by Jenny Smith
The Process Begins
It all started with the catheters slipping off the leg bag that I kept tucked in my underwear at my right hip. I’d look down and see my pants wet from where the catheter would simply decide to slip off. After 16 years of having an indwelling catheter, I didn’t know why this was happening. No representatives from medical supply companies had any answers. After talking to another female quad with an indwelling, she told me she uses latex catheters because of the same thing happening to her. I tried the latex catheters. They were so tight that I could not easily change the bags myself. Yes, the catheter stayed on the bag…. just a little too well.
I moved to Arizona for two semesters during the 2005-2006 school year. It was there, at the University of Arizona, that I met Katie, a graduate student and female quad. I don’t know how the subject first surfaced, but I ended up learning from her about the stoma and bladder augmentation she had done several years prior that allows her to independently cath. This is procedure entails surgically making a small catheterizable stoma (hole) that is in the abdominal region and enlarging the bladder. Katie had the surgery due to recurrent UTIs due to an indwelling catheter. In my own mind, there was no reason for me to have this procedure done. Yes, it would be nice to not have the bag and to be able to wear the clothing I’d prefer. But I was independent in the bladder regimen I had, I rarely got UTIs, and I rarely had problems with leaking. Except for vanity’s sake, why fix what isn’t broken?
After returning to Louisville and eventually moving into my own condo, the frustration of non-cooperative catheters was becoming an issue. And I must admit, the experience at Discovery through Design in February of 2007 in New York, wearing a beautiful one-piece dress with a leg bag strapped to my leg, had impacted me, too. When the bag was strapped to my leg/thigh, I could not independently empty it. And what if I ever get married? Do I really want an indwelling catheter and leg bag around all the time? So, I started asking Katie more questions. I also found two other females, as well as a male co-worker, who had this procedure done. It was time to get a professional opinion.
I went to see Dr. Schrepherman, a urologist, in Louisville. When I asked about the surgery, he very strongly advised me to have the surgery. This shocked me since I really had been thinking of this as a “vanity surgery,” elective and solely for looks. What I had never heard was the higher rates of bladder cancer for those who have indwelling catheters. Actually, I’d heard plenty about bladder cancer and SCIs – I’d just never put two and two together. So, I had an MRI, contacted the surgeon that had performed Katie’s surgery, and made an appointment to coincide with my trip to Philadelphia for a rowing regatta.
Why Philadelphia? From my understanding, most surgeons who do this surgery are pediatric urologists working with children with disabilities like spina bifida. I may have been able to find someone a bit closer to home, but Dr. Shenot had come highly recommended, and he specializes in bladder augmentation for SCIs. The other deciding factor was that I have family in the Philadelphia area. During my recovery, I would be able to stay with them.
I had done as much research as possible before I met Dr. Shenot. What I knew was that the procedure typically uses the appendix to make a stoma, and a section of the bowel is used to enlarge the bladder. The procedure (when the appendix is used) is called a Mitrofanoff. I took my 101 questions with me to the appointment, and Dr. Shenot patiently and willingly answered them all. This impressed me greatly.
Below are a few of the questions I asked Dr. Shenot:
1. Where is the stoma placed? Dr. Shenot prefers to place the stoma in the lower abdomen. Picture a clock with your belly button the center of the clock; the stoma sits about two or three inches from the belly button at about the “7” or “8” on the clock. This placement allows any future abdominal surgeries to take place without the stoma being “in the way.” (Some doctors place the stoma in the belly button for appearance sake.) I have a Medtronic intrathecal baclofen pump, so my stoma would be placed on the opposite side.
2. Would I need to irrigate my bladder? Yes, especially during the first few months after surgery. Typically his patients can back off from irrigating after the first few months because the amount of mucus produced by the bowel tissue reduces after time.
3. Is it typical for the stoma to leak? About 20 percent of patients with a stoma report some leakage of either urine or mucus. In some cases this requires a stoma revision.
4. Does the stoma interfere with pregnancy or C-sections? No.
5. What type of catheter is used? A re-usable red rubber 14 or 16 french catheter is typical, although a larger catheter may be used, if desired. One-time use catheters or closed catheter systems may also be used, but not all insurance companies will pay for these.
Basically, it boiled down to these two questions for me:
• Why should I have the surgery?
• Why should I not have the surgery?
Dr. Shenot said that I should have the surgery because I was not yet having problems. I was not experiencing a damaged urethra which causes the catheter to come out easily or leak urine, and I was showing no signs of cancer. In his opinion, the only reason to not have the surgery was the current research in which stem cells, rather than bowel tissue, are being used for the bladder and/or stoma.
I gave myself several weeks to come to a decision. It was probably the most difficult decision I’ve ever made. Is it worth the risk, the possible complications and probable weight loss? Although I waited until my self-imposed deadline to make the decision and call the doctor, I had already begun to increase my food intake to try to gain some weight (it’s typical to lose about 10 pounds). So, in reality, I guess I had known I would have the surgery, but I just needed to make it “official.”
Due to the nature of the surgery, Dr. Shenot recommended that I not travel for four months after the surgery. My job entails quite a bit of traveling, so I asked for the earliest date for surgery… and kept eating to gain weight.
I arrived in Philadelphia on October 23, and the next day I had a urodynamic study done. This study shows the amount of fluid the bladder can hold and any spasms that occur. Long story short – my bladder was very small. It only held 20 cc (about 4 teaspoons). After 18 years of having an indwelling catheter, this wasn’t necessarily a surprise, since it is typical to be between 20 to 100 cc. I just happen to be on the low-volume side. The goal after surgery was that I could hold 800 cc. My worry with this is I could typically output 1600cc throughout the night. So, it would require that I wake up at night and cath or that I make extreme changes in my “drinking” habits.
In preparation for the surgery, I had to go on a liquid diet three days before the surgery. Since bowel tissue is used for both the bladder augmentation and the stoma (Dr. Shenot prefers to use bowel tissue rather than the appendix), my entire system had to be totally clean. I drank a lot of juice and got enough calories that I didn’t feel weak, as I had expected. I was admitted the day before the surgery to “clean me out.” This entailed drinking 1000 cc of a mostly-tasteless liquid that would stimulate my bowels. Then for about four hours, two nurses gave me seven enemas until anything that came out of me was clear. This lasted until about 2 a.m. Surgery was at 6 a.m.
E-mail written by my mom – Surgery 10/31/07
Jenny had her surgery yesterday (the 30th), all 9.5 hours. Surgery started at 8:23 and when I finally talked to Dr. Shenot at 6:00 Jenny was still is the OR but would be in recovery in 20 minutes. He was very pleased with the way surgery went and laughed that there wasn't too much of Jenny to work with (oh, to have such problems!) Jenny has had disreflexia during the night, possible caused by a clogged drainage tube but also possible is pain or just the morphine making her sick. They are changing pain medications this morning and unclogged the drainage tube so hopefully one of those was the cause. (Disreflexia is her body's reaction to something. Her blood pressure goes up and she feels "weird". She can't feel what the "something" is.)
The good side is I have been able to let her suck on a little sponge with water. She said that is like heaven. She has had nothing to eat since Saturday and won't for another couple days. She had dreams of a Starbucks Strawberries and Cream last night (I didn't think she slept enough to dream). She will be in the hospital at least 7 to 10 days. Next time she'll probably write.
Carol (Jen's Mom)
During the surgery, the doctor had put in an NG tube. I was not allowed to eat until my bowels began to move – which could take up to 10 days. The NG tube was the worst part of the first week. It was terribly uncomfortable. I was not allowed to eat or drink.
E-mail written by my aunt Jacquee – Update 11/3/07
NG tube removed early this morning. Jenny is taking in clear liquids. Last couple nights have been extremely difficult for Jenny. She is finally getting some rest. She says she should have a "real" meal tomorrow, and doctors plan on getting her into her chair today for the first time.
Thanks for prayers and notes. Jenny will likely be in the hospital for four or five more days.
Getting the NG tube out was the start of getting back to normal. After one day of a liquid diet, I was able to eat. I started out slowly, but my intestines did not. And getting pain medication regulated orally was also difficult. At first, I was emptying my new bladder via a suprapubic catheter. During the day we would put a stopper in it and wait until I went through several waves of dysreflexia until I would empty my bladder. This allowed the bladder to stretch out.
E-mail from Jenny – It’s me 11/8/07
The last week has been a rollercoaster – 2 steps forward one step backwards. The doctors are quite impressed overall with how well I'm doing. And considering it's been 8 days since surgery, I doubt things could be going much better (although I am no where near "normal").
List of events – last Saturday got the NG tube out, was allowed to drink, ate on Sunday. Then the food came RIGHT through on Monday making me have stomach cramps, etc. for about 12 hours. But the good news in that is that "things" were moving – the hardest part of a surgery when the bowels are used. Tuesday was good again, but took a pain med that night that was too strong and was overdosed a bit all day yesterday. My blood pressure was so low I couldn't sit up and hadn't slept but 1 hour in that 24-hour period, too. I refused any medication out of fear I'd have too much again, but woke up after an hour of sleep in a lot of pain. So, I gave in and took my regular meds and some Motrin and slept until 6:45. That felt good. Today has been fine, too. I'm in the process of stretching the bladder out, so it's not always comfortable. It scared me yesterday because of the dysreflexia (high blood pressure, sweating, etc), but Dr. Shenot said he has not had a patient not be able to get beyond this first, difficult part. So, I just need to push through the next couple weeks knowing the end result will be positive. I sat up in my chair from 10-1 and just slept a bit. It looks like I may go home (to my aunt and uncle's) tomorrow.
Thanks for all your support! I couldn't respond to all your e-mails, but it was great to hear from so many of you.
It was actually several more days before I went home. I spent ten days in the hospital. Thankfully, I had not lost a great amount of weight. I had been warned that bowel accidents were possible for the first several months, but I only had this happen one time a day or two after I got out of the hospital.
Within four weeks of the surgery I was catheterizing through the stoma. It was very easy and didn’t take much time to get the hang of it (except for the fact that I was sticking something into a hole in my body was freaky at first; it felt like a “Stupid Human Tricks” segment). Even as a C6-7 quad (with tendon transfers), it was fairly easy to do.
E-mail from Jenny – Update from Philadelphia 11/27/07
I'm still in Philly. Everything is going well. I am right on schedule and recovering well, according to Dr. Shenot. My appetite has returned to normal - I'm no longer eating enormous portions every few hours! The staples (all 37 of them) are out and the incision is already healing up nicely. I'm still swollen, but I was told the swelling could last up to a few months.
I am now catheterizing through the new stoma and continue to stretch my bladder out. My bladder is currently holding up to 600 cc – before the surgery I could only hold 20 cc. Last night was my first night in 18 years without being connected to a catheter and night bag. I made it until 2:30 a.m. when I could tell I needed to go (dysreflexia, not sensation); so I woke up and “took care of business”, then was fine until I got up in the morning. Hopefully I'll make it through the night within the next month. I will fly back to Louisville Dec 5 – in one week! I don't feel quite ready to come home and be back to “normal”, i.e., doing so much without help. I've got a lot to work on in the next week. I'm back to work, although I'm not quite at 100 percent yet.
Thanks for all the prayer and support. You guys are the best.
I returned home five weeks after surgery. My fears were unwarranted. I settled back into my normal routine. In Philadelphia , my mom had been helping me every morning and evening with dressing, etc., so doing that on my own again took a bit of effort, but not so much that I felt like I needed to call in for extra help.
I’m now over two months post-op. I’m regularly holding 550 cc and making it through the night without having to cath. My stoma does leak a small amount of urine, especially when my bladder is overly full. The stoma also produces a bit of mucus, due to the bowel tissue. But others who had this procedure done had let me know their “tricks of the trade” – placing a thin panty liner on the inside of my underwear over the stoma prevents any urine or mucus from getting on clothing. I am not on a “schedule” for cathing. At the first sign of dysreflexia I know I need to get to the bathroom in the next few minutes.
Was it difficult? Yes. Was it worth it? I’ll be able to answer that in a year or so from now.
By the way, I just bought my first pair of Gap jeans that really fit…and some cute underwear from Victoria’s Secret.