Bladder removal (urinary diversion) surgery soon

[sledgrl]

In about 6 weeks I'll be having my bladder removed for urinary diversion surgery. Theyll take a piece of intestine to make a stoma and I'll wear a urine-ostomy pouch on lower abdomin.

Have had a suprapubic catheter for almost 3 years with pretty consistent UTIs. Since Nov, I've been hospitalized 3 times (each 6-8 days) for kidney infections of UTI that turned septic; so I know I need this surgery.

i have a pre-op appt to try out ostomy appliances and figure out location on abdomin for stoma. I'm most nervous about initial recovery in hospital while bowls are trying to return to 'normal'... and this is the same hospital I was in 3 years ago where they ignored MRI report so the herniated disc caused me to become a quad. I love my urologist but she only does surgical at this hospital so I cant choose elsewhere. Surgeon is supposed to be getting me a private room so my mom & my service dog can stay overnight with me.

Looking for anyone who's had this surgery...How did your recovery go? How long was hospital stay after? Any advice? Does the suprapubic site get closed surgically or left to close naturally? Any general advice for hospital stay?

[SCI-Nurse]

So I assume that you have looked at other alternatives such as a continent "neo-bladder" through which you can do intermittent cath and not have to wear an appliance? This surgery is a big one. It does not necessarily reduce your risks for UTI though.

Since you will have bowel surgery as part of this, you generally will have to have a bowel prep, although sometimes they will forego this as your surgery sounds like it is only on the small intestine. Regardless, this often results in a period of ileus where your bowel does not work, so you should anticipate having an NG tube to suction (through your nose into your stomach) for 3-7 days after surgery. This also means you cannot take any oral medications during that time. A big issue if you are on baclofen, as this cannot be given by another route, and this could result in you going into baclofen withdrawal. Discuss this with your surgeon, but you may need to start tapering your baclofen dosage right now if you are on this med. In addition, you will only be getting fluids through your IV, and no additional nutrition. Even D5W 1000 cc. of IV fluid gives you only about 300 calories. If your ileus lasts more than 4 days, they should consider TPN (IV feeding with protein, fats, vitamins, and carbs). Going longer without nutrition (esp. protein) puts your surgical healing at risk, and also puts you at higher risk for skin breakdown. If you are on opioid pain medications, you should have orders for equal dosage of IV opioids during this time. If you take Valium, you can get this IV, as this should also not be stopped suddenly.

Speaking of the latter, be sure that they have you on a good pressure reducing surface for your surgery, as this is a long surgery, and perioperative pressure ulcers are risk. We are fortunate to have a Dolphin surface for this in our OR, but that is rare. Gel pads and foam pads are a distant but recommended alternative. You should also be getting a good LAL (low air loss) mattress to use in your hospital room as a preventive measure, and I am sad to say, physician's orders to be sure that the nurses are turning you every 2 hours around the clock (I am embarrassed to see nurses need a physician's order for this...but there it is).

You should have information with you upon admission about autonomic dysreflexia and give this to the nursing staff...ideally there will be a clinical nurse specialist or head nurse on the unit you can speak to about this, and your physician must write orders about what to do (meds, etc.) if you should have an episode. The surgical incision itself can cause this.

You also need to get ROM daily, which will probably need to be done by PT, as most nurses don't know how to do this, or won't do it. Be sure you have your wheelchair and cushion available so that you can get out of bed after surgery (with a lift) and don't let them leave the lift sling under you. You should be getting out of bed, just to sit at the bedside (remember the suction) on the 2nd or 3rd post-operative day, just as they would for someone who is AB having this surgery. Don't let them get you up into a hospital wheelchair or "cardiac" chair.

Once your bowels start working again (passing gas, good bowel sounds) you also will need to resume your regular bowel program, and will need physician's orders for this. This is also when you can have your NG tube out, and resume your oral meds.

You should also be prepared to have either stents in your ureters, or alternatively ureteral catheters (two ) draining your urine for a few days post-op. This means two bags as well. Are they also removing your bladder?? If not, you may have a catheter through your urethra or SP stoma as well for a few days.

Closing the SP catheter stoma usually requires a stitching of the stoma, but a lot depends upon how that surgery was originally done. Discuss this with your urologist.

Good luck with your surgery. I hope you get the results from it that you desire.

(KLD)

[Smashms]

I tol had an ileal conduit done gor repeat infections. The first 6 months to a year i also had repeat infections but thank god haven't had one in about 3 to 4 years. I was in the hospital for i think 8-10 days with the first 4-5 days with an NG tube till my bowels woke back up. I can't remember too much till around day 5-6 when they really started weaning me from the pain pump because at the time i was a T6 so i had alot of AD when ever they attempted to take the pump away. Around day 5-6 they were able to finally take it with round the clock pain meds orally. As far as your sp site i am not sure if they wait till it closes or will just stich it closed i guess it would depend on what your surgeon prefers. I was up in my chair at day 4 i think wheeling around the unit with assistance for the iv pole. As far as bowel program once your bowels wake up they will begin to give you a clear diet then advance as tolerated. My bowel program was pretty much back to normal by the time i left the hospital. They will give you both colace and senna to counter act the effects of the narcotic pain meds and i suggest you take them as they can constipate you. i normally don't take any bowel meds with my program but everyone is different. Also while in bed make sure they do range of motion excerises and stretch you out real good as well as turn you every couple of hours. The surgery itself is a big one but be sure to take magazines and or a computer to keep both your mom and you entertained while there. You will be out of it the first couple of days most likely so it will be more for your mom then. Definately meet with a WOCN prior so they can figure out the best spot while you are sitting in your chair to put the ostomy. So important!! Also remember to be patient what works in the hospital may not work at home. You WILL have leaks don't get frusterated it WILL get better. It is going to be lots of trial and error the first few months.

The nurse said stents to drain the urine with mine they had 2 stents 1 in each urter that drained directly into the ostomy pouch. The WOCN did trim them after surgery because they had left them a bit too long and was hindering when we went to change the appliance.

[Smashms]

Oh and 1 more thing the UOAA.org site is a great site for info a d support as well. Most have colostomies or ilealostomies but there are quite a few who also have ileal conduits as well.

[Duck]

I also had a Super-Pubic . So many U.T.I.s . Quality of life so bad , so decided on Ileal Conduit . just like you are going to do . Best decision I ever made . First 6 months a few U.T.I.s . But now been over 3 years since I had one . You will see its awesome not to have U.T.I.s anymore .

[sledgrl]

Thanks for the advice and resources.

Originally had wanted a mitronoff but urologist won't do it, and now I agree. I don't have the dexterity to push catheter through and have insomnia so rely on sleep meds. Would have to cath every 4 hours even in night. Seemed like still a chance of UTIs, especially since my bladder is already colonized.

[Smashms]

As KLD has said you are not immune to UTI's however your chance is lowered quite a bit. I change my night bag every other week. And my appliance every 3-4 days. And i rinse my night bag out with very hot water every morning. This really helps cut the infection rate down. Also when you change i would use a very mild soap and wash your stoma area as well with the soap and some warm water.

[weeler]

In about 6 weeks I'll be having my bladder removed for urinary diversion surgery. Theyll take a piece of intestine to make a stoma and I'll wear a urine-ostomy pouch on lower abdomin.

Have had a suprapubic catheter for almost 3 years with pretty consistent UTIs. Since Nov, I've been hospitalized 3 times (each 6-8 days) for kidney infections of UTI that turned septic; so I know I need this surgery.

i have a pre-op appt to try out ostomy appliances and figure out location on abdomin for stoma. I'm most nervous about initial recovery in hospital while bowls are trying to return to 'normal'... and this is the same hospital I was in 3 years ago where they ignored MRI report so the herniated disc caused me to become a quad. I love my urologist but she only does surgical at this hospital so I cant choose elsewhere. Surgeon is supposed to be getting me a private room so my mom & my service dog can stay overnight with me.

Looking for anyone who's had this surgery...How did your recovery go? How long was hospital stay after? Any advice? Does the suprapubic site get closed surgically or left to close naturally? Any general advice for hospital stay?

I'm in a similar situation. Any update to share, sledgrl?

[SCI-Nurse]

Sledgrl is unlikely to see your reply, since she has not visited our forums since October 2016.

(KLD)

[Brinda41]

Weeler... did you ever have the operation done? I am also in that situation where my urologist wants to remove my bladder and do the Ileal Conduit. I feel so old and weak that I don't think I could make it through it. I am on my own for the first time in my life, 38 years post. C-4/5 complete Quad.

[crags]

The inability to take anti-spasticity meds is absolutely huge. I take both baclofen and tizanidine. I once had a small bowel obstruction requiring an emergent insertion of an NG tube, which necessitated suddenly withdrawal of these meds. The spasticity was total body and absolutely frightening. The staff thought I was having seizures. I think they were able to give some IV Valium, though I don't remember how effective it was.

One thing we did try was crushing up the spasticity meds, mixing them with some saline, and using a syringe to inject them into the NG tube, which was then plugged off for about half an hour, if my memory serves me correctly. This would, in theory, hopefully allow some of the meds to pass through the stomach before the NG tube was unplugged and they would get sucked out again. They would then, again, in theory, make their way through the intestines to be absorbed before they got to the obstruction area and hopefully keep some of the spasticity in check.

After my augmentation surgery, I had so many tubes it was hard to get into a chair, with the IV, pelvic surgical drain and suprapubic catheter. It was hard to keep all of these straight, without tension, and with all of the appropriate drainage bags in place. It was just easier to stay in bed. I believe I did sit up with my legs off the side of the bed.