Posted 8/18/2007 12:28 AM (GMT 0)
Hello everyone,
Most of you know my issues I have had this year with CD. I have had CD for 20 yrs and my ileum perforated in February, I had emergency surgery, they resected, removed my appendix and a fistula that no one was aware of...not even me. Did well for a few days then went downhill again more CTs revealed toxic megacolon...(I have had 17 CT scans just from Feb 11 07 alone). Had more emergency surgery and got a temp ileostomy. Stupid resident let feces get in my incision (twice) and after me asking she said it would be fine and wouldnt need any flushing...got incision infection and introduced for 4 and a half months to a wound vac. Readmitted 2 times after ostomy Sx due to abdominal abscesses, wouldnt go away totally had reversal surgery in June, removed abscess, removed more lg and small intestine, removal of mult adhesions, scraping of infected abdominal wall, and reversal. Localized infection from suture growing in and removing itself by way of popping like a zit.
The day my infection appeared (the recent one) my nana went to the hospital by way of ambulance. 2 weeks before she went in for not feeling well they Dx TIAs (mini strokes). A few days later she fell (she has severe osteoporosis and already had compression fractures) and caused another compression fracture., My nana had stopped eating and the keytones were noticed on her breath. This was what sent her via ambulance. They found she had the TIAs which we knew, also she was now having seizures, then a UTI. Ate very little while in and also got Dx with Alzheimer's Disease (middle stage she had been forgetting things for a while but was to scared to find out more about it so she let it go...after her Dx and successful treatment for breast cancer every Dr appt scared her. It took her over 1 year to get annual bloodwork done due to her apprehension; she had a nervous breakdown not long after her mom died in the late 80s caused by hypocondria. She has been in a nursing home for 15 days now. She has gone off adivan and paxil (very rapidly at the hospital those which she had been on large doses and for a while) They gave her different meds for anxiety that is better for those with AD. Both in the hospital and at the NH no one was brushing my nana's teeth, she has some left on the bottom dentures got cleaned just not her natural teeth. She was complaining of her mouth hurting, my mom has sinced changed professions but she use to be a dental assist. My mother at this time noticed oral thrush and brought it to the NH nurses attention. This also progressed into a vaginal yeast infection too, she was on cipro for the UTI. Yesterday they placed her on diflucan now in additioin to oral nystatin swish and swallow. It was painful for her to eat and was drinking very small amounts of ensure...I think she may eat 4 times a week. She fell last night out of the chair she was in no one knows if she was standing or slipped out of the chair (regular chair she has been walking with a walker and PT have been working with her) she had a fever last night of 101.4. Thos morning she still had a temp of 101.3 and her O2 level was 90% so they put her on oxygen. They did bloodwork a chest xray and urine C & S and found that she has pneumonia in both lungs.
My papa's oldest brother (my papa is going to be 80 this year, his wife is my nana married 58 yrs he cries daily and holds her pillow at night) is back in the hospital unable to swallow, breath, talk etc they found a Dx and are able to treat it with steroids. They had to do a trach the other day but with recent treatment he is improving slightly.
Our cousin (my nana and papas nephew) passed away 2 months ago from pancreatic cancer he was 52.
Also new today...nanas pneummonia was Dx today...My great uncle Francis (my papa's brother in law) didnt feel well chest hurt sat down in a chair and died today.
My papa is one of 8 children his youngest sibling passed in early 1996 (he was in his 40s) then his oldest sister passed in late 1996.
I just dont know much more stress this family can handle. My dad doesnt have that much stress at this time as far as his side of the family goes. His dad passed away in july 2001, 3 weeks later his mom passed. He has 3 siblings one older brother 1 younger, and a younger sister. His older brother had a heart attack 2 months after their mom passed (luckily he is still around) then March of 2002 (my dad was 49 at this point) he had a heart attack again luckily he is also still around.
I just hope next wednesday when I stop my Fentanyl patch I wont go through severe withdrawals I have been decreasing the dose and am now down to the lowest dose available transdermally. I will still have more patches at home if I need them and I rather stop when I know I can contact my Dr and actually hear back from my Dr as opposed to an associate who doesnt know my case as he does. I am about ready to pull my hair out I am so stressed.