Re-introductions

[Guest guest]

I have been away from the group for awhile and am seeing so

many new faces I thought I would reintroduce myself. I am , Suzanne’s

Mom. Suzanne was dx first with UC, then 3 months later PSC, at the age of 14.

She had a relatively quiet first year, year and a half. Her UC then began to

flare and did not really end until we removed her colon. She got so sick she

could not go to school and spent most of her junior and senior years of high

school on home bound instruction. She went through many ups and downs and

probably every medication there was to try with the exception of Cyclosporine;

we decided that we did not want to go that route. In 2007 Suzanne had her colon

removed and a jpouch made in one step. We were very fortunate that a new

surgeon came to Children’s Hospital (Dr. Burns) who did this in one step.

Since then she has had only minor difficulties with IBD. A few instances of

pouchitis, however when she suspects it she starts taking Flagyl and that has

always taken care of it. Right after the surgery she had two minor blockages in

her intestines that required short hospital stays. By far her health has been

much better since the surgery.

College – Suzanne started college on time, and was

hospitalized in her first month, not a great start. However, her first year was

okay. She struggled, mostly I think because she did not know how to study and

was not used to so much school work because of her last few years of high

school. Her second year (this year), however were quite different. She really

struggled and decided mid semester second semester to quit school. She often

complained of being too tired to go to school and having difficulties focusing

on studying. Her major was nursing and it was a rigorous curriculum. My “Mom

instinct” kept telling me that she was getting sick, although we did not

have any “proof”. During this time Suzanne was not very compliant

with having her blood work done. After her surgery (jpouch) she really began to

“resist” going to the doctor. I think she just “had enough”,

and since she was feeling okay she didn’t want to be poked and prodded

anymore. She was always compliant with her medication though (for the most

part). As it turns out, she was getting sick. We had blood work done that

showed elevated enzymes and billirubin levels. This lead to an MRCP, which lead

to an ERCP (I posted about this recently). She had a stent placed in her common

bile duct and in two weeks will have it removed. I am not sure what all will be

next. We see the hepatologist in four weeks.

Her hepatologist is Dr. Shneider at Children’s

Hospital of Pgh, and the ERCP was done by Dr. Slivka of UPMC. I believe that

Dr. Slivka presented at the Pgh PSC conference. She doesn’t want to leave

Children’s and I am trying to follow her lead since she is soon to be 20.

They said that she can stay until she’s 25, but as we are beginning to

see, some of the procedures are requiring her to go to an “adult”

doctor (i.e. Dr. Slivka).

I have found great information and comfort in this group –

I want to welcome all of the new members and say hello to all of the members

who I knew from years ago. This group provided me great support as we were

going through Suzanne’s surgery and jpouch. I hope that someday I can

contribute to the group as much as I have gotten from the group.

LINDA (Mom of Suzanne, 19, UC / PSC 2004, j-pouch 2007)