I had my consult at Cleveland Clinic with Dr. Lavery on Wednesday, March 2nd. The following is taken from a post I made over at Healing Well the next day:
Well, today was a lot to digest! I had my consult this afternoon with Dr. Lavery. There was also a doctor who "works for him" in attendance and an additional doctor who was visiting from San Diego apparently learning stuff from them and checking out the facility. I was greeted with a surprise "peek at the bottom" which I wasn't expecting. He did a digital exam and then put some sort of scope in there so they could evaluate things. Turns out after three weeks of Prednisone @ 40 mg and 1 week of Rowasa enemas I still have a decent amount of inflammation going and contact bleeding that they were able to observe. Not very encouraging.
Dr. L did think surgery would be a good course of action for me if I don't want to try the biologics, etc. We had a good discussion about my rationale behind that and he seemed satisfied that I've adequately thought it through. What I wasn't prepared for was hearing that he would only consider j-pouch for me as a three step process. Once he went into his reasoning though, I felt comfortable with why and I understand it. There are two concerns: first is my use of Prednisone and worry about organ softness, etc. The second is my current weight. I had a baby in August and have been going to Weight Watchers since then and having great success (I've lost 50 pounds) but I still need to lose another 40-50 pounds to be at an ideal or healthy weight for my height. He said he would not be comfortable constructing the pouch while I am carrying this much excess weight. That seems reasonable.
So what he is suggesting is to remove the colon and have the ileo for six months or so (or longer if I want to) to let my body recover from steroid use and also let me get to my goal weight. Then do the step 2 for construction, heal up from that, and then step 3 for takedown. I asked about my thoughts on waiting until October (which should give me enough time to resolve the weight issue) but given the current state of things that would likely mean 7 more months of steroids which isn't going to resolve that concern and is only going to be harder on my body. So, either way I'm looking at 3 steps unless I just want to go straight to a permanent ostomy. I'm really wanting to give the pouch a shot though.
I have a lot to wrap my head around at this point. I'm 2/3 of the way into training for a half marathon that I want to run in mid-May. I really would like to see that through. I feel like psychologically I need it. I think I would be ok at that point getting the first step done. I would think if I do that in mid-May, then I should be fine to go on our beach vacation over the 4th of July....what do you guys think? Tacking 6'ish months onto that would also put me back at the timeline I was originally thinking of for fall and I could do step 2 then. The major wrinkle is with my youngest son who is 6 months right now and nursing. He'll be 9 months then and I had hoped to nurse him until 1 year old, but I don't think I can manage that post-surgery with the recovery, too. It just seems like too much. I know it wouldn't be the end of the world to switch him to formula for those last few months, but there is an emotional acceptance thing there that needs to happen on my part. My husband and I are in the process of discussing and trying to see what we're comfortable with. This is really difficult. In addition, it looks like a minimum of 9 months (maybe more?) with the ostomy which is more than I was mentally prepared for. I have a feeling though that once you make the initial adjustment to it, it's really not a big deal if it's 3 months or 6 or 9.
The day after I made this post, I started feeling light headed and really tired after lunch. I dug out my glucose monitor (leftover from my pregnancy when I had gestational diabetes) and found my sugar was 201 an hour after eating. Way too high. Coupling this with the high blood pressure reading I got in the surgeon's office the day before, and it was really easy to see the writing on the wall: Prednisone is ruining my health. My husband and I talked things over and we decided not to wait until May for surgery. I made some phone calls to Dr. Lavery's office and am now scheduled for Step 1 of my three step j-pouch surgery on Tuesday, March 22nd. I will check in at Cleveland Clinic on Monday the 21st for pre-op and my meeting with the stoma nurse.
It's really difficult to explain how I feel right now. My emotions are in over-drive and I find myself randomly crying over stupid things. Part of this is still no doubt steroid related, but it's also just a lot to take in. The support boards I've been participating in online help tremendously. Just reading about other people's experiences and being able to ask them questions helps with feeling like you aren't the only one going through this. I've also been spending time looking at pictures of stomas, post-op pictures, and videos/tutorials of people changing their appliances. The more I do this, the more normal it starts to feel and the less freaked out I am about life with the ileostomy. At this point I am confident I will be ok once I get through the initial surgical recovery. I know there will be a learning curve as to figuring out which appliance works best for me, but I'm ready to take that challenge on.
There are a couple of things I had to work out. The first involves my almost seven month old son who is still nursing. I have enough milk in the freezer to last him about five days. I will be working to add to that up until it's time to go to the hospital. While my mother-in-law is caring for him, we are prepared to supplement with formula if we need to. I am going to attempt to take my pump to the hospital and pump enough during my stay to keep my supply alive. I'm not going to try to bring any of the milk home because between it being pumped in a hospital and all the drugs I'll be on, I would rather just throw it out. The goal is just to keep milk production going until I get home again. Once I am home, we will use a combination of pumping and bottle feeding and having my husband hold and position the baby so I can nurse. We feel like I'll be able to do some nursing in bed and also in a recliner with the Boppy pillow to protect my incision and my husband there to help position and support the baby. I've already given myself permission in advance to stop at any point if it's just too much. I also told my husband he will probably actually have to do the pumping the first day as I'll likely be too out of it. I at least to feel like I tried and we'll see how it works out.
The second item was missing out on my half marathon in May. This was as difficult emotionally, if not more so, than the nursing situation. I've poured a lot of myself in training these past few months. I've also been sick so it's meant scraping together every last bit of extra energy I have somedays just to get through the workouts. At the same time, running has kept me sane, helped me cope, and reminded me that I am strong and capable despite what this disease has tried to do to me. I had to force myself to realize that my long term health was at stake and there will be other races once I recover. I don't want my training to be in vain though, so on Saturday the 19th I am running 13.1 miles as my own personal half marathon. There won't be the normal race day excitement or a cool t-shirt or any of that...but I am doing this for me so I guess I don't need all of that stuff. I'm looking forward to it a lot and I think it will help me to close the door on this chapter of my life that has been so defined by my illness. I'm so ready to move on to the next thing! I am setting a goal for myself to enroll in the next season with my training group and join the walkers to get ready and walk the half marathon in Columbus this October. I've also set my sights on running my traditional 5 mile Turkey Trot on Thanksgiving Day. Having these two goals to work toward will really help me have something to focus on during recovery. I'm excited to see how I do.
Today I got to refill my meds for the last time. I will be so happy to get rid of all of these pills and their side effects! I would love it if my local pharmacist forgot what I look like. I had a chat with my GI today and he reminded me that when this is all said and done I won't need him anymore. All of these great things I have to look forward to by getting rid of my diseased colon!