I just want to talk - no one in my life seems to be able to properly understand
Posted , 6 users are following.
I've had pain on and off for over 5 years in my right lower abdomen and over the summer I had reoccurring bladder infections that would not go away with antibiotics. The pain just gets more and more regular and worse, and I often find myself unable to sleep and unable to find a comfortable position. I went to A and E after seeing a vast amount of blood in my urine, and they just gave me more antibiotics. Then, a few days later I went again with severe cry/scream-worthy pain and they said there MIGHT be something up with my kidneys. I was booked in for an ultrasound and they found a kidney stone about 1cm in size in my right kidney. Later on, I had a CT scan and it showed that it was 1.5cm. Because of the size it is stuck there in the lower part of the kidney, and causes pain because it moves around. I also greatly empathise with you. I feel like I'm going crazy. I'm highly irritable, and have been losing significant amounts of weight, and have had many other symptoms too. My appetite is often non-existent and I recently excreted the inside lining of my bowels (also I am being checked for colitis/chron's). I am actually scared all these things are happening. Although scheduled for an operation in a few weeks, I have no value of lifestyle currently and am trapped thinking that it will not solve the issue. This pain has been going on for so long it feels like it's defining me, but moving around and doing things other people deem as 'normal' is so painful. Also, because this has been going on for so long, I find my body doing things and habits to try and help me through the pain, such as majorly fidgeting and phasing out. The other thing I'm worried about is the anxiety I get with it; my body tenses up and my heart rate increases due to the pain, but sometimes it does it when there is little pain, as if preparing itself. This of course just ends up making me feel constantly on edge, as if there is no rest. I hope any one who is reading this has been able to empathise in their own way.
0 likes, 8 replies
Luna_Sea ele101
Posted
Your experience sounds close to mine, though I thought the six months it took to figure out what was going on was a long time. It was also thought that I might have Crohn's or a number of GI problems. I had a colonoscopy and an upper endoscopy that were both clear. My GI doc than decided the pain was probably in my hips, so she sent me in for an barium x-ray and CT scan. That's when they found a large stone. She referred me to a urologist but wanted me to come back after treatment because she thought my other symptoms might be IBS (chronic diarrhea, internal hemorroids caused by chronic diarrhea, cramping).
Anyway, I went through a month long ordeal to get the stone removed. Not only did the chronic abdominal, flank and back pain go away (sometimes so bad that I was bed-ridden for days), but the IBS symptoms resolved.
I have since read that in some cases, kidney stone pain (even the non-obstructive kind) can cause confusion and sympathetic response in the colon/intestinal tract. Once the stone was removed, it wasn't getting mixed signals anymore and the GI problems resolved. Now when those symptoms return, I know it's time to visit the urologist.
I know it seems like no end in sight, and I worried the same thing...how could a stone that isn't even in the ureter cause this much generalized pain that removing it would fix it? In my case, it was the cause of all my problems. I'm hopeful (and feel fairly confident) you have finally found the source of yours.
ele101 Luna_Sea
Posted
Dear Luna,
Thank you for your refreshing reply.
I have been looking into it, and think there is a strong possibility that it is only the kidney stone causing so many repercussive issues. I just don't think it's easy to understand even at a basic level, as to how a stone formed in the kidney can affect your other organs to such an extent that they start shredding themselves! (sorry if that is a bit graphic...)
I do know that the pain I have been getting is generally not in the right kidney area, but instead in the lower right abdominal quadrant. This makes it hard to know what the issue is, but I read and have also heard that the pain can radiate. I just think that because I have had this pain on and off for about 5 years or so, there may be other issues that have been triggered because of it. I really really hope that is not the case, and I believe that it is more likely to be just the stone. It would solve a lot of issues if it were just the case, but that would mean I've had a stone for years! CRAZY. Don't know what to think :'D Just currently holding out to see what happens and what the doctors say.
Thank you so much for your time,
Ele
FaithInHim ele101
Posted
Hi Ele
I'm a true stoner meaning that I have passed more stones than I can count! ~ Lol
You must keep a sense of humor, somehow, someway, or else we would go crazy.
Been dealing with my stones bilaterally since May of 2016. I could write a book but let me see
if I can help you out. Couple of things first I want to mention. You need to see a Urologist who deals
with Kidney Stones so you can get this taken care of. Being in Pain for so long really takes it's toll on
ones outlook on life. Call the Urologist and ask for medications. For the anxiety, try Ativan, along with deep
focused breathing and concentrate on relaxing. For Pain, try Flexeril which relaxes the muscles. For the hardcore pain that is OMG ... try dilaudid. Now these are Not for long term, only to get you through the waiting
period. Drink a lot of water, Drink Cranberry mixed with lemon juice, and stay away from all sodas.
When you went to the A and E you said they gave you antibiotics because of the blood in your urine.
Did they know what type of infection you had and did they give you the correct antibiotic ?? Having blood in the urine means that the stone is causing irritation in the kidney and or ureters.
You also said "recently excreted the inside lining of my bowels" Wow, did they admit you to the hospital ?
Do you have an appointment with a gastroenterologist for that condition?
It can be very frustrating, along with the Pain, you sometime want to give up. You have to make up your mind
that this must be dealt with NOW. If someone is not able to understand what you are going through, find someone who does, that knows exactly what you are dealing with. Find that person or persons who will offer support and help you get back on track to getting rid of these kidney stones and getting healthy again.
So let me say this, if You can handle all that severe pain, then you are definitely strong enough to fight to get your health back. Pick up the phone and start calling Urologists. Make it known you can't stand the pain anymore and you need some medication until the stones are removed. Don't give up. I wish you the best and
keep us posted here on how you make out. ((((huggs)))) Take Care, Stay Strong ~~ Faith
ele101 FaithInHim
Posted
Hello Faith. Thanks so much for replying.
Wow, you must be made of nails. I have actually been referred to have a 'fast track' operation after being admitted overnight in hospital after calling 111 with very bad pain. This meant that I was going to have the operation in two weeks, around christmas, however for whatever reason the operations have been put on hold and I have to wait over double the time. I have not even had a phone call to confirm the date yet, and I have been in contact with the people who deal with the appointments to find out as much info as possible. I think the thing that is on my mind about the anxious episodes is, if I take medications it could conflict with my bowels, and I'm having troubles enough as it is with that! (prune juice everyday, lol). When I came out of hospital (I recently was admitted overnight), having been rehydrated with saline solution, I was prescribed morphine and general painkillers (ibuprofen and paracetamol). I find the morphine just makes me completely out of it and it is hard to know if it is working sometimes! I will look into the pain killers you recommended and talk to my GP about it. When I went to A and E they actually did do the proper test, not just the dip test in the urine, and they prescribed me the proper antibiotics. It only took 4 rounds of antibiotics for them to actually prescribe the right ones! Sigh... And as I mentioned earlier, I was recently admitted to hospital because of the severe pain and other symptoms such as losing a bit of the lining of my bowel. I actually have a colonoscopy scheduled to check for possible Colitis/Chron's, which will be on the 9th. I have found a particularly good female doctor who listened to everything I had to say (having photo evidence also helped), but I don't have doubts that I can go back to her again if I feel the need to elaborate or explain more and get extra help. I know I am strong enough to get through this, I don't have doubts all the time, just sometimes I feel like I am going loopy with all these symptoms, and I'm not even 20 yet! Pah!
I super appreciate you getting in contact and letting me know your thoughts and experiences. It has helped a lot. I will keep you posted, and will stay as strong as possible and look for ways to be more at ease. It's a journey, one which I hope I will use to become even stronger.
Thank you so so much ((hugs returned)),
Ele
sarah87162 ele101
Posted
I feel it is a pleasure for me to be able to help you and share with you your anxieties.
Sometimes it is easier to talk to people you do not know.
I suffered with kidney stones for a year and have recently had them removed by keyhole surgery.
Still a bit sore but getting better.
I now it is easier said than done but try not to worry too much.
Start thinking more positively, the operation will be a success you have ti start thinking like that now.
Fortunately I have never been a worrier so I do not really understand that side of what you are going through but I do understand the physical pan of it and how it stops you from doing things.
Take care and keep in touch
Sarah xxx
Assassin1999 ele101
Posted
From the time she was about 5-6 years old, my wife would occasionally have a nightmare where she was laying on the road with a tree laying across her side. She would wake up and claim to be in pain. Her parents dismissed it always. This continued on occasion for her whole life and I am ashamed to say that even I dismissed it as nothing when it would happen. I thought it was just a recurring nightmare that would trick her brain into thinking she was in pain. Then, came the infections. Then the pain. Then the blood. Then the REALLY REALLY bad pain! Finally they figured out, after much testing, that she had a dual kidney on her left side. She had 3 kidneys! One was "piggy-backed" onto the other and was deformed. Eventually, it just started to cause problems and became poisonous which affected the other kidney that it was attached to. She was sick for 2.5 years. At various points she was suspected of having an ovarian torsion, gall bladder problems, stomach problems, colon problems, severely painful endometriosis, and more. At one point they did exploratory surgery. A urologist, nephrologist, gastroenterologist, gynocologist, and a general surgeon, all had a look inside her at once. According to all of these people, she was at least partially symptomatic of all of these things! In the end, her dual kidney, which they knew about, had been draining slowly and over time became sick, which they didn't know. So, yes, it is very possible for it to seem like you have many things happening to your body, when all along it's just one thing that affects everything else. At the same time though, for all those years, her body was telling her something was off, so it's also prudent to listen to your body and nevermind what others tell you. However, it can be tricky to navigate these symptoms, as you well know! I believe it is totally normal for you to be in a depressed state right now. Your freedom has been taken away and you are not yourself. By the time her kidney(s) were removed, my wife had barely slept or eaten in over a month and our friends and acquaintances all thought she was dying of cancer with 2.5 years of a miserable life behind her and 6 months of healing ahead of her. My ordeal with my last stone was 5 weeks long. The last week involved having a stent with a string attached which is very uncomfortable to begin with, but the mechanics of living with it prevented me from even venturing out of the house. That was only for a week and I was very depressed by that point. I just wanted my life back. I've been poverty-stricken, homeless, cold, hungry, lost, but this was worse than all of that. I struggled with depression for many years and still do occasionally, but it never hit me so fast as it did when my very freedom to walk around and live my life came to a grinding halt. You are in a vicious cycle of anxiety, depression, and fear. Please continue to be strong. You are among friends here that can relate. I had a 4mm stone that even caused pain that wrapped around my side and made my balls hurt!
ele101 Assassin1999
Posted
Dear Assassin1999,
Thank you so much for your story.
I'm so sorry your wife had to go through that ordeal, that it s truly unusual ordeal. It is interesting with our bodies though, how we sometimes know something is quite wrong but we don't know necessarily what and how to deal with it. I remember hearing a story about someone who had a feeling of impending doom, and she thought she was going to die. She told her husband, and then they went to hospital, but they wouldn't believe her at first. They did some tests anyway and found out she had severe food poisoning, and she went into extreme anaphylactic shock, and if she had waited to go to the hospital for more than 10 minutes longer then she would have died. I have to say that some things are inexplainable to us, but that is where you need to find someone who will listen fully to you and look after you medically; A really good GP. I have a certain fear about being in such pain again, but in some ways I am grateful for it, because it makes me feel thankful for the things that we take for granted when we aren't in pain. I am looking forward so much to being as healthy as possible again, and being able to ride a bike without any worries of setting it off and having to be bed-ridden for weeks again. I have to admit, with how progressive these things can be, although you know it is not cancer, sometimes you just feel like you're in a downwards spiral when you find yourself in hospital more and more, and you feel like there will be no recovery. Oddly though, these past few days/maybe for a week, it hasn't been bad at all. So I am grateful for the slight period of health around christmas and new years, but doubtful it will stay for long. It can go downhill very quickly. I think I've learnt a few things though... such as the saying 'be kind to yourself', and 'everything happens for a reason'. The latter expression can be taken with a pinch of salt, but it's a nice premise. I was in University, however with being unable to attend for over half the time because I couldn't make it out of bed, I've found myself suspending my studies. This also has me thinking about whether I really want to stay there in the future, or whether to rethink after my health is back (hence the expression "everything happens for a reason"
. It's both daunting and exciting, seeing what the future holds. Anyways, Thank you so much for sharing with me; it means a lot. I hope both you and your wife have no more troubles with your kidneys - you're both pretty strong to go through that!
All the best,
E
Earlybird ele101
Posted