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  1. #1

    tethered spine bladder and bowel problems

    My daughter was born with a tethered spine, lipomeningomyelocele, the fatty tumor thing. she had surgery at 5 months old and everything seemed fine. Dr. Tim Burson at Arkansas Childrens Hospital performed the operation. We were told that she may need another surgery when she got a little older, 4 or 5 years old, if we noticed foot, leg, bladder, or bowel problems.

    she wet herself a few times and i would make her an appointment to make sure it wasnt the dreaded 'bladder problems.' for years we were good.

    She is 8 now. She had some UTIs and her PCP treated them and sent us home. She started having abdominal pain that would seem to be random. Fate had sent us to a different PCP who sent us to a urologist after my daughter giving a very dirty pee test. infection and blood. she had been fighting incontinence for the last year, with a very leaky bladder.

    now i know that the abdominal pain is an impacted colon. The urologist, Dr. Terrell, let me know that she should have been seeing a pediatric urologist this whole time since she is a spina bifida girl. She has been referred to a neurosurgeon and we had another MRI on the 23rd (probably our 7th). We are going for urodynamics on monday the 12th.

    She has been on myralax and ditropan now for about 3 weeks. and on and off antibiotics.

    what happens to a bladder when it stays infected all of the time? Why did they tell me they have to stick something up her butt WHILE she is getting the urodynamics? i was dreading her being catheterized enough, but now the butt too??

    Would we possibly get another spinal surgery and that may correct her bladder that doesnt seem to ever empty all the way?

  2. #2
    Glow, how I wish I had answers for you! It is heartwrenching to see loved ones, especially children, suffer for any reason! You have found the best place on the Web to find the information you need, and others will be along who have experience in this area. In the meantime, welcome to the community and best wishes to you, your daughter and family.

  3. #3
    It is likely that she is having UTIs and possibly long term risk for kidney damage due to having a high residual or urinary retention. It is likely that she needs to be doing intermittent catheterization several times daily to keep herself dry and to completely empty the bladder. Proper hygiene to prevent bowel bacteria getting to the urethra is also important.

    Urodynamics is needed to see high high her bladder pressures are, and just how her bladder has been effected by her disability. A small catheter and balloon must be inserted into the rectum during this test (in addition to a catheter inside the bladder). The rectal catheter measure intra-abdominal pressure, which must be subtracted by the computer used in this test from the total bladder pressure to obtain the true bladder pressure.

    It is likely she also needs to get onto a good bowel program to manage both constipation and incontinence.

    I would strongly recommend she see a good pediatric physiatrist and/or advanced practice rehabilitation nurse to help you and her with these issues. They can work with the pediatric/neurologic urologist to get her onto a better program. Keep in mind though that most people with a neurogenic bladder have a colonized bladder most of the time. This means they have bacteria in their bladder, but that is NOT the criteria for a UTI in this population. Symptoms such as fever, chills, flank pain, malaise, etc. are needed to diagnose a UTI, and only these UTIs should be treated with antibiotics.

    (KLD)

  4. #4
    Senior Member Van Quad's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    Keep in mind though that most people with a neurogenic bladder have a colonized bladder most of the time. This means they have bacteria in their bladder, but that is NOT the criteria for a UTI in this population. Symptoms such as fever, chills, flank pain, malaise, etc. are needed to diagnose a UTI, and only these UTIs should be treated with antibiotics.

    (KLD)
    This is the most concise, accurate description of the UTI that I've seen.

  5. #5
    Thank you everybody that replied. I am happy to be talking with people that are going through what we are going through.

    How do you go on with normal life if you have to catheter yourself every few hours? How does she go to school? Is there anything that can be done besides cathing? Since we have been on the ditropan, she does stay dry. no leaking or smelling like tinkle. Still has infection tho. I was thinking it is because we havent gotten her constipation under control? What is a colonized bladder? She had a renal ultrasound and an X ray and everything came back looking good.

    What is a bowel program? I am having a hard time getting her to drink the miralax. They gave us the power drink mix version and we definitely need to switch over to a pill form.

    I never thought of seeing a pediatric physiatrist. We definitely will. I knew joining this forum would be a great idea.

  6. #6
    Quote Originally Posted by Glow View Post
    How do you go on with normal life if you have to catheter yourself every few hours? How does she go to school? Is there anything that can be done besides cathing?
    Many people on these forums, and others with SCI, SB, MS and other neurologic disorders to intermittent cath 5-6X daily. Once you learn to do it, it takes no more time than going to the toilet does normally. It can be done at home, school, work, or in public restrooms. Most use clean technique, which is easy to do either in a wheelchair, in bed, or on the toilet. A good urologist will be able to tech her to do this, or have a nurse who can teach it, usually in a single session. A child of 8 should be able to do their own catheterizations. Some females eventually decide to have a relatively minor surgery called a Mitrofanoff which creates an artificial conduit from the bladder to the belly button. This then allows catheterization through the belly button, which is much easier to do for females.

    Quote Originally Posted by Glow View Post
    Still has infection tho. I was thinking it is because we havent gotten her constipation under control? What is a colonized bladder? She had a renal ultrasound and an X ray and everything came back looking good.
    Again, colonization (bacteria in the urine) is NOT an infection in someone with a neurogenic bladder. Colonization means that bacteria lives in the urine, but is NOT causing an infection (fever, chills, malaise, flank pain, etc. etc. etc.). Generally the preferred treatment is to just watch colonization and treat ONLY true UTIs. An ultrasound and Xray only looks for structural defects (stones, abscesses, strictures, hydronephrosis). It cannot tell you about the neurologic function of the bladder, or how high the bladder pressure is. Urodynamics is needed for that. High bladder pressure and residual urine are much more likely to be causing frequent UTIs than constipation, which is rarely a major factor in UTIs in people with paralysis.

    Quote Originally Posted by Glow View Post
    What is a bowel program? I am having a hard time getting her to drink the miralax. They gave us the power drink mix version and we definitely need to switch over to a pill form.
    A bowel program is a combination of proper diet and fluids, medications, timing/frequency, techniques, and special equipment used to empty the lower bowel at regular intervals to both prevent constipation and bowel accidents. I would strongly recommend downloading and reading this booklet on bowel management in SCI:

    Neurogenic Bowel: What You Should Know

    (KLD)

  7. #7
    Adult with Spina Bifida Myelomeningocele level T9 here. SCI-Nurse beat me to most of the answers about SB, but I will provide some of my personal routines and experiences. What (if you know) is your daughter's SB level? Is she in a wheelchair or ambulatory? I am non-ambulatory. I have been in a chair since I was 3.

    I was taught to self-cath at age 9 (I'm 33 now). It took me a few sessions to cath (I was afraid of touching my genital area at that young age so I wore LATEX FREE gloves until I was comfortable). I am able to transfer from my chair(s) to a bed, toilet, etc to self-cath. When I was in school (elementary-high school), I always cathed at lunch during the day so that I wouldn't miss any class, etc. I took my Ditropan at this time also. I was taking it 4x daily. Now I only take it 3 times daily since I was switched to the extended release form of the medication.

    You will have a VERY happy daughter once she is able to do this herself. I got the hang of it without a mirror at age 10. I kicked my mom out of my room one day, closed my door, got in bed, cathed myself at home and have been cathing myself ever since. Knowing someone is standing over me watching me do something makes me very nervous. However, it does depend on her developmental level as she has to be able to understand and remember the steps and order needed to cath. Some children with SB cannot cath themselves due to memory issues (I attend an SB camp here in TX and we have some adults who cannot, for mental or physical reasons, cath themselves).

    As for my bowel program, THIS took trial and error. What I do now is to take stool softener pills (try this since the Miralax seems to be an issue) in the morning and use a mini-enema called Enemeez (prescription only) in the evening 2-3x per week.

    I also started developing CHRONIC UTI's back in 2004. I have been on every known antibiotic out there. There will be scar tissue (from the repeated insertion of the catheter) but don't let this stop you from teaching her how to cath herself. There are catheters known as hydrophilic (these come enclosed in a package of sterile fluid to keep the catheter wet) that are supposed to cut down on infections, but I don't use them. Make sure the catheters are also latex free since she will be using them several times per day.


    One thing I mentioned above was latex allergy. Most children with SB Myelomeningocele or even Meningocele are at an increased risk of becoming allergic. I AM allergic because of the fact that I had 13 surgeries before they discovered this. If you decide to let her learn to cath herself or do her own bowel program, MANDATE that all products are LATEX FREE. I had 2 near anaphylactic shock reactions to latex gloves so now I use vinyl or nitrile gloves (however, I had 2 friends who were not so lucky. It took losing them both, to get doctors to wake up and test every SB newborn for the allergy). Make sure everyone she interacts with on a regular basis is aware of this fact (school nurse, teachers, doctors, etc) so they have the proper equipment on hand. I have lost count of the number of times I have had to remind others that I have that allergy.

    Also, ask her doctor for 2 epinepherine pens (aka EPI-PEN). Keep one at home and one with her in her backpack AT ALL TIMES. I have never had to use mine but it is with me at all times. They do expire so you will need new ones every year. All of mine have expired but that is a good thing because it means I have never had to use them.

    SB can be a mind-boggling disability. But if it is managed properly, there is no reason your daughter can't be independent.

    Not sure where you live, but I would go to www.spinabifidaassociation.org and find the nearest chapter and become involved. You will meet a lot of families who have children with SB. One of the best events to become involved in is the National Conference. This 3-day conference is packed with sessions on all the latest current information on SB available. They also have a Kids Camp your daughter can attend while you're in sessions learning. She will learn that she is NOT alone and there are other children out there who are living with SB. I've been going for 6 years and the 2012 conference will be in Indianapolis, IN.
    Last edited by EricaBold9780; 12-09-2011 at 04:22 AM.

  8. #8
    hello, i am the original poster, i got shut out of my other account somehow and the reset password option didnt work.

    Here is an update. My daughter saw a urologist at childrens hosptial and he calmed me but also bothered me with his diagnosis.

    Her ultrasounds and MRIs all came back saying her bladder is fine. He decided she did NOT need a urodynamics test. he said if her bladder had problems she would have no control such as bedwetting, which she does not do. He said her pee leakage is behavioral. He told us to get off the ditropan and just get her to go pee more often. so i was relieved but also dont really beleive him that she just feels like leaking pee on herself because she'd rather smell bad than go to the bathroom.

    i took her off ditropan and we worked on peeing more often. i put her back on it last month though. her urine has such a strong odor that any little leak onto her panties smells awful and can embarrass her.

    She had a bad constipation this weekend and it caused vomiting and fever so we went back to her PCP. We accepted the antibiotics because the fever could have been a sign of a UTI?? They did not do a urine test, they said why bother if all of her tests will come back positive for infection anyway.

    I have failed at changing her diet and i am getting back on the ball with that. the miralax is still hard to get her to take. even if she knows that not drinking it will give her pain and discomfort. we had 6 good months with no problems so its easy to let it slide when she seems happy and healthy.
    Last edited by alkindall; 05-22-2012 at 12:19 PM.

  9. #9
    Quote Originally Posted by EricaBold9780 View Post
    Adult with Spina Bifida Myelomeningocele level T9 here. SCI-Nurse beat me to most of the answers about SB, but I will provide some of my personal routines and experiences. What (if you know) is your daughter's SB level? Is she in a wheelchair or ambulatory? I am non-ambulatory. I have been in a chair since I was 3.

    sorry for double posting but i forgot to address your questions.

    i had no clue there were SB levels. She has never been in a wheelchair. i guess her original neurosurgeon (who we cant see anymore because he left the childrens hospital) didnt find her condition to need any monitoring by a urologist or anything so we dont have the history of cathing procedures.
    Last edited by alkindall; 05-22-2012 at 12:20 PM.

  10. #10
    this morning we are having another episode of painful abdomen with vomiting. we have a check up scheduled for thursday regarding her bladder, but now i am sure i need to find someone else about her abdomen pain. i feel like everyone thinks things are fine or 'good enough' and then suddenly one day she will wake up and be in a wheelchair all because i didnt get her the proper care or diagnosis or treatment.

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