I’m new to all this. This is all part of a bigger story. I already have a stoma after my gp left me for three years with bowel problems and did no investigation. My bowel burst, I ended up with septic shock and nearly died.
Last year they found I had a peritoneal inclusion cyst which was small but they drained. It came back at Christmas time but it was decided that they would leave it. I kept wondering what happen if it got bigger.
Well, it did get bigger.
I went into urine retention in March this year, was catheterised. Had bloods done but wasn’t told of results.
fast forward to the last couple of weeks, my stomach started to swell and it was rock hard. Urine was just a small dribble. And then by chance I was seen and monitored by a trainee GP who told me my gfr was 22.
I finally got admitted to hospital on Tuesday and have found out it’s hovering at 20! No one bothered to check my kidney function in March when it was 22.
I just asked one of the drs on the rounds this morning and he said my creatinine is 224??
They have said they are ‘hoping’ my kidney function goes back up now that radiology have drained a huge amount of fluid off the cyst on Friday and I still have the drain in. I have to go back down to radiology tomorrow to see if they want to put a drain in the other side of my abdomen incase there is still still fluid blocking my kidneys.
I’m very angry that this has been left to happen when it was clear my kidneys were failing way back in March. And no one can give me assurances that my Kidneys are going to be healthy again.
I just wondered if anyone else had gone through anything similar and also can explain what the creatinine numbers mean. I know that 20 gfr isn’t good is it?
They’re pumping me full of fluids and potassium. And I still have a catheter in. Along with my usual ileostomy.
I hope this is all ok to ask and explain.
Thank you.
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AndreaBabyC
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Hello, 2 very different problems. So, a gastroenterologist/ colorectal surgeon or physician is needed to discuss your bowel. Did you have a reason given for your bowel problem?
For Kidneys you need a Nephrologist. Normally based in the Renal Dept at your hospital. I'm sure you have one now. If they find the cause the kidneys might recover some.
Good Luck and come back with your progress.
I'm surprised they're pumping you full of potassium. That is one of the nutrients that CKD patients generally have problems filtering and end up with excess. I myself have an issue with that. My value floats between 5.1 and 5.8 which is kind of high. Get too high and you have heart issues.
I'm so sorry Andrea, your treatment has been draw-droppingly awful. You should have had a second blood test and referral to nephrology in March. Do you have access to any results prior to March?
Creatinine is a waste product that comes from normal wear & tear on muscles of the body......and foods like red meat. It is filtered out by the kidneys and excreted in urine. If the kidneys are struggling they are unable to do this as efficiently..........hence serum creatinine rises.
I hope that they have a nephrology dept at the hospital you are in, because I believe that their input is very important in your current treatment plan. If I was in your shoes, I would insist on it...........and how can they really justify refusing?
Oh wow! You need a break from medical emergencies! I see that you're in the UK while I'm in the US. I can only refer to my hubby's experiences as he experienced kidney failure, then dialysis, and finally a transplant so my perspective is, of course, from across the pond. My hubby had an internal ureter leak that required a hospitalization and involvement by others and included putting in place drains (one was there for two months) and more. The radiologist that you're seeing in charge of draining and collapsing your cyst is probably a highly specialized "interventional radiologist". S/he is likely acting on the orders of a nephrologist affiliated with the hospital since your kidneys are involved. The nephrologist also keeps a close eye on your creatinine levels (not so much eGFR at this point) to see whether or not that is moving towards the normal range while you're in the hospital. When my hubby was hospitalized, they kept track of his creatinine levels via blood tests. However, I assume your doctor is using your urine. If so, urine creatinine test results are usually reported in mg/dL (milligrams per deciliter). The normal range is usually around 20 – 275 mg/dL in women but the specific range varies according to your physical size and dimensions, etc. There also may be variances among labs, too, In my opinion, I would ask the nephrologist tomorrow what the new lab data says, what the trend is showing, and where that places you. You may also want to bring up the blood tests and ask if those collaborates the urine tests. I "sense" that your creatinine may be going down; if so, that's a very good thing. If it's not making much improvement, I would also ask that person if s/he is a nephrologist and ask if he/she is willing to refer you to one when you're discharged if things don't return to the optimal range soon. If that's not possible in your country, then ask to see a very good general practitioner who can see your regularly and run bloodwork - and by regularly I would strive for every three months over the next year even if you're okay upon discharge. Then, I would also keep a sharp eye on the labs myself and take action whenever things don't seem right. Stay positive and be proactive. I truly hope you're in good hands and that you are soon on the path to good health! Hugs!
Well the doctors on this ward are saying if my kidneys don’t start working properly again they will seek advice from “the kidney guys” that was one consultants words.
I might be able to get hold of my creatinine from before March but I will need to get in touch with my GP.
I’m also planning on changing GP as well as there has been too many mistakes happen. And I nearly lost my life when the bowel burst and I had septic shock.
I’ll ask some more questions when the drs come round tomorrow morning.
As you are in the hospital, ask to see the Nephrologist. They can refer you. Your GP should have referred you before now.Megacolon-yes very nasty. I had an emergency op to remove mine before it burst, I had UC.
Sounds to me like you should see one of the "kidney guys" now. I would ask to see a nephrologist, even if it is just to get his/her opinion of what is going on and what that means for your future.
i concur. Kidneys aren’t like rubber bands—it takes effort for them to bounce back. I don’t see much effort going on here at this hospital. Ask to speak with a patient advocate, pretty sure they have those there. You need someone to help as you are so ill and it’s hard to advocate for yourself. Best
Creatinine numbers are good at 1 and 1.5. The higher it gets like 5 you are in danger 2.24 which I believe u stated was your number thats not too off the charts but must be addressed. The GFR numbers are normal from 60 to 120 when starts slipping below 60 needs to be addressed your number of 20 is waytoo low needs to be addressed by a nephrologist a kidney doctor goggle gfr for reference
Update from the drs this morning. They are FINALLY getting the renal team involved since my gfr hasn’t risen. I’m also going for an ultrasound this afternoon.
The NHS is a huge mess now, peoples lives are being played with and things aren’t being investigated. Sadly our government has run it into the ground. It’s quite frightening being at the mercy of these people who have been negligent several times to me and many others.
I’m glad they are no involving the renal team, it’s about time. I should have been made aware of this in March but I have a feeling the gp didn’t even check my results.
Thank goodness they are now at least getting the renal team involved in your care. Fingers crossed for the scan this afternoon, and please let us know how you get on.
There is lots of good advice and support here. Sending hugs 🤗🤗🤗
Hi AndreaI'm based in Scotland, so i know the frustration you are feeling, although not on the level you have experienced. I went to my GP for months complaing of tiredness and they kept doing blood test etc and all I got was..some levels are concerning but we will do more observations. Fortunately for me, a locum just happened to look at my results and was horiffied I had not been sent to a renal consultant. That was 7 years ago. I started dialysis 3 months ago. The one thing I have learnt in those 7 years, do not take no for an answer. See if you can get the Patientview app. It is usually just for renal patients. It shows ALL your blood test results. You can then do your own research etc based on your levels. You have done the right thing joining this site. The people on here are amazing. Lots of very knowledgeable people. They are also great for keeping your spirits up, when you are having a rough time. Look through the archives etc there might be someone who has also gone through, what you are experiencing. Fingers crossed your kidneys start to improve. Its a very difficult time but try and stay strong. All the best.
Those without a large bowel have different requirements. Very little fibre can be dealt with. We eat what we can but they cannot eat very high fibre. Water itself cannot be drunk in excess without re hydrating yourself with salts and vitamins. Water can wash you out.
This is fantastic news! Finally, you're getting the proper doctors to look at you! I sincerely hope your situation improves. Let us know how it turns out!
Welcome to the club! I have ckd after 30 years of a high output ileostomy. You need to take the ckd dietary advice thru an ileostomy lens. We need more salt and potassium due to dehydration. I do have slightly high phosphorus and take a phosphorus binder. I should have been on anti diarrheals 30 years ago. I only got them after I got ckd. I too had ckd for over a year before my Dr even told me. I was hospitalized 2 years ago with a eGFR of 7 over a hot weekend. Two years later my eGFR is hovering at 25. It is very common for Dr to not tell us we have it. Oh, yeah, we also need to avoid fiber and veggies which is the core of the plant based ckd diet. I have a parastimal hernia so am very prone to blockages.
G Thanks this makes a lot of sense. My appetite is terrible anyway. But I agree the things we are told to eat are totally different to what what I’ve read for ckd. Although I can’t even eat chicken anymore. I live off pasta and strawberries. I was told no fibre at all. I thought I had replied already. I’ve had a dr come to see me before he had the result of my ultrasound claiming he’s spoken to someone from renal and they said they’re not that concerned yet because my Kidneys are functioning as they should?!?
I’m so confused. I don’t believe he’s even spoken to the correct people. Or person. I asked if I was in Ckd and he said yes. He said we’ll continue with the fluids tonight and we’ll monitor how you are.
Radiologist who did my ultrasound said she wasn’t happy with my right kidney.
I want to ask to speak to a kidney speacist face to face instead of second hand information and when their plan is ,@.9
My CCG (or whatever they are called now) doesn't have a renal/nephrology service, although I believe they are able to action emergency dialysis. The nearest is in a neighbouring CCG 25 miles away (30 mins by car, and 2hrs for the poor souls who have to travel by public transport)...........so, it may be the same where you are.
It might be worth asking if they actualy have a nephrology dept on site, and if not ask for a transfer to where there is one. I don't know what reaction you'd get to that though..........probably lots of reassurances that your current treatment would be the same.
In my 6th year with current GP's. They still do not recognise that I have an Ileoanal pouch. They do not know what it is, they do not know I have one. They think I still have UC despite not treating me for it! A couple of them have seen my heavily scarred tummy, but don't know what it is? Imodium is prescribed but says to take after diarrhoea! They know nothing. Things missing off my medical history despite me telling them. Try and find people that know what they are talking about!
It is very difficult to find Dr who understands ckd and life with an ileostomy. I have found less than 10 of us online. We really have to self educate and explain our own biology to medical people. The other big thing to remember and reinforce with Dr and pharmacists is we can't take any meds that are slow or extended release, nothing with a coating and nothing that absorbs in the large intestine. When we start dialysis we also have to be vigilant that they don't take too much fluid off. I'm so afraid of that. I lose most of what I drink straight into my bag. I hate going to urgent care, er or to substitute Dr. They just don't understand I have no colon.
Are the new water multiplier drink thingies I see any help at all? Maybe they would rehydrate ya’all better? Must be difficult! I hear you on the no fiber restriction. I have to take steroids daily and have a chronic need for loperamide. Pasta, potatos, no wheat, no vegs—these are what i can eat in a flare. No way does my kidney fit into these diets.
I don't know what the water multiplier drinks are. I drink a lot of Propel and Gatorade Zero. Sadly, many of the sports drinks also include caffeine - which is dehydrating and tons of sugar. I'm not going to keep this weight off or lose more drinking high calorie drinks. I was a Coke Zero addict before I got the CKD diagnosis. Cutting out the caffeine has been a struggle - especially when eating out. Usually the only diet drink available has caffeine. I don't have it in the house.
I looked Barbara, and it looks like the one I saw at our costco was IV Hydration Multiplier. It has three times the gatorade stuff in it, it says. Nothing artificial. LOTS of sodium and definitely sugar, but I don't know the comparison. I know other adrenal insufficient (basically adrenal failure) patients like me need more electrolytes to the tune of it being life threatening. I don't need that thankfully. Anyway, I was curious. I hear you on the weight...hope it gets easier for you
I saw that at costco and even bought some. But it has sugar and caffeine! They are 40-50 calories a glass. Which isn't much for most people, but I'm supposed to eat under 800 calories a day and drink non-stop. I can't afford to drink 1/2 my calories a day.
I remember telling the senior nurse in the surgery that I saw tablets again within 1 to 2 hours after taking them even with Imodium. Her reply: "they will have done their work and not to worry". This is typical.
Keep trying. Ask questions. When they explain sthg ask them to put it in writing 😁 I love their expressions! It does often cause them to slow down and explain things better. If they’re spoutin unhelpful information or excuses, it can let them know you’re onto them. Not that it’s all intentional…but you deserve better
Well, urology got involved thankfully because those numbers weren’t improving how they had hoped.
I am home now. But I have nephrostomy’s done in both kidneys. I also will be seen in 4 weeks time for a nephrostogram.
They plan is to go forward at some point after that and change the nephrostomy’s to stents?!
There was a very small change in my gfr to 27 instead of 20.
They do believe this has all been caused by the abdominal cyst that blocked and put pressure up against the kidneys. But I don’t there are small pockets of fluid that are not amenable to drainage. And they don’t know yet what the surgical team plans on doing long term about this cyst since it can’t be removed.
Really appreciate all the replies. I believe there have been kidney issues before the cyst. I know there were obviously some issues with my kidneys during septic shock when I was sedated in the icu.
I’m just taking it easy and enjoying being home. Hope you are all doing ok.
So pleased to hear that you are home, and that your eGFR is slightly better. You must be so relieved to be out of hospital.
In England the quickest way to find out whether your kidney function has been declining over time is to phone the GP Surgery receptionist (not GP) and ask for a print out of all your blood results for say......the past 2 years. They are legally obliged to do this without charge. You don't have to give a reason for asking, but 'for your records' is sufficient. Then ask somebody to pick them up for you a couple of days later.
On-line access is better, (and is just a simple form to fill in with basic details) but you have to go in person with photo id, which they take a copy of. My NHS results usually appear online the following day unless it's something a bit more complicated, but my last lot were available the same day as the blood draw.
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Brand new and still in shock
Not Sure What All the Lab Results Mean???
Am i truelly in stage 3a ckd. 
Struggling to understand all this.
CKD and Creatinine stages
