Bladder problems

[Megha]

I am not an SCI patient, but I have a congenital back problem. I am female paralyzed since birth and have bad urine bladder problems.

Though things were never very good, (I keep getting UTIs after few months and have been surviving on antibiotics) but for the last few months, things are going worse:

My bladder capacity is going down and I have to cath myself (from urethra) after every 1 or 2 hours. My digestive system is also going down to the point that I got stomach ulcers last year.

Not sure if anyone can help me, but just wanted to rant here a little :lolz: I stay at home with my parents and work from home also. My life is quite limited to my room only and am not at all independent.
hmmm......:(

[SCI-Nurse]

So do you have spina bifida (SB)?

Are you working with a good urologist? When you say UTIs, do you mean real UTIs with symptoms such as fever, chills, flank pain, severe malaise, etc. or are you talking about merely positive cultures (colonization)? Have you had tests to rule out stones?

Stomach ulcers are much more related to stress and/or infection with a specific bacteria (h. pylori) than they are to any type of spinal cord problem. Are you working with a good GI physician on this?

Is your bladder capacity down because of bladder spasm, or is it due to a shrinking bladder? This can be determined from tests. The first is usually treated with anticholenergic medications and sometimes Botox. The latter is more often treated with a big (but often very effective) surgery called a bladder augmentation (clamshell). This can be done alone, or combined with something like a Mitrofanoff procedure which would allow you to also cath through your abdomen instead of through your urethra. For many women this is easier and quicker. Have you discussed these options with your urologist?

(KLD)

[gjnl]

Hello Megha,
The SCI nurse has given you some good alternatives, but considering your age, I would suggest a step in between drugs/Botox (if these prove unsatisfactory) and big, irreversible, surgical procedures. When you discuss your urological problems with your physician, ask him or her about a supra pubic catheter (SPC). A SPC is a foley catheter that has been inserted into the bladder through a surgical incision in the the abdomen, just above the pubic bone. This procedure is commonly done in community medical facilities by a urologist. Many times anticholenergic medications still may be needed, but usually in smaller doses. The SPC does require a leg, thigh or belly bag to collect the urine, a night drain bag or bottle, and the catheter is changed about once a month. The upsides are the procedure is reversible (and at your age, medical science may come up with a hat trick or two in the next decade that may not be available to you if you have irreversible procedures done now) and you don't need to worry about when/how you will catheterize yourself which also imposes limitations on your time and awakens you in the middle of the night. Try searching this website to read about experiences members have had with Botox, augmentation, and SPC.

All the best,
GJ

[Megha]

So do you have spina bifida (SB)?

Are you working with a good urologist? When you say UTIs, do you mean real UTIs with symptoms such as fever, chills, flank pain, severe malaise, etc. or are you talking about merely positive cultures (colonization)? Have you had tests to rule out stones?

Stomach ulcers are much more related to stress and/or infection with a specific bacteria (h. pylori) than they are to any type of spinal cord problem. Are you working with a good GI physician on this?

Is your bladder capacity down because of bladder spasm, or is it due to a shrinking bladder? This can be determined from tests. The first is usually treated with anticholenergic medications and sometimes Botox. The latter is more often treated with a big (but often very effective) surgery called a bladder augmentation (clamshell). This can be done alone, or combined with something like a Mitrofanoff procedure which would allow you to also cath through your abdomen instead of through your urethra. For many women this is easier and quicker. Have you discussed these options with your urologist?

(KLD)

Oooh, So many questiions! :tup3: Here are the answers:
1. I had an abscess in my spine and 2 columns weren't developed when I was born. Don't know what's the medical term for it.
2. Right now I am not in touch with any urologist & thinking of going to one soon.
3. By UTIs I mean infection with all the symptoms, including long term affects like hair fall, general weakness and low immunity. I don't have stones. UTI occurs when I can't cath for a long time. The bladder and kidneys get infected because my bladder can't throw out the urine on its own. It only drips out in drops. (Sorry for being so graphic)
4. Ulcers are not related to the spine or bladder, but they have just added to my trouble :hammer:
5. About the bladder capacity, I am not sure if it is spasming or shrinking. Will have to see a doctor for that also. My guess, its both. The capacity has reduced and sometimes it just spasms out of control, especially if I have drink more than normal or my stomach is not 100% clear.

Thanks.

[Megha]

Hello Megha,
The SCI nurse has given you some good alternatives, but considering your age, I would suggest a step in between drugs/Botox (if these prove unsatisfactory) and big, irreversible, surgical procedures. When you discuss your urological problems with your physician, ask him or her about a supra pubic catheter (SPC).
All the best,
GJ

Hey,
Right now, I am thinking that Mitrofanoff is my best option, considering I always need somebody with me who can cath me. I also think that there is something wrong with my bladder. See my last post for details. But I don't think I will be comfortable with moving around with a bag attached to me.

[mike b]

Drinking lots of fluids (namely water) and emptying your bladder helps a lot with decreasing the frequency of uti's, but I have an sp catheter and if anything, it is a recipe for infections if I do not drink and empty constantly. As was already mentioned to you, and now I will tell you, see a good urologist that comes highly recommended and take it from there.

[jody]

Iv been thinking about what im going to do when cathing begins to not work as well.

I think id go with the sp, because the procedure is not as complicated as the augmentation. and may be reversed. the collection bag is a drawback to me, but doesn't the mitrofanoff procedure make you produce a mucus discharge?

[spookysam]

what could be the cause for peeing frequently ?

[Megha]

Drinking lots of fluids (namely water) and emptying your bladder helps a lot with decreasing the frequency of uti's, but I have an sp catheter and if anything, it is a recipe for infections if I do not drink and empty constantly. As was already mentioned to you, and now I will tell you, see a good urologist that comes highly recommended and take it from there.

Hey Mike, I have done practically everything to stop UTIs all my life. Drank water, cath frequently, eat supplements and what else. But it has something to do with my internal situation. My kidneys don't function too well & one of my kidneys puts pressure on my bladder as it is not at the place where it should be.

Yeah.... I know :banghead:

[Megha]

Iv been thinking about what im going to do when cathing begins to not work as well.



Cathing worked very good for me for over 15 years. But I think its now time for next step. something seems to be wrong somewhere.

@Spookysam,

Not sure what's the reason of that. May be because I have got older now. I was only 8-9 years old when I started cathing. I use IC during day and get a Balloon cath with urobag in the night. May be with age, things have started going downhill.

[mike b]

Hey Mike, I have done practically everything to stop UTIs all my life. Drank water, cath frequently, eat supplements and what else. But it has something to do with my internal situation. My kidneys don't function too well & one of my kidneys puts pressure on my bladder as it is not at the place where it should be.

Yeah.... I know :banghead:

I hope everything will come to work out for you, a good urologist may be the first step to getting there. I found out the hard way what happens when something like this goes on for too long.

[Megha]

I hope everything will come to work out for you, a good urologist may be the first step to getting there. I found out the hard way what happens when something like this goes on for too long.

Hi, I am new here. May I know some details about your condition? Are you SCI patient or do you also have some other trouble?

Hope I am not intruding. :decision: