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Ulcerative Colitis Personal Stories
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Cheryl's Story
Good day: I am a mom of a 19 yo daughter who was diagnosed with uclerative
colitis. My daughter started bleeding anally in March 2003 as a senior in
high school. Her primary care doc knew something was wrong, but did not
know what. The entire office saw something in her rectum, but were fairly
sure it was not hemroids because it/they were too large. We then went to
another doctor who treated her by banding the hemroids. He did this twice,
the last time 1 day before she left home for college on August 31, 2003. She
was in terrible pain and we were both lost souls wondering why is this
happening and what is wrong. I knew something was serious, and so did my
daughter. She thought she had cancer, luekima or another death sentence, but
she did not tell me her fears until months later. We tried hard to believe
all was okay and because both our lives had been extremely trying and poor
(though I worked 2 jobs and she worked part time on top of being a straight
A honor program student) we just knew our lives were going to continue to
be trying at best. She was very ill at college, thus I struggled to find
another doctor.
Finally I found one in Portland, Maine. He is fantastic and
gave us the diagnosis in November 2003 after a colonscopy, but he could not
prescribe nothing more than asacol. By the way, my daughter was abnormally
ill her entire life, unexplained rashes, constant colds and pnuemonia and
suffered minor allergies to strawberries, perfumed laundry soaps and as she
got into her teens medications, jewelry and more foods. She had two bouts
w/mono one as a freshman and one as a junior in high school. Doctors never
listened to me, always saying I was an over-worried mom and constantly said
her illnesses were viral. I myself have always gotten more colds than the
normal person and they last for wks and are severe. She was prescribed
asacol. For months she took this and it did nothing to help. Her bleeding
was heavy and constant, unforgiving diaherra w/puss, her belly hurt all the
time, she was weak, scared, confused, angry, yet continued to strive to be a
good student. In January 2004 I bought her a natural medicine called
molocure. The first week the meds worked. The bleeding finally stopped --
for 4 days, then it started all over again. We then tried the diet w/meds,
no dairy, no vegies, no fruit, no chocolate, no spices, olive oil etc. She
was now slowly starving as the college did not have food she could eat and
we struggled to pay for college, meds, our home, car ins etc. She lived off
white toast, cream of wheat, tea and plain chicken sandwiches which we had
to pay for even though we have already given money for her food through the
college. I finally contacted the college nutrionist; she was lost as to how
to help, what to feed her etc.. She tried hard and educated herself, but the
diet left so few choices my daughter was giving up and the nutrionist was
stumped.
She managed to make it through her first year at college fighting
the illness and constant other sickeness due to blood loss, colds that
wouldn't go away and emotional turmoil not telling anyone she was sick,
wondering what was so good about life which we both could see/feel nothing
positive. During all this I continued my plight in finding a doctor to help
as the meds, diet and natual stuff did nothing for her. Finally, I found
another Doctor right in Lewiston, Maine. He is absolutely sincere, open and
honest in what he can and cannot do with real hopes of helping her at least
get it under control. We tried anal steriod enamas and removed all raw
vegies and fruit. Still the bleeding continued, belly swelling, pain,
weakness, tired all the time and yes, still getting a new illness every
couple of weeks, ie nasty head cold, followed by a broncial infection,
followed by severe sinus infection, followed by severe allergic reaction to
sulfa, new meds followed by more allergic reactions, followed by bladder and
kidney problems. She may now have IC along with UC. IC is a condition
known to UC patients (mostly women) in which bladder infections are chronic.
Only time will tell for this latest illness.
This new doctor finally has
put her on prendizone, calcium tabs, vitamins, tums and continue with the
steriod enamas. It is now September 2004 and 3 weeks of prendizone. The
bleeding has finally stopped, but her stomach still gives pain, bathroom
breaks are still 10 a day or more, she battles tiredness, weakness and now
the facial swelling from the prendizone. She still works part time and is
attending a different college which she commutes to. I know and so does my
daughter that stress does play a role, however stress is not the cause. I
have been told, read and believe that UC starts with an immune problem which
is worsened by stress, possibly some foods and unpasturized liquids and in
the case of my daughter her paternal aunt has the disease, though hers is a
very mild form. I am interested in knowing if anyone else feels they had
more than average sicknesses as children or young adults and if they too
feel, peditricians ignored warning signs of a bigger problem. I firmly
believe peditricians should at least note a child's numerous illnesses and
stop looking at moms like we just need to worry or we over react. I know
when my ex brought his child to doctor(s), he was treated much differently
ie doctors listened and did not give him the bs excuses the gave me every
time even when her feet and all other joints were 10x their normal size
after eating a frozen chicken pot pie. They said it was viral and never even
sent us to an allergists. Angry, yes I am.
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