How do you travel / fly overseas with the potential of hematuria and urine blockage resulting from radiation cystitis?

[Teddy28]

A few weeks ago I was in the emergency room at my local hospital because I could not urinate anything but a few blood clots. The pain was unbearable until they could catheterize me with the out being red urine and many large blood clots. The only trigger I could think of was straining for a difficult bowel movement a short time before. I think I lost a lot of blood since my hematocrit etc was down 10%. I stayed overnight after the urologist aggressively irrigated the bladder. No further bleeding was evident later that evening. A CT scan of kidneys was normal. A cystoscopy 10 days later showed radiation cystitis from salvage radiation 6 years prior and this was the first episode I every had. I could see the blood vessels prominently near the part of the bladder closest to where the prostate was and my medical oncologist had advised that these blood vessels become more fragile overtime due to radiation.

I asked my urologist about learning to self catheterize and he advised against it, even as an emergency measure. I enjoy cruises and he said most ships are equipped like a community hospital and would have catheters available. But I worry about being on a 7 hours plane trip if this happens. I also wonder what other possible triggers there are that could bring this on. I have not found much online that is helpful. Nor do I know about frequency of occurrence or repeated occurrences.

Appreciate thoughts on this troubling topic.

Teddy

[mrscruffy]

Not sure why he doesn't like self catheter, my father in law has been doing it for about a year now. Kidney failure

[John438]

Hi Teddy,I have had two incidents 6 months apart of having to be hospitalized due to blood clots blocking my urethra. Without going into too much detail it was one week the first time and 10 days days the second time due to the added bonus of having COVID pneumonia. My urologist wanted to give me an ileostomy, but since I already have had colostomy due to radiation proctitis I really did not want to be a two bag guy. I managed to find a surgeon who didn’t want to cut first and suggested I try formalin injections in my bladder to stop the bleeding. It’s been one month and no traces of bleeding plus he can up the dose two more times if needed. At this time I’m very leery of traveling as the thought of being stuck on a plane for that amount of time would be worse than torture. It’s your call but for the time being I think I’ll stay closer to home and see what happens.

I’ve also had 159 hyperbaric treatments for the proctitis and cystitis with no luck.

[Teddy28 in reply to John438]

Do you have any idea as to what set off an attack of bleeding?

[John438 in reply to Teddy28]

Not really sure but it could be caused by the my recital spasms which makes me feel like I have to pass waste even though I had the colostomy 4 years ago. And the meds to stop the spasms and the pain do little to help.

[Lyubov]

My thought is that you should find the very best urologist you can for what sounds like radiation cystitis. My husband had similar treatments (RALP 2014; IMRT 2016). Starting early 2019, he experienced hematuria/bleeding off & on; then blockages from blood clots). It has been a terrible journey for him. I hope you can find a top-notch doctor, and I would not go too far for fear of another blockage. Best of luck to you!!!

[Teddy28 in reply to Lyubov]

Do you have any idea as to what triggered the bleeding episodes? My IMRT was also in 2016. Does your husband self catheterize in emergencies?

[Lyubov in reply to Teddy28]

As I understand scar tissue can develop from radiation treatments (which can damage healthy tissue, as well as the cancerous tissue). This scar tissue may not heal completely. In my husband's case, in my opinion (no docs confirmed this), he over-exerted himself doing major home renovations, preparing for moving, and finally after several months, I believe, the strain & excessive-activity stirred up the scar tissue. Thus bleeding. It started slowly at first. Uro did several procedures to "ream out" the scar tissue; he had the serious flushing out, just about everything was tried. After several months in external Foley catheters, incontinence developed & persists to this day. And yes, he self-catheterizes 3-4 x day. It is dreadful for us. In our case his bladder bed & his urethra are involved. But please remember: everyone is different. Please research radiation cystitis & please find the best urologist possible. Very best wishes.

[cigafred]

I had recurring radiation cystitis and occasional ER visits to clear the clots. Had all kinds of scans, tests, and ultrasounds. Then six weeks straight of constant heavy bleeding. What finally cured it was a drip of amino-caproic acid. That was six months ago, since then usually clear, occasonally a tiny bit of blood or a miniscule globule, and a four week period when I had significant bleeding on about half the days.

[Teddy28 in reply to cigafred]

Does your urologist think you are cured or rather in a long term remission? How long has it been since you have not had any bleeding? Do you know what triggered the bleeding episodes?

[cigafred in reply to Teddy28]

Cured? no, he said it would come back and, as I said, it did. I often have a microscopic spec of blood, occasionally a little blood, during that one month (ended four weeks ago) many instances of clots and lots of blood. Trigger almost certainly was poorly done salvage radiation, aging doddering radiologist at the hospital never told me to keep a full bladder and I therefore hit the rest room, conveniently located right at the entrance to the equipment room, before treatment.

[Teddy28 in reply to cigafred]

I guess I am wondering what caused the episodes when you started bleeding. exercise? straining during BM? or do you have no idea? I know radiation was responsible ultimately.

[cigafred in reply to Teddy28]

No idea, they seemed to have no relation to exercise, alcohol, or anything else.

[Teddy28]

Nalakrats, so this is the dilemma. I have no trips planned for the remainder of the year however I also don't want to avoid plane / overseas travel the rest of my life because of this one episode.

[Fightinghard]

Teddy. I have same issue and have avoided long flights or sitting more than 2 hours at a time such as car trips or movies. Stay well hydrated to keep flowing frequently. Plus 3 prunes every morning with breakfast. Helped me

[Teddy28 in reply to Fightinghard]

Thanks for that advice. I have started the prunes as well as stool softener

[middlejoel]

This is probably a stupid question but would it help to use a blood thinner to prevent clots?

[John438 in reply to middlejoel]

No such thing as a stupid question here. I have been taking baby aspirin for 35 years and it has had no effect.

[Hidden in reply to middlejoel]

When I had hematuria (blood in urine) the last thing I wanted to do was to take a blood thinner.

[cigafred in reply to Hidden]

Agreed. During occurances I also stop MCP and nattokinase.

[Teddy28 in reply to middlejoel]

I think the clotting of the blood when it mixes with urine is different from the clotting you minimize with aspirin, plavix etc. I am not certain however.

[middlejoel in reply to Teddy28]

Like I said.... A stupid Question. My thinking was that since blood thinners help prevent clots in the first place, no clots no bleeding?

[Hidden]

I don't believe your urologist. I don't believe that a ship's medical crew is prepared to catheterize anyone. Why? My local 'urgent care' facilities refuse to do that so I'm skeptical that the people on ship would be able to. I wasn't in dire straits but remembering the horrors of being in retention and depending on the ER people to save me I wouldn't travel without my own catheters. I never had to use one but having one available gave me some peace of mind.

[Teddy28 in reply to Hidden]

I also will plan to travel with my own catheters. What French size do you use? Do you travel much by air and do you carry these with you? I agree about the peace of mind and in my case as a backup plan or insurance.

[spencoid2]

I also have radiation cystitis and occasional complete blockage. I see no reason to not self cath. Any good doctor or nurse can show you the few tricks and how to not cause a false passage and damage. doing it yourself you are very aware of what is happening and it is very difficult to injure yourself. Iwent to the ER with a total blockage and the ER doctor rammed a Foley into my prostate and inflated it. Still have not healed completely from the damage done 3 years ago. I always keep catheters in the car and take them with me when I travel. I would not count on their being a good doctor on a cruise ship, there wasn't in the ER in my rural location. No problem in a mid sized or bigger city.

I was a little freaked out when I couldn't get a catheter in because of the long trip to a decent hospital. I bought a bladder scanner so I can tell when it is time to head to the hospital. found a tapered tip cat that was easier to insert and did a treatment with castor oil that I think helped soften some of the scar tissue. My bladder now feels feel at about 250 ML whereas it should be more like 750. This is due to straining for years which has thickened my bladder wall.

[Teddy28 in reply to spencoid2]

This is very helpful. May I ask what diameter (french size) you use? I plan on carrying catheters with me if traveling, especially flying. Have you determined what triggers your bleed episodes?

[spencoid2]

I have never figured out what triggers bleeding development of clots or shedding of tissue. It remains a complete mystery to me. I have both 14 and 16 FR tapered tip (Tieman) coude catheters as well as a bunch of others that I have had great difficulty inserting. After I applied hot packs of castor oil (mentioned in other of my posts) it has been much easier to insert the catheters so I probably have hundreds now that can work. My main problem seemed to be scar tissue right at the bladder neck. The coude tip would cause bunching when it hit the bladder neck and a straight tip was actually better at that point. It did not matter if it was 14 16 or even if I reinforced the cath with a wire, it would not go through the bladder sphincter. The only reason for the coude tip it to navigate the external sphincter which is before the prostate. The urethra takes an upward turn at that point which is why correct positioning of a coude tip (the coude caths are marked so you know which side should be up) it is easier to go through but as I said it can contribute to bunching if an obstruction is encountered. You can achieve the same effect by pressing up on your urethra from the outside just between the base of your dick and your asshole. This straightens out the urethra so you might be able to use a straight cath to avoid bunching.

Before I had the disaster in the ER, I was able to insert a catheter but the lumens in the small 14 or 15 FR catheter would not pass the major clots in my bladder. I tried several times and decided to go to the ER. I am quite a bit better now and do not anticipate such an occurrence again but just to be sure (remember I live 2 hours from a decent hospital ER and 4.5 from a good one) I bought some 18 FR three way caths on e.bay. These can not be prescribed because one does not self cath with a three way cath. The lumens on the large three way are huge and capable of passing much larger clots. I do not recommend this unless you are practiced with self cathing and if you have no other options. The three way is a Foley so it will stay in place if you inflate the bulb with a syringe. DO NOT INFLATE THE BULB UNLESS YOU ARE ABSOLUTELY SURE THE CATHETER IS PROPERLY PLACED This is mentioned in all instructions on using a Foley catheter and urinary catheterization is one of the most common ER procedures, but the doctor who "treated" me did not know this. I heard her googling how to use a three way but she missed this little point. I bought the three way caths because that is what I could find in a larger size. You do not need a three way for irrigation as you can fill and empty the bladder through a single port. In addition to a large catheter you will also need a toomey suringe and a bottle of serial saline. It is amazing what they charge online for this but you can make your own pretty easily following on line instructions. I found an online doc in a couple of places that suggests that a dilute solution of hydrogen peroxide (be sure to find recommendations on dilution) to help break up clots but my urologist does not approve of this. Still, if I am completely blocked and have a lot or urine in my bladder I will try anything.

[Teddy28 in reply to spencoid2]

Thanks again for your reply. The details are extremely helpful as I plan for the future.

[cigafred in reply to spencoid2]

Same here, thanks.