Hey all....
First and foremost I love all of you with every beat in my heart and every inch of my soul for caring for someone you have met through writing and texting, but never in person. I just want you to know I have never taken for granted the research, ideas, or wisdom you all have given me and I have advocated for many things becuase of you girls. I feel like your my family and although not one of you have a k-pouch you still try and understand me.
My surgeon did leave out of the country shortly after I saw him Thursday. I was ok until Fridat evening when I went to empty and nothing came out (not even the water I was flushing the tube with). I started to feel very ill and by 10 pm it had been four hours and I knew something was not right and my belly felt rigid so I called Clevelans. I made the resident call the on call attending surgeon explainng that eventhough I live in a great area for medical, I do not for the k-pouch. He did and called bacl 10 min later and by this time it was almost 3 am ( I had last had output at 6 pm) and they told me to go to the local ER and be airlifted to Cleveland as I needed to get there and could not drive five hours. I went to the ER and was evaluated quick, started an IV and given some pain meds. The ER docs called Cleveland and before I knew it I was kissing my hubby goodby (they have no extra room) and was on top of the roof in a helicopter. I am scared of flying and was in terrible pain so they half sedated me with dilaudid and versed. It was an hour and 30 min flight and I was there. I was examined and looked over, but not one test was done until 5 pm....this was 24 hrs after no output and I was miserable. So what do they do...inject about 500 ml of contrast into my pouch. I was dying in pain and crying, but the xray showed the balloon that was holding my tibe in place had moved against my pouch wall and was acting like a obstruction (hence all the same symptoms including a fever). My husband was irrate they were taking so long when they were so worried of perforation or more damage to the pouch and valve. I then had a CT ordered by the doctor covering for my surgeon and again more contrast. I was NPO the entire time except for the contrast. I felt so sick, but the test showed my pouch was intact (a bit swollen and full....no crap!) and so they finally about 2 pm deflated the balloon and pullled the tube and dtool, blood, pus, and contrast came pouring out of my stoma. The stoma nurse and doc tried to stick in another tube but could not so I mentioned trying my catheter I use at home as I had brugh an extra since it was stiffer. I was able to get it in when they couldnt and the nurse secured it and hooked it up to a foley bag. By this morning I capped off the tube and have just been emptying every 3 hrs like before, but the pain from them prodding me and keeping a tube in for over 24 hrs and keeping stool in me from 6 pm fri until 3 pm Sun was horrible. I will be admitted May 6 if all goes well until then and surgery is May 7. I asked about an ileo, but at this time my surgeon does not want to give up on my pouch and is hoping my body will have less complications and heal better and so am I, but if not I know I still have the option for an ileo as they will not need to use more of my small bowel since it did not perforate as they were worried.
As far as my rheumatologist. He does know about my motility issues and even called my surgeon at CC to make sure I could be started on steroids. They are helping, but I still have swollen joints and pain every morning and much less strength in my hands esp and hips. I will talk to them about the biopsies, but they all know why I am on the steroid and never mentioned anything....i will ask as it cannot hurt. I am not sure why I am still running low grade fevers....that was even on Levaquin the ER put me on....since all this happened I have not had my labs done from Rheumatologist yet, but going tomorrow am and making a follow-up with him a few days later.
My mom is home and I am so happy....i feel so safe with her and my husband both here and I can spend all day with her. She feels I lost more weight with this hospital stay and that my color looked gray. I am very cautious of eating which is not helping in the gaining before next surgery, but I am doing my best with the vitamins, minerals, and protein adam is adding to my sugar free pudding and strawberry/lemonade shakes. I do not get the calories, but at least the good stuff. I think I am probably about 97 lbs and have time to work on that if all goes wellw with this tube.
I thank you all for caring and really would fly anywhere to all meet in the middle or if you all live closer I can fly to you, but I want to hug you all in person and spend a weeekend together someday....we have to make this happen. You have become family, friends, and so much more to me and without you I could not be the person I am.....you are my angels sent to protect me and I thank you for that. For now....please pray for some peace and quiet....no er, co sero-med, no obstructions, etc before May 7! Pray for my husbands strength and know I do the same for all of you each night. I care so so much for you all that words cannot be enough. You all have my number and can call or tect anytime. I usually always have my phone, but sometimes I just feel to weak to talk all day so I text alot.....get on that Rosemary!!!!!! haha....nah it was great to hear your sweet voice. I cannot sleep from pain, but going to take some more meds to see if I cant get to bed. I had a long day with my sister threatning suicide and begging my parents to take her child and adopt him since the court terminated her rights indefinately and there is no father in the picture. Its just been an extra stressor I cannot deal with. If I lost her....not only would it destroy me, but the pain it would cause my parents would kill me even more. They have given their lives trying to make her better and she justdoes not get it. I spoke to her for an hour tonight and explained she chose cocaine over her son and she cannot see that picture.....the poor little guy has is coming back to my parents tomorrow and I hope this all gets sorted soon. She took 40 ambien the other night and called my mom to say "good-bye" and I told her that life is not always fair, but drugs arent the answer to fix the times when your falling....I would be dead by now. I am trying to help save her, but I know I cannot...its exhausting. I just do not want her to die and feel I did not do enough. Argh.....see this is why I do not sleep.
Amyways....have to empty my tube....hope it works. Love you all. Sorry for the lengthy email.
Lizzie