I apologise to anyone who may be frightened off by my description of my experience. This is not my intention. My case isnt a run of the mill case with all the complications. We are all different and experience things differently. I have written my post because I read many different posts before my surgery. Very few people write of their true experience, and how it affected them. Maybe the fear of scaring other people off surgery? I am writing a frank and honest account, not to whine, or moan. But to show that in spite of my journey through hell and back, I didn't give up. I wont. The name of my post is a mix of an ileal conduit and a Neobladder. It was my pet name for my Neobladder due to the leakage and stoma bags needed.
After I awoke from surgery exactly 14 days from the first, I experienced alot of pain. I remember nothing after the first op. The reason for the pain being the fact I didn't have the local anaesthetic catheters in the wound, no spinal, and I had been already on a P.C.A for two weeks. Also their was no Ketamine to put me into lala land:) I woke up with a nasal gastric tube, which in a way was a relief. That didn't annoy me initially. The next day I got up to walk at the astonishment of the nurses. For me I was going right back to square one again, and I needed to mobilise.
The next few days I waited for my stomach to return to normal. The nasal gastric tube rubbed on the back of my throat, and the nurse would aspirate on regular occasions. This time the removal of the surgical drain was a non event thank god! I was still on T.P.N and the weight was still dropping off. My daughter came in almost daily after school, we would lie on my bed watching dvds on my lap top. I would get up and go on walks with her downstairs into the sunlight. It was summer and generally it was beautiful outside. My daughter only 9 years old has an old soul on her. She has a wise understanding about life. She is incredibly sensitive, affectionate, and intelligent. I had to really watch myself around her, and show strength, even through the pain. My abdomen swelled up again after the nasal gastric tube was removed, and it took a week for me to even have a bowel motion. This was due to intravenous antibiotics. My wound spontaneously opened up, and was oozing. Yuck itt had to happen just while I was walking downstairs with visiors. I couldnt see the wound because of the dressings, but it had oozed through my nightie. So I shoved a towel up my nightie, slung a blanket around my shoulders and shuffled off downstairs. As soon as I got back to the ward I told the nurse. It wasnt to bad. The worst bit was when The registrar D decided to open it up some more, then It had to be packed. I kinda didnt keep my cool then as I was extremely over sensitised. Because of the nerves no longer being around the wound, it actually wasnt even painful. My bowels took a good ten days to settle. Constant irrigation of my two catheters still continued. At times I still felt as though I had a stell belt around my abdomen and back up near my kidneys. I was weaning myself off the pain meds the best I could. I wanted to go home. I would talk to the other paients on the ward, encourage, and help out at times. I was fully independant getting my own equipment as needed. Finally I was allowed to go home on leave. It had been nearly a month That I had been hospitalised. My older son suffers with A.D.D and Opositional Defiant Disorder. He suffers from anger problems, and other wonderful behavioral issues. In spite of this he is intelligent, has a great sense of humour, and can be pleasnat at times. Regardless it can be a challenge dealing with a moody teen let alone a teen with mental health issues. He was symptomatic from a very early age, but I only was given help with him in the last two years. He had a new girl friend while I was in hospital, and he appeared to be coping well at home. Almost consumed with the responsibilty. My younger son who is nearly 15 is a quiter, shyer lad. Into his hockey and rugby, and he is wonderful with the animals, and my younger daughter. I missed them all. When I went out on leave, I went shopping with mum to get some new clothes. I leaked alot from my catheter sites, and needed many new clothes. I hit David and Golith hard. Loving all the politically incorrect aire. Life is damn short to whine about political correctedness. The news feeds us garbage every day, so much negativity, we need a good laugh. Or just sit back, become cynical hard, and negative and give up. I myself have had a hard journey in life from the word go. I have over come many hurdles this was another. What sruck me was my vulnerability at that time. I still had C.V.P lines in, and people stared. hey wouldnt even serve me in some shops. But I didnt care. I was alive, and I was going to be at home. The kids had tidied up, with the help of my sons g.fs mum. The house looked lovely. Being an anal retentive I couldnt relax unless things were in their place. Must be a virgo thing.
That night in he hospital I realised with a thump to the head that I was scared. Scared at my energy levels. How exhausting every thing was. That night I paced the corridors trying to relieve my pain naturally. Through distraction. The next few days were challenging. More later.:)