How the Scar has Changed Already

So this is my scar 3 months after surgery. You can tell it's already started healing and it's still numb, so it's kind of weird there. Yeah, you can see my new tattoo as well. Like I said before, the part by your belly button is the hardest part to heal and will usually be the thickest part of your scar. I embrace it though. It's part of me and I'm not embarrassed of it. Getting my tattoo, so many people wanted to look at it and I'm okay with that. "Scars are like tattoos but with better stories". If anyone has any questions or wants to talk before/during/after surgery, I'd be happy to compare stories or answer questions. My email is nabernathy@aerodyneng.com. Good luck!!!

My Reward for Completing 10 years of CP!

So, Since surgery I have been basically starting over with life and learning how to deal without so much pain and discomfort. I also wanted something in my life to remind me how strong I am and how much I have overcome after 10 years of chronic pancreatitis and bad doctors, etc. So on May 16th, I decided that I was going to get a tattoo of the pancreatic transplant ribbon on my right hip (a couple inches to the bottom right of my scar) and I absolutely love it. It's a reminder to me how I suffered and succeeded and the pain from the tattoo was a piece of cake and almost comforting to know that this part of my life is concluding and we're going to make it. Now, obviously not everyone is going to go out and get a tattoo, but do something when you're done with this surgery and part of your life and make yourself feel alive. For the first time, I felt like I controlled my life and my body and it was the best feeling. I've also decided that I think I am going to go back to school for nursing and it's almost a pay it forward thing for me. I've had bad nurses and bad doctors and it's time to do something and learn from the bad things I had to go through and I will be damned if I ever am a bad nurse to someone that is suffering. Good Luck. Nicole

Back up to Minnesota-3 Month Follow Up

So, mom and I flew up to Minnesota yesterday morning at 6am. We had a layover in chicago and then got to minnesota at about 8:30am. We went straight to the clinic because since I had to fast, I knew I was going to get blood work and thought maybe they could do it before the appt. I went to the counter and told the lady that I had a 10:30am appt but I was going to need bloodwork and to do the research boost test where they take your blood before you drink it and then 2 hours later. our flight was leaving at 1:30, so I wanted to make sure we got everything done. Well, ended up we didn't get any blood work before the appt and got to see Dr. Sutherland around 11am, which he was really upset that they didn't do any of it after he asked them to. So I rushed over to get the blood work and started drinking the boost and then they just did the after bloodwork at like 45 minutes afterwards, since that's the best we could do. Seeing Dr. Sutherland was amazing. He couldn't believe how well I was doing and I passed with flying colors. I am off the pain meds that I have been on for countless years and the scar is healing fine and I am feeling pretty well. In all, it was a great trip and so reassuring to hear that I am doing well. We discussed the fact that the enzymes upset my stomach and the nausea and vomiting is still around and he thinks that my body is producing too much bile and it's sitting in my stomach now that there isn't a pancreas. There is a surgery he recommended that would cut the duodenum and re-route the bile 45cm from the stomach and then cut some nerves to prevent the reflux. They would go through the same scar, but that is where the conversation ended. I didn't want to talk about that surgery and said that I think I'd see how time helped before considering another one since life is kind of starting over for me now. He said that even time could possibly help and heal some of the places that have been re-routed, so that is the plan for now. We finally got home around 7pm last night and I am wiped. 4 flights in one day does a number on your back and neck, let me tell you. So in all, things are going exceptionally well and it's pretty exciting. I do hope anyone that experiences this surgery does as well as I do, but if you don't it's ok, you will get through it and just do the best you can. I got so frustrated going back in the hospital and still feeling pain, but I have to remember that it's only been 3 months and that is nothing compared to 10 years of pain. I heard that Dr. Sutherland is operating on a 17 yr old girl tomorrow that has has chronic pancreatitis since the age of 3. She has been home schooled this year because it has been so bad. My heart goes out to her because I know how bad it sucks to have pain everyday but she will be so thankful to have the surgery in high school where she can go on to college and not miss a thing. I wish I had my surgery earlier. Oh, one of the funny things is that Dr. Sutherland recommended botox for my constant frown line from the pain. Thanks Sutherland, i'll keep that in mind! If you haven't met him, you are missing out because he is one of the best things that has come into my life and he is so caring and sweet. All he could say was how well I looked and how nice it was to see an actual smile on my face. He is a rare doctor and it's sad that there is only one of him because every doctor should be exactly like him. That's all for now!!! Love, Nicole

You will have a pic line in your neck. This was the scariest thing to me. it doesn't hurt or anything. It's held in place by two stitches. Although, me being moved from ICU, it got caught on the bed and one stitch tore out. still didn't really hurt that bad, FYI. This looks scarier than it is and it's a Godsend when they take blood like every 2 hours. They can administer your meds through here, take blood, and they gave me my blood transfusion through here. It is so much nicer than having IV's in your arms and trying to sleep. Although, I did have two other IV's in my arms, they came out after a couple of days so it makes it much more comfortable. I even slept through some of the blood draws since it's so quick and easy. Also, I was terrified of it coming out. They tell you to take a breath in and it was out before I even realized what happened. You don't feel a thing.



Alright, here's the big thing... This is my scar after 4-5 days post surgery. You will have TON of fluid in your body and it will look like your 5 months pregnant when you're out of surgery. Don't worry, they start giving you lasix to get rid of all the fluid. The scar didn't hurt too bad and after the first couple of days, things are really pretty good. The first night it was impossible to breathe without agonizing pain and so I would breathe shallow breaths that made my heart rate sky rocket, but do what you got to do. I didn't sleep the whole first night and they finally adjusted my pain pump and I slept from sat pm to sun pm! They also had to mess with my NG tube twice on saturday so I'm sure that helped add to the sleep. As much as I hate NG Tubes, you don't want them adjusting and pulling and pushing on them, so just stick it out the best you can. I didn't take pics of the NG tube because I hate them. Mine came out on tuesday and probably a little too early but it makes me feel so much better that I can fight off the other things. You will have a catheter too but mine came out on monday I believe, just as soon as you can get up and move around on your own! Walk, walk, walk, I am telling you. They won't let you walk on saturday but I think starting on sunday they did. (I had surgery friday morning). The only problem you may have is right by your belly button. It's where your natural bend is so my scar is pretty thick and raised right there, but I think it gets better each and every day. You won't be able to lie on your stomach for a few months because of the pressure, but you'll be okay and comfortable on your side, i know. So, these are about the only pictures I took of the surgery. I recommend taking a lot of pictures because you're going to want to look back and commend yourself for getting through something like this. Also, when you get home, put vaseline on your scar every chance you get. it'll stain tank tops so be careful but it makes it heal so much better and faster.

3 Months Post Surgery

So, everything was going really well, Well enough that even I was shocked at how well I was doing. well, we all know what happens when we say that. I had been tapering off the methadone since the surgery (not by choice). I wanted to get off the same way i did the fentanyl lozenges and just never get back on any of them. Well, i was on 80mg prior to surgery each day and left the hospital on 60mg without a problem. Each week, I would drop 5mg and it would kind of hurt for a day or two, and then go away, so no problem. Well at the end of april, the 27th to be exact, I was done tapering and was completely off the methadone. Those first three days were the worst. I felt like my bones were breaking in each part of my body and it would continually do it over and over again. I read online that someone called it feeling like "barbed wire was wrapped around your bones". Well, I also read that baths and things like that would help a lot. So, i think I took about 50 baths a day for that. Mom was there with me and after 72 hours, i felt much better, so i'm thinking that it is over with. Well, that 4th day, I couldn't get up without passing out and feeling so weak that I was going to pass out. Mom took me to the doctor and my blood pressure was 80/50 and my pulse was 60. I had been so tired that entire weekend and just thought I was coming down with something. Well, the doctor thought it may be the clonodine that the hospital put me on for the withdrawal. (Let me tell you- it doesn't help a bit). Clonodine, not Klonopin, is designed for people with high blood pressure, but the .1mg is used to help with withdrawal. Mine is usually always low, so do not stop taking it cold turkey otherwise it will sky rocket your blood pressure. So, I go home from the doctor and feel okay, just weak and go and lie down on the couch. This is when I didn't know that wednesday night would be the last time I would sleep for 5 days. The withdrawal pain came back, but just in my arms this time. I took something called legatrim PM at night thinking it would help me sleep and it did actually take the pain from my legs. Well, me being me, I did a bunch of research online and I come to find out that methadone withdrawal can last up to like 6 weeks. I also read that all these peole were saying to drop 1mg per week so you wouldn't feel the effect of the withdrawal. Come on... 5mg can do this much damage?! YES!!! So at this point, i'm only through week 1 and thinking this is Bad!!! I read that you can take a bunch of things to help with the withdrawal. I'll give you the website for them, but you need to make sure you have something to help you sleep. My back and neck were so painful for not ever sleeping a second in 5 days. you don't think of that when you're lying awake. it didn't matter how exhausted I was at night, my body wouldn't sleep a second and this is VERY Common. You'll need to take a bunch of pills and they do help. Here's the site I found that listed out everything you'll need- http://www.dpeg.org/treatment/methadone_withdrawal.htm. Trust me, they are right when they say that doing this outpatient is a nightmare and you will feel like you are going to die even though you won't. Well, Week 2 came along and at this point, i couldn't keep any food down and fully dressed in my sweats and sweatpants, I couldn't touch 100lbs. You'll feel very cold all the time and I can't even express the sneezing. I can sneeze like 6 times in a row. it's a side effect of the withdrawal. Once the worst pain and everything is over, you'll just kind of feel like you have a cold for a few weeks. Well, no food, no sleep, weight loss like crazy, and low blood pressure meant it was time to call the doctor. I didn't know who to call because my family doctor was out of the office, so I called my gastroenterologist who has taken care of me for years. He admitted me to the hospital and came to check on me hours later. He looked at me and said, " I just saw you two weeks ago, what the hell happened?" I was pale, feverish, and so weak it was unbelieveable. Nothing would stay down no matter how many differnt kinds of anti-nausea drugs they gave me via my IV. The other down side is at this point you're so dehydrated, it's almost impossible to get an IV. I'm a hard stick anyways and my veins are tiny, so this made it worse. I was in the hospital from monday to friday and we probably went through 10-15 IV's. Oncology was called and everything. After getting sick so many times, i finally called thursday night at midnight to my nurse and begged her to find someone to get an IV. IV meds was the only way I was going to sleep and possibly not get sick AS MUCH. They called this nurse administrator that worked in the ER for 18 years and she got an IV in my hand on the first try and I didn't feel a thing. The down side was that my vein was so small, phenergan couldn't get through. If you ever are in this situation, you want phenergan. it's an anti-nausea med and it makes you super sleepy. I was given ativan to help me relax and compezine for the nausea. Those two together will make you sleep but you're kind of stuck in half awake, half asleep mode because I sent quite a few babbling emails that made no sense to some of my customers on my blackberry. Make your husband or someone take away your phone!! My mind was thinking it was still working and had things to do, but the body was sleeping. Honestly, I don't know if you could get through that second week with the nausea without the help of a doctor or something. I am at the end of week three and working normally again. They sent me home on librium, ativan, and ambien. Ambien will help you sleep and take the ativan with it so your body can relax. I truly think I'm over the worst part, but I can look back on it and think to myself, how did I get through that???? You are stronger than you realize, but no one should have to suffer like that, especially when there was no rush to rush off the meds. Now I wanted off of them asap, but I wouldn't choose the way I did it. Talk to your doctors, inform them of what is going on... my gastro doctor had no idea what I was going through for that first week and he would have done everything he could to make it comfortable and ok. I still feel like i have a cold and sneeze constantly but no pain or anything and I cannot wait until this period of my life is over. If you've lived with chronic pancreatitis, you know it sucks and you want it gone, but there have been times where I think I would have taken that pain back then go through what I went through a few times in the past couple of months. Also, my gastro doctor realized that my digestive enzymes weren't strong enough, so we switched to Creon 20, which are like 3 times stronger. Just keep in check with your body and if something doesn't feel right, write it down and talk to your doctor. I am so used to doing things on my own that I suffered when I shouldn't have. And Thank God for family and friends that are supportive and can understand what you are going through and don't push you away. You need the support and you need someone to talk to. On the other subject, I tried the vivarian root and melatonin to help me sleep and it did nothing. Get a prescription sleep aid. Trust me. I had the vivarian root, melatonin, an OTC sleep aid, and tylenol PM and still couldn't sleep a wink. You will start going crazy without sleep. So, In all, This has been the worst thing that has happened since surgery, but it had to happen and I am just glad to be working my way past it. Good luck to you all that is going through this surgery. Oh, I don't think I ever mentioned this, but the first night of surgery, you are going to feel like you can't do it, it gets much better the second day, especially when they adjust your pain pump as needed. Take short shallow breaths and it won't hurt so bad. Breathing is what is going to hurt the worst. I constantly felt like I had to sit up or lie down. Do it as often as you want. No one knows what you're going through and seconds of comfort is worth it. I go back on May 21st for my 3 month check up since I was in the hospital for my first appt on the 7th. I'll let you know what I find out! I have pictures of my scar on my myspace page. it's not too bad. trust me. it'll be worth it and hey, scars are like tattoos but with better stories. Love to you all! Nicole