Mucus in urine

[Jshet22]

Hi guys. I feel like I've had a lot of questions lately, but you guys are always so helpful, so here goes. My son has been having recurring vomiting and diarrhea for the last year, but has gotten worse the last 6 months. His gi says its cyclic vomiting syndrome and he will be starting yet another medication. He said basically the part of his brain (the brain stem) that houses the area that controls vomitig is turning on every few weeks causing him to be sick for a few days without actually being sick (like with a virus). A big symptom is thst it is the same exact pattern every time he gets sick which it is.
He did do some blood work and urinalysis to check hydration and stuff. It all looked good except for the urinalysis showed a moderate amount of mucus. I have never heard of this and am curious if it has anything to do with his cf? I never even knew they looked for mucus in your urine, lol. Anyone ever have this or have any clues if it's cf related? Haven't spoken with doc yet, but I am able to review results online. Thank you so much

 

[Ratatosk]

My first thought was a bladder infection, but one would think they'd checked for that as well.

 

[Jshet22]

Ratatosk, thanks for replying. i thought uti or bladder infection, but there was no bacteria found.

 

[Printer]

Mucus is the cause of everything CF. It starts in the lungs and when swallowed goes into the colon. After building up in the colon it will, in part, pass onto the other organs. This is the cause of pancreatitis in CF patients. I don't wish to scare you but this is an important issue.

I would recommend two things, first talk to your Doctor about son using Miralax, second google Steven D. Freedman, MD, PhD at Beth Israel Deaconess Medical Center in Boston. Steve also sees CF patients at Boston Children's Hospital. He will speak with DS Gastro Doctor by phone.

Bill

 

[Jshet22]

Bill thank you so much for replying, I appreciate your knowledge. My son actually had a cf appt. today, which I actually forgot about. He had had so much going on lately so I'm glad they call with reminders. I did ask his cf doc and he said he has never heard of mucus in the urine and had no answers. He said I needed to speak with gi doc to see if we needed to be concerned.
his pft's have dropped again so he is going to continue on the Tobi every other month and is starting a 2 month course of bacterium. He will finish the bactruim a few days before his next appt. unfortunately it will be the last time he sees his cf doc since he is leaving and will begin seeing someone new. My son is very complicated he has a lot of other things going on besides cf, so I'm neverous about a new doc who will be new to the practice. His nurse had already said that she and his current doc have been discussing and concerned about who will take over his care. It has been decided he can remain at children's hospital Pittsburgh until he is 26 which is a load off of my mind.
He is on miralax daily. I am going to google that doctor right now and I thank you again for helping me out. I so greatly appreciate it. Have a nice weekend.

 

[Lynnfield mom]

CF affects all epithelial cells, including those that line the genitourinary tract which is where the urethra is (not the gastrointestinal tract). Similar to what happens in the lung, the alterations from abnormal CFTR cause mucus to be thick and viscous and dysfunctional. This impact happens for all epithelial tissue - lungs, sinuses, pancreas, the liver (CF related liver disease), the small intestines (DIOS or meconium ileus) and the large intestines (constipation); in the GU (not GI) system this causes infertility in males and can decrease fertility in females. IMPORTANT to understand, it is not the mucus from the lungs that makes its way to other organs, these other organs make their own mucus. Some phenotypes have more of a sinus issue than a lung issue or more of a liver issue and less of a lung issue, just like some people are pancreatic insufficient (caused by pancreatic ducts blocked by thick mucus) and some are sufficient . If you swallow the mucus from your lungs/sputum, this is a protein and carbohydrate containing substance and is digested by stomach acid and by your enzymes if you take them. It is NOT the sputum that you may swallow that travels to other organs - the other organs make their own mucus. (Bill seems very nice but he does not not understand some basics here)

So, the mucus in your son's urine is likely related to his CF and if you want/need a doctor you would see a GU doctor or a urologist for your son to discuss if this is a serious or not serious situation.

 

[Printer]

Lynnfield mon is obviously a CF Professional and I bow to her superior knowledge. I am curious though, does the colon produce its own mucus and why are CF Doctors so concerned about patients swallowing mucus if, in fact, it is digested by stomach acid and enzymes? Can I stop taking Miralax or is the mucus that is manufactured by the colon causing the stool back-up?

Also where do I find a Urologist that can spell CYSTIC FIBROSIS?

Bill

 

[Jshet22]

Thank you everyone for the replies. I did put a call into gi doc and have heard nothing back so I am taking it as it isn't anything too worrisome. If I get any further feedback, I'll let you know.

 

[Lynnfield mom]

I confess to being a nurse but not a CF nurse. I like to think of myself as well educated and willing to stay up to date.

yes, the colon produces mucus -
CF docs are concerned about people swallowing mucus because it can cause nausea and vomiting and it is infected

The mucus in your intestines - large and small contribute to the constipation. Mirlax helps and should not be stopped.
Your CF doc should be able to put you in touch with a Urologist and even one who can spell Cystic Fibrosis. Since absence of the vas deferens is a common part of CF there are many urologists who know about CF, your center may even work with 1 or 2 regularly.

 

[Printer]

Lynnfield Mom

I was dx in 1987, 2 years prior to the gene being discovered. CF 101 was much different then. If you have followed my posts here you are aware that I am on a first name basis with two of the leading CF Researchers in Boston. (If you need Lenny Sicilian will tell you who they are). They have confirmed much of what you have stated here with one outstanding difference. Mucus is broken down, in the stomach, to smaller pieces but not "digested". It then follows the stool into the toilet. Along the way, it mixes with food and sticks to the walls of the colon. This causes bacterial overgrowth and extension of the colon.

While I am "short on the basics of CF" I am extremely proud to have been selected from an excess of 1800 CF Patients, from BCH, to speak to a group of Doctors and other Lung Professionals, last November at BWH.

Thank you for giving me the "opportunity" to upgrade my CF education.

Bill

 

[Jshet22]

Just wanted to share an update. We saw my sons GI and asked about the mucus in his urine. He said that typically means he has a uti. But since he tested negative for bacteria and is not having symptoms of a uti he doesn't know the cause. He said if symptoms arise to not hesitate to give him seen sinc he already has kidney abnormalities.

i think maybe with him being on bactruim for the last 2 months, maybe it took care of an infection before it got out of hand. I will be paying close attention to him. Thank you everyone

 

[Lynnfield mom]

Printer - Thank you for your personal reply. I do not follow you specifically although, I notice you do reply to quite a few posts. Your willingness to help and provide insight is very nice, very kind. However, even though you know CF researchers by first name and even though they have said something does not mean it is true. Mucus that you produce in your lungs is not what clogs your gut or ends up in your urine. The stomach and the intestine make their own specific mucus. Try this little experiment...on a sputum sample you cough up, mix a capsule of your enzymes (if you use them) - see what it looks like after 30 -45 minutes. You will see that the mucus is digested.

LM

Lynnfield Mom

I was dx in 1987, 2 years prior to the gene being discovered. CF 101 was much different then. If you have followed my posts here you are aware that I am on a first name basis with two of the leading CF Researchers in Boston. (If you need Lenny Sicilian will tell you who they are). They have confirmed much of what you have stated here with one outstanding difference. Mucus is broken down, in the stomach, to smaller pieces but not "digested". It then follows the stool into the toilet. Along the way, it mixes with food and sticks to the walls of the colon. This causes bacterial overgrowth and extension of the colon.

While I am "short on the basics of CF" I am extremely proud to have been selected from an excess of 1800 CF Patients, from BCH, to speak to a group of Doctors and other Lung Professionals, last November at BWH.

Thank you for giving me the "opportunity" to upgrade my CF education.

Bill

 

[Printer]

LM

Please reread my last post. I said nothing regarding urine.

I am also impressed by your superior knowledge regarding CF. The researchers of which I spoke are both funded by CFF and are "contributors" at the CFF Conventions. I spend appx 28 days a year on the CF floor at BWH, where all of the RN's are trained in CF. It is unnerving to realize that you, not CF trained, are more knowledge about CF than they are.