Posted by juliebernal | Filed under Acute & Chronic Pancreatitis, Diabetes/Blood Sugar, Digestion & Nutrition, Recovery & Coping, Research/Support/Hope, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
Jan. 24, 2012
The other night I spent some time looking at pictures of places I one day hope to see. I think about what my life will be like in a few years. It’s a strange feeling going from being so sick for so many months, to having a life changing surgery and transplant, to recovery, then to how life “should” be. After having my pancreas and spleen removed and having my islets transplanted into my liver, I’ve been spending a lot of time at home. I am now at 8 months post. I may not have the busy life I had before getting sick, I may not go out as much, but I am able to find time to smile.
The first 5 months after my surgery, I had a hard time sleeping. I spent many nights awake at night just looking up at the ceiling – memories of when I first woke up after my surgery, memories of the battle it took to eat again, the fight it took to get to where I am now. It’s now in the past. But like anyone who has ever experienced a SOD attack or pancreatitis, there will always be the memories. Many people after having major surgery or illness have admitted to suffering from post dramatic syndrome at some point in the process. I believe this to be true and think it is normal to have dreams and lingering memories of any traumatic episodes that have been experienced in our lives. And since we are all different, I believe each person will move forward in their own way, and with time.
Though I am so much happier now living without my pancreas – I still worry at times. Major abdominal surgery isn’t always the perfect cure – it’s a great treatment – but doesn’t always mean things will be perfect. It’s just like life – people get colds, the flu and it can just come and go without notice. You can do your best to try to avoid it, but there will be times when things just happen. Right before the New Year I had an ER visit due to abdominal pain. I felt it in my right rib and sharp pain in my back. The day before I had three straight days of loose stools and diarrhea. The weeks before I had pain that was coming and going so I had an EGD and CT scan to try to see what was causing the pain. The tests all came back as normal. But clearly something was going on.
Though I seemed to have a bowel movement 1-3 times a day (skipping a day here and there at times), the ER doctor said my intestines were very loud and being overactive. I was given medication to help the pain and was sent home. Within 24 hours I was back to the ER with pain so bad I could hardly stand. My abdomen started to feel a bit hard. I had an X-ray and it came back showing that I was backed up and my colon was impacted. My biggest worries since having the TP/AIT is getting a bowel obstruction or an infection. I’ve been noticing that bowel obstructions are pretty common for people post TP/AIT. Any major abdominal surgery can add to the risk of getting an obstruction. The doctor said I needed to clean my insides out ASAP because it would become an obstruction soon if I did not. I guess I was just a bit shocked by the fact that I was backed up since I was complaining of having loose stools and going too much. Now I’m being told that I’m not going enough? But, I guess when the intestines are all rearranged – it tends to make things flow a bit differently. It took a few days after the cleansing (using Magnesium citrate) to finally see the pain fade. It’s made me wonder how many others with pain are being told it’s phantom pain when really it is constipation or a partial blockage. Constipation post TP/AIT does not feel the same as pre TP/AIT – it hurts a lot more and almost feels like pancreatitis and tends to present with nausea. Digestion becomes very different after having the pancreas removed. It involves finding the right amount of pancreatic enzymes to take with meals based on fat and the size of the meal. And even still, sometimes the digestion process is not perfect. There can be fatty stools and if it moves too fast through the body, it can hurt and the body doesn’t absorb the nutrition it needs. Then there are times the intestines and colon just stop working or work slowly. Sometimes there are problems with the colon and stool getting compacted. Much consideration into diet and medication is needed to help with maintaining a healthy digestion pattern. And when constipation happens, it’s important to act fast before it becomes something more serious like an obstruction and needing more surgery.
As for me, I’ve had a good month so far. Just like all of us, I do wish I could go out and about more often. I find myself staying home most days. I’m not very active and I try to limit myself to only one activity a day. Last weekend my husband and I went out shopping for a few hours. It felt so great to be walking around and to be a bit active. Out of the blue, the exercise was a too much for me – my blood sugars dropped down to 45. After getting my sugars back to normal, I felt pretty tired. My biggest challenge right now is keeping my blood sugars up. And with the blood sugars going low throughout the week, I’ve been noticing my sort-term memory isn’t as sharp as it once was. I’m hoping that this will improve with time. But I’ve been learning from my body the time of day when it happens and I can try to figure out what to eat and how much. If I’m going to be active (yes, even just shopping for 30 minutes) I know that I will need to eat an extra amount of carbs. I’ve recently learned through a friend and doctor that when your sugars are low, it’s good to follow carb intake with protein. I’m hoping this advise will help keep my sugars more balanced. Also, I’ve been suffering with daily fatigue. I’ve started taking Vitamin B and D and it has helped some and I would suggest to others who think they may have low Vitamin levels.
Life is still really good for me. Though I tire easily and my health is not perfect, I finally feel like I’m moving forward. I hope to start working again in the near future (but I’m not trying to rush something that my body isn’t really ready for just yet). But it will happen when the time is right. And when it happens…I will celebrate!
Until then, I will continue to make the most of my time the best I know how. I may not know what my future holds for me, but I look forward to finding out. I have a pretty great bucket list I wish to still achieve. And life is full of beauty and sometimes it’s the simple moments that bring the most joy. So I say to all of you out there…let’s keep on moving forward.