Posted 10/1/2008 5:32 AM (GMT -6)
Thanks Sunshineonmyface~ and quincy,

No I didn’t take notes but I had several pamphlets to refer to. Medical trials are not the only studies I’m involved in. A few years ago the natural gas company installed separate gas meters on my furnace and hot water heater for a study. They transmit my gas usage for each appliance over my phone line every night. The original study ended recently and they called me and asked if I wanted to participate in another study for a new low flow showerhead. They are interested in whether it will reduce my gas consumption. They only asked people that participated in the previous study. They installed the showerheads a few weeks ago. They are paying me a small credit on my gas bill for participating in these studies.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 

Posted 10/1/2008 5:47 AM (GMT -6)

Paul thanks for the heads up. I have my preadmission appointment in about 6 weeks, the day before my op. It will also be at a teaching hospital, so i imagine the happenings will be similar.

I might take notes!

I have been told the prep is free fluid, no prep yuckies!


Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept

Posted 10/1/2008 7:04 AM (GMT -6)
Thank you Paul for letting us know about your pre appointment. Please keep us updated because I know that many of here would like to know since we may be contemplating surgery ourselves. I can't wait to hear of your surgery and how you feel afterward.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 

Posted 10/1/2008 8:41 AM (GMT -6)
Thanks Peter and Sherry,

Peter, I’m surprised your preadmission appointment is the day before surgery. I was told they wanted it 3 weeks before in case anything unusual comes up and I need more tests. Also it gives me time to fill the prescription they gave me and stop any medications as needed. One reason I posted this information is so I could compare it to others experiances.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 

Posted 10/1/2008 8:48 AM (GMT -6)
It's not unusual to have preadmission for surgery done the day before, in fact I think it's more common. All my preadmission tests were done the day before my jpouch surgery, in a teaching hospital, and I stayed that day and night in the hospital although I understand much of that is out-patient now. I have never heard of preadmission tests done 3 weeks prior to surgery. Especially since they will want a more current chest xray and blood work closer to surgery?

Of course I had my surgery 7 years ago so things may have changed since then.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Posted 10/1/2008 9:35 AM (GMT -6)

Paul, it's great you had your pre-admission appointment. Bratcat's appointment was a week before her surgery. It was much quicker (although the wait wasn't). She had no tests done other than some bloodwork. Alot of questions though. The nurse explained everything (although the surgeon had discussed this in detail earlier). We didn't meet with an ostomy nurse until after surgery. And the surgeon waits until the day of surgery to mark his patients. The morning of the surgery he explained how he chooses the ostomy site. It was very similar to what you said. He has the patient sit and bend. He uses that and the fact that it has to be in the muscle to place it. Bratcat's is fairly high (she also does not have a very flat stomach). Because it is high, the surgeon told her to expect her output to be a bit more liquidy. Since she has nothing to compare it to, it hasn't been an issue. And depending on what she eats, it can change. Bratcat also had recently finished prednisone. They did give her prednisone before her surgery and a small taper back down after surgery. She did have to be at the hospital 2 hours before her 7:30 am surgery. It was not fun or easy getting up and being there that early.

Bratcat goes for her official pouchoscopy on October 20.


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Posted 10/1/2008 10:04 AM (GMT -6)
Thanks for sharing, Paul.

If I would have had surgery, my preadmission appt. would have been the day before surgery.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 2 Anucort
 

Posted 10/1/2008 10:24 AM (GMT -6)
Thanks for sharing, Paul. Be sure to drink plenty of water during & after the phosphosoda, for the sake of your kidneys & bladder. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 10/1/2008 11:31 AM (GMT -6)
just for more perspective, I had my pre-ops done about 4 weeks prior to my surgery date. At the Lahey Clinic, in Burlington, MA, they require the pre-ops done no more than 6 weeks prior to surgery. And all the stuff you went thru (aside from the sleep apnea study ) Paul, sounded a lot like my pre-op stuff- aren't the ostomy nurses the best?!?!? They really put me at ease. Of course I wound up cancelling my surgery, but.... I did like the pre-ops! Good luck!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 

Posted 10/1/2008 11:37 AM (GMT -6)
Thanks everyone. It’s amazing how different our preadmission appointments can be. I’m sure if I had it the day before I would have had to receive a lot of the information earlier.

Sue, I didn’t receive a chest x-ray. I remember the secretary mentioning an x-ray when I made the appointment but either they forgot or I will receive it the morning of the surgery, unless the one I had a few years ago is good enough.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 

Posted 10/1/2008 12:30 PM (GMT -6)
Paul,

No, you will need a current chest xray. They know this at the hospital.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Posted 10/1/2008 12:53 PM (GMT -6)
Paul, thanks so much for sharing and for the details. Please keep us updated on your progress, I wish you a speedy recovery!

Also, I prefer the fleet phosfo soda, it was the only one that did not make me hurl. But definitely drink plenty like Q says to help your kidneys.

Take care.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

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