Enid’s Tale- Hautmann Neobladder

My story starts with a visit to my IM doctor complaining of a lump in my upper right quadrant of my abdomen. It had been there for about 2 years off and on, since at times it seemed to disappear into my body. It didn’t cause me any problems except at times when I bent down or over it seemed to be in the way. She gave me the usual tests blood work urinalysis and chest x-ray. She felt the lump and said it felt like it was part of my intestine but that we would check it out father. I had a lower GI series done and an abdominal and pelvic CT, a pelvic sonogram. They found nothing. The surgeon that I was also sent to said that I had a mobile kidney and that was what I was feeling. My urinalysis came back with microscopic hematuria. My IM said we should do another test in a few months. We did and it was negative. Then I started to notice a slight pink on the toilet tissue after I had gone to the bathroom. I really don’t think that if I hadn’t been a photographer with a keen eye for slight variations in color I would have noticed it was so light. I thought I was seeing things…but then I saw a drop of bright red blood one day after I got up from the pot. I called the doctor and she had me do another urinalysis that said I had a urinary tract infection…. I had none of the symptoms, burning etc. I took the pills and forgot about it for a while.

Then my IM decided she wasn’t going to take insurance anymore and I had to find a new IM. By that time I had seen more blood in my urine and was also feeling like something else was going on. I went to see my new IM and told her all that had happened so far. She sent me to an urologist and he told me to get an IVP because the blood could be coming from a stone. This I did and the IVP showed a small calcification in my R ureter. Once more the answer was found and I believed it for a time. Then my intuition kicked in and I started reading on the net about blood, and bladder cancer. I had been noticing that the debris that was coming from my bladder seemed like bloody pieces of skin…. like scabs from a healing wound.

I went back to the urologist and told him to look further because I didn’t think I had a stone. He took me in the next room and did a cystoscopy. He said I can’t believe it but your bladder dome is covered in tumors. The following week I had a TUR…my first operation since having my tonsils out at 6. Here I was at 54 with no prior illness or any reason to go to the doctor all my life with a disease that affect less than 2% if the population. After the TUR we waited for the results of the biopsy. I fully expected to hear that the tumors were benign, but they weren’t. I had 2 kinds of cancer, carcinoma insitu and transitional cell carcinoma. The carcinoma insitu had adenocarcinoma like appearance so they said it was aggressive and I needed to think about bladder removal. My doctor was matter of fact about it and I remember feeling numb as he talked about it to Jim and I. It was so matter of fact, that I had cancer and that the cure was to have my bladder removed…. that was that! My doctor was young and I liked him very much he had an air of assurance about him that convinced you he knew how to fix the problem. He had been trained to perform what they call an orthotopic neobladder and he could make me a new bladder out of my small intestine and hook me back up normal. He made it sound so easy….

We walked out of the office in a numb state. I had cancer and they were going to take out my bladder and then it would be fixed. The next few weeks were spent dealing with the emotional issues associated with my mortality and getting a second opinion. I went to 2 more urologists, one in town that also did neobladders and one at Vanderbilt U where they did them every week. Everyone had the same opinion my bladder had to come out. In the end I choose my local urologist because I had confidence in him and he had been trained at Vanderbilt. Even though I found out that he had never done a neobladder on a woman in private practice (he had done them working in another practice with another doctor) I choose him. I wound up having it done on Friday the 13th and it was also Good Friday, which seemed to me to be very auspicious, given the symbolism of the day. His wife was about to deliver her 3rd child on that day and he told me that he told her that if she had the child that day that he could not come to the birth because he would be in surgery with me. I did her biorhythm and told him that she was going to have the baby on Easter Sunday and she did.

I have a Hautmann neobladder, made from my small intestine and hooked up to my urethra and my ureters. I had the surgery on April 13th. It took 8 hours and I was in ICU for 3 days because I had a hard time with the pain medication. I am very sensitive to medication but I didn’t know this since this was the first time in my life I had anything wrong with me. I was in the hospital for 7 days with all the standard tubes. My husband stayed with me day and night (they have hospital suites where I went) and thank God for that because he did everything.

I had a big problem getting my appetite back and I lost 22 lbs. I think because of not eating I developed a chemical ulcer and that further complicated things by making me not want to eat because of the stomach acid. I had to go on a proton inhibitor for 3 months to get that fixed. Later I found out I had sensitivity to Levaquin and that is what caused the problem. That was by far the worst thing. I didn’t have much pain from the surgery; at least I don’t remember that part. The tubes you get used to and also you lose all your inhibitions. I never thought I would see Jim flushing out my tubes or catheterizing me. Also people would come a sit when I was in the bathroom while I would go and talk to me at home like I was in the living room. I had very painful bowel movements for about 1 month, lots of gas and belching. My stomach felt like it was part of someone else’s body. Now it is beginning to feel like mine only it is shaped a little different.

I was very weak for about 2 months…then I started walking up the hill in front of my house every time I had a good day. I spent many days crying because of the eating problem (and probably the hysterectomy)…I know what it is like to starve to death now and it is very scary. I got so thin I couldn’t look at myself in the mirror. I weighed 136 when I had the operation 1month later I was down to 112. I now weigh129. Needless to say as soon as I could eat I ate everything in sight.

My neobladder seems to be working the way it should. It still makes mucous and even though my doctor says it will stop at some point…nobody on this forum confirms that. My cancer was confined to the bladder and mostly on the dome so they could give me an orthotopic neobladder. I am not continent yet. I have been going to biofeedback for 1 1/2 months and am doing Kegels. I envy the guys on this forum that seems to have become continent so quickly after their surgery. I hope the Kegels work soon.

I am thankful that I had the intelligence and intuition to pay attention to my body and not let the doctors tell me it was, just a kidney stone, when I kept seeing red particulate in my urine.

I am glad they didn’t try to treat it with BCG cause I don’t want to keep dealing with it for years and after reading this forum, I see people have to go for several rounds sometimes before it is all gone.

I know I made the right decision; I have a great doctor. I have learned to take it one day at a time and give your body time to heal. The people on the forum are so supportive and I don’t know what I would have done without them.

My husband was incredible during the whole experience. He took over everything at home and did everything for me that I couldn’t do myself. He was so frustrated when I couldn’t eat. It has made us a lot closer.
Also my friends supported me through this and we set up a healing circle before I went into surgery and one of my friends kept everyone informed via email during the months that followed.

I’m still healing emotionally and spiritually from this. I know there is a connection to the physical and I need to pay attention to that aspect of my healing. I need to reconnect with my body at a deeper level and open myself up to all the love that is around me. All my lessons in this life seem to be about me letting other people into my life and allowing myself to love and be loved. I am grateful for the continued chance to work on this that this surgery has provided me. I hope I can make a new beginning with the rest of my life and spend more time on the things that count…. less time shopping…if you know what I mean.

Since writing this about 4 months ago I have had some complications of the surgery that I’d like to tell about. The mucus problem is just that a problem that has to be resolved if your bladder is going to function properly. Also I went to a biofeedback therapist that was supposed to be knowledgeable in aftercare for neobladder patients. After several weeks of that therapy I was still incontinent. I felt like I had a large hole in the space where my bladder meets my urethra. I know my doc did nerve sparing surgery but I had residual leg and feet pain and this big empty feeling in my crotch area. I am now getting urodynamic studies done to help determine just what is going on in my new bladder and what might be the cause of my incontinence. I am 11 months out. I have varying amounts of mucus and have been doing saline flush with a catheter on an average of once a week. 3 weeks ago I got an aggressive kidney infection and had to spend some days in the hospital. My uro thinks I gave it to myself with the catheter, or possible urine reflux into the kidney from the saline flush. I don’t know what caused it but I don’t want another one I can tell you that.

My most recent CT showed that my kidney and ureters all had hydronephrosis….meaning they are enlarged because of back up of urine into them from the neobladder. During the surgery they take out the valves that prevent the urine from backing up into the ureters and they don’t make you new ones. The reason they don’t is that it prolongs the surgery, which is already 8 hours, and they have found that even with the rebuilt valves they have problems with blockages

So I have come to realize that there are new rules to the game and I need to discover what they are along the way. We are all experiments in medicine and we have to be vigilant when it comes to our own outcomes. They never found the cause of the original lump in my abdomen…it still comes and goes. Isn’t life interesting!