Chronic Invisible Illness: When the Unexpected Happens

Something I have learned over the years of chronic illness is that the only predictable thing about illness, is that it is unpredictable. This held true with a recent procedure. I was scheduled for an abdominal gastrointestinal surgery to repair some issues due to lax tissues from Ehlers-Danlos syndrome (EDS). The surgery went well, my surgeon was pleased. He took extra precautions because of the EDS. We knew I'd be in the hospital anywhere from a few days, up to a week. Well, at a week, I was still in the hospital, no closer to going home. I was struggling with being able to advance diet back toward normal, but this needed done before I could go home. As days passed, I struggled more. I eventually ended up back on clear liquids only (first stage of trying to advance diet). I also was getting more abdominal pain, more bloating/swelling, spiking fevers at night, etc. My surgeon was watching me, checking labs, ordering abdominal x-rays, etc. As I continued to struggle, he had me started on IV nutrition to help support since I was not eating enough. IV nutrition requires placement of a PICC line (peripherally inserted central catheter). But, once the PICC line was placed, then labs could be drawn from it rather than being stuck each time. (And, why do hospitals think 4 am is a good time to draw labs and turn on the bright overhead lights?) Anyway, surgeon ordered an abdominal CT scan. Once he had those results, he came by, said he was planning exploratory surgery with goal of being in the OR in the next hour....this was a Saturday morning. Wow! It was a lengthy surgery. It turns out I had a perforated bowel and that all needed cleaned up, damaged part of bowel resected. I did not wake from surgery until middle of the night so had no idea what all had happened. I knew I woke with even more tubes. I learned I was in ICU, not back in the adult inpatient unit I had been after the prior surgery. I was on oxygen, CO2 output being measured because of being on IV morphine, had a nasogastric (NG) tube suctioning (gross), numerous IV lines for nutrition, antibiotics, fluids, various medications, morphine, etc. They wanted me up walking, but I was so weak, light headed, unstable, that we ended up with a walker for stability for me, two people going with to help with the two IV poles, oxygen tank, being able to hold onto me via gait belt, etc. We were quite the little parade. 

This second surgery really wiped me out. I go into every surgery as strong as possible physically, mentally, emotionally. An emergency surgery left me no time to prepare, plus I was already physically weak from the prior surgery, difficulty eating, infection, etc. It took work to try to find the positive. it took work to choose to smile. Once I realized how close of a call I'd had, I was grateful to be alive, grateful to be well cared for. I knew no one wanted what had happened to happen, that all were trying to help me get well, that all were rooting for me to go home ASAP, and hopefully in time for Christmas. My surgeon was super strict one morning about the compression stockings. We explained I had pressure sores starting. It turns out that was the morning my platelet count spiked critically high. We found a compromise of using the calf compression sleeves, but no compression stockings. 

I was certainly deemed complex. Apparently healthy looking when admitted initially, but prone to pressure ulcers, struggle to recover from first surgery, need second surgery, struggle to recover from second surgery, etc. White count very high, platelet count very high, heart rate high. Cardiology and hematology called in. 

After the second surgery, I struggled more with back pain, neck pain, and shoulder pain. Physical therapist was there to help take me for walks, but he helped problem solve positioning for me to try to relieve the other pain. Through trial and error, figured out how to sort of mimic cross between my zero gravity chair and my pillow nest in my bed at home. That helped. It was still very hard to sleep. However, more than one nurse commented on how comfortable my "nest" looked. 

Progress was counted by removal of tubes. The one I was most excited to get rid of was the NG tube. I had started gagging on it for no reason by the time it was pulled. Removal was not fun, but so glad to have it gone. It still sort of felt like it was there for another day or so. I was not really claustrophobic, but had gotten so I did not want any face tubes snug, kept loosening oxygen and CO2 lines. This was partly because of nausea that was severe at times and anything close to my neck or nose/mouth made things worse. In fact, some nurses let me have a break from the CO2 tube when nausea was at its worst. The last lines to go were the IV nutrition, IV antibiotics, and I think one other. Then, I was finally allowed up by myself! I could take myself to the bathroom without help! I could take myself for walks in the hallway by myself! My nurse said she did not care where I went as long as I stayed on the floor and out of the critical section of ICU. (I was in a step-down ICU, but all of ICU was the same floor). 

The recent events may seem like not much good happened. However, I am alive, had excellent care. My family was supportive and kept me going on days when I wanted to give up. I also had the opportunity to educate various other providers on EDS and mast cell activation syndrome. Although, one evening at shift change, when the day nurse was explaining to the incoming night nurse what was going on with me (lengthy process). The night nurse asked me what type of EDS I had. Most asked what EDS is, are not aware there are multiple types. So, I knew she knew more. It turns out she has a child with EDS. 

Something else I learned. I may be a dietitian, trained in nutrition, know in theory how to advance diet post-op GI surgeries. However, that does not mean all bodies respond well to standard protocol, and mine certainly did not. Plus, it is impossible to be fully objective with oneself. Also, if sugar, artificial sweeteners are recommend against early post-op, then why do the standard supplements used right after surgery contain so much sugar, or other suspicious ingredients? I avoided the supplements after second surgery as I was afraid of them after what happened after first surgery and trying to use them to keep protein intake up. It helped I was on IV nutrition for second surgery, thus had less pressure to rush advancing diet. Also, one of the most helpful pieces of advice I was given early in trying to start eating post-op second surgery was by my surgeon. He said if it sounded good, try. As crazy as it sounds, the first thing that actually sounded good was tomato soup. This is also the first food I successfully kept down. So, it became my "safe" food that I ordered every meal in addition to whatever I was trying next. Mashed potatoes were another early "safe" food. I tend to come from an intuitive eating perspective, but also science-based. These often go together, but not always. Tomato soup did not really make sense as a good first food, but intuitively, it worked. I also learned that one can pick and choose off of a hospital menu. Just because an entrée comes with specific sides per the menu, does not mean one has to have those sides. I did a lot of substituting. Otherwise, I was leaving a lot uneaten that I was not ready to try yet.  

This whole situation was quite the learning experience and I suspect will continue to be for a while. I am grateful to be home, to be sleeping better, no more blood sugar checks, insulin injections, lab draws, Lovenox injections, etc. I am still thin, weak, tired. I have a lot of healing and recovery ahead of me. It is hard to be patient. Eating, walking, self-care are tedious, tiring. But, these are my tasks for now. I have regained strength, weight, and muscle after other surgeries. With these surgeries, the loss is more global, but I can regain again, even if it takes longer. I am choosing to move forward with hope. Hope that recovery goes well, hope that these surgeries give some amount of relief. 

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