Hey RNJ, I had my 2nd and 3rd surgeries at the CC main campus. My takedown was in November, so 5 months ago. I live in a regional town -- 100K people. In Oct 2016, I had to have an emergent subtotal colectomy when a major flare couldn't be controlled no matter what they threw at me. After 5 blood infusions and still bleeding with 25 bms a day, the medical team said the time had come when the discussion was no longer about saving my colon. That surgeon saved my life and wanted to do the j-pouch, but he hadn't done very many. I knew I had one shot at this and I'm not a young guy. So I did my research and settled on CC. Picking a surgeon wasn't easy, no one really can help you with that, but with CC you have confidence in knowing that any surgeon there was going to be more experienced than a surgeon back home. My experience was very good. My recovery and transition to a well functioning pouch has been a more difficult road (for me) than I had imagined. But it could also be my age (63 in June). I wish you well. Don't hesitate to ask any other questions about CC, staying there or how to cope with long distance logistics.

Thanks for the response. I am 67. If you feel comfortable sharing the name of the doctor who did your surgery I would appreciate it. Of course, I have only heard good things about CC. But, it is almost 600 miles from where I live. So, I am a little concerned about the trip home - either being driven or flying. What complications have you had after the surgery (if you are comfortable telling me)? Please feel free to share about staying there, how to cope with long distance logistics and anything else I need to know. Thank you again.

Hi RNJ,

Sure, I’d be glad to share information with you. I had narrowed down my hospital selection to the Cleveland Clinic, Johns Hopkins and Mayo Clinic. I picked Cleveland since so many j-pouch surgeries have been performed there, especially the CC in Cleveland. Then came the surgeon selection. I’m sure that you’ve reviewed the doctor bios, read their specialties and where they went to school. I did this for weeks on end, but I kept coming back to Dr. Tracy Hull. She’s been a staff surgeon there since 1993, so has trained with the best of them. She is also section chief of IBD within the department. I reviewed her videos and saw her ratings from patients. What is interesting is that she won’t automatically take your case -- and that may be the way it is with all CC surgeons. She accepted me only after receiving my medical records and reviewing what type of surgery I was requesting. She is a wonderful doctor. Many of the nurses told me (after my 2^nd surgery) that she has great respect on campus. In fact, here’s a quick story that amused me. After my 2^nd surgery, she was due to see me the day after. I had written a list of questions since I know her time with me would probably be quick. A nurse stuck her head in the door and said almost breathlessly to the nurse assisting me, “Dr. Hull is on the floor! Ten minutes!!” Just before Dr. Hull came into my room, four nurses (yes four) entered in a single file and gathered at the foot of my bed, not saying a word. Dr. Hull strolled in, smiled hello, saw my legal pad with questions and immediately picked it up. No one said a word. Dr. Hull began writing responses to each of my questions in total silence. Again, no one said a peep for five minutes. Once done, Dr. Hull addressed me and politely said she would answer some of my questions in detail later. After she examined me and issued orders to the nurses, she left. I asked a nurse what that was all about and she said  everyone absolutely respects Dr. Hull and wants to be in her presence. To me, it was surreal in that moment but in hindsight, it was reaffirming that I had made the right surgeon selection.

RNJ, you say you live 600 miles from Cleveland. I’m 530 miles from Cleveland, so an 8 – 8.5 hour drive. That distance also concerned my wife and me but it worked out fine. If you can afford it, stay on the campus at the Holiday Inn. There's also a Hilton Double Tree-Tudor Arms within walking distance. They offer a patient discount and you might be able to negotiate free parking, otherwise it’s $20 a night (I stayed there for my initial meeting with Dr. Hull).

My wife and I opted to stay about 20-25 minutes away at the Marriott Residence Inn in Beachwood, OH. The rooms there have a full kitchen and they offer a decent discount for CC patients. I think we paid about $145 a night and parking is free. There are also grocery stores, restaurants and a CVS really close by. It’s also quiet and comfortable for your spouse or family members, and there is free breakfast downstairs, coffee, dessert, etc.

When the time came for my surgery, we drove the 8 hours straight through. When we returned home, we broke the journey up and drove only four hours or so per day. That worked perfectly for me for both surgeries. You’ll need to stop. Before we left, I mapped it out. We stayed in hotels off the interstate and did fine.

You asked about complications from the surgeries. I had the 3-step process. My first surgery—the subtotal colectomy—was emergent. I was anemic and malnourished, also full of steroids, so the medical team had to start the 3-step. My recovery from that first surgery was difficult since I was so weak. I also experienced proctitis which was annoying as heck because I had bloody mucus discharge, sometimes several times a day from my rectum.

The end ileostomy was a challenge at first until I learned how to manage it and what appliance was best for my body and situation. It took months of trying different combinations to get to the ideal situation.  I had skin issues, a few nighttime blowouts, a few leaks at work and therefore some anxiety. You always have to carry your medical stuff with you everywhere, including a change of clothes (at least underwear).  I highly recommend using online forums like “Inspire.com” for ostomates and “Healingwell.com. You will learn so much and can pose questions, similar to what j-pouch.org does for j-pouchers.

I had my end ileo for 10 months before the second surgery—which is the creation of the j-pouch and proctocolectomy with loop ileo. The loop ileo is more challenging as you've probably read, but having had experience with the end ileo, I became confident and adept with taking care of myself.

Leading up to the 2^nd surgery, I was determined to be as healthy as possible. I ate, gained weight and went back to the gym in April, with the surgery in August. Those four months of slowly gaining strength and weight were ideal for me. I practically breezed through the second surgery without any complications. The only real issue—and just about everyone deals with this—is the constant mucus discharge from your rear. In my case, there was no pain or blood like I had with the proctitis, it’s just that there is no way to control slimy mucus. Take a step off a curb and I could easily feel a maddening discharge of wetness. Therefore I had to wear a pad in my underwear for months, both day and night.

I couldn’t wait for my takedown surgery. I had read about complications, including the dreaded butt burn and the fact that the adaptation phase could be anywhere from weeks to months to a year. I was prepared though. I read all I could. I bought toilet seat bidets and installed them before my surgery. I installed a new shower head with the spray hose attachment. My wife and I bought pads, baby wipes, ILEX paste and Calmoseptine. I felt ready.

The third and final surgery went really well. I was so happy the day after when I pooped for the first time in a year. I thought “I’ve got this, I’m already a success.”  Then, reality struck when I started eating solid food again. The butt burn was so bad I couldn’t believe it. For weeks, I was in agony and the only thing that worked for me was a pain pill and a sitz bath. That’s not the case for everyone as I’m sure you’ve read. You'll also need to hold in the stool as long as possible to help stretch and enlarge the pouch. That added to my discomfort and I wished so badly that I had more than six weeks leave before going back to work.

Right now, I’m five months out and still wish that I was farther along in my recovery. Still experiencing butt burn (not nearly as bad) and trying to reduce the number of BMs by thickening the stool with diet, Benefiber/Metamucil and Imodium/Lomotil. Every day is another day for testing my determination to succeed. I have no regrets about the surgeries, but I can’t wait for the day when I’m free of all thought about whether today will be a good day. Just be prepared mentally that this can be a long road to recovery.

If I've learned any words of wisdom that I can share, it is this: everyone’s journey is different and you should never compare yourself, or your symptoms, or your recovery period, to someone else’s experience. Just have faith that your body won’t let you down and keep looking forward week-to-week at first, and then month-to-month. 

I had my surgery at vandy on 4/17/18. Still in due to postop ileus and had ng tube. Its a rough operation haha but my surgeon was Dr. Timothy Geiger. Been at vandy since 2010. He says he does about 6 pouches a year. Straight out of residency did 12 pouches per year for a while. Hes the cheif of gen surg at vandy and very well respected. I have a lot of healing to do but he was very happy with the operation and is always willing to sit with you and answer any questions or concerns you might have. I work with general surgeons every day and hes a good one in my book