New person story

[rds70123]

Hi. I am acaregiver for a wonderful person ive loved for 26 years. we have been through a 2 year nightmare. I just needed to post and get it out some. First she doesnt have ibs or crohns. She has had UC Approx 1.5 yrs ago. Heres our story. She had bladder cancer in 2013. Rad hysterectomy and bladder removed. Copd patient so she could not get off the ventilator being so weak. Within 1 week white count went up no explaination. Next stop was a good LTAC and antibiotics. Time was up and got sent to nursing home/weaning facility. It was the worst place on earth But with good physical therapy. She healed some and we were making progress on weaning. Then we got CDiff. It was a 5 month nightmare. During that she got ulcerative colitis. We developed at least one fistula; maybe two. One is rectovaginal the other is subcutaneous i think its called/ drains infection out of her side. Went on anti biotics for month for fistula and cdiff. Cleared cdiff almost year ago but still havr fistulas and monthly uti's. Its a mess. Because of the weakened state and recurring infections she can never get strong and cant get off the vent. No one will operate in any way. It likely would kill her. We are making it this way but sadly it looks like this is what we have. I took her home 6 months ago from the hell of a nursing home. What has me down is dr's have given up on her. We actually have a housecall dr who comes here. I found out he doesnt want to do anything but manage her IE... Antibiotics as needed(until she gets resistant and dies). This is all that can happenin my view. Is disheartening. We are holding up right now. Dr's dont know half what they think they know. When this all started she had blood in the toilet. Primary played around over 6 months with antibiotics when she should be checked for cancer. Who knows if we could have removed or fought the single tumor in her bladder. We will never know. I know many here are in pain and missury. I pray for you all. Thank you for reading.

 

[Ali29]

Welcome - so sorry to hear the horrible time both of you have been through. I pray that a wonderful kind compassionate educated doctor comes into your life and can give you both some relief. You will find this site so helpful and friendly - even a place to vent. So many people have been through terrible times and have a wealth of information to share.

Good luck :ghug:

 

[Honey]

Hi there,
I am sorry to hear of the difficult time your friend is having, so much suffering. What a wonderful carer you are! I do hope you get good support from someone, it may even be just sharing your thoughts and feelings about it on this site. Illness, and dealing with illness can be very isolating. I found this site helped me when no one else was listening to how I felt. So keep in touch and let me know how you are. You are in my thoughts and prayers. Best wishes. :rosette1::welcome::rosette1:

 

[rds70123]

Thanks to both of you for your kind responses, It helps. There are many things left out above but thats the jist of it. Its almost as if insurance has something to do with the drs decisions. Almost like someone categorised her. All drs involved have mishandled her. I dont know what to do. I have never given up On her. I had to grow up allot when i saw how drs treated her and the decisions made by hospitals etc... Its not always nice. We have had several drs who tried to help us as well. If she has to go to hospital they only get the white count back up and get us out. In my mind if we stop the repeated infections then she can attempt to go forward. The routine usually is we start getting fever, go to er, get diagnosed with uti and sepsis, and get high powered antibiotics. We go home, it happens again. Its amazing how shes held up. Also the fistulas play a role. once shes sick everything puts her down at one time. She has an ileal conduit in place of her bladder. I just started looking into the ostomy bag being a possible cause of the infections. I would love to prove everyone wrong on their "diagnosis". I know its a human body but i think there is a cause and a fix to everything we are seing. The drs are so quick to give up. It really shocked me to see that. She did not help herself by smoking her whole life. She quit 15 years ago but damage was already done. Copd is very hard to deal with. Thats what cigaretts will do for you. I am glad to be with her. It was a life change event. I quit my job and moved in to take 24 hour care of her. Thank you guys for caring enough to respond. God bless you.