Ileostomy #1 (Old bag appliance)
Ileostomy #2 (Open, No appliance)
Ileostomy #3 (Open, No appliance, Closeup)
Ileostomy #4 (New clip appliance)
Ileostomy #5 (New clip appliance, Closeup)
Ileostomy #6 (New clip appliance, Closeup)
Ileostomy #7 (New bag appliance)
Ileostomy #8 (New bag appliance, Closeup)
Ileostomy #9 (New bag attached)
PICC Line #1
PICC Line #2 (Closeup)
Date : November 4, 2000, 11:30am
Sigmoidoscopy at Dr. Fanelli's office. Results not good. Very inflamed. Sets up appointment to see surgeon, Dr. Daniel Dempsey at Temple University Hospital on November 9.
Date : November 9, 2000, 12:30pm
Appointment with Dr. Daniel Dempsey at Temple University Hospital on Broad Street, Philadelphia. Dr. Dempsey agrees surgery is an option. Although he's one of the nation's best surgeons, he refers me to Dr. Rolando Rolandelli, whom he says he would go to if he were to have my type of surgery. We wait about an hour for Dr. Rolandelli to finish a procedure. Dad and I eat lunch in the hospital cafeteria. We meet Dr. Rolandelli. He does an unprepped Sigmoidoscopy and takes a biopsy. My chart lists Ulcerative Colitis as my diagnosis, but I have signs of Crohns Disease (which symptoms of perianal skin tags and ascesses seemed to suggest about 3 years ago) so he hopes the biopsy and an xray will determine a final diagnosis, since surgery depends on what I have. He reviews CT Scan results from a few months ago and determines I need a "lower bowel followthrough". This will be scheduled by Dr. Fanelli's office at Lower Bucks Hospital.
Date : November 28, 2000, 7:30am
Appointment for a "small bowel followthrough" (barium x-ray) at Lower Bucks Hospital. Performed by Dr. Brakin. Results will be faxed to Dr. Fanelli and Dr. Rolandelli.
Date : December 10, 2000
Emailed Dr. Rolandelli to see if he had reviewed the results of the "small bowel followthrough" and the biopsys. Waiting for a reply...
Date : December 11, 2000
Dr. Rolandelli emails a reply back stating that the tests showed that I have Ulcerative Colitis, and not Crohns, and that he wants to perform a "Colectomy and a pouch". I called his office to setup an appointment to see him personally and
discuss details of the operation. Appointment set for December 20 at 11:15am, Temple University Hospital.
Date : December 20, 2000, 11:15am
Will have an "Ileal-Pouch Anal Anastomosis with Temporary Ileostomy" procedure done by Dr. Rolandelli. Surgery set up for January 15, 2001, 10am. Must have pre-admission testing done at Lower Bucks Hospital at least 1 week prior to surgery and an interview with the anathesiologist. Had lunch at the Temple University caffeteria and completed the interview with anethesiology while there. Got prescriptions for prep materials I must fill them 2 days in advance and take the day before surgery.
Date : December 21, 2000
Surgery moved up to December 28, 2000. Went to Lower Bucks Hospital and had bloodwork and a chest x-ray done as part of the pre-admission testing.
Date : December 22, 2000
Went back to Lower Bucks and had EKG done for pre-admission testing. All pre-admission tests now done, results faxed to Dr. Rolandelli at Temple.
Date : December 26, 2000
Filled scripts for prep materials. Start clear liquid diet.
Date : December 27, 2000
Prep for surgery. Continue clear liquid diet.
Date : December 28, 2000, 8:00am
"Ileal-Pouch Anal Anastomosis with Temporary Ileostomy" Surgery. Problem with Insurance, apparently no one at Temple bothered to verify everything during the past week since I was rescheduled for surgery on the 21st. This delays me actually starting pre-surgery prep for 4 hours and 30 minutes. Surgery starts around 10am and lasts until about 11pm.Long surgery. Most take 6-8 hours.
Date : December 29, 2000 - January 5, 2001
Recovery at Temple Hospital.
Date : January 5, 2001
2nd Surgery due to complications. 1 foot of small intestine removed since it had apparently died.
Date : January 6 - January 13, 2001
Recovery at Temple Hospital sontinues.
Date : January 13, 2001, 11:00am
Discharged from Temple Hospital. Recovery at Lorraine's begins.
Date : January 14, 2001, 9:00am
Rushed to St. Mary Medical Center to be stabilized after infection flareup, then moved back to Temple Hospital for treatment of infection.
Date : January 14 - January 18, 2001
Recovery at Temple Hospital...again.
Date : January 18, 2001, 5:00pm
Discharged from Temple Hospital...again. Recovery at Lorraine's begins...again.
Date : January 19, 2001
Trip back to Temple Hospital to check a new "bump" in abdomen, turns out it's just a collection of bodily fluids that will drain itself, no need to be readmitted (Thank God).
Date : January 24, 2001, 1:00pm
Appointment with Dr. Rolandelli at Temple. Everything looks "super" and I'm healing nicely. Pain from earlier infection gone and I finished my last anitbiotic infusion today. Continue on TPN for a while yet (possibly 3 months). Discussed timeline of next "final" surgery and it looks like I'm on track for somewhere around March 5-8, 2001. Will have a permanent Ileostomy (unless a cure for Crohns is found then I can be reattached and an internal "pouch" created from existing intestines in the future).
Date : January 31, 2001, 215pm
Appointment with Dr. Rolandelli at Temple.
Date : February 1, 2001
Move back home for good.
Date : February 8, 2001
Appointment with Dr. Rolandelli at Temple then attend an Ostomy Support Meeting at 7:00pm in the Auditorium. The group is called GutReactions and they have a website at GutReactions.com. I met a great group of people and the meeting was attended by my surgeon (and most other member's surgeon) Dr. Rolandelli. It felt good being able to discuss my condition with other Ostomates in a frank and uncensored way. I plan to attend each meeting, they are held on the second Thursday each month.
Date : February 16, 2001, 10:40am
Appointment with Dr. Michael Mann, my Hemotologist. My blood levels were the best they've been in years (thanks to not having a bleeding intestine!) and I won't have to see my Hemotologist again for another 6 months, and then hopefully never again.
Date : February 21, 2001, 2:00pm
Appointment with Dr. Rolandelli to discuss details of next surgery. Suregery scheduled for March 12, 2001, 915am.
Date : March 1, 2001
Last day of Prednisone.
Date : March 5, 2001
Woke up at 5:30am and could not stand up due to severe pain in left side abdomen. Mom & dad took me to Temple Hospital Emergency Room. Had x-rays, bloodwork and a CT Scan done. All tests were "clear" so the staff called Dr. Rolandelli who was on vacation and he put me back on 7.5mg of Prednisone until Friday (March 9) then reduce to 2.5mg until surgery date.
Date : March 12, 2001, 9:15am
Permanent Ileostomy & Anus Removal Surgery.
Date : March 13, 2001
Recovery at Temple Hospital.
Date : March 15, 2001
Passing gas, a good sign. Nasal drain tube, "Foley" tube removed and "JP drain" removed. Starting clear liquid diet.
Date : March 16, 2001
Unrestricted diet begins. Things moving nicely.
Date : March 18, 2001, 1:00pm
Discharged from Temple Hospital. Recovery at home begins.
Date : March 19, 2001
Very painful day. Staples make standing or getting comfortable very difficult. Not sleeping well. Healing sucks.
Date : April ??, 2001
Appointment with Interventional Radiology for a "tube check", the results were disappointing. This fistula is not healed, so it stays in for at least another 2 weeks.
Date : May ??, 2001
Appointment with Interventional Radiology for a "tube check", the results were disappointing. This fistula is still not healed, so it stays in for at least another 3 weeks.
Date : June 6, 2001
Appointment with Interventional Radiology for a "tube check", the results were encouraging. After the tube check I saw Dr. Rolandelli and was given the best news I've ever had. The fistula is not totally healed but given has healed substantially, and they can take a long time to heal, the JP drain tube it being removed, my TPN is ended so my PICC line is being removed and as of June 18, 2001, I am released from his care and am permitted to return to work on "limited duty" (4-6 hours for at least 1 month). Finally, I can see the end of this chapter coming. It feels real. Hopefully, this will be it for hospitals for a very long time. I am allowed to shower also.
Date : June 8, 2001
Went to the pool for the first time. It felt so good, so free.
Date : June 10, 2001
A test of endurance...I go to New York City with Michael and Dan to see Madame Tussaud's wax museum and then The Rocky Horror Show on Broadway at the Circle In The Square theater, and afterwards, eat dinner at Churrascaria Plataforma, a Brazillian steakhouse. If I survive this, I know I'm ready for work!
Date : October 24, 2001
Went to see Dr. Rolandelli & Robin Bankhead at Temple, we discussed my stoma difficulties and abnormalities, and came to decide to try to fix the stoma's odd angle by a small procedure that would involve cutting around 1/2 the circumference of the stoma to try to free it up so it can be maneuvered into an upright position. If it CAN, I may be able to go home the same day, if not then I may need to stay in the hospital "up to a week" to see "if it takes". If it can't be fixed using minor surgery then the only recourse will be another full operation to move the stoma to the other side of my abdomen. There is not enough intestine left on the left side to pull the stoma through further, due to the fistula anchoring it in place. If the intestine is moved the the opposite side, there will be enough to work with and create a 1"-2" stoma. The surgery is scheduled for Monday, November 5...but I don't have a good feeling about this...
Date : November 1, 2001
Called Denise McGuinn to ask for a private room if I'm admitted for more than a day. I left a message on her machine.
Date : November 2, 2001
Temple called to confirm surgery schedule for November 5, at 10:00am. I must arrive at admissions by 8:00am.
Date : November 4, 2001
Prepare for hospital stay...clear liquids only, pack bag, etc.
Date : November 5, 2001
Surgery at 10:00am. Arrived at Temple at 8:00am. Out of surgery by 10:45am...good sign. Surgery went well according to Dr. Rolandelli. I had a clear liquid lunch in recovery room. Brought to private room 535 (thanks Denise!) and was cared for by nurses Michelle, Eileen and Marilyn. For dinner I had a full meal, NOT clear liquids! Another good sign. Admitted overnight, and cared for by Thomas, the lead night nurse.
Date : November 6, 2001
Released! Got home around 4:00pm. Even though surgery "went well" I am still skeptical...still have a feeling of dread. I won't be able to see the wound until I change appliances.
Date : November 7, 2001
Changed appliance. I'm no doctor, but the wound looks very nasty. I clead it and used an Eakin's Seal to seal gap between wound an appliance to prevent leakage.
Date : November 8, 2001
Gut Reactions meeting at Temple at 7:00pm. Dr. Rolandelli's birthday.
Date : November 9, 2001
Katie & Danny McGuinn's wedding. Didn't go to the ceremony but did go to the reception. Was very tired when I got home.
Date : November ?, 2001
Called Dr. Rolandelli about nasty looking stoma site, set up appointment to see him, Diane Wagner and Robin Bankhead at Temple.
Date : November ?, 2001
Saw Dr. Rolandelli at Temple, discussed failure of previous surgery. The stoma healed in the way it had before the surgery, so the full operation will have to happen anyway. (I knew it...I felt it...) Surgery scheduled for January 11, 2002. Not very happy at all. I'm not sure I have it in me to do this all over again. One year and I'm back where I started.
Date : January 8, 2002
Pre-admission testing at Temple. Diane and I discussed new stoma location. There's a slight chance that the stoma may not have to be moved, Dr. Rolandelli will decide that when I'm opened up. If there's enough intestine to work with, the stoma will stay where it is and up to 2" will be pulled through and reanchored, if there's nothing left to work with then the site will be moved and the surgery will be longer. I will have to be admitted for "at least 5 days", but since I'm not on any steroids or medication then the recovery time may be shorter, but I will need at least 3 months to recover. (I am so depressed)
Date : January 11, 2002
Surgery #5.