Posted 8/14/2011 6:18 AM (GMT 0)
Ok, here are some notes for the first surgery, all subjective perspective. One agonizes over surgery vs. waiting for a miracle cure. Wasting my son's youth waiting for pharma was not fair. After I realized that surgery is the path, I let the Humira, Remicade, and some 6-MP go on just to make sure he would have no regrets in the future. It is a costly wait as Prednisone can mess up your bones for good, and your mind and your will for a while.
The best use of the time is to gain weight and strength, which is hard to do if you are flaring. Prednisone lowers flare symptoms but you have to taper before surgery as it affects pouch healing. Do whatever it takes, organic food, farmers market, turmeric, chicken soup, to get her ready in this phase. Best case there are two surgeries, the hard is the first one, so she has to be physically strong for that one, the second one is easy surgically and also psychologically as that is when the bag is gone. If you delay too much this phase and condition gets worse it can turn the process into three surgeries.
We faced two options on the surgical front, team vs. star. Places like Mayo and Cleveland have great teams and great post-op care in the hospital but may not guarantee which doctor performs the surgery, in our case we picked the surgeon and went to the hospital the surgeon practices. You may have your beliefs on a star quarterback vs. a well balanced team, my thinking is that the only place where all surgeons are above average would be Lake Wobegon :). So I picked the star surgeon. We checked experience, reputation, and spoke with patients that went through the same surgery.
If you cannot get good strength and weight for the first surgery they may strengthen you during your stay via IV nutrition. It works fast but be aware that the nutrition is done via PICC line, which is inserted pretty high into the arm vein (close to the armpit I recall). A recent study (I discovered it the hard way) shows that UC patients have a higher chance of getting DVT clots at the end of the PICC line. Before PICC insertion you will have to sign a release, so the risk and the decision are yours whatever the staff says. A DVT clot is not fun at all, so the idea of getting strong is to see if you can get by the entire hospital stay without IV nutrition, just IV fluids that are delivered via peripheral lines. If you have to use a PICC line that is fine, just demand that an ultrasound of the line tip is done at reasonable intervals (5 days for example), and know that pain in the upper arm is a symptom of a clot and should be dealt with right away.
Doctors prefer to deal with things one step at a time, and that is fair. It is our duty to have the entire picture. I do not pursue the full picture by pestering the doctors but rather try to read, and to chat with friends I grew up with that are medical doctors in other fields. Not only I get a bigger picture, sometimes they even check with their GI colleagues as a doctor to doctor informal question.
Doctors by law or by training have this distorted idea that the patient is just your daughter, and as an adult she gets all information and decisions. Be blunt and remind them that the first caregiver is actually you. They will hide behind the HIPPA privacy law nonsense, so have your daughter sign the necessary releases for you and rub it in their faces until the treat you as part of the team. UC has its stress related component so it is obvious that your daughter should not be exposed to all the complexities and possible scenarios, it is your job to insulate her from that, and to always be a step or two ahead of her. You need to find a doctor that will not get in the way of doing that. Mine was great and the use of email in almost real time was really a blessing for having a direct channel. I tried not to abuse the channel I think, as it was too valuable to lose.
Before surgery especially in a University Hospital you will face the fact that every young doctor likes to do the data gathering all over again. They are being trained for data gathering it seems, but you are there to be cured not to educate them. What helps there is a strong sense of humor bordering sarcasm so you can have fun with them and their questions. If they want to practice they IV skills on you, just say no, nurses are so much better than young doctors at inserting IVs, tell them to go to nursing school first.
Have a support group with committed people including some that are less emotionally involved than you are. This is your project, line up some friends, family, and youngsters her age. People around you and her make a huge difference. You may tap them for many things, but the main one is walking partners. The key to recovery is the amount of walking she can do, with or without pain. Hospitals aren't particularly designed for walking, circling around the artificially lighted walkways all day is like the cartoon characters that keep walking and the background does not change. Who you walk with makes all the difference, friends, mentors, anybody that would take her mind off her immediate things is great. For the room we got great podcasts and board games.
The main mindset change for the first surgery was that UC was a two year struggle about how to keep your digestive output inside longer. After surgery the main challenge was the opposite. Stuff coming out is good, and when it doesn't then problems develop faster than UC flares. Start food really easy, be very conservative and don't push things. Staff and insurance companies may want you out of there, but rushing solid foods can aggravate blockages.
Keep in mind that once you are home any complication is either resolved over the phone with your surgeon's call service, or more likely in the ER. Is your ER a decent and responsive place? Is it the same place where the surgeon practices in case you need to be seen or re-admitted? The period between surgeries is sadly a medical no-man's land. Make plans for that period, medical and otherwise. Try oto make it also as short as medically possible.
One disappointment we had was going back to Prednisone and a slow taper after each surgery because of the hydrocortisone administered during and after surgery. Well, even if GIs swear that Hydrocortisone and Prednisone are essentially the same, in our case the mental side effects were much worse with Prednisone. It turns out that there are also Hydrocortisone pills, and got the GI to prescribe those instead. The only downside is that Prednisone releases slower, so he had to take 3 pills per day instead of 1, but the side effects were not as bad.
Apologies for the long response. Hope this helps get you started, as of know my son has reclaimed his youth. He has his cute little scar, and I have my invisible scar else I wouldn't read this board every so often.