Upcoming Surgery

Did you decide to do it at Mount Sinai Medical Center? With Drs. Bauer/Gorfine?

Hi CTBarrister,

Yes, I am getting it done by Dr Bauer and Dr Gorfine at Mt. Sinai. I met a bunch of surgeons and I knew I had to get it done by Dr. Bauer after talking to him even though it is costing me an arm and a leg..literally! Thanks for the recommendation earlier.

You are going to be in very good hands both with those two surgeons and the Hospital. Your care will be excellent and should you encounter any complications such as are described by bootstrap in her recent threads, they will be ready to handle them. There is no substitute for experience and those two were around when I had my surgeries back in 1992, Gorfine assisting on both and Bauer handling some of my aftercare. They have seen it all and nothing will take them by surprise.

My recollection is that they make you bank your blood for tranfusion in 3 installments prior to the surgery. Have you started doing this yet?

I am glad to hear this, it makes me a little less nervous about the surgery. No, they haven't asked me to bank blood. In fact, the thing that surprised me is that I haven't been asked to do any preparation except to not eat or drink anything after midnight on the day of the surgery. No pre-op exams/tests or anything. Is that normal?

I suggest you call the surgeon's office to find out about pre-op tests. It would be pretty unusual to undertake the surgery without some blood tests.

Getting yourself as well nourished as you can is a good idea.

My original diagnosis was made at Mount Sinai in 1980 or so - I remember it well. In fact, Mount Sinai physician Burrill B. Crohn is who Crohn's Disease is named for.

Hi UCWarrior,

I just had my first surgery this past November, so I can really relate to where you're at right now. I only had to wait about three weeks between when I decided to have surgery and when it was scheduled, but the anticipation drove me crazy!

I wouldn't worry too much about supplies ahead of time. The types of products that you'll prefer to use can vary greatly depending on how your stoma turns out (for example, if it sticks out really well, you will use different barriers than if it's kind of an innie). My experience was that the stoma nurse at the hospital was extremely helpful in getting me setup with some starter products and then also with the home nurse, who helped me with ordering supplies and talked to me about various products. There are lots of different things that you can try (and companies are pretty willing to give out free samples of stuff), but it's sort of a trial and error process that you need to do once you actually have your stoma.

I think maybe the biggest thing that was helpful for me to know ahead of time was that it is okay and pretty normal for your emotions to kind of go crazy prior to surgery. For me, it was a hard adjustment to go from trying to do everything to avoid surgery to accepting that surgery was the best and only option. I felt a weird sense of sadness at the thought of losing something that had been a part of me for my entire life. I think I just had a general fear of the unknown and anxiety about the fact that this, unlike every other thing that I tried, needed to work. I had a hard time having faith in a good outcome since every other treatment that I tried was a disappointment.

All that said, I have absolutely no regrets, other than I just wish that this whole j-pouch process had started earlier and would have been able to spare me a lot of suffering. My life is so much better and I'm sure it will be the case for you also. Feel free to ask me any specific questions that you have

Hi

I had a one step with Bauer and Gorfine. They have TONS of experience with Jpouch's.

Mount Sinai nurses are overworked and often downright nasty with these attitudes. Also Dr. Bauer has a bad bedside manner. Big ego! Gorfine is much nicer! Just telling you this so you do not have any surprises and do not take it personally.

They take rounds 1-2 times a day. Often VERY early around 6am. Before bedtime make a list of any questions you have for Dr/residents. They will be very rushed so only expect a couple minutes with them.

Good luck! Recovery will be a challenge, but you will heal and be stronger than ever.

UC Warrior,

I had my surgery back in 1992 which was back in the days when Hospitals were frightened about infecting people with AIDS through blood transfusions. This is actually what killed tennis great Arthur Ashe. He went in for a heart surgery back in the late 1980s or early 1990s and was transfused with AIDS tainted blood. So, at the time I was ordered to bank blood for transfusion and I was also blood tested. But this order may have emanated from my lead surgeon, the late Dr. Irwin Gelernt, who was the mentor of both Bauer and Gorfine and the head honcho in this group of surgeons at that time.

As previously suggested I would be very proactive in your preparation as far as calling the office and making sure you know what exactly your instructions are.

Regarding the Mount Sinai nurses, all I can remember from my experience were the ostomy nurses who were SUPERSTARS!!!!!! It was amazing the difference between when they applied the ostomy bag and I did. At that time I wanted to have my own personal Mount Sinai ostomy nurse on a leash, LOL.

Good luck, you are only 2 weeks away now!

Hi Warrior,

I'm surprised you haven't had at least blood work done...if only for blood typing. In addition, you should be filling out some sort of anesthesia questionnaire or have an appointment with anesthesia.

As for preparing...I'm going to mention the two things that took me by surprise. I made my decision to have surgery. I thought about it long and hard before I made my decision and scheduled. I still doubted my decision at times. It's just a huge step into the unknown and it's natural to doubt yourself. Part of what led to that doubt was the fact that my colon started behaving. After a year of no remission, the two weeks before surgery my colon was relatively behaved. Granted, I had been on 40 megs of prednisone for a couple of months (plus had a max dose Remicade infusion) and Pred is no way to live...but it still made me wonder. Fortunately my colon would occasionally provide me with agonizing pain even then. But don't be surprised if your colon starts to behave. I had heard that before I made my surgery decision and low and behold it was true for me to. I still don't regret surgery (my 1 of 3 was in August 2012).

I was surprised by how tired I was and how much I slept. I was out of it for the rest of the night after the surgery. I napped alot the next day. I even napped alot when I went home. Just be prepared for that.

Be careful about what you are fed. You probably won't be able to have anything for a day or so after surgery, until you get stuff in your ostomy bag. Then you will be allowed liquids. If those pass well, you will likely be moved onto a Soft GI diet. You can google it. Think liquids, soups, white carbs, low fiber. Some hospitals are great with their food distributions/communications while others are not. For example, you probably should not be eating broccoli while in the hospital. Listen to what your doctors say and if your tray doesn't agree, make sure you don't eat it and get things you can have.

And finally, some suggestions of things to take to the hospital. Tablets (ipad, kindle, etc.) are great if you have one. Reading material, baby wipes (sometimes you can't shower), face wipes, pants or shorts, underwear, robe, lip balm, music player and headphones, phone numbers if you need them, cell phone if wanted, chargers, notepad/pen for questions and notes, socks, walk around shoes or slippers (I hate the hospital footies), brush, toothbrush, toothpaste, deodorant, any other personal care items you can think of. Face mask or ear phones if you are a light sleeper In all honesty, I was so drugged up I think an elephant could have fallen down and I would not have noticed.

Also, you might want to find out if you will have a roommate. It's nice to not be surprised in that regard.

Thanks for all the input, everyone!!

I am going to call the surgeon's office to make sure that I was given the correct information about pre-op tests and preparations. It just seems strange that the only preparation that I need to do for this surgery is stop eating and drinking at midnight on the day of the operation!!

Jax17 - My emotions are all over the place too. But, for some strange reason I am excited about losing my colon. I have no love left for it after what it has made me go through for the past two years!!!

Jpouch8888 - Thanks for the tip. I will make a list of my questions each night so that I can ask them when the doctors swing by.

CTBarrister - I wish I could afford my own personal Mt Sinai ostomy nurse and a re-incarnation of Dr Bauer that I could take with me wherever I go. Given how much we pay for this surgery, I think we should get the surgeons to stay at our place for at least a month!!

ActiveUC'er - My colon was playing tricks with me before I had scheduled the surgery. Since I have scheduled it, its been punishing me because it knows that it will be evicted soon. So, this has made me even more sure that the decision to get surgery is the right one. I will be on the lookout for what they feed me in the hospital. No way am I eating broccoli anytime soon. Also, thanks for the list of things to take with me. I would have never thought of a few of them!

I was definitely excited about my operation too! So strange to be excited about a major procedure, but it's giving you back your life.