My wife has had diarrhea and stomach pains for over three weeks. We took her to the doctor this week and blood tests show a GFR of 33. The doctor advised her to drink lots of water and stay away from ver the counter pain meds and we get her tested again in a few weeks.
In just a few days she seems to be getting worse.
We researched renal disease recipes and are determined to do our best to get here better.
She has a history of heart trouble and very high blood pressure. We are trying to maintain that as best we could.
To much degree, my wife goes back and forth from detail, to anger, to scared, to wanting to live, to coping with alcohol... it is breaking my heart seeing her like this. If I could trade places with her I would. I try to take the alcohol away from her but she gets belligerent. I have hidden it from her for now.
From her GRF it appears late stage 3, but everywhere I read it says stomach problems and diarrhea is end stage... I'm not sure what exactly end stage means... is that stage 5? I don't know the extent of where she is at or how much time we have together just yet...
I'm a complete basket case as well - she is my absolute world. She is 56 and much too young. I dreamed of growing old together.
I don't have any family to talk to, and so I sought out this forum I guess because I'm scared like her and could use support in how best to help her and do all the right things for her health. I read that Benefiber helps so I ordered that. Is there anything else I should be doing for her to help?
Please excuse my rambling, I care and send my sincere heart and thoughts to each of you.
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tonyashusband
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Very sorry to hear and sending you and your wife all good wishes. You have reached the right platform. I am sure there will be many here who would be able to guide you.
First and foremost she has to be treated for her diarrhea. Her decline in egfr could also be because of dehydration due to prolonged diarrhea. I am guessing here but diarrhea could cause that. Did the doctor say why she has pain and diarrhea? Has he done any tests/ stool culture etc in this regard? Has he given any treatment for it?
How are her electrolyte levels? Trust her sodium, Co2 levels are in range? Also vitamin D3 and B 12 levels. Some of these levels if they are off can also impact how a person feels.
Among other suggestions would be to eat only boiled and well cooked food such as brown rice, apple sauce, apples cooked and lots of water. She could also take a good probiotic of course all this after discussing with the doctor.
My very best to you. And Btw you are right diarrhea and stomach pain may not be associated with CKD. It’s cause should be looked into by your nephrologist.
When she saw the doctor on Monday she seemed to have gotten over her diarrhea of 3+ weeks... so at that point he didn't give her treatment for it... but yesterday and especially today its come back and seemingly worse. I will do my best to control it and get her in to see him next week. I have tried to get her in to the hospital but she is stubborn. She collapsed over christmas and I took her to ER and they said she was severely dehydrated. She drinks a lot of water each day, though.
Below are scores from her blood on Monday
Creatinine 1.62 (very high)
GFR 33 (low)
Sodium 138 (in range)
Chloride 108 (high)
CO2 38 (in range)
total protein 6.1 (low)
triglycerides 326 (very high)
VLDL 65 (very high)
I really appreciate you taking the time to share your support and thoughts. Especially the diet. I want to do all I can and everything right to help her. She is my world.
Sorry to hear that the diarrhea has returned. I hope you are able to address this and of course it will be helpful to see a doctor soon. There is the risk of dehydration with prolonged diarrhea that may need to be addressed too.
I am sorry to hear of your situation. Know it is hard on you and want to get things stabilized for your wife. You have reached a good forum for support and sharing information on CKD.
You might want to ask her Doctor if there is a suitable CKD diet for her and/or get a referral to a Kidney Dietitian.
Tony, tell you wife to get a grip and get off the booze. What do you think her drinking is doing to her. Alcohol throws off all your electrolytes and fluid balance and can give you diarrhea. Even though it may seem counter intuitive, alcohol will dehydrate you and RAISE YOUR FRIGGIN BLOOD PRESSURE LIKE CRAZY. High blood pressure will cause kidney issues. Also, if she is taking ibuprofen, NSAIDS, or aspirin (all the ibuprofens, will eat at your guts, and cause CKD. She is doing this to herself.
At stage 3, she is not near death so both of you just stop. Become educated on what is good to keep her numbers steady which includes no hooch, lots of veggies and limited protein. I would go into greater depth of a renal diet, but I think you both need to get your minds wrapped around the situation and learn about CKD. There are a ton of programs out there to learn about how you can stop or slow the decline of CKD. Read through some of the posts here on this forum. Go to the National kidney Foundation which has a ton of information.
You are worried about how much time you have together. She is only stage 3.....DIAGNOSED stage 3. that means stage 3... not end stage. She is lucky to be at stage3 because she has every chance in the world to do something about it.
Thank you. I could not agree more with you. Her cocktails are constant battles between us both as I’m always trying to get her to stop. You are right she’s doing this to herself…. I won’t give up… hopefully she can see all this as a wake up call like I go, and quit, and make better choices
This lady sounds as if she is alcohol dependent. If so she will not be able to just stop without help and it would be dangerous to do so. Yes, alcohol will raise her bp, but alcohol withdrawals will even more so. and can be life threatening. Diarrhea and stomach cramps are classic signs of alcohol withdrawal.
I admit she is argumentatively dependent. That's interesting that those are symptoms of withdrawal, I have been withholding about half of her normal cocktails she normally drinks for the past months. As part of trying to wean her off. It isn't easy. And we check her BP eight times a day. I admit when she has a cocktail her BP lowers. Without hers seems to climb. I'm going to have to find a conversation with her doctor out of earshot from her because all hell breaks loose if I speak about her drinking in front of her to him.
If trying to get her to reduce, I think a reduction of around 10% alcohol is recommended, then stay the same until she feels comfortable (this could take a few weeks) and when ready reduce again by another 10%. But she does need to be motivated to do this herself. The problem is that she needs to be the person to take control, not you, otherwise it will just become a battle. If she can do that she might start to feel a bit stronger mentally.
I agree. I have to convince her to take control so we have more time together. On days she feels better she convinces herself that she has beat this and can 'splurge' again. We will try
That's a lot for the both of you. She is very, very lucky to have you by her side. You can both absolutely get in front of this. And stay at stage 3. Definitely read old articles on this forum. Diet, exercise and low stress are all really important.
Booze is an issue. Any chance you can switch her cocktails to non alcoholic ones? There quite a few non alcoholic spirits out there these days. Seedlip and Ritual are two off the top of my head. Many mocktails are delicious. Now, if she likes mostly vodka drinks with very light mixers like soda or tonic.. might be harder to disguise. Or she might really enjoy the alcoholic buzz. If she likes spicy stuff, a spicy mocktail might be a good choice. Chilis give a different kind of buzz.
Try to eliminate processed foods, fast food as much as possible.
Take a walk together in the morning or after dinner. Hikes on weekends. Maybe an indoor bike. I like to ride while binge watching my shows.
The fact that you looked and found this forum...you are already ahead of the game.
Good luck to you both. Looking forward to hearing positive updates!
One thing both of you need to learn is to read labels. There is so much garbage in our foods and drinks. I was reading the label on a health drink and it was loaded with additives such as potassium and phosphates. The sooner you get her to stop self-medicating and actually take care of herself, she could live at stage3 for the rest of her life. It is totally doable if you start now. Part of having a chronic illness is acceptance, and it is the hardest part. Maybe you both should talk to a professional counselor to get the support you need. I wish you the best.
Thank you. I'm reading all ingredients now when shopping, even stuff you'd think isn't processed turns out is. Scary. We're going to watch closely. And I'm going to take your advice on finding a counselor. I do hope I can get her to go. I will do my best. Thank you for your advice and kindness
Yes there are non alcohol beverages, including wine and beer that taste as good as the alcohol beverages. I am at 3b and do walking everyday, weather permitting. On the CKD diet also has stabilized.
Thank you I will look into these. Unfortunately, because of her osteoporosis she is confined most times to the couch and it hurts her to walk extended periods. I need a deep conversation with her doctor hopefully we can come up with a plan that works for her. All my best
I have osteoporosis and I walk every day on my treadmill. I'm 60 and doing in center hemodialysis. I currently do 10 min but am working up to 30 min a day. Walking is an excellent exercise for osteoporosis. I have 3lb weights I sit and do arm exercises. I even walk on dialysis days. See if she'll go to a physical trainer to get her up and moving as that goes a long way to helping.
Thanks you your kind help. We have tried therapy it's been so hard for her. Her spinal bones are fused together with no cartilage. We would do an operation but surgeon doesn't think she's a good candidate based on her health choices. We'll continue to get her exercises as best she can. All the best.
It is crucial to include your spouse in conversations with her doctor. It sounds like she has more than one medical condition that she is dealing with, and all include grief and fear. Level 3 is a scary one- no one knows when or if they will jump to level 4. The medical community doesn’t always agree on symptoms one should have or not have, and offer the advice of eating a plant based diet. The market is full of plant based fast foods but they often have too much sodium. So, preparing foods, which takes a lot of time, and money to buy only fresh , are what’s recommended. It is common with long term illness to feel emotions of guilt , sadness , happiness, and so on. It is a roller coaster ride. And no matter what level someone is at in their journey, that’s a lot to process and cope with. It is important to grieve and to also continue to hope for a future . Lastly, AA and Alonon may provide peer supports to both of you.They even offer supports online. My best to you both.
Thank you for your care and kindness. Yes definitely, she’s included in all conversations with the doctor. She’s just not as engaged in her own health as most of us would be… so I manage all her care as best as I can and I’m a stubborn stickler in helping her as best as she can.
I have definitely noticed sodium in just about everything on the market… it’s awful, but we will go natural everything we can.
Hi there. I am very sympathetic to you as you are trying to manage a lot of things which are outside of your control. I agree with 100% of Bassetmommer’s comments. Your wife must also be scared.
Just wanted to add that as her disease progresses and if her medical team decides that somewhere down the line she might be a candidate for a kidney transplant, the Transplant Center may decide not to accept her as a transplant patient because of her drinking. I’m not saying this to scare you, but I want you to have full knowledge.
Get a liver function test done. There's nothing like seeing what alcohol is doing to your liver to motivate a person to get help. AA are great once someone is off alcohol, but she may need medical intervention to help her stop drinking.
I agree and want to do that and have tried once very, she thinks I'm calling her an alcoholic, which honestly she is but in denial. I will ask her doctor to do one now because I know after seeing her alarming GFR she expresses interest in wanting to live and be better. Hopefully this can be the icebreaker for her finally.
I'm so sorry to hear your story my hearts goes out to the both of you.The first thing is please tell her not to turn to alcohol it will raise her blood pressure even worse, I did that and I did get to stage 5 and I'm 34 years old and have to have dialsis now and that's an even bigger strain to deal with.
Last year is when I was told my Gfr was 30 in June one week later it was 4 and was rushed in because I needed immediate dialysis if I hadn't they said I would have been gone in the next few days (scary I know)
The symptoms I had leading up to that when it was really bad which was between 2022 and 2023 was being sick nearly 5-6 times a day food was not digesting, physical weakness throughout my body, I was only able to stay awake for maybe 2 hours a day and when I did manage to get up I would drop to the floor because I couldn't physically stand up that was due to the anemia that had royally set in.
Headaches they were really bad.
When it gets to the point of where you are sleeping too much that's when you need to be concerned thats reaching end of life stage which they say is stage 5. I know this is all very scary so I'm sorry for that.
The only thing I can suggest right now is keep to the doctors appointments, maybe look at the diet, keep hydrated, don't use alcohol, be supportive, try to keep exercise going if you can, I'm sure they may be some other nice people on here that have better ideas.
This was just my experience and what I could share with you.
Oh my heart goes to you. I do wish you all the very best for you. Big hugs.
She is tired a lot, and has headaches. Hydrogen water helps her a lot. My biggest fear is she will decline this fast… yesterday was a good day for her… BP stayed level and she felt ok. But when it came to dinner she wouldn’t eat. All my best
Hi Tony, a lot of this does sound to be alcohol related. Stomach cramps and diarrhea are typical symptoms of alcohol withdrawal. Roughly how much does she drink a day? what does she drink? How long has she been drinking in excess? Does she get sweaty or have tremors? If she's drunk a lot for a long time you must be very careful about just stopping the alcohol. It could kill her. If she is physically dependent on alcohol she may well need professional help (including medication) to get it under control, and to then reduce down slowly to come off. People who are physically dependent on alcohol should never just stop suddenly, it can lead to all sorts of problems including brain damage, seizures. I worked in addictions for over 20 years.
Ask your doctor to do a liver function test to check whether she has liver damage.
Also talk to your doctor about high dose vitamin B12 or thiamine which is helpful for alcohol withdrawal and protects the brain to some extent.
She drinks 3-4 rum cocktails a day. She makes them very strong. Almost 4 shots each by the hat I can measure. She is went always like this. Maybe the past four years since she's been in pain from osteoporosis. Thank you so much for tips on what to ask her doctor about. I really appreciate this and making a list for him.
o.k. Be gentle with her, tell her you think the physical problems are related to her alcohol use. Tell her you're not judging her. Becoming physically dependent on alcohol is nothing to feel ashamed of, there are many reasons it can happen. Sometimes psychological, some times physical. Some people are genetically predisposed towards alcoholism. She probably feels frightened and out of control. Suggest she keeps a drink diary, writing down what and when she drinks and how she feels at the time. Tell her you will support her when she feels ready to address this. Most importantly get her to talk to her doctor.
Really appreciate this. I will do my best and if I can get her to do the diary that is great. Honestly I've tried every emotion to tell her. Soft, gentle, caring, concerns, stern, scared... it's always a fight with her but I can see her thinking in the back of her mind since she got this latest news. I think we can help her to quit. Really appreciate it and you
Yes, very stressful living with someone who is dependent on a substance. Have a look for some local support groups for yourself. You are right, things like this can be very motivating to make changes.
Hi hope you and your wife are well as can be. You definitely need to do research to stop it progressing further my mam is end stage she is also 56 so finding out earlier is a good thing we found out when my mam was already at end stage and needs dialysis I wouldn't worry ( I know it's hard) about how much time you have with her it will drive you mad even if in the future she needs dialysis people live a long time on dialysis if you look after yourself my mam has people at her unit that have been on dialysis 15 20 years end stage doesn't mean your going to die yes without dialysis or transplant but you can still live a active live on dialysis it's just a new normal and accepting the new normal.
Your words truly make me feel a little better. Thank you so much from my heart. I'm trying to turn any sad emotion into energy to do all I can to kick this in the can for her. I cherish every second longer we can be together. Wishing you all the very best
Tony, I have been down this path. My lowest eGFR was also 33. And then I quit drinking...totally. I finally stopped because I convinced myself that the taste of wine was disgusting and my husband helped - the G&Ts he made for me after work had more ice than anything else (they eventually did become Mocktails). But the real kicker was going out to a pizza place with friends and have an aperol spritz just to be social. When I got home I felt like I was having a heart attack. Pain, sweating, nausea, diarrhea lasted for about 20 minutes and then it was over and it was then I realized my drinking days were OVER. I stopped cold turkey that night. My BP, which was pretty high, is now under control (120/70 at the doctors office) even though I do take plenty of BP medicine. One of the things that I found really helpful with stomach issues is that I started taking a probiotic. I took Align because I could get it at Costco for a good price. That pretty much took care of my tummy issues (I always thought I had IBS but who knows - whatever I had is gone now.). Anyway at the height of all this craziness my eGFR was 33 and now it's back up to 39-41 which isn't great but I'll take it. It takes a lot of willpower to stop drinking but I would say the specter of a heart attack, kidney failure or becoming a diabetic is a good one.
Thank you truly for sharing your story with me. It gives me hope in that my wife can quit as you did and get better scores. I have not heard of Align. I will go research it now. We recently started hydrogen water and that seems to help a lot with her IBS which she has had issues with since a child. All my best and thank you again your words give me encouragement.
I really feel and identify with you - I've had the world crash around me - experiencing the hopelessness and powerlessness to change the trajectory of things - including my own reactions (fear, stress, depression) to it. While your spouse is addicted to alcohol, mine was addicted to food. This led to diabetes and finally dialysis. I pleaded with him not to purchase junk food, to stop eating at buffet places, etc., but his furious retort was, "Stop it! If I'm going to die, I'm going to die happy!" Well, he came extremely close to that - and the descent was anything but a joy ride for either of us. You are not alone, there are thousands of us standing by, watching our loved ones disintegrate at their own hands. Reach out whenever you can.
I agree with much of what's already been said earlier. However, please do not put your wife on a strict diet without taking a really hard look at her lab numbers and getting a professional's approval. It's important to keep or return things to the normal category. The "renal diet" can drop some of your wife's figures which are already fine. Of course, it's always good to eat fresh fruits and veggies and chicken and fish more so than red meats. I agree with those noting that dehydration plays a big part in kidney function - your wife's stomach issues are undoubtedly playing a role in that. I'd like to add that your wife's creatinine while it's flagged isn't terrible. As eGFR drops, attention often moves to creatinine - toxins building up in body. Usually, dialysis starts when creatinine numbers reach 6 or more. Also, look into how well your wife's liver function is holding up. That can be an issue too.
What I would like to add here is what you can do for both you and your spouse based on my own observations to help turn the situation around. Often, spouses with addiction don't see reality - they're in denial. So (1) encourage their medical providers to be honest in their interactions with you and your wife. My hubby didn't change his ways until his nephrologist sat him down and gave him the hard, cold facts - 7 years to live if he kept on the same path. (2) Go to your spouse's appointments so you get the full picture. Our nephrologist was relieved to finally see me. He had repeatedly tried to set up an appointment with a transplant center for my hubby but he kept saying, "No! I'm fine!" My presence removed the road block. (3) Go to your own primary if you find your stress levels soaring. Mine listened to me, offered guidance and referred me to several therapists as well as prescribing a non-addictive sleep aid. (4) Seek guidance with the alcoholism. Maybe your wife is "self-treating" a mental condition that can be handled through other means - meds, for example. In my hubby's case, our primary guided my hubby's new diet. (5) Know that your wife isn't about to pass away any time soon. So don't focus on being "alone" now. Yes, kidneys can fail - but then dialysis and transplants take their place. (6) Know your power. When the path gets very rocky, the medical professionals will truly value your input and observations - they recognize you have a clear mind and a close-up perspective. (7) Take breaks to recharge - whether it's a walk, time with friends, etc. There's truth in the quote: "You can't pour from an empty pitcher." Please reach out any time. We're here for you. Truly, there is hope for tomorrow. I never thought my hubby would be with me today. But here he is - a changed man who stopped saying, "I'll eat whatever I want - I'm gonna die happy!" Your wife is very fortunate to have you by her side. A promising outcome is entirely possible. Sending hugs.
Darlene's, your words are truly powerful and encouraging. I cannot thank you enough. All of your advice is so appreciated a d I will definitely listen to it. I'm so happy you bad your husband had a good outcome and I will do all I can so my wife has the same. I have to learn not to be scared with every downturn she has. Today she is very tired and I think with her next fix visit we will get more answers and help
Tony - if at any point you think your spouse needs to go to the hospital, EMS will come if you ask them, even if your spouse refuses to consider it. They have ways of double-checking what you think needs to be done and they have ways of working with a spouse's objections. I wish I had known this earlier on in the process. A home health nurse told me this, in front of my hubby, and it's made a world of difference to how he reacts to my recommendation. Knowing this is very empowering - my hubby respects my words now. I saved him when he was in a-fib with exceptionally low blood pressure early this year. He again said, "I'm fine!" But went because I told him we needed to check it out. Knowing you have power is worth gold.
One low eGFR score doesn't mean she has CKD. Especially after diarrhea and dehydration. It sounds like the possible CKD is the least of her issues. See a gastroenterologist for the diarrhea. It can be caused by a variety of treatable conditions. I had ulcerative colitis and constant diarrhea for much of my life. I'm 61 now and got uc as a teen and now have no colon. High blood pressure can cause CKD and is a leading cause. Getting that under control is the best way to prevent possible kidney issues. As others have said, alcohol worsens diarrhea, dehydration, and hbp. I lost my colon and a lifetime of dehydration led to my CKD. I used to drink alcohol sometimes, but after I lost my colon I had one drink and spent hours in the bathroom emptying my ostomy bag. I never drank again. That was 29 years ago. It just wasn't worth it. You may want to go to al anon, as for family members. Check your health insurance plan if you have one it should include mental health benefits. You can see a therapist alone if she won't go. I'm a straight talker, so I'd probably tell her what you are telling us. "I love you and want to spend as much time as possible with you. That could be much longer if you stop drinking and start taking care of yourself better. I'm here to help."
Thank you…. I have been straight with her and tell her I want to be with her for a long time to come and that is why I care a her and want her to stop. It’s always a fight with her in rebuttal. Then she tells me to stop starting the fight… when all I am doing is asking her to stop drinking and save her life.
You are right, I’m going to have to get professional help. Our insurance plan is terrible and doesn’t cover much with 9k deductible each and I’m the only one working in our household so I had hoped to tackle this through logic with her, to no avail.
She has had high BP for many many years and now takes 16 medications most of those for her cardiovascular system… she had a heart attack and four stents put in four years ago… even that couldn’t get her to make good life choices. I bought one of those medacube pill dispenser machines just so she’d take all her meds in time twice daily and she still wouldn’t and I had to get on her for that too. Only after her latest blood work scores did she finally take her pills seriously. So maybe I’m making progress.. it’s so hard but I love her.
thank you truly for sharing your story and advice with me. You are wonderful and I hope my wife can become as strong as you are. I wish you al the very best for you.
You have to remember that when a person is dehydrated, like your wife has to be with 3 weeks of diarrhea, that all of her labs are going to be off. I am sure that is why her doctor is going to repeat her labs.
The most important thing is to figure out why is she having all the problems with diarrhea. I was in end-stage- kidney failure and had a transplant. I never had problems with stomach pains or diarrhea. Sounds like something else is going on with her. With her labs it needs to found out now rather than later. If you have to, go to the ER. It's also a way to see a gastroenterologist soon. The ER can get her in sooner.
Alcohol is only complicating everything. It can be the cause of her stomach pains and be making the diarrhea worse. We can't diagnose on this site, but it really doesn't sound like CKD. Does she have an ulcer?
Thank you for your support and kindness. The doctor is planning to check her bloodwork again in a few weeks after she has drank lots of water to rehydrate. Yesterday she finally had a solid stool so maybe the Phallum Musk pills, or probiotics I have her are helping.
I don’t think she has an ulcer. She’s had GERDs for five years and takes a med for that. Definitely want to find out her cause of all this. I think it’s going to come to being a wake up call for her in how she better takes care of her health. Hopeshe lets me help more
So sorry to hear of your wife's situation. I'm in End Stage at Stage 5 myself and am not experience diarrhea or stomach pains, but each person is different. At eGFR of 30, your wife is in Stage 3B CKD. She was told to drink lots of water to prevent dehydration which is caused by diarrhea. Her physician is the best one to heed advice from, but a good RD can be helpful, too. A good book to read is Stopping Kidney Disease by Lee Hull. It is full of helpful advice, current advice. Lots of renal books out there and Nephrologists are not up to date on eating/advising about renal diets. I speak from experience. My eGFR is now a 10, though I do my best to follow a Very Low Protein Diet without meat, which is the most proven diet to halt kidney disease. I am still holding my own until I no longer can. Hope your wife feels better soon. It is important to get her diarrhea under control and her stomach pains. Her doctor should do labs and films to see what is causing her stomach pain.
Thank you for your kindness and I wish you the best…. I’m glad you have found a plan to maintain it … i wish you much strength forward. I really appreciate sharing the book, I will go find it and order now. She’s a southern girl and loves southern food so it wil be a challenge but i think she can do it. Many cheers and my best to you
the diarrhea is making her dehydrated. She should have some fluids if she went to 44heeer e. She must continue to sip them in small amounts constantly a d have some sweetened beverage a d some salt in her broth. Doc is eight to wait a d see what comes up in a few weeks when she is over it. Now what is causing the diaflrrheadiaflrrhe a d stomach pains. If not self limiting by 3 days needs dutherduthe work up. What meds is she on?
She's taken these for years with no issues to help with her heart, hypertension, GERDs and osteoporosis
We've been good about getting her to drink water throughout the day and for the past couple of days we've managed to control her diarrhea into normal stools with two Psyllium Husk pills daily. I forgot to give her these pills this morning and she started to have loose stools tonight... so I will continue to give her fiber until we see the doc for the next bloodwork in a month
She will probably have to discontinue the Melixucam if she hasn't already. Its notorious for producing stomach ulcers and kidney decline. Would you happen to know what the creatine level was.? That is a better indicator of kidney function unless one has done heavy exercise like heavy weight lifting within a day before of the lab draw
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