Baker’s Previous Post: UC Journey to J-Pouch
Time For Surgery:
As a follow-up to my original post, I wanted to write-up my experience investigating and ultimately coming to the conclusion that I would proceed with J-Pouch surgery. As I write this I’m now 4 days away from my first surgery, still very nervous but also excited to get it over with. I booked the surgery almost 4 months ago so I’ve had plenty of time to contemplate and worry about the upcoming procedure. I wanted to enjoy the summer and help my wife with our new son. I’m not sure if I’d recommend scheduling something that far out as it’s way too much time to ponder and contemplate.
Ironically, I’m very well controlled right now to the point it’s somewhat surreal to believe I’m going in for surgery in a few days. However as my surgeon pointed out that’s the best time to have surgery, when you’re healthy and strong, I guess he’s got a point. One of the challenges I had and discussed many times with multiple doctors was when is the “right” time to have surgery? The answer was pretty consistent in that every person has a different rationale and thinking. One doctor told me he had a patient that as soon as she was diagnosed with UC, during a relatively mild flare and before starting Asacol, opted for the surgical option. In other cases people wait till they’ve exhausted all options before going under the knife, unfortunately in many of those cases it tends to be an emergency. I agree it’s really different for each person based on their symptoms, lifestyle, response to meds, etc&hell ip; My wife and family were onboard with the surgical option long before I was as it’s probably a little easier for them to look at it analytically, however they’re not the ones going under the knife!
For me ultimately it was the combination of my son being born and thinking ahead to times spent with him, combined with some scary med side-effects, and finally just being tired of the day to day UC symptoms. Up to my surgery and for roughly the last two years I have taken Remicade, Prednisone, and Imuran in varied doses to control my UC. About a year ago I developed one of the scarier side-effects (or at least we think it was a side effect of the Prednisone) in the form of chest pain. At the time it started as soreness in / on my chest but would occasionally be more of a shooting local pain. Having never had any chest pain it scared me to death and I worried about it non-stop. I went to the doctor and had the chest x-ray, EKG, and ultimately a cardiac stress test. In some cases the pain combined with the worrying would lead to other symptoms like light-headedness, dizziness, tingling in the arms and shoulders, etc… All also heart related sympto ms and very scary. After passing all the tests with no problems our best guess is some sort of “costochondritis” or rib joint inflammation that led to a panic attack of some sort. I still don’t have a definitive answer but the doctors agree it’s likely related to all the meds I take.
Once you commit to having the surgery there is still a lot of work to do. For me that included getting all the information and finding the right surgeon. I probably over did it and in the end my conclusion is it’s very hard to judge one surgeon better than others, there is just no readily available data you can use. Ultimately you have to go with an experienced surgeon who you like and feel comfortable with, and it helps to have them close to home and family for support and follow-up visits.
In my travels I went to the Mayo Clinic (great place but just too far away for travel and my family), University of Virginia, Medical College of Virginia, and a local GI group. My referring GI doc (doesn’t do surgery) referred me to the local group but he openly admitted he couldn’t recommend them over anyone else. I was motivated to find the best surgeon for me and my situation. Ultimately I could have interviewed 20 surgeons and still wouldn’t know if one was any better than another. Some of the surgeons seemed a little confused that I was consulting multiple surgeons at first, I guess most patients are referred once locally and that’s it, however all were very informative and helpful. One resident doc who saw me before the surgeon did tell me that if he were me he would have done the same thing!
Another consideration is the number of surgeries and type of surgeries. As most people know there is the 3-step, 2-step, and 1-step options. From my experience the 3-step is typically used for those who might be in a severe flare or have health that is otherwise compromised (it was interesting to read Blake’s post about 3-step having less risk of ED, I had never heard that before) so that there is more time to heal before the next surgery. The 2-step process is the most popular and for patients in fairly good health in which the colon (and rectum) is removed and the j-pouch is created with a temporary loop ileostomy and then “taken down” 6-12 weeks later. The 1-step includes does not include the temporary ileostomy but there is a much higher risk of leaks and possible infections, not to mention permanent failure of the pouch. All the surgeons I consulted with agreed the risks of the 1-step far outweighed the benefits and thus 2-step is prefer able. I wish the 1-step was more acceptable and less risky as I’m not looking forward to my ostomy but if I’m going to do this I’m going to do it right the first time!
The next decision is what type of surgery, open, laparoscopic, or hand-assisted (basically a blend). Open means a large incision in the lower abdomen. Laparoscopic typically uses 4-5 minimally invasive entry sites. And hand-assisted is a few small laparoscopic incisions and one larger opening in the lower abdomen. As I understand it hand-assisted means they use the laparoscopic technique to remove the colon but then use a smaller “open” technique to create the j-pouch. The Mayo Clinic surgeons all used the hand-assisted technique and seemed to have pioneered the method. Most of my local surgeons used the “open” technique which at first made me think they weren’t as current as the Mayo doctors. However as ED is a concern of all men having this surgery, their argument was the more room to work, the less likelihood for problems. That argument seems to make a lot of sense for me and I’m not worried about scars. The y did mention younger patients and women who might be more concerned with scars often opt for the laparoscopic or hand-assisted alternatives. Of course you can add the ostomy and drain line incisions / scars to all of the above.
Here was a list of questions we came up with to ask each surgeon:
-How many J-pouches have you done? How many do you do a month?
-What is your complication rate? Leaks, infections, ED, failed pouch, etc…?
-Have you ever hand sewn a pouch (I was told this is relevant in case the stapler breaks and they have to do it the old fashion way)?
-Do you make rounds after surgery or do your student docs (typically only at teaching hospitals)?
-Time in hospital, healing time and / or recommendations?
-Time between surgeries?
-Board certification or accreditation?
-Is there any thing about my specific case that concerns or encourages you?
Like most patients I’ve asked a lot of questions and done a lot of investigating about the ostomy. I’ve looked at all kinds of pictures and videos to help me prepare for the sight of my intestines sticking out of my body spewing god knows what! I also wore a 2-piece bag one weekend to get the feel for it, something that was deceivingly easy and not uncomfortable at all, however I know that vs. the real deal will be a very different experience!
I’m also trying to take an inventory of all the tubes that might be poking out of me (or in me) after my surgery so I’m not surprised. So far I have accounted for the following: IV of course, bladder catheter, drain tube or two, ostomy, possible epidural, possible nose tube to drain stomach fluid?, possible rectal tube for pouch drainage? Ugh, can anyone confirm this?
I am still debating my pain control options post-surgery but I’m sure I’ll have much more to post on this later this week. My doctor said he recommended an epidural as it controls the pain my consistently but I’ll have enough tubes and needles stuck in me, if I can avoid one I would. I would also like to get up and walk around as soon as possible so I’m not sure if the epidural limits this. I also consider myself to have a fairly high pain threshold (easy to say now!). At this point I’m leaning towards an epidural if my surgeon recommends it; if he’s indifferent I’ll opt to not use it. Any advice?
At this point I’ll I’ve got to do is get on with it! I’m committed to seeing this through for me and my family and so I can return to a normal life.
written by Baker
submitted in the colitis venting area