Bag Lady

Today, I went down to Kennestone Hospital to meet with a stoma nurse to talk about the ileostomy and to ask any questions that I might have. I was sent to the wound treatment center, which is part of the hospital since they provide help to both inpatients and outpatients. I felt very awkward in the waiting room since I was by far the youngest person there...probably by 40 years or more. It seemed like there were a lot of people there for physical therapy of some sort... lots of canes, limps, and probably war stories (literally?).

When I finally got to speak with the nurse (aka, the "Bag Lady"), she was very encouraged that I had taken the time to come speak with them so early before surgery. She said that a lot of people who end up with an ostomy only have a few days to weeks to prepare, so I am well ahead of the game. 

Honestly, I've done a lot of research about the ileostomy and had a pretty good idea of what to expect as far as diet and what it is generally like to have one. Obviously, there is no way to know exactly what it will be like until it actually happens. However, there were a couple of things that I could not have known just by researching on the internet.

First, the bags themselves are much lighter and thinner than I realized. In pictures, they seem like they are made of fairly thick rubber or plastic, however they are much thinner; think very strong sandwich bag. The three bags she gave me were all different models. One was a two piece bag with a "tupperware"-like seal and the other two were one piece bags. All of the bags are drainable, which means that I can simply drain the waste into the toilet instead of having to change the bag every time it fills. Two of the "wafers" (where the bag attaches to the skin) were flat and one was concave. All of these options make using the bags easier for people with ostomies.

The second thing that surprised me was the sheer amount of supplies and options available for all the ostomy supplies. I was given 3 separate catalogs that each have hundreds of different options for the ostomy bags: shape, size, drainable, not-drainable, two piece, one piece, filters for gas, clear or opaque, concave or flat wafers, and many more options. After thinking about it, it makes sense that there are so many options. Many people have permanent ostomies and have to adapt their bags to their specific body type. Why not give them as many options as possible to limit complications from the bags.

Overall, the visit to see the Bag Lady was worth it. It definitely made me feel slightly more comfortable about having the ostomy bag for several months in between surgeries.

Meeting the Surgeon

Yesterday, I went to Marietta to meet my surgeon, Dr. L. He was very personable and easy to talk to. I appreciated that he let me and my mom both ask as many questions as we needed. We both felt at ease after meeting him. He did emphasize that this is a BIG DEAL surgery and not something to enter into lightly. Also, he kept mentioning that none of the options available are "perfect", but I guess they all beat the other option (cancer) hands down!

One thing that I was a little disappointed about is that he won't do the operation laparoscopically. I assumed that most surgeries are now done laparoscopically, but apparently that is not the case with this operation. He also mentioned that there are no Colorectal Surgeons in the area that will do this operation laparoscopically (there are some general surgeons, but this is such a highly specialized operation, I want someone who really knows what they are doing). So, instead of having several small incisions and one medium incision below my pant line, I will have one long scar from just above my belly button down to my pubic bone. Not ideal cosmetically, but it makes for a shorter operation. I have heard that recovery is a little harder with the open surgery, but I will just have to tough it out.

Also, I had hoped there was a small chance he would agree to a "right hemi-colectomy" which would only remove half of my colon. This is a much simpler operation and requires no ileostomy and only one operation. However, because I have HGD accompanied by UC and PSC, there is literally no surgeon that would agree to only take half because of the risk of metachronous cancer/dysplasia (meaning it develops later down the road). So, it is decided that the only option is a total proctocolectomy (taking everything!).

Finally, they set me up an appointment to go meet with a stoma nurse at the hospital. This will allow me a chance to see the bag that I will be living with for several months between surgeries. The nurses at the hospital will help me until I am discharged following the first surgery, but after I go home, I will be mostly on my own. This is just a chance to get used to the bag while not in the hospital.

All that is left now is to schedule a date for surgery #1. I am hoping to have the surgery done toward the end of the semester (either November or December). This gives me the chance to plan my recovery time around school holidays and hopefully avoid missing too many days. I am also thinking that I may be able to defer surgery #2 until next summer if possible. However, this will depend on a lot of things, so for now I am going to worry about the first operation.

Next Appointment

I got a call today from my GI and set up my appointment to go meet a possible surgeon next week (Monday, July 9th). The surgeon was highly recommended by my doctor so I am interested to meet him and see what he has to say. This is my first experience with any sort of surgery, so I'm not totally sure what to expect. I will be taking a list of questions I have created so that I feel really comfortable with the procedure and know exactly what to expect (btw, my friend/grammar nazi Nikki would be so proud! That last sentence ended in a preposition, but I felt compelled to go back and change it!). 

The doctor's assistant also told me that my lab work came back (to check on the good ole' liver) and that things have stabilized a little bit. I'm pretty sure that all the blood tests that I've had in the past few years have slowly been creeping up, so this is definitely good news. I had almost forgotten about my liver in the past few months...

I also found out tonight that it is really tough for me to tell friends about having this surgery. After dinner, I told a good friend from college that I was having this surgery and was holding it together until I started talking about the cancer risk. Apparently my brain decided that this is what I am the most scared about. I broke down a little bit, which I guess is allowed every once and a while, right? I know the odds are very scary (42% risk of already having a "synchronous" cancer), but I must hold on to the fact that they are still technically in my favor. Plus, I've got The Big Guy on my side and I trust that He knows what He is doing!

For now, I'm going to take another vacation with friends (for the 4th of July... my second favorite holiday!!) down to Florida. We are going scalloping on our second annual trip to Steinhatchee, Florida (Google it... I swear it's a real place!). I went last year with lots of good friends and I look forward to the trip again this year. 

I will update next week after the consult with the surgeon. Hopefully there will be some good news about the timing (not before school starts!?) and the actual operation (not a TOTAL colectomy?!). But, I'm not keeping my hopes up for anything at this point :0/