experienced it. I'm 32- have a 4 year old. My rectum may have to be removed so surgery may be completely permanent. I've had uncontrollable diarhea at times and fecal incontinance for at least 6 months. I ended up in the hospital for the first time 2 weeks ago. I'm finishing my first week of TPN and see the surgeon Tuesday for consult. Again- would love to talk about the surgery- recovery, etc...
Look forward to hearing Lori |
| Name: | brian |
| Name: | Phil |
| E-mail address: | phil@pas-new-media.com |
| Comments: | Hi All,
My name is Phil and i have had Crhons for the past 10yrs. In 1992 I caught a cold and ended up with a realy bad soar throat and the runs. The runs only lasted a week and so did most of the symptoms of the cold apart from the soar throat, this was October 1992. I had already left my wife for various reasons the main one being that I had met some one else a guy. My soar throat didn't go away and I started to loose wieght steadily at first, I thought that it was the pressures of my devorce. Looking back I think that crhons is totally misunderstood by doctors. My moods and behaviour became more and more erratic, having pointless arguments with my bosses and relatives. By mid January 1993 I had gone down in wieght from 20st to only 13st. At that time I started to get terrible pains in my stomach bladder and bottom like no one canever imagine. I eventually collapsed on my office floor. I was found by a member of my staff and was taken home. In a matter of three weeks I went from being 13st to 6st, I had numerous hospital visits, each time seeing a different doctor at A&E who diagnosed me as having a water infection, hepititus and various other complaints. My GP just kept prescribing me pain killers. I had not had any sleep for three weeks partly due to the pain but mainly becuase I was affraid to realising that I may not ever wake up. My father a then local councilar saved my life! He got in touch with our local MP to request that he get me in to see a Specialist, this he did at a different hospital to our local. Within ten minutes the specialist had me on oxygen and in an ambulance on my way back to our local hospital. At first they thought it was hepititus and then aids and so I went through a meriad of tests and councilling. At the end of 3 days they finally decided that it was Crhons disease. Strange that becuase my mother also suffers from Crhons disease which they were informed about, which all medical staff were informed about throughout this sorry saga but no one took any notice because Crhons disease is not supposed to be hereditary! I was in hospital this time for 3months durring which time I had dropped to 5st and could not sit or lay in bed without being supported by a cussion of air becuase of the pressure on my bones. I had my large bowel removed. For various reasons they left an 11in stump from the rectum inwards. The main reason being that any one that has the whole bowel removed and rectum cortorrised like my mother had, would have a 90% chance of becoming permonently impotent because all our sexual nerve endings are in our bottom. After being released from hospital I found I could not eat as I was sick every time I ate something. Then I started to get pain in what I thought was my kidneys which ended up being my gual bladder. After numerous hospital short stays they found that I had got an ulcer in my stomach and that is why I kept being sick after eating and that they had nackered my gual bladder through over use of the hickmen line which fed me for 2months. So in late november I had my gual bladder removed yet another week in hospital, which didn't matter much as I had lost my job six months ago. After everything that happened I still managed to get back up and start again. Once you have being diagnosed as having Crhons you are never free of it. You don't have the operation and then your curred. Since I regularly suffer with holes appearing in the wall of my stomach around the stoma and under my arms. They are very painful, they smell like rotting flesh, they bleed and then they go away. They last about 3weeks and then go, my specialist say that unfortunatley I suffer from Crhons of the skin they tried to put me on steroids to treat the problem with little results. I myself did some research and found that read meat causes this problem to flare up as well as stress. So I am now vegetarian and work for myself from home. Despite all these problems and set backs I have had 10 wonderful years where I have been able to continue an nurture my relationship that I started just before I became ill. Chris is the guys name and he really is a great guy and without his help and support I would have given up a long time ago. As for starting relationships with people after your seperation and operation you should and they should look at it like this. If they really love you or desire you before they know about you little friend then it should not make any difference to how they view you and your relationship, if they don't then they don't deserve your love and commitment. Also you are a special person because of what you have gone through, you are enlightened about life and death, you have more patience then you probably once had and most of all if you didn't have that operation you would nort be here to have a relationship with that person which makes your relationship special because with out that operation you would not have met because you would be dead. I hpe that you can relate to what I have spoken about and hope that you feel that life is for living and not worrying. Regards, Phil P.S. my apologies for poor spelling! |
| Name: | Vanessa Ratts |
| E-mail address: | VRatts@aol.com |
| Comments: | Hi I had to have my colon taken out in 1988 because of plolps in the bowel. I have done fine since having it done I do any thing and everything I want to do it doesn't slow me down. I am now 44 and have live with it for 14 yrs and it was the best thing to have done instead of dying with cancer. So everyone who has to have it done have it taken care of you are risking your life if you don't I raised to kids and have had a full active life, yes it is a mind blower at first but be strong there is worse things to deal with then this type of surgery such as death. Hope I have encourage some one to think twice about having this done. Thank you Vanessa Ratts Bloomington IN |
| Name: | Elaine Tennant |
| E-mail address: | mzytet@nottingham.ac.uk |
| Comments: | Hi there,
I'm a med student following up a patient with a stoma. Your site gave me some insight about what she's been going through and really made me think about the issues for the patient. Thanks very much! Best wishes, Elaine |
| Name: | Imojean Ingle |
| E-mail address: | iiijsi@ameritech.net |
| Comments: | I like your page. My daughter has crohns disease and we know very little about it. It was a little depressing to learn that many people with the disease end up having their bowels and rectoms removed. My daughter is having a lot of problems with pain, bleeding, she lost her job and can't work anymore. She is trying to get help. I feel so helpless, but I want to help her all I can. She has two small children who need her. It was nice to find other people with similar problems. Imojean |
| Name: | jack |
| E-mail address: | thepizzaguy2000@webtv.net |
| Comments: | my wife has cd, and was just put on this new drug called Entrocort. Has anybody else been on it, and how well did it work for you. Please feel free to e-mail me
It is supposed to have the same effects as prednisone but without the evil side effects It is not cheap. If we didn't have a good prescription plan we would not be able to aford it as it is $240.00 for a one month supply |
| Name: | Johnny Q. |
| E-mail address: | jq11@aol.com |
| Comments: | HI I am a 32 yr old male,I found out that I had chron's at age 15.I had surgery at age 18,and did fine for 6 yrs.Then the chron's came back and then I found out I had ulcerative colitis. I was told that I either have the surgery and put on tne "BAG" or die from cancer later on. Needles to say I told hom to "HOOK ME UP".They say that I may be able to reverse it but I may have complications.I had a colonoscopy done and stopped breathing on the table,the had to bag me and get me breathing again,so I told them I will live with this for the rest of my life. I am married and happy,I still participate in sporting activities,I just have to be extra careful. I realize it is harder for younger people to accept it but I would rather live than stay sick. |
| Name: | Susan Billman |
| E-mail address: | Slayer_21_19@yahoo.com |
| Comments: | My boyfriend is 22 and was told he had Crohn's when he was 18 but it took his doctor two years to tell him that. He had 20cm of his terminal illemiun removed when he was 19 and after he had a 2week stay in hospital after the op he was sent home and someone was going to come around and check on him every day for a while but the day after he got out the lady that came to see him found he had a temp and took him back to hospital and they found out that he had a abses or fistula and he ended up getting 2 more so that year he spent about 80 days in and out of hospital. He is now on a medication that has began to work after being on a number of different medcation which were salazapyren, prednisilone, imuran, lopermide, verapmil and codein phosphate but they have taken him off the codein now cause they didn't want him getting addicted so he is now only on prednisilone and lopermide and also a calcium supplement. He has have just recently seen a irridoligist and she has suggested that he drink 50mls of Aloe Vera juice a day do help with digestion and cleaning out my gut and Slippery Elm to line his stomach so I will see how he goes with them and see if he feels any better. Thank you for your wonderful site and anyone with questions or suggestions feel free to e-mail me. |
| Name: | Kiora |
| E-mail address: | kiora@alaskan-husky-dogs.com |
| Homepage URL: | http://www.alaskan-husky-dogs.com |
| Comments: | Fabulous web site. You do superb work. |
| Name: | Gina |
| E-mail address: | ginawoodfin...2hotmail.com |
| Comments: | I to have a little friend. From a heritidy desease called Familia Poypsis also known as Garders Syndrom,I've had my friend about 4years. Been through every thing you can think of. 19days life support, multi organ failure,septic,and much more. But it was either a bag or die!!! So at least i am alive. Just when i thought things could not be any worse i found out my 9&13year old sons have the desease also this past June01 they had there colons removed. In Oct01 they had there reconnection done. Sence then it has been a constant race to the restroom. Needing susgestions on some thing to slow them down please. Raising my boys by myself is hard. Any one with suggestions please email me at my email address any time. This is a awsome site. If you have the same desease or just want to talk feel free to email. I would be greatful to respond.
Thanks for listning to my story, Signed:Mother in desperete need of info Gina |
| Name: | Chelsea |
| E-mail address: | chelsea@rainbowcafeuptown.com |
| Comments: | I LOVE SOFTBALL!!!!!!!!! |
| Name: | lindamarie |
| E-mail address: | lindamarie324@aol.com |
| Name: | John |
| Comments: | i am a 17 year old male who was diagnosed with crohns about a year ago i was put on a course of entrocort (budesonide) and am now on pentasa for prevention i dont know alot about the desease and am sore most days is this normal or should i see the doctor for more steroids i am reluctant to go because i have heard of steroid dependency and dont want to be on those things for the rest of my life the pentasa are bad enough any help or advice would be most appreciated |
| Name: | jeff |
| E-mail address: | jldietlein@aol.com |
| Comments: | I have had my pouch for three months. I still go 15 to 29 times a day.
Wish I knew if there is somethimg I can do to get to the normal 4-6 times aday. Thanks Jeff |
| Name: | Kevin Jenkins |
| E-mail address: | kjjenkins@freeuk.com |
| Comments: | Hi
I will be having a loop illeostomy in a few days and am nervous. Would be glad to hear from anyone with any advice / tips to help me prepare Kev |
| Name: | Alan Acland |
| E-mail address: | a_acland@hotmail.com |
| Comments: | This is the 1st "ostomy website" I've looked at, never thought of looking before.( How far behind the e-mail revolution am I!!??)
I'm a 30yr old male from the NorthWest of the UK with UC, Or maybe Crohn's! - yes the doctors couldn't decide - how useful! I was 1st diagnosed in 1995 after months of mis-diagnosis by GP's assuming it was: stomach bugs, piles, IBD, etc, etc. It was only after losing about 2 stone in weight and excessive bleeding that I was admitted to hospital! Is there anyone else who seems to have had to go through this experience? I managed to escape any surgery that time being 'fed' a mixture of steroids and pain killers.Over the next couple of years I had ups & downs with the Crohns, keeping it in check with prednisolone. The drawback though being the side effects, hungry all the time, feeling flushed, agitation, etc. I was also told that this couldn't be a permanent treatment as the steroids would eventually cause more harm than good. So in June '99 I opted to have most of my colon removed. Great, 3 days after surgery, not a bad looking scar, pain subsiding, been for a No.2! Day 5 was met with pain like I have never felt before, and there had been some pretty painful moments in the past. After being told to "shut up, you're waking other patients up", I was eventually seen by a doctor who quickly give me enough morphine to knock out a horse! After emergency surgery I found out that the stitches had 'leaked' and the abdominal cavity was filling with bowel contents, nice!! I also now had a new little friend to look after on my stomach. That really took it out of me, not only emotionally but physically. It took a further 8 weeks to be discharged from hospital, following further complications including gall bladder infection. I have to admit that although it has taken time to adjust, I would only be kidding myself If I thought I could have carried on as before, with all that medication-even if for about a year I was the fittest I've ever been, and seemingly pain-free (marvellous stuff that dihydrocodeine!). I can now eat whatever I like, yes anything, (and I like my curries- hot!), no more drugs, no rushing to the loo during the night. And one of my biggest fears was that I would't be able to resume my cycling and running, when in fact it doesn't stop me doing anything I had done previously. Having read some other peoples comments I was suprised to see that the majority who have undergone surgery have had complications of some sort. It seems the surgeon only painted me 'a rosy picture'. But if there is someone reading this who is to undergo surgery for UC or Crohn's, please don't be put off, for most and for me the results out-weigh the pain and discomfort. My only wish would have been to come across or to be told about websites like this, or to have further information at hand - it seems UC & Crohn's are still not fully recognised. Throughout all of my time having Crohn's my wife had given endless support and reassurance, especially since I didn't sexy in the bedroom anymore!! Unfortunately, we are not together anymore, and now I can't help wondering was it my 'little friend', or was it the added pressures of losing my job, ?? We now share responsibilty of my wonderful 2yr old daughter Jessica, who makes me forget anything that has gone on before. I would love to hear from anyboby, especially those like me who find it a daunting task to enter into a relationship after the addition of a stoma, etc. |
| Name: | Ray McLean |
| E-mail address: | sallasmclean@juno.com |
| Comments: | 41 year old, had CD for 22 years.Had a illeostomy 3 years ago. Poor job, It was really small. I couldn't keep a wafer on for more than 2 days. Had a reversal 2years back. What a hack for a surgeon(he apologized for his "mistake" then denied any wrongdoing,of course). It came apart, I was telling the docs and nurses for about 8 hours until I became septic, and they had to believe me when it almost killed me. ended up with an illeostomy again. This one works great they keep on trying to convince me to get hooked up again HaHaHa.Fat chance. I for one am greatful for this bag. My wife loves a happy healthy husband, and I've got 4 kids to raise |
| Name: | Ray |
| Name: | I.P.SAIGAL |
| E-mail address: | saglcorp@vsnl.com |
| Comments: | I WOULD LIKE TO BECOME MEMBER OF DREAMBOOK AND KNOW ALTERNATIVE MEDICINES FOR ULCERATIVE COLITIS. |
| Name: | Kully |
| E-mail address: | Crazypanache@hotmail.com |
| Homepage URL: | http://clubs.yahoo.com/clubs/asianostomates |
| Comments: | Hi i am a 21 year old sikh female from the UK. I have
crohns and an ileostomy since i was 10. |
| Name: | Delores Pettit |
| E-mail address: | dpettit1947@aol.com |
| Comments: | I have had a Illiostomy since 1980. had many revisions (13)
so far .Ihave a koch pouch. It has given me many problems. so i try to keep up with any thing new. and to see how others cope. Delores |
| Name: | loui |
| E-mail address: | happyhealthy.com |
| Comments: | I have crhons now 22 years, had colostomy reversed and then
dirty stitch turned absess, back for ileostomy !!!!!1 use only alternative medicine doing fine healed absess witth essntail oils now look at revesal at end of year. keep smiling |
| Name: | Sherri Reynolds |
| E-mail address: | frogvision@aol.com |
| Comments: | Thank God for this page. I just had the addition on May
24, 2001 and let's just say that depression was running rampant. Reading everyone's stories brought smiles to my face. If anyone feels like writing a 30 year old adjusting to this new life, please feel free to e-mail me. Thanks again for the site. |
| Name: | Kim Rodger |
| E-mail address: | kimber1@magma.ca |
| Comments: | Just got out of the hospital yesterday! I am 28 years old
with Crohn's.Woke up from it all and found out I have a ileostomy. Still trying to adjust to the way it looks. Sounds gross..but it looks like a little penis sticking out of my stomach !This will take some getting used to. i would like some odor tricks/tips if anybody knows anything that helps. I heard that putting a mint in your pouch helps? I use the mouthwash but that just doesn't cut it? Any suggestions are appreciated! Kim |
| Name: | Rufus McMahon |
| E-mail address: | RUFUSMACK@AOL.COM |
| Name: | Terry Hall |
| E-mail address: | terrancew47@hotmail.com |
| Comments: | Thanks so much for this site!!!!!!!
I was diagnosed with UC in 1996 (at the age of 42) and Chrons in 1998. In 1998 I had a sub total colectomy and end iliostomy and surgery in 1999 for removal of my rectum. What a roller coaster ride of sickness, hospiatal stays, near death experiences,weight loss and long recovery. Unfortunately, this illness has cost me dearly as I have separated from wife of 17 years and lost my bussiness. As much as my quality of life has improved, my self esteem has taken a beating as I have been uncomfortable entering the dating scene with the prospect of having to explain this disablity to a potential sexual partner. It would be nice to chat with a female experiencing the same problem. While in Mt. Sinai Hospital (Toronto, Canada) awaiting ostomy surgery I read a full page story about the Yukon Quest, reputed as being more arduous a dog sled race than the Iditirod. One of the participants was a firefighter from Anchorage Alaska, and was quoted as saying that he had just had Ostomy surgery for UC and was out to prove "that you don't need guts, to participate in the Yukon Quest". That statement was extremely inspirational for me. As an athletic and active outdoors person, one major benefit has been when I winter camp, I don't have to worry about leaving my tent to drain my appliance!!! I would love to e-mail others and receive email from others. |
| Name: | NICK G. MIHALOPOULOS |
| E-mail address: | nick@parthenoninc.com |
| Comments: | The PARTHENON CO., INC. manufacturers and distributes
DEVROM CHEWABLE TABLETS. DEVROM is an oral deodorant that is used by OSTOMATES to control odor. It is very effective and inexpensive. PARTHENON can be reached by calling 1-800- 453-8898. Ask for a FREE SAMPLE OF DEVROM. THEY also have an 85 page catalog devoted entirely to OSTOMY SUPPLIES. They boast the lowest prices for Ostomy supplies. |
| Name: | Sherry Fritz |
| E-mail address: | sherry8284@yahoo.com |
| Comments: | Currently looking for alternatives for bowel obstruction
due to endometreosis. If I am not successful,... it is nice to know there is somewhere I can go for support. Thanks! |
| Name: | Jill Bean |
| Comments: | Does anyone out there have any advice for pregnancy and
ileostomies? I have had mine for two years and am now healthy enough to start thinking about having kids. I can find nothing anywhere about risks, diet, etc. Anything would be great! |
| Name: | Jana Frisch |
| E-mail address: | JanaJoyFrisch@aol.com |
| Comments: | new to the world of ostomy. don't like it but finally have
learned to accept it and make the best out of it. |
| Name: | Mickey |
| E-mail address: | mickey@san.rr.com |
| Comments: | My niece had a colostomy about eight weeks ago, ending a
longtime bout with severe constipation caused by a sphynter muscle that would not release when the bowl was full. Her colostomy has a stoma that carries her waste out of her body and another opening almost hidden by the stoma that goes down the rest of her colon to her rectum. This section no longer carries waste to her rectum, but still produces mucus. This mucus builds up be cause she can't easily release it (sphynter muscle still too tight). The pressure of this mucus seems to be putting pressure the stoma causing pain. Enemas to empty the mucus relieves the pain. I'm wondering if anywone knows about this condition. |
| Name: | Leigh Howard (HOWIE) |
| E-mail address: | ecap@netscapeonline.co.uk |
| Comments: | Hi,
I'm 26 years old and from the UK. I had most of my colon removed in 98 for UC and an ileostomy formed, I continued to have problems with bleeding from the 20 cm of rectum that I had left , I wasn't getting better and feeling rubish all the time and also I suffered from severe mouth ulcers.I deciced to go for more surgery and get the last 20 cm of rectum removed. I underwent surgery in October and I've never felt this well for years.There was a risk of the sexual nerves been damaged during the removal of the rectum but I'm glad to say that everythings working correctly, (THANK GOD).I've got used to living with the bag which causes me little or no inconvenance, I haven't looked back since the first operation it was black and white really, Death or the BAG < I'm glad I voted for the bag. Here's to LIFE , See ya HOWIE > |
| Name: | Bobbie Jean |
| E-mail address: | Zysettb@ml.lbcc.cc.or.us |
| Comments: | I am 43 years old and have four children and a great
husband. I play softball, hunt, fish, I do just about any thing thats family fun. Then I got real real sick, almost died. I have had my illostomy on Oct.17,2000. It's nice to be back among the living, but I sure hate being the bag lady. |
| Name: | Ryan |
| E-mail address: | ryan-holm@home.com |
| Comments: | Thanks for the site.I'm 29 and facing the possibility of
getting one of these critters,becuase of CD.I'm still a little nervous but life goes on.Great site. |
| Name: | Donna |
| E-mail address: | imsomisty@yahoo.com |
| Comments: | Have had illeostomy since '87. It's a real pain in the
butt, but the alternative is worse. Have had some bad moments-leakage, etc.-luckily most of them were in private. I'm very lucky as my husband is very supportive. I have only met two other ostomates, but I know there are many more out there, but people just don't talk about it. Look at how they got on Katie Couric for broadcasting her colon being scoped. One of these days there will be a movie of the week about us and then we'll be more accepted, and more accepting of ourselves. It took me 10 years to be able to look at myself full on in the mirror, I just couldn't accept that the bag was now a part of me. I don't have to like it, but to control what happens, to be in charge, I have to accept that it's there. I'd love to hear from anyone anyone has comments. |
| Name: | Michael Frank |
| E-mail address: | mfrank@videotron.ca |
| Comments: | I have had my ileostomy from UC for 22 years. I had a
revision done about 10 years ago that involved bringing the stoma a little further out onto the skin. I have very few problems and can eat most anything. I have always been told to experiment in small doses. I've had blockages before and it was from excessive eating of the wrong foods, such as, peanuts and certain vegetables. I always chew well and peel any fruits that have skin. I am 42 years old and I play all kinds of sports. My biggest problems are swimming for long periods of time and playing in hot sun, sports like tennis and baseball, where the tape that holds down my pouch starts to come undone due to sweat. If anyone has a remedy for this, I'd love to hear it. In general, I don't have a problem living with an ileostomy, as I have managed to live without having to think about it every two minutes. I don't think I have an odour problem because no one has even hinted at it to me - ever. If I do notice odour, I simply put on a new bag (usually I've had many uses out of the same bag, so it's not an expensive thing to do) and discard the odourous one. It's no use cleaning it because I find it doesn't remove all the odour - ever! If you want to avoid odour, do not eat things that have lots of garlic and onions and dairy products. Some of the worst foods for this are submarine sandwiches or pizza. Of course you are reminded you have an ileostomy when you have to empty your bag or have to change it. I have accepted it. The tough thing is getting people who don't have an ileostomy to accept it without putting them in shock. I am recently separated from my wife whom I had been married to for 19 years. My friends all know I have had this surgery. It's the new people I am meeting now that seem to be more sensitive and to shun the facts. Your true friends are the ones who do understand and are there for you through thick and thin. It's a big world. There's nothing to be ashamed of. Keep your head high! Happy New Year! |
| Name: | Cynthia Logan |
| E-mail address: | cynthial@idirect.com |
| Homepage URL: | http://www.angelfire.com/co2/weircomfees |
| Comments: | I, too, have an ileostomy from Ulcerative Colitis. At
first I hated it, but last year decided to turn something bad for me into something good for others - I bought Weir- comfees, a Canadian business that makes underwear and swim- wear for people with ostomies. The woman who started the company in 1995 was diagnosed with breast cancer in 1998 and died September 2000. This is my way of trying to keep her dream alive, and help out others with these needs. |
| Name: | Joyce |
| E-mail address: | joyrmy@hotmail.com |
| Comments: | At the age of 46, life has took on a big change in my
life. I've had my illeostomy for 18 months. It doesn't seem like much. But when this happens without any warning its frightening. Feel like I have placed myself away from my friends and family because of this. Having a bag, makes me feel like a old bag. I've also experienced the clip not closing, and what a mess. We have to laugh at it, to keep from crying. |
| Name: | Ruth Milne |
| E-mail address: | jymilne@talk21.com |
| Comments: | I live in England and 1 year ago had an illeorectal
anastomosis. I have 12" of colocn left ( the rest was removed because of cancer). When I left the hopital I was advised to "have a go at eating anything you want". I have found I cannot eat any fibre or spices, not many fruits, and not many vegatables. WHAT A DRAG. I also need a mobile toilet with me at all times!!! Anyone out there that can weep with me and laugh about it also. Is there a way of managing it. I use Celevac and Loperamide, anyone have any more success than myself? |
| Name: | Sherri |
| E-mail address: | slw1230@hotmail.com |
| Comments: | I was diagnosed with IBD this January and by May had my
colon removed. Crohn's hit me hard and fast! With only a one day notice before surgery I did not have time to prepare for life with an illeostomy. I am always looking for tips on how to make everyday living with an ostomy easier. It takes me forever to do the simplest things such as clean the tip of my pouch after I drain it. I'm not ignorant enough to say my quality of life has not drastically improved, but I feel I do not KNOW enough about living with an illeostomy. If anyone has any advice for me please send me an e-mail! |
| Name: | Reid Baldwin |
| E-mail address: | jib@vic.australis.com.au |
| Comments: | If anyone can supply experiences of bringing up a young 3yr
old into this unique life I appreciate return comments |
| Name: | Deb |
| E-mail address: | ddwt@gateway.net |
| Comments: | Hi guys! Had ileostomy 30 years ago in July at age of 16
for UC. Adapted well and have only had two surgeries for blockage. My biggest problem is the odor. Finally found the subgallate busmuth tabs (Devrom) but my supplier is now wanting $22 a bottle of #100. 2 years ago it was only $10. Does anyone know of any other bismuth product or supplier that might be cheaper? |
| Name: | Britt Withrow |
| E-mail address: | papadoc428@cs.com |
| Comments: | Hey can we get real! I've had an ileoostomy since is was 22
I am now 37 and yes sometimes it sucks! I'm alvie fairly healthy and went on to marry and have 3 beautiful childern. A day doesn't go by that I don't look down and check my "bag" and make sure it's not leaking( I've had my share of most embarassing moments) or smelling or whatever. I will never get over having it. A day will never go by that I don't know "it's" there. I'm sure I'm way more woried than anyone else but I'm pretty sick of people who have had sugrey and say life is wonderful. Don't get me wrong I'm glad I'm alive and no longer in pain but it will always bother me.I can wear normal clothes do most anything and try to live life to it's fullest.My husband could care less that I have an ileostomy and I think hes the exception to the rule. I feel loved and accepted now why can't I accept myself???????????? |
| Name: | SHIRLEY MILSTEAD |
| E-mail address: | MILSTEAD@TSTAR.NET |
| Comments: | Hi I had my ile-ostomy in June 5,1999.I still have problems
and lots of pain.Have short gut syndrom,u.c.Have lots of lower back pain.Now passing infections from other end.Any sugesstions?I had 14 major operations and need more.I am 49 year ols female.Also have chrons.The ostomy suport group has helped some,My Drs. call me their little nightmare.Have had open heart operation and have ostimilites in breast bone which has been open up 7 times.Blood clots in lungs.But I feel I am lucky not to be 6 feet under.Would love to e-mail others and recieve e-mail. do feel I'm lucky |
| Name: | jiminy cricket |
| E-mail address: | cricketj@bellsouth.net |
| Comments: | Thanks for the page. Had the operation over two years ago
and feel that my life has been returned to "normalcy". Except for a couple of minor blockages , the only bizzare event happened recently when I was getting ready to meet a friend on the golf course. Before leaving , I was emptyng the pouch when the phone rang, and the door bell rang at about the same time. Rushed that I was , I forgot to clip, which I didn't notice until I got to the clubhouse. FORE |
| Name: | Anna Marie |
| E-mail address: | citychic2000@aol.com |
| Comments: | Who's world is it anyway!!! Before my illeostomy 5 years
ago, I believed life was great. But since the detour, I felt like I crashed and given a bizaar new body part, let alone another chance on this planet. I'm a 35 year old who was diagnosed with Crohn's Disease at the young age of 20 and would like to correspond to others in the same situation. And by the way, it is still OUR WORLD! |
| Name: | Therese |
| E-mail address: | missy7029@yahoo.com |
| Comments: | Hello |
| Name: | Lin |
| E-mail address: | linlanart@aol.com |
| Comments: | Any advice on dealing with Short Bowel Syndrome? Diet
alone is not slowing things down . Any useful drugs? I had a total collectomy with an internal pouch 3 years ago. Starting to feel depressed, like i have colitis aga |
| Name: | Salah |
| E-mail address: | salahd@qatar.net.qa |
| Comments: | Its nice to read those successful stories , i had a total
collectomy 5 years ago for familial polyposis , i dont know wheather it was the right decision ! it was more a preventive procedure against cancer , but i cant stop blaming myself for having took that decision as a i keep asking myself : what if i didnt get cancer ? maybe asking that question is part of my depression ? The surgery was performed in Mayo Clinic in 1995 . |
| Name: | ann |
| E-mail address: | xxxxxxxxxxxxxxxxxx |
| Comments: | Just came across your pages - good to read about other
peoples stories and it really helps as I had surgery 5 weeks ago and have only met 1 other ostomate so far. |
| Name: | margery coggon |
| E-mail address: | margery.coggon@ns.sympatico.ca |
| Comments: | i had cancer of the uterus and lymph nodes. after long
sessions of radiation of different sorts , i ended up with an ileostomy. my problem is i now have a fistule that they can't operate on because of radiation, it is from the uterus to the rectum, so am constantly fighting infection and am on 250 gr. flagyl four times a day plus immdodium. i just wondered if there is any herbal remedy that would help heal this. i would appreciate any suggestions. i love your page. so informative. |
| Name: | Kathy |
| E-mail address: | kathy2865@hotmail.com |
| Comments: | I am a 46 year old female and was first diagnosed with
Crohn's Disease at the age of 15. I've been through most of the surgeries and problems that I've read about here at this site...fistulas, partial colon removal leading to a colostomy in 1973, recurrence of the disease that lead to full removal of my colon in 1978 and an illestomy. I'd like to say one thing.....life does go on. I had fears about having surgery just like all of you did, but having surgery, in my case, increased my quality of life so that I have no regrets. I'm so glad to know that there are sites like this where people can share their stories and for those of you that are possibly facing surgery to know that your not alone. I've included my email address, if anyone would like to talk, feel free to write to me. Gizmo, thank you for this site. |
| Name: | RuthB |
| Homepage URL: | http://www.angelfire.com/ca4/KIA |
| Comments: | You were alot more willing than myself to have a permanent
illeostomy,I insisted my surgeon keep trying to fix me,but in the end I had no choice 14 major surgeries,and I got a permanent illeostomy.I am still sick with crohns disease,and now short bowel syndrome,but I am no longer incontinent,as much as I would prefer not to have an ostomy,the alternative was the worst.Well done page.<BR><center><a href="http://www.angelfire.com/ca4/KIA/"> <img src="http://www.angelfire.com/ca5/KIA/kiaoneday.gif " alt="Kindness in Action" border="0"></a></center> |
| Name: | RuthB |
| Homepage URL: | http://www.angelfire.com/ca4/KIA |
| Comments: | You were alot more willing than myself to have a permanent
illeostomy,I insisted my surgeon keep trying to fix me,but in the end I had no choice 14 major surgeries,and I got a permanent illeostomy.I am still sick with crohns disease,and now short bowel syndrome,but I am no longer incontinent,as much as I would prefer not to have an ostomy,the alternative was the worst.Well done page.<BR><center><a href="http://www.angelfire.com/ca4/KIA/"> <img src="http://www.angelfire.com/ca5/KIA/kiaoneday.gif " alt="Kindness in Action" border="0"></a></center> |
| Name: | Heather |
| E-mail address: | robi@island.net |
| Comments: | Have been an osomate for five years due to U.C. Would love
to talk with fellow marsupials. Thanks for the very nice sight Gizmo. |
| Name: | Lea |
| E-mail address: | LeaLea1952@aol.com |
| Comments: | I've had a colostomy since 11/96 due to bowel obstruction
from endometreosis. It was unexpected to say the least. We just recently join the modern world and got a computer and I was thrilled to find your site. In three years I've not met another person with a ostomy of any sort. Other than a recent skin problem around my stoma, life has gone on pretty much normally. I HAVE flushed my clip twice, which convinced me to carry a spare in my purse. I would love to exchange ideas and tips on life as a ostomate.. Thanks, Lea |
| Name: | Rick |
| E-mail address: | riev2000@uswest.net |
| Comments: | My Mother is about to undergo surgery for severe
ulcerative colitis (8 years of it) and they plan a complete collectomy. I've been a little worried about the possible outcomes, and it just makes it a little easier knowing there are success stories I can show her. Thanks for the web page, and thanks for the little bit of relief! Rick Hill |
| Name: | Laurie |
| E-mail address: | dreamer@xpres.net |
| Comments: | Hello All...
I've had an ileostomy for 30 yrs. now (I'm 49 now). Original surgery was for acute UC; but I was re-diagnosed with Crohns 10 yrs. ago. I've had two peristomal hernia repairs in the past 6 months. On the positive side: I had an uneventful pregnancy 19 yrs. ago... my son was born by planned C-section and all went well. I had NO problems with the pregnancy. There IS life after surgery! |
| Name: | Bev |
| E-mail address: | squawll36@cs.com |
| Comments: | This was interesting. I'm an ileostomate also have been
for 8 yrs. much happier now then before ostomy cause now I feel good. I had to have mine cause of a genetic desease. I love finding other ostomates. |
| Name: | Bev |
| E-mail address: | squawll36@cs.com |
| Comments: | This was interesting. I'm an ileostomate also have been
for 8 yrs. much happier now then before ostomy cause now I feel good. I had to have mine cause of a genetic desease. I love finding other ostomates. |
| Name: | Tracy |
| E-mail address: | tshaw@mitre.org |
| Comments: | I would definitely like to hear more about other folks
troubles with chrontic pouchitis - especially the reference to Candistroy. I've had my IAP since 97 and have had lots of problems with pouchitis since last year when I took Accutane. Please feel free to email me or make any comments if you like to. Don't ever give up or think you're alone in this! Thanks |
| Name: | David CARR |
| E-mail address: | dave@carr41.freeserve.co.uk |
| Comments: | I had a total collectomy 11 years ago due to chronic
ulcerative colitis. Totally fine with it, it's nearly half my life now!. If you're about to undergo surgery and are worried about the long term impact on your life, don't. My big show-off for this year was climbing a 21,000ft peak in the Nepal Himalaya; I don't want to go into it too much but having an ileostomy is pretty advantageous at high altitude mountaineering!. Question?: Does anyone of any ileostomists who have climbed one of the 8000m mountains of the world - I intend to attempt Gasherbrum II in Pakistan next year and thought I may be able to raise a bit of sponsorship (and awareness)if I was the first. Gimme a shout, Dave. |
| Name: | Herm Tappin |
| E-mail address: | tappinh@cusd.com |
| Comments: | Dear Rita from texas,
Thank you for the information on Candistroy for Pouchitis. I have some questions about side affects. Are there any side effects that I need to know about before I use it. Thanks Herm |
| Name: | John Hesse |
| E-mail address: | jhesse@cisco.com |
| Comments: | I have a quick fix for failing clips. (Send me an e-mail and
I can e-mail you a simple drawing). I've had my ileostomy for 5 years after UC for 19. Ihave had several experiences of failing clips and pealing pouches but still not even close to a lingering Flare up. |
| Name: | Dollie |
| E-mail address: | dollie01@home.com |
| Comments: | I had a Brooke ileostomy for 8 years & then got a BCIR
which is an internal pouch.....I love it!!..It has worked out great and I feel almost normal...brouse the web under BCIR and check it out... |
| Name: | E. RISING |
| E-mail address: | rising4@yahoo.com |
| Comments: | Thank you all for the positive comments regarding life with
an illestomy. I have had Crohn's disease for 5 years and have had three rectal surgeries [ouch). I've been fighting the illestomy for 1 year, by killing the rectal pain with pain killers. At this time I have been off pain killers for one month and had an infusion of Remicade. I take 100mg of 6MP daily ( purinthal). This is my last chance to heal and get my Crohn,s under control. If I fail, your stories have given me the courage to have the surgery. THANK YOU ALL |
| Name: | Paul |
| E-mail address: | pf318@juno.com |
| Homepage URL: | http://members.xoom.com/pf318/ileostomy.html |
| Comments: | Hello Gizmo
I found ur site through the web ring. I to have an ileostomy and am doing fine with it at the present. I do have the option of having a j-pouch but i dont know if I want to risk it. decisions ,,,,decisions take care,,Paul |
| Name: | Jenn |
| E-mail address: | Jennw2nns@aol.com |
| Comments: | My brother is about to undergo ostomy surgery because of
Crohn's. Your stories are inspiring. If anyone has any words of wisdom or advice please email it to me. Looking forward to hearing from you. Thanks. |
| Name: | Susan turner |
| E-mail address: | turners68@hotmail.com |
| Comments: | Colostomy - second time around - due to colon perforations
from Erhlos Danlos - type IV |
| Name: | Frank C Smith Jr. |
| E-mail address: | fcs3@aol.com |
| Comments: | Good job on this site. I've had my colostomy since Feb. '99, rectum gone also, cancer was the reason. No problems since the operation.
lots of luck Frank from VA |
| Name: | Doug Swicegood |
| E-mail address: | glent@mail.cswnet.com |
| Comments: | Ach, Sorry about the spelling errors in the noun 'surgery'
and in the use of the contraction 'it's' for the possessive 'its'! I'm really losin'[it] here lately folks!! You certainly couldn't tell I passed college English! (laughs) sae lang guid fowks, Doug |
| Name: | Doug Swicegood |
| E-mail address: | glent@mail.cswnet.com |
| Comments: | Just wanted to add a wee bit more to say that my doctor's
were great and did the best they could in surgery, it's just that my body had about met it's limit and that's why I had problems healing. Fairfaa aa ye guid fowk! Doug |
| Name: | Doug Swicegood |
| E-mail address: | glent@mail.cswnet.com |
| Comments: | Hou ye duin the day? I had my ileostomy surgury in 1988
after having UC for nearly ten years. My body hasn't healed properly (some scar tissure and a part of my colon rests on my bladder and some nerve damage was done) and I still struggle with a few problems, also I stay tired a lot, but life is better now than before. I really appreciate Gizmo's website (I found it surfin' the web last year in '98) he is a great guy and I also take my hat off to the rest of all my fellow ostomateys who signed this guestbook. We have all gone through something terrible, nevertheless, we are still here and going on with our lives. Ma prayers be gang wi ye, an Mey God bless ye lads an lassies aa! Nae maitter whur ye byde, God is aaweys wi ye! Doug |
| Name: | Richard Werner |
| E-mail address: | Kindly1@prodigy.net |
| Homepage URL: | http://pages.prodigy.net/kindly1/ |
| Comments: | Hi, I had my original conventional ileosomy for 27 years. A
year ago I tried unsuccessfully tried swithing to a interanl pouch. Now not am I only back to a conventional ileostomy, I also have Short Bowel Syndorme. My original ileostomy did not stop from doing anything. Now my life has changed dramatically. I sure would like to hear from others who have have similar situation. All have a good day. |
| Name: | Janice Lea Wilkes |
| E-mail address: | janicelea@angelfire.com |
| Comments: | Hi!I have an ileostomy due to Crohn's Disease.I have had
Crohn'd Disease for over 5 years.And I have had an ileostomy for the last two years. |
| Name: | B Pullen |
| E-mail address: | niteshfter@aol.com |
| Homepage URL: | http://members.aol.com/niteshfter/personal/index.htm |
| Name: | Todd |
| E-mail address: | tmting33@hotmail.com |
| Comments: | Great to hear from someone like myself. I've had my
"buddy" for two years,and my life has changed completely. After missing the best part of my twenties, buddy has allowed me to make up for lost time and taught me that life is very short and we must enjoy it while we can. Best of luck in the future!! ;-) |
| Name: | Tina |
| E-mail address: | lexi-10@rocketmail.com |
| Homepage URL: | http://members.tripod.com/~Lexii/Lexiihtml |
| Comments: | ive had UC for almost 2 years now. My Daddy had it for many
years before having his colon completly removed. Your story sounds so much like his. He finally went to Vanderbilt Medical University before a Dr deceided to give him the surgury. Which for him was the best thing to happen to him. I just wanted you to know that I enjoyed your page. |
| Name: | Dan C. Tyrrell-President UOA, Inc. |
| Homepage URL: | http://www.oua.org |
| Comments: | Good Luck! There is a good quality-of-life after ostomy surgery. |
| Name: | Steve Strizic |
| E-mail address: | sstriz@earthlink.net |
| Comments: | I was surfing the net and thought I would visit your site.
I have had an ileostomy since 1990 due to U/C and am doing fine. I got involved with the United Ostomy Association and the Crohn's and Colitis Foundation and found them both to be good for personal support and information. These groups both help you get on with your life and it's nice to know people who have "been there" Steve |
| Name: | Jerry Honeycutt |
| E-mail address: | jerryhoneycut@hotmail.com |
| Comments: | Had my illeostomy since January 74. Am now50 yrs old and
live a great life. Have been in hospital once since surgery. Had a blockage in l976. Have not had any problems since. Live a very normal life. My illeostomy gave me a new chance in life. Glad that I had it done. No looking back. |
| Name: | john talley |
| E-mail address: | jtalley@ficom.net |
| Comments: | Just cruising the net, looking for stuff about ileostomies
(have had my permanent one since 1972) and ran across your page. Very fine. There's a lot of us out there and sharing our stories, good or bad, is always a plus. Keep up the good work and if anyone wants to e-mail, feel free. |
| Name: | Phyllis Rocher, R.N. |
| E-mail address: | rocher@montrose.net |
| Comments: | I was just looking for teaching information for my hospital
patients and came across your page- thanks |
| Name: | Phyllis Rocher, RN |
| E-mail address: | rocher@montrose.net |
| Name: | Amelia Fowler |
| E-mail address: | catsmeow21@webtv.net |
| Comments: | Hi! I just wanted to commend you on this website. We all need emotional support when dealing with IBD and ostomies. I was diagnosed with Crohn's in 1977 when I was 11 years old. After many hospitalizations, tranfusions, etc.,I finally had an ileostomy done in 1987 when I was 21. While all my other friends were out enjoying becoming "adults", I was dealing with a new life with an ostomy. I am so happy I had the surgery. It has changed and saved my life. I had a flare up of the Crohn's in 1991 and had to have the ostomy revised because of a non-healing fistula and the stoma site. My social life has improved 10 fold. I too was worried about how people would approach me or see me. I was also worried about the intamacy issue. My husband of 9 years has been wonderful. In hindsight, I know now that if someone judges me because of the ostomy or the Crohn's disease, these are people I probably don't need to be around. Education is the key to ignorance. We ostomates have an obligation to help out people who are facing ostomy surgery. Perhaps in our lifetime, there will be a cure for UC and CD. Until then, take gentle care!
Amelia Fowler |