I had an emergency admission to the hospital last weekend due to my ileostomy becoming overactive. I tried to deal with it at home for a few days but gave in and went to the GP. Where they were concerned about how dehydrated I was.
my history is complicated. I’m having UTI’s almost fortnightly. I have a history of septic shock but I do worry that I become resistant to antibiotics.
Anyway, I knew last weekend I had bugs in show up in my urine. But when I asked the Doctors at ward round. Instead of one of the drs addressing me, he looked at the dr who seemed to be in charge and said ‘oh that’s probably caused by the stents’
Bearing in mind none of these drs were urologists or specialised in the Kidneys. I didn’t see my urologist or anyone else from that speciality when I was in.
My partner is determined I at least put a sample into our GP because I’m in pain and it feels like familiar UTI symptoms. Antibiotics definitely help. Unfortunately the symptoms tend to just come back.
At my last meeting with my urologist my partner asked her about the amount of UTI’s I was getting, and asked advice. We didn’t really get advice. Just to take antibiotics and if it continues at the rate it is there are other options she has?
So the drs last weekend didn’t give me any antibiotics and becoming more unwell, is it the stents that cause this and should it just be left or do I carry on as I was and ask my GP for antibiotics as well as handing in a sample of Urine?
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AndreaBabyC
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Sorry Andrea I have nothing much to contribute. However I was wondering if you take probiotics etc to counterbalance all those antibiotics. Hope you get some answers soon. Big hugs x
Probiotics work in the large intestine. Those of us with ileostomies don't usually have one. Without a colon I have no gut bacteria - at least none of the ones that work in the colon.
What are the stents for? I don't know what they are.
I do know about ileostomies and CKD though. I've been colon free for 30 years. I'm at stage 4 CKD from the near constant dehydration. I drink all the time to try and replace my fluids. I'm also on two different anti diarrheals now. I wasn't on them for the first 28 years. The specialists expected me to be on dialysis by now, but I've been able to hover in the mid 2s of eGFR. I did a major cut back on caffeine - which is dehydrating, added the two anti diarrheals and increased my fluid intake. If you have a high output ileostomy with lots of watery output I'd suggest you ask your dr about anti diarrheals.
So the stents are placed into my utterers (the tubes that go down from your kidneys to your bladder to remove urine. Because the cysts that grow cause hydronephrosis. The stent open up my tubes up a bit.
I was in hospital last week and they finally agreed to drain some of the large cyst. The problem is there is lots of small collections and cysts that either can’t be removed or due to cost they won’t remove.
But the hydronephrosis has calmed down apparently. I say apparently because I’ve heard all this before and then a few months later my egfr was sitting at 22 for longer than I was aware. And even before they put nephrostomy’s in (I now have stents) whilst in hospital and they had drained the cyst it fell to 20. The drs are very nonchalant about it all. I’ve been given zero guidance on anything kidney related. I guess it’s the same as the after care when I was discharged after being in a coma, having my large intestine removed, learning how to walk and do everything again in Neuro rehab. Even with vac dressing I was discharged with very little help or information about septic shock. Ileostomy’s etc. I learned most of my info about stoma stuff on a fb group.
Oh happy days
I still haven’t got any further forward with them regarding UTI’s. I’m defeated and feel like I’m very small and have no say in my car. At least my egfr is at 40. They think this is wonderful, as they chat amongst themselves. Thing is, it should have never happened in the first place. The cyst should never have been left to grow and cause swelling of my kidneys. 😢
I think the anti-dirheals I’m on are lopirimide? I don’t drink plain water because as you will know yourself it just flushes right through is ostomates. I have some isotonic drinks. And I also add some lemon barley to my water. I’m not a bit coffee or tea drinker. I can take it or leave it. I know it’s a bit complicated because those with ckd are supposed to drink lots of water but then bring an ileostomy into the mix and it makes things a bit trickier.
I remember you replying to my very very post last year when I first found out about all of this. In some ways it was helpful to know I wasn’t alone with the ileostomy and the ckd.
If your output is till watery asked them to give you more anti diarrheals. I'm on two. Loperamide and atropine. I can take up to two of each pill, four times a day. They didn't give me enough at first. They won't give me the liquid codeine because doctors are all refusing to write opiate prescriptions. Luckily my GFR has hovered around 25 for 3 years. Your's is up to 40? That's great! If I'd been given anti diarrheals 30 years ago I wouldn't have gotten CKD.
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