I just took a second to read my last entry. It was over 6 months ago. Wow- it seems as if I knew that day just how hard this battle was going to be. It has been worse than I imagined. Since that last post, I did not endure 1 major surgery and one life chance... I have endured 8 surgeries, 11 hospital stays totaling 82 days in the hospital since 2010 started,) and dealt with many obstacles along the way.
Let me sum up my last 6 months.
The illeostomy placement/resection was, indeed, done on 1/29 as scheduled. It did not go well and there were multiple complications that Short Bowel caused that were not expected. We didn't know just how little of my intestines I had left. My surgeon who had told me I had minimal time left in 2008, now said we were at the peak "looking over." I thought, "Wow- not good news- I am only 40!"
The fistula remained an issue and I had 2 repairs done to try to repair this issue that was going to inevitably cause me to become septic. No success here.
After 3 months of hell with an overactive ostomy and challenges with infections, I changed surgeons and had to go through a second ostomy placement.
If this was not enough to deal with, my kidneys became involved. I had 2 kidney surgeries as well.
To this point, I had somehow remained as positive as any human could be. I had already lost my position at work (and was the breadwinner of the family), but now my disability had also run out.
June of this year, I truly hit rock bottom. I was no longer physically strong and now not mentally strong either. My kidney stent had became calcified (but we had no knowledge of this) which caused me to stop eating and drop 25 pounds in the matter of a month. On 6/10/10, I left my home to be readmitted in the hospital, and was not sure if I would ever return. I truly thought I was facing death. The hardest part is Dwayne did too.
Once I had another kidney surgery in late June, I began to come back to life. My mentality was good, I began eating again, and started gaining weight back. I still had complications with my blood levels, nutrient absorbtion, strength, etc. but I wanted to be alive again and this was an improvement!
Now here is where I am... Medically- The fistula to date remains repaired. (3 months and counting) I have started losing weight again and weigh in now at 112 pounds which at 5'6'' is not good, I take all liquid or IV meds to help with absorbtion, I still have the illeostomy and the overactive output. I have not had more than 3 hours of straight sleep since Jan, nor do I see this changing in the near future. I have surgery next week to place a permanent port to allow TPN at home (IV feedings) and all nutrients and fluids daily. NEVER SAY NEVER- Boy have I learned this! Financially- well priorities have certainly changed even more now. We are trying to make the most of every day and build GREAT memories while we can. The bills are challenging to say the least. There is nothing we can do to fix this right now. We hope to stay in Lake Dow as long as we can- but if we can't- we will be happy together somewhere else.
I am trying to fit in anything and everything I feel up to even if I push myself to do things. I want to live life to the fullest. BECAUSE I CAN! that is the new motto. "There is no way out but through"- and I am going to live every day as full of life as my body allows me to. Time to change me for the best.