Roberta’s Experience with the Mitrofanoff Procedure...or something like it!

My name is Roberta and I was injured in an ATV accident on 5/24/14. My level of injury is T3 Complete. I am a Para with full use of my hands and arms and I get around in a manual wheelchair. Over time I have become fairly independent. I am able to do most everything on my own although it just takes a lot more time as we all know.

The one big bother in my day was intermittent cathing (IC). It was such a production. Due to the level of my SCI I am not able to feel when my bladder is full nor can I control my bladder to void when I want. So I must use a catheter to empty my bladder 4 to 6 times a day. Many paras can cath from their wheelchair, but I was never able to master it. Being paralyzed from the chest down, I didn’t have the core strength to be able to get to the edge of my chair, get my pants down and manage to cath without falling over or seriously contaminating the catheter in the process. So my method was to transfer into my bed to cath each time. The process took about 20 minutes and I always had to plan my day around being home at certain times to do this. I felt like a slave to my IC routine. Not only was it such a production, I still managed to get UTIs regardless of how careful I was cathing. Its just part of the female anatomy that lends itself to increased risks of UTIs when performing IC. All that said, my Physical Therapist told me about a surgical procedure where you could cath from a very small stoma (an opening in the abdominal wall). By doing this, you could cath in the chair and not have to deal with getting pants up and down or transferring to bed. And there is less risk of contamination during IC due to location of the stoma. The surgery called Mitrofanoff procedure uses the appendix to create a pathway between the bladder and the stoma.

I talked with my urologist and he agreed I would be a good candidate for a procedure similar to the Mitrofanoff. The procedure I had is called Augmentation Cystoplasty with creation of continent catheterizable channel (Indiana augment). The difference between my procedure and the Mitrofanoff procedure is instead of using the appendix for the pathway from bladder to stoma my doctor used a part of the small intestine. The reason for this is that many times the appendix is too short for the pathway in adults and the doctor can create a one way valve in the piece of small intestine so there is no problem with urine leaking from the bladder out through the stoma. I just cover the stoma with a bandage once I’m done cathing. My doctor also enlarged my bladder using part of the colon (Indiana Augment) so I could hold more urine. Needless to say, this surgery was pretty intense since it involved my bladder, bowel and a large abdominal incision to get to everything.

Ever since I was informed about this type of surgery, I was intrigued. I had a feeling it would make my daily routine much easier. What kept me from jumping right into it was the thought of having the surgery, the recovery time and worry about possible complications. I gave it my best shot to figure out cathing in my wheelchair but just couldn’t master it. The one last thing that finally made me take the plunge to look into the surgery was the desire to visit my son in Portland, OR. In order to see him I would need to take a 4-hour plane ride. How was I going to do this if I had to find a place to lay down to cath every 4-6 hours? So here I am today. I am now able to cath from my chair anytime and anywhere. Cathing is no longer an obstacle for travel or general living. Joy!!

Preparation before surgery started with a preoperative physical including time with a stoma nurse to determine the best location for my stoma. It was recommended to eat a low residue diet about 3 to 4 days before surgery in order to reduce the amount of stool. The night before surgery my doctor had me drink a bowel prep he prescribed to empty and cleans my colon.

Surgery itself took about 5 hours. My doctor had to make a vertical abdominal incision from just above my belly button to the pubic bone so he could work with the bowel and bladder and create the stoma, which mine is located to the right of my belly button.

When I woke up from surgery I had several lines in place. I had an IV line in my arm for fluids and meds. I had an abdominal drain to remove excess fluids, prevent swelling and promote healing. Two catheters with urine bags were placed. One was a Foley catheter inserted for the surgery and left in place to make sure the suprapubic catheter was working. The other a suprapubic catheter inserted to allow time for the stoma and internal tissues of the pathway to the bladder to heal. The suprapubic catheter also allowed constant drainage of the bladder so there was no pressure on the sutures from enlarging the bladder. There was also a closed catheter line inserted and placed from the stoma to the bladder to allow the internal tissues of the passage and stoma to heal and yet remain open. Along with all the lines, I had abdominal dressings to protect my incision and drains.

My total hospital stay was seven days. Over the course of that week, the priority for my stay was to remain free of infection, have the Foley catheter and abdominal drains removed and have a bowel movement. During that time I was total assist with all transfers and positioning so my internal and external incisions could heal. PT came in and worked with both my husband and me. We concentrated on transfers and mobility to prepare for going home. Nursing worked with me on changing dressings, emptying and irrigating my suprapubic catheter and caring for my stoma.

At home, the remaining suprapubic catheter, stoma and abdominal incision required the same care as in the hospital. The suprapubic catheter is attached to a urine bag so it must be emptied as it fills up. Also important is a schedule to irrigate the catheter. Irrigation is done to prevent mucus from clogging the tubes and from accumulating along the lining of the bladder. The mucus is a normal occurrence in the lining of the bowel. Because the bladder, pathway and stoma are made of bowel tissue, mucus will always be present and therefore need to be irrigated. In the beginning the irrigations are frequent, but as healing takes place the frequency to irrigate goes way down. Changing dressings for the incision and stoma also needed to be done daily until healing was complete. Another important aspect of recovery at home was mobility. While recovering from abdominal surgery with internal and external incisions it was very important to have assistance with transfers to bed and to the shower chair, positional changes in bed, assistance with dressing, etc. I was fortunate because my husband can lift me. Rest was very important as was eating a healthy diet to get my bowel program back on track and to aid in healing. All in all it took a good 6-8 weeks to get back to activities of daily living on my own. (Of note, my bowel program was back to normal after about 2 weeks).

During the recovery period, I had follow ups with my urologist to check on my progress. Into the end of the second week post op, my doctor removed the tube from my stoma keeping the pathway from bladder to stoma open. He taught me how to catheterize my stoma. I used a 14 French 16” long male straight catheter to do this. The length is needed for the extra distance between stoma and bladder. That went well so my doctor removed the suprapubic catheter. At the beginning, I was instructed to intermittently cath (IC) more frequently until my bladder stretched and was able to hold more urine. I was also instructed to irrigate my empty bladder with 50-60cc normal saline frequently due to mucus buildup from the bowel tissue. Today I cath every 4-6 hours or depending on how much I’ve had to drink. And I irrigate my bladder every other day or depending on how much mucus I’m seeing in my urine. (I’ve found if I’m a little dehydrated, I will have more mucus).

I am so happy I had the surgery. I think I would’ve done it sooner had I known what a game changer it would be. It’s so nice to be able to go anywhere and not worry about my cathing routine. Another benefit to having this surgery is, so far, no UTIs. It’s only been 6 months since my procedure but only once did I feel like I was on the verge of a UTI and with the ease of cathing, I was able to push more water, cath more often and bypass the dreaded UTI. With the stoma in an easy to reach place and far away from contamination, more likely with the female anatomy, the chances of UTIs drop. With the enlargement to my bladder, I can go longer between caths. Before the procedure my bladder could hold up to 400cc. But I would begin to experience AD (Autonomic Dysreflexia) if I got that full and would leak urine if I bent over or had bladder spasms. Botox to my bladder every 4-6 months would help with these symptoms but once it wore off I’d be right back with AD and urine leaks. Today I can hold much more. On average I void 300-600cc with my high 900cc. I no longer experience AD or leakage when I bend over. I was able to stop taking Oxybutynin and so far have not needed Botox for my bladder.

The cons for the procedure include having a long surgery with a lengthy 6-8 week intense recovery. There are possible complications that may occur after having the surgery. For example, Mitrofanoff can leak at the stoma. Or the passage between bladder and stoma can develop stenosis (meaning the passage starts to close or closes). But these are all topics to discuss with your surgeon based on the type of procedure being done.

Following the 6-8 week recovery period I was able to go back to my usual activities and exercises. I found that I lost some stamina and strength from being down for that long but with rest, a good diet and exercise I was able to get back to my pre-op form in no time. I am able to wear the same clothes I did before my surgery. My stoma, which is about the size of a pencil eraser, is flush next to my belly button so it does not interfere with my pants, jeans, leggings or whatever. I just cover it was a small bandage. Because the stoma is continent (does not leak urine) I can bathe and swim. Some may have questions about becoming pregnant after this procedure. This would be a question to ask your urologist but much of the literature suggests it is not an issue. Overall, this procedure enhanced my day-to-day life. I can do so much more now due to the convenience and ease of my bladder routine.

Lastly, before signing up for this surgery, make sure you have an urologist/surgeon that has experience doing this procedure. Spend time with this professional and get all your questions answered. As a Registered Nurse I did my homework and gathered the facts to make sure I was informed of all the pros, cons, and ins and outs of my procedure. This is so important since this is such an extensive procedure. I was so fortunate to have an experienced urologist here in Dallas who is familiar with the SCI community and who did my procedure.

In closing, my goal in writing this article is to share “my” experience with those women considering this type of procedure. Even though I’m a RN, it was of great benefit to me to be able to get insight from women who had the same surgery so I had a really good idea of what I was in for and if it was even right for me. As they say, knowledge is power!

It's all good, so keep on rollin,’

Roberta, RN and Patty, BSN, RNC

The Rollin’ RNs ™

References:

Low Residue Diet: http://dda.net/wp-content/uploads/2014/12/Low_Residue_Diet.pdf