Sorry again.

I wasn't going to make a separate topic for this but I'm really worried about this and I really need prayers and encouragement and I really need God's guidance, wisdom, and peace in one of the most difficult moments of my life right now.

Ok so here's how the story goes, long version because I don't want to leave anything out but just want to express everything I'm feeling and experiencing right now.

Ok so. I've had a chronic medical problem for years that I've let slide since I was a teenager and possibly younger than that but I can't prove it because to be completely honest with you, I don't remember. I am a 39 year old male for those on CF who don't know me and this is extremely embarrassing for those who do know me here on CF but it's time I do talk about this and I'll definitely talk about it to my doctor tomorrow when I see him to talk about this. So when I was a teenager I remember not regularly pooping for the longest time up until now when I was 39. I remember once when I was nineteen years old I had complained of intestinal cramps so bad that my mom took me to the clinic at the local hospital there the doctor took xrays for what she thought would be broken bones. But what she had found when I was about 19 years old was that I was backed up with fecal matter up to my stomach area (sorry for the gross picture but it's medically relevant) and the doctor was like "oh my God. No wonder you're getting cramps we need to clean you out immediately" so my mom who was a nurse got some bombs and I don't remember if that cleaned me out or not I remember that we didn't ignore the problem but I don't think I got any better because the backup still got worse and worse over the years. Fast forward to covid a gi doctor tries to do a colonoscopy on me and there's so much buildup he cannot perform the operation and he tells me "this is not normal build up I want to clean you out so that I can investigate further" but before he could do so he had to switch hospitals. Now in 2024/2025 I have a gi doctor that just doesn't care. He throws linzess at the problem and when it doesn't work he just says "well that's normal ill see you again in 8 months" and now 9 months later he never scheduled a follow up. And now just recently within the past month? I'm having difficulty peeing now too and my urine output is being affected and I'm deeply concerned.

Now i know what youre thinking and i didn't just ignore this problem over decades. I've told plenty of doctors once I knew and recognized what constipation was (because I had been constipated for my whole life so I didn't know that constipation was a problem I thought it was something normal. My mom was a nurse but we never really discussed normal bowel function in our house so like my schizophrenia symptoms this went undiagnosed and untreated for years until it became a big giant problem.) And doctors all over have tried and tried to unblock me with no success. But I think they're trying to unblock the wrong problem I think my problem might be something neurological or bowel related because I haven't felt the urge to go poop almost ever in my life. In fact my wife had to tell me what it felt like to have that urge because I had never experienced it before.

So now my doctor is very concerned and that's got me very concerned. I see him tomorrow and... I don't know what to tell him. I want to tell him everything including that I haven't had the urge to poop like... ever. I remember that once when doctors were cleaning me out that i did experience that once and that once my digestive system was working. So my digestive system CAN work but it takes A LOT of meds. And that's a big clue as to what's wrong with me i think. I know nobody here is a doctor I'm not asking for a diagnosis but I am asking for support and prayers. Prayers being the big thing because, I am scared out of my mind as to what could possibly be wrong with me. I mean now I'm barely peeing at all so whatever wrong with me is starting to affect my kidneys as well. I had my kidneys tested and they came back as functioning normally but... I don't know... I need Jesus here...

I think its more than I'm just a fat guy though... and it's definitely not all in my head something is wrong and I'm afraid as to what it possibly could be now that I know that all of this is not normal.

Pop D. said:

Heavenly Father, Holy is Your Name, we pray You will heal Neostarwcc and provide his doctor's guidance for a correct diagnosis, in the Name of Jesus, as only You can do. Amen and Amen.

Dunno about the GI problem, but you might want to look into the possibility of kidney stone buildup, that can block urination.

Click to expand...

I will bring that up to my doctor this afternoon when i see him my appointment is for 1:30 pm (about 2 hours from now) . I also looked up on ai what could be causing the lack of not feeling the urge to go (and I asked my mom as well) apparently there is a nerve disorder called Neurogenic bowel. But what i want to bring up to my doctor is that with neurogenic bowel is apparently youre supposed to have a lot of incontinence with it and I dont have that in fact ive had the exact opposite of that. So I wanted to ask him or maybe a good qualified gi doctor if he doesnt know if thats the case in all patients that have that nerve disorder.

My doctor thinks that my not peeing much may be a combination of the hot weather and me not drinking enough water with the torsemide that ive been taking because he said my kidney tests came back perfect and my kidneys are working perfectly which actually eliminates 99% of what could be wrong with me otherwise. He doesnt think my constipation and my lack of urination are linked he just thinks its simply a mix of not drinking enough water and not the hot weather we've been having if after ive addressed these things and im still having problems then we can investigate other issues but my kidneys are actually functioning great right now. He put me on a lower dose of linzess and wants to try me on two different laxatives to give laxatives one last go before referring me to a gi doctor to see if he can unplug me himself. If he cant then we will go the gi route and they can do some investigating into what might be actually wrong with me. If its something neurological I may need surgery. But... thats a last resort he said.

Im still not peeing much and now it hurts to urinate despite drinking 3 liters of water yesterday and 1.5 liters of water today so i dont think a lack of water is the problem. Will be calling the doctor tomorrow morning and seeing if I can get a bladder scan sometime tomorrow theres definitely something wrong with me.

So they found protein and blood in my urine today they're running a culture that will take a few days to come back. If its negative I'm hoping they will order more tests but in the meantime im on precautionary antibiotics for a uti just in case it is one.

I think the antibiotics are starting to work I noticed my urine has much less bubbles in it today and it hurts a lot less to go to the bathroom so I'm starting to suspect the culture is going to come back that I had an infection after all. I'm still not peeing much but one issue at a time.

I cant pee at all today im headed to the emergency room after I grab a bite to eat my wife is going to take me and then visit me after shes done with work.

I'm back from the ER. it's bladder retention. There was 603ml of urine in my bladder and my penis was infected. My urine is clean no uti and the culture from the other day came back and there's no bacteria in that urine either. They drained over 500ml of urine at the hospital and sent me home with the catheter and want me to wear it until i can follow up with a urologist. I also have to followup with my doctor next Friday at 1. Hopefully the urologist finds out what's causing my urine retention because I don't want to wear this catheter for forever.