Contact list for those
who have not had any surgery yet:
If you would like to add your name to this contact list, please go here.
Name: Corey Dougall
Email: dougall@westnet.com.au
Age: 15
Country:Western Australia
IBD:UC
More Info: Just thought I might be able to talk with other teenagers my age who suffer with U.C.
Name: Susan
Email: rmacool@eznet.net
Age: 33
Country:Hornell, NY, USA
IBD:UC
More Info: I am a 33 year old mother of 5. I have been dealing with UC for 4 years with the last year being the worst. Like many, I am sick of hospital stays, pain and knowing the exact location of every bathroom in a 60 mile radius! I am hoping to have surgery soon and am shooting for the parks procedure(j-pouch). I would love to hear from anyone who has had it done and has some advice to share. Thanks!
Name: Ian Hamilton
Email: TARTANARMYLAD@aol.com
Age: 16
Country:England
IBD:UC
More Info: Hi, I am interested in talking to anyone who has had surgery or not. I would like to chat to people of similar age but will gladly respond to any e-mail sent to me.
Name: Keri
Email: MIKMOUSE83@aol.com
Age: 17
Country:Rhode Island, USA
IBD:CD and IBS
More Info: I am 17 yrs old, and love to talk to ppl with IBD. I have had a really rough time with it. I have had CD for over 3 yrs. I have been hospitalized about 11 times, had 7 colonoscopies. I have had pain very badly. I have had TPN 2 times. I am losing weight and I can't eat. Anyone who wants to talk, please email me!!! :)
Name: paul thompson
Email: pvt2000@prodigy.net
Age: 37
Country: orlando,fl
IBD:UC
Name: Lisa
Email: lisaellin@aol.com
Age: 32
Country: USA
IBD:UC
More Info: Just that I am a single 32 year old woman who may need surgery in the future. I just spent 16 days at Mt. Sinai Hosp. in NYC under quite excellent care. I am interested in the BCIR. Currently I am taking cyclosporine, prednisone, asacol, 6MP, rowasa and cortenemas, and a few other assorted goodies! I have a great job, good outlook on life, am optimistic about the future but would like some of my pain to go away! I would be interested in hearing about others' experiences with cyclosporine (and the BCIR).
Name: Ernest Di Bart
Email: contes@bellatlantic.net
Age: 65
Country: Forked River, N.J.
IBD:UC
More Info: I have had problems with colitis of and on for many years.
In the last four years it has really flared up with blood and mucous. Just recently I had a Colonoscopy and it showed a three in stricture in the lower end of the bowel. It has become increasingly difficult to have a normal B.M. I a currently scheduled to speak again with a surgeon at Univ. of Penn. to set a date for the operation. Oh yes, biopsies should no cancer. I was wondering if laproscopic procedures are being utilized. I always considered myself a young 65, I was very active in sailing, model airplane flying, travelling, hiking etc. I am usually positive but sometimes at night I get very depressed. I am fortunate to have a wife of 41 years who is a R.N. and very supportive. (Sometimes I refer to her as Nurse Ratchet when I don't get enought sympathy) I will appreciate any information or advice from anyone who has been down this road. Thank you in advance.
Name: Dorothy
Email: piecuch@uswest.net
Age: 49
Country:USA
IBD:IBS, incontinence
More Info: I need to decide what to do. Colostomy is suggested.
I'm either reclusive at home or go out to someone's
bathroom! Rectal surgery failed, apparently there
is nerve/muscle damage from birthing. I'm more
concerned with the after effects than surgery itself.
I've had so many surgeries(from head to toe)...
How do you dress - special hints/tricks so bag
isn't obvious? Bathing suits? Sex? Seems like it
would be totally gross for the significant other?
(My "saint" has already adjusted to double
mastectomy) What about recovery time? How long
to adapt to procedures? Cost of supplies? What
complications, immediate and down the road?
Name: Hanne Mette Melgaard
Email: hannemo@online.no
Age:22
Country: Norway
IBD: UC
ICQ: 14913111
Name: Genia
Email: gsteele@advancenet.net
Age:31
Country:Illinois
IBD: CD
ICQ: 19599983
Name: Diomedes Mendoza
Email: Anyaddan@aol.com
Age: 45
Country: Bensenville IL
IBD: UC
More Info: I would like to receive info on Ulcerative Colitis.
Name: Patty
Email: pfinch@netzone.com
Surgery: Contemplating Urostomy
More Info: I've had interstitial cystitis (inflamed bladder wall) for 15 years. So I
can live without the operation. But I have feelings of extreme frequency anytime much urine at all is in my bladder. I eat a VERY restricted diet (only 2 or 3 kinds of fruit are allowed, for example) to keep the urine non-acidic. I go to the bathroom every 15 minutes for an hour or so if I dare drink a glass of water. I have problems from not drinking enough water. I get up 5 to 8 times a night, plus it is difficult to get to sleep with my
bladder screaming at me.
I can do better if I take prescribed drugs to knock me out but I don't like the side effects plus I still get up at least 2 or 3 times. I've had to give up long hikes, biking, etc....lots of things that were important to me. It also restricts what jobs I can do. Might like to do elem. teaching again, but can't right now. I have tried every possible cure and some experimental ones. I'm one of the unlucky ones who nothing helps much.
So I guess you all would say GET IT OUT, right? I know it is stupid but I'm really concerned that the bags seem crinkly. Are there some that don't make noise? I know that seems like a little thing to be worried about but I am!
Name: Chris Linn
Email: BLinn410@aol.com
More Info: Pros and Cons of the BCIR and the exterior bag ileostomy.
Name: Ilene Shapiro
Email: PebblesC@aol.com
Surgery: ileostomy
IBD: CD
More Info: I have had Crohn's Disease for 15 years. I had a temporary Ileostomy to divert the stool away from the rectum due to fistula with abscess. I am having my colon and rectum removed in August '99.
Name: Robert
Email: Robert, Please send me your email address to ssandells@bigfoot.com so I can include it - Shaz
More Info:Have been battling UC for 2 years...can't wait for surgery this coming summer...some advice would be greatly appreciated.
Name: Shannon
Email: lgcompt@flash.net
Surgery: Going to see surgeon Dec.22
IBD: Indeterminate Colitis- They
really don't know.
Meds: Asacol, 6MP, Flagyl, Cipro,
Heparin, Rowasa enemas
More Info: I have had the disease
2 years in Jan. 1st year only one bad flare. This year has been awful!
I had a horrible flare last Spring, and have been flaring since October
8th. Now, contemplating surgery. I am a competative distance runner when
well. I was trying to qualify for the Olympiic trials in the marathon,
but my disease has wiped me out! I miss life before illness. I miss good
food, and clear skin, etc. Sometimes I really get depressed. If surgery
could be the answer to a better quality of life, I'm in! Having indeterminate
disease, I don't know if it would help!
Name: Melynda Parsons
Email: parsons@silkspin.net
Surgery: Thinking about a colostomy.
More Info: I am sick and tired
of being sick and tired! At first I was nervous about any surgery but now
I'm actually EXCITED!!
Name: Stephanie
Email: dutch2@usol.com
Age: 23
Country: USA
IBD: Crohn's Disease
Surgery: None
Name: Dawn Luker
Email: None given (Dawn, please
contact me with email address, thanks - Shaz)
Name: Gail Lewis
Email: None given (Gail, please
contact me with email address, thanks - Shaz)
IBD: UC
More Info: i was diagnosed with
UC at the age of 11. Over the years i have learnt how to handle the pain
and not so charming moments in my life. However, i am almost 30 with 2
wonderful kids and find it hard to go to the mall or the movies because
my tolerance of pain has gone way way way down. during the abdominal pain
I have to smile and keep my kids from knowing that mom is in PAIN. some
mornings i just do not have the energy to go to work or even get up and
fix breakfast. But god bless the days when there is no pain or bloody stool.
sometimes i even forget that I have UC. I hope to speak with others and
share our experiences (hospital, friends, family, supermarket accidents,
etc.)
Name:Carolyn Katz
Email: Carolyn_Katz@bigfoot.com
IBD: CD, UC (who knows?)
More Info:I've been very frustrated
with my disease because the diagnosis is unclear. I was told in 1989 that
I had UC, in 1990 that I had Crohn's, but in the last year have been told
UC by one doctor, then Crohn's by another. I was all set to have J-pouch
surgery and be done with the disease when I was told I have Crohn's.They
said that surgery is not curative, and I am not a candidate for the J-pouch,
since I need every inch of my small intestine. I'm tired of being sick,
especially since I have 2 little girls who need me to take care of them
(and they are such cuties too - Shaz)
Name: Marisa De Marco
Email: wildfire@alphalink.com.au
IBD: CD
More Info:I was diagnosed with
CD when I was 18 years old. I battled for 4 years on medication (Prednisolone/Salazaphirin)
only to find that my body rejected this treatment. At the time, it was
the only medication suitable for my condition, and it caused "blockages"
which almost led to an Ileostomy. Fortunately with time, I adapted a macrobiotic
food lifestyle but occassionally got quite ill from time to time. For the
past two months, I have tried something new, as I wanted to get as far
away as possible from the recommended medication as I am wary of the long
term side effects. During the past two months, I have trialed a new "Fruit
& Vegetable" supplement known as "Juice Plus". This product was introduced
to me by sufferers of Chronic Fatigue. Somehow, this product has
made a tremendous difference. My bowel movements are back to normal on
a daily basis and I feel full of energy and get a sound nights sleep. If
anyone would like information, I have lots of literature on the product,
and I hope that it could help others as it as helped me.
Name: Craig Richardson
Email: icaurora@camtech.net.au
ICQ Contact Number: 15313976
Country: Australia
IBD: CD
More Info: I have had CD since
at least age 3. First minor op for CD at 4 years. Can be contacted via
E-mail or ICQ for general chat not necessarily re CD.
Name: Danny
Email: blueskys@nb.net
More Info: Feeling kind of lonely
these days!
Name: Angela Schwanenberger
Email: ATA-189@WEBTV.NET
IBD: Crohn's for 3 years
Additional Info: have had crohn's
for 3 years now.been in the hospital twice.both times with blockage of
the small intestines.doing better. like to meet new people. like knowing
i'm not alone.
