Seeking advice on new stents for urostomy or alternative surgical options

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Traveling Lady
Mar 31, 2011 1:10 am
So I am fairly well recovered from my recent colectomy, but now learning that the radiation 15 years ago continues to lurk in other organs. I've been dealing with kidney blockage, had stents inserted in both urethras at the same time as my December colectomy. In February, I had signs of urinary blockage (thankfully not painful like colon blockages!) and the urologist decided to change out the stents. But he found them encrusted and decided not to replace them as the encrustation could be adding to the blockage issues from strictures. So I've been looking at a possible urostomy for the past 2 months.

My urologist has heard from some of his colleagues that there are now some metallic stents that seem to be more resistant to encrustation and better handle the strictures. So my question is, does anyone have any experience or knowledge of these new stents? If they don't work, I would have to get a urostomy or some kind of connection to my right side, which would have to be sucked out with a catheter about 6 times a day. The urologist said that hooking the urethra to my current colostomy site is a bad option due to incredible bad odor.

I hate the idea of another bag. Any advice on these various surgical options?

Thanks, TL
Past Member
Mar 31, 2011 3:07 am

I don't know anything about these metallic stents, but it certainly sounds worth a try. I'm so sorry you've been dealing with such problems. After the new stents, is there a chance you could alter your diet in such a way to make your urine less "crust-inducing" (for lack of a better term)?

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Traveling Lady
Mar 31, 2011 11:42 pm
Herc,
I asked my urologist the same question. He claims it's due to the radiation and altering my diet won't help. Like many of this illustrious group, I'm getting so tired of dealing with one thing after the other. Surgery, blockages, pain, depression, kidney blocks, insomnia, more depression, more insomnia, more kidney blocks, .... Still, I know that I'm far better off than many.

I'm supposed to get a new flight physical due to the surgery. I operate lasers on a small plane without a bathroom. Told the flight surgeon that I was actually better off flying now with my colostomy -- don't need to fast before flights anymore. And, if I do end up with a urostomy I could fly all day. Gotta look at the bright side.
junopete
Apr 01, 2011 3:37 am

I had all kinds of issues with ureter stents all last fall. From my bladder to my kidneys.
I don't buy one word what your urologist is telling you.

To begin with, if the stents are "crusting" up, why hasn't he taken a sample of the crust to see what it is made of? Uric acid, perhaps calcium? They are made up of something that is mineral.

Whatever it is, it has to be coming from your kidneys.

Has he mentioned a "lithotripsy" (sp), that is where they open the ureter and make it larger in diameter.

This whole thing stinks of incompetence.

This is not happening just because of radiation 15 years ago. Don't buy it.

Could be something very simple like hydrating more or taking a supplement to counteract what is causing the "crusting".

You need to get another opinion from someone who is "sharp" on the subject.

Good luck.

Rick.....

Traveling Lady
Apr 02, 2011 4:34 pm

Thanks for the advice, Rick. I did spend a lot of time last weekend on urethra blockages and crystal formation. It looked like most things in my diet and even the Benadryl I take every night for sleep have the potential to cause crystals in the urine. I will see my regular doctor on Monday and I'll ask her opinion and if I should see another urologist -- I have complete trust in her advice.


Carolyn
 
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Missymo
Feb 17, 2016 12:22 pm

Has anyone had a bit of blood on actual stoma when changing your bag? These last couple of times there seems to be a lot more but lightly smeared blood on my wipes. Should I see stoma nurse??

Mrs.A
Feb 21, 2016 3:56 am

Hi Missymo,

I have, on occasion, had a small amount of blood on the wipes while cleaning my stoma. I don't think it is a problem as long as the blood stops and is a small amount. If you are uncomfortable with what you see, then maybe a call to the nurse would help.

Missymo
Feb 21, 2016 9:19 pm

Thanks, Mrs. A. I'm going to have it checked out. Tell me, please. Do you get inflammation pain in legs and feet? Or is it just me?

Mrs.A
Mar 06, 2016 10:58 pm

My feet have issues with pain, not my legs so much. Hope you're doing better at this point. Curious to know what the doctor may have told you.

Missymo
Apr 17, 2016 7:51 pm

Mrs A, pains in my legs usually means I'm not drinking enough or a UTI. Mind you, I hate drinking a lot of water! Probably because I have to!! Ha!! A lot of my troubles are from radiation damage years ago!! Hope you are well. x

Mrs.A
Apr 22, 2016 11:51 pm

Missymo,

I'm hanging in there, thanks.

I hear ya! I'm not a big fan of plain water so I add some fruit unless my body tells me plain water is what it is craving, then of course I drink it up. I work indoors so the air conditioning is on in the warmer weather and it is cool enough that I don't feel like I need water. As soon as I'm out of the air, then oh yes, water is what works best to quench that thirst and keep our bodies cool.

Missymo
May 31, 2016 3:17 pm

Well, back to square one! Having horrific vulvar pain and bowel blockages. Still telling me it's radiation damage from 25 years ago plus surgeries. Since not one single nerve pain has worked, so it's £200 consultation just to see a private pain team. But so desperate for pain relief, I have no choice but to pay! I want my life back... again!