A tough and long episode

Update April 5 – May 23

Today is April 30^th 2013 and I am feeling Great! Actually I've been feeling great for the last 5 days! However from April 5 until April 25 I was fighting harder then I have ever fought before. For 21 days I was unable to keep anything down and I have never gone that long before with nothing not even ice chips. For those 21 days I was not getting any form of nutrition what-so-ever, I was getting regular IV fluids plus zofran, gravol, pantoloc, morphine or diludid, and reglan all through my picc line. The morphine was making my nausea worse so the doctors put me on fentanyl but it didn't last long, plus I was uncomfortable taking it because I had never taken it before, diludid seemed to work better. I find if morphine isn't doing the trick, and it usually does, then diludid works just fine for my pain.

For those 3 weeks all I could do was lay completely still on my left side, if I tried to change positions the movement would make me get sick. Laying on any other side made the nausea worse. The nausea I get is so strong and intense it completely stops me from any type of movement. Even talking becomes literally painful and makes me nauseous, I can't keep my eyes open because that also makes me more nauseated. Getting up to use the washroom, when I'm this bad, is almost torture that I hate having to go. All that movement usually does make me sick. All I could do was lay on my left side in the dark because lights were also too much for me in this state. I hated it when someone would come into my room and turn the lights on, it just made things more uncomfortable. Then there’s the pain, the sharp constantly aching pain. My blood pressure would go as high as 200/130 because of the pain. The combination of the nausea and the pain is completely debilitating. I can't do a single thing but lay there shaking my legs or feet because for some reason that helps me to relax a little.


On Friday April 26 I woke up and immediately I knew this is a better day! I was so happy and thankful for this day finally arriving. I was still in some pain and the nausea was definitely still affecting me. I couldn't watch much tv because it made me dizzy so i would just close my eyes and listen to it. Talking didn't bother me. My mom was visiting and she could tell that I was doing better, I was more awake and alert and talking a lot more. The day before, Thursday, I saw a new GI doc and after he reviewed my case he immediately put me on TPN, which started Friday evening at 6pm. I began to feel better and it continued as the days went on.. The doctors should have started me on TPN a lot sooner and because of this the new GI doctor wrote in my chart that I should not be laying there getting no nutrition, that TPN must be ordered not long after admission.

This time around the dieticians were putting insulin in with the TPN. For the first few days I was having relatively pretty good blood sugars with only a couple high readings. The next 3-4 days after that, I was having continous highs, numbers like 29.7mmol/534.5mg/dl or 32.6mmol/586.8mg/dl. Dangerously high numbers that lasted for a couple days. I was adjusting my pump and giving boluses (fast acting insulin) plus I'm getting the insulin in the TPN, and nothing was working. I guess you could say that I was resistant to the insulin. Then once again the pattern in my my blood sugars was changing. I began to be very sensitive towards the insulin. I started having mulitiple low sugars, having to receive dextrose through my pick. This brought my sugars up one a minute or two afterwards, whereas taking in glucose tabs, apple juice, or even straight sugar would not bring my sugars up. I was now somewhat resistant to me taking sugar in orally. The dietician and I decided that decreasing the insulin in the TPN was a good call. That helped a little but I was still having lows, sometimes as low as 1.7mmol/30.6mg/dl. It came to the point that I would go hours through out the day where I would turn my pump off and only be on the TPN insulin. Doing this my sugars became more stable for the remainder of my stay.

Saturday April 27th was better then the day before. I was able to keep down ice chips and a tiny bit of water. The nausea and pain were finally starting to subside, thankfully. I could finally watch TV instead of just listening to it without getting dizzy. Sunday I worke up and again I was feeling better! I was able to keep a clear fluid diet, jello, chicken broth, apple juice, tea, coffee, and water. It was very exciting to be able to eat and drink a little, it felt so Amazing!

By Monday April 29th I was having NO pain and NO nausea. I was feeling Great! I was moving around, going for walks. I felt more alive. Tuesday was the same, no symptoms, another good day! I made a bad decision at lunch however that would set me back another week, I ate 2 soda crackers. It was just to soon, my stomach couldn't tolerate them. Thats how sensitive my stomach is right now. The next foods I'll be introducing into my diet will be Ensure and a full fluid diet, creme soups, puddings, milk, and any type of liquid.

By Wednesday morning I knew I was having another episode. I woke up from a nap and soon after I started to feel really nauseous and then my breakfast came back up. I was also having pain. It was way to soon for the crackers. My stomach is just so sensitive right now. I thought it would be a quick setback as I could still keep a little down throughout the day but as the days went on the worse I got. So again, I laid in bed unable to move, couldn't really talk, in so much pain, and the intense nausea making me unable to move or really communicate. I laid in bed like this until the following Wednesday May 8th. I woke up and could once again tell that this was a better day! Lately on the first few days that I start feeling better I've been dealing with insomnia, usually for 2-4 days at a time. This alone can make me feel sick but luckily the lack of sleep hasn't done it.

It's Thursday May 9th and I am having a great day! Keeping down fluids again and moving around going for walks, building my strength. This has been a rough go this last 4-5 months which means recovery (getting back to solid foods and putting weight back on) will take some time and it will be hard but it's somethimg I have done before and it's something I know I can do again.. Adding new foods will be slow going so patience will be key. Getting back to your "normal" self after a bad episode takes time but it also helps to have a good support system. I, thankfully, have an amazing support system in family, friends and of course my very caring and supportive boyfriend, Brian. I am extremely thankful and greatful to have a good support system in place as I know there are GPers who don't have support from anywhere.

During this episode my sodium level, vitamin D, vitamin B1 and electrolytes have been extremely low, like every time this happens. I  received a shot of vitamin B1 plus potasium and magnesium through my picc line. When it came to my vitamin D levels my doctor had an idea! He had worked in Africa for awhile with seriously ill children whose vitamin D levels were extremely low due to being malnurished. The doctors in Africa would give the children a shot of 50,000 units of vitamin D. My doctor had never seen or heard of giving that high amount of vitamin D at once. But it worked! The children would feel a little better with the added vitamin D. Since my vitamin D levels were extrremely low my doctor thought this idea would be perfect for me. It turned out though that my doctor could not get a that big of a dose so he settled on giving me 3000 units a day by pill.

After a month of being in this episode, my doctor decided he wanted to do an endoscopy on me to see if he could see anything in my stomach, like ulcers and to check the bacteria in the duodenum and stomach. Thankfully everything came back normal. The GI doctor who did the procedure said that everything looked remarkable!

What if some of my medications were part of the problem? I have had good stretches or was in "remission" of  3, 7, and 15 months, with very little symptoms basically just nausea mostly due to high blood sugars. My doctor thought it would be a good idea to look at my meds ( lyrica, amitryptaline, zofran, nabilone, domparidone, pantoloc, depo pervera, diludid or morphine, and reglan only in hospital) to see if any were doing more harm then good. I had been off my meds for a month from not being able to keep anything down so it was a good time to go, or stay, off of them and most of the meds should have already been out of my system. We looked into all side effects that I could be having from anyone of my medications. Interestingly enough all but one med, diludid, caused nausea and vomiting and half of them could possibly cause abdominal pain. I completely agreed with my doctor doing this because in the 6 1/2 years that I've had GP no doctor has ever wanted to try this approach and especially since I haven't been doing that well I was all aboard on the idea. I am still on zofran, nabilone, lyrica, domparidone, pantoloc, diludid and my doctor added buscopan. So far I'm doing good with new doseages of a couple meds, the adding of buscopan, and the discontinuation of a few.

My sugars during this time have gone from one extreme to another. When I am not on TPN my sugars are fairly stable. However when I'm on TPN I can have severely high sugars so I make adjustment on my insulin pump and/or more insulin is added to the TPN. At one point the doctor had me double the amount of insulin in my pump which worked for a few days with stable sugars. But then I started having super low sugars multiple times a day which is real scary. I got it figured out after a few days of lows. My sugars are stable now.

Things are starting to turn around. I was discharged from hospital on May 17th and I'm doing well. only eating a clear fluid diet with ensure ( I just introduced ensure into my diet, hopefully it stays down!) I have had little nausea but no vomiting or pain. I have very little energy or strength but I am working on that every day by going for walks and doing yoga. I am taking my diet very slow and not rushing to try news foods to fast as that could bring on another episode. Praying I continue to due well and another good stretch is on the way! :)