www.incontinentsupport.org

A week ago during freaking snowstorm, I fell really ill and found myself once again back in the all familiar ER. I had prepared myself for a long night in the waiting room. Its flu season and snow was quickly falling. Much to my surprise I was taken back in under 2 hours (unheard of. The average wait time people were being told was 12 hours. Also not a great sign when you are taken back that fast!)

Lots of blood was taken as well as a urine culture from my SPC. Culture came back positive for a UTI and the kicker is I not only had that but an infected abscess on my stomach (I have an autoimmune disease where I get abscesses all over my body). The dreaded words "we are going to have to admit you" were uttered. Damnit. I always get my own room (woohoo!) But that meant waiting until 7am the next morning for a room to become available.

Fast forward to when the type of bacteria was found.....an antibiotic resistant one. Of course! This bacteria responds to only one IV antibiotic. They started me on it right away. After 2 days I was cleared to go home, but would have to continue IV antibiotics at home. A mainline IV was placed in my arm and I was sent on my merry way. Because insurance sucks, they wouldn't cover for a nurse to come do it, I had to do it myself! I was given instruction, but it scared the crap out of me. After 3 days of panic attacks while injecting antibiotics into my own vein, I finally did the last one on my own on Wednesday without freaking out.

The IV comes out Monday and I cant wait. I hate this thing.

The SPC is quickly presenting challenges, but with my bladder being dead I don't have a choice short of removing my bladder which docs say I wouldn't survive.

Ugh, to say the least.

I have had some medical issues this past year, but nothing compared to your challenges. I feel helpless to assist you, and hope that venting here among friends will suffice. Again, I look forward to being an empathetic responder as often as you need one.

Thanks Patrick.
Sorry for being so random with my posts. I just got home yesterday from yet another hospital stay, this time I was there for a week. They think I have gastroperesis, which I believe you have, correct? Do you have any tips on dealing with it? I only was able to eat once when I was there (some soup).

Yet another medical diagnosis I do not need!

Gastroparesis can be annoying, or lethal. Usually, untreated, I will develop a blockage high in my GI system, which makes me vomit fecal material. Not lethal, but definitely exasperating. Other times the blockage develops farther down the descending colon; diarrhea develops up stream from the blockage, seeps past it, and I soil myself. Either way, I'd better be wearing protection. I manage it with BeneFiber at breakfast, and erythromycin, alternating weeks with metaclopromide, because long term usage with either of them can cause really bad side effects, and/or ducosate sodium, which my GI specialist dislikes, and enemas and suppositories, as needed. Gastroparesis can be lethal when the patient's vomit blocks his/her airway, so it must be taken seriously. Diapers are absolutely necessary for managing gastroparesis. If you live alone, and must deal with GP, my heart goes out to you. Keep up our conversation, and I'll contribute what I can.

I neglected to include incontinence management with GP. Fecal leakage, because it contains digestive enzymes, is much more threatening than urine to skin. Immediate clean up after leakage is necessary. To facilitate this I keep my diaper area shaved and wash frequently. I also use Desitin or another skin salve at every possible change.

I was recently on oxycodone for a couple of days after hand surgery. This twice caused me to have liquid diarrhea that I didn't know about until I later went to the toilet. It was then that I became aware of how caustic the effect was on the skin.

My heart goes out to both of you in your extreme suffering.

Wayne,

Thank you for your concern. I do not see myself as heroic; I am not a medical professional, and I hope that I do not come across as a hypochondriac. I am merely an experienced patient. I remember when, after several embarrassing exams, my then gastroenterologist smiled and sent me on my way, with some scripts and not a bit of discussion about what I needed or should expect. Then, following my cardiac surgery, my gastroparesis acted up. The staff who cleaned me up were not happy. Being able to vent here makes a huge difference in my relationship with my family, and makes my life much easier.

Patrick - I can definitely relate to hospital staff not being thrilled with cleanup. I had a few episodes of diarrhea and they wouldn't let me go to the bathroom since I am an amputee wheelchair user and a fall risk. They had me use a bedpan (who in the world designed those, they are terrible!) And the nurses had to do the dreaded cleanup which was embarrassing as hell. I finally convinced them I could transfer to my chair on my own.

I second your criticism of bedpans. Diapers serve the same purpose, but are far more user friendly.