I received an email from my ostomy surgeon a few weeks ago announcing a reunion of sorts.
Ok, so in 2000, when my Crohn's Disease was at its worst, and my colon was all inflamed and at a point where it was doing me more harm than good, I met with a great surgeon, Dr. Rolando Rolandelli, and throughout 2001 I had 5 surgeries to remove my colon, rectum and anus and put in place a permanent ileostomy, which, being permanent and all, means I still live with it to this day.
Read my Ostomy Diary from this time period HERE.
(Dr. Rolandelli has written a clinical nutrition textbook with my former Temple University nutritional nurse, Robin Bankhead, check it out on Amazon.com HERE)
During 2001, while adjusting to my new way of doing things (bodily functions, appliance changing, etc) I was invited into a support group at Temple University Hospital called Gut Reactions (get it? gut = intestinal problems, and reactions = dealing with a new digestive system) which consisted of many other patients who have had this, or other similar, surgeries.
(There used to be a Group website at www.gutreactions.org, but it no longer exists and it was not affiliated with the many other support groups by that name that now come up with a Google search)
I really liked this group of people and looked forward to the meetings once a month.
In 2002 the meetings started to taper off and by 2003 the Group was disbanded, partly because people moved on with thier lives, but mostly because our surgeon, and co-founder of the Group, left Pennsylvania to accept a promotion at Morristown Memorial Hospital in northern New Jersey (he's now "Chairman of Surgery, Western Regional Atlantic Health System, Morristown Memorial Hospital, Morristown, NJ") and over the years I have lost touch with almost all the former members (emails went unanswered, etc).
I still kept in occasional touch with Dr. Rolandelli, and he apparently started another support group up at his new hospital but he also must have missed our Group of people, and so he decided to hold a get-together of the two Groups at his home/farm in Northern New Jersey.
The "reunion" is this Saturday, August 5, and while I am very much looking forward to seeing anyone he has been able to contact again from our old Group, and meeting his current members, AND seeing him again, I am torn in my feelings because after all this time I am not much better off than when last we all met.
I'm sure most other members have gotten better and moved on with thier lives (hence the unreturned emails) and I am a little embarrassed that I am still suffering with the after-effects of the surgeries (I did have 5 of them, after all), like adhesion pains and chronic kidney stones (a direct result of my type of surgery/shortened bowel). I have also regained all my weight. I weigh in at a whopping 260 lbs. This appears to be my "normal" weight because I can't seem to lose any and I never get any heavier (though the medications I am on for my kidney stones, a diuretic, cause bloating).
So I have mixed feelings about this upcoming event, as I do with most reunions, family get-togethers, parties, etc, since most of the time people are asking how I'm doing, and I am forced into retelling my recent woes over and over and over again, I hardly get time to enjoy these events, and I usually wind up depressing everyone I come into contact with. Sure, I could just say "I'm fine", and I usually do, but since most people know me, and my situation, I usually get prompted to go into more detail since they've usually "heard" something from family or friends.
So while it's good to see familiar faces, my time is wasted rehashing painful stories of my useless life.
Plus, the 90 minute+ drive each way is a little daunting as well, though my folks will be doing the driving (they were also frequent visitors to the Group so they know everyone).
We'll see how well I can (or can't) handle this little excursion.
RobMac
