anyone any ideas help??

I have severe pain all in my right back when my bladder is filling up and as it does it makes me "puffed out". I have a small cyst and all ct scans showed nothing else sinister. Sometimes I have trouble passing urine. Sometimes no problem. After eating on passing urine suddenly its like a pressure/pain all in my back and a squeezing in my chester sensation. I have had my gallbladder removed in April. I am told I have dumping syndrome now. When I eat I either pass out, or go very low whilst digesting and get a lot of pain in my liver riht back. I come round usually went I want to pee. I can pee all night and am so lethargic by morning. My nasal passages are dry, eyes, Ive dont want to eat because of pain, my eyes are dry. Ive noticed if I eat bread, fibre, drink coffee, I retain urine and can go all day, despite water and then pain is awful all through right back all in my back. If I eat rice puddings it takes ages to pee. I suffer from severe colon transit time and it feels as tho when I eat bread/fibre/cottage cheese/all my bowels soak up the liquid my water so I cant pee, unless I relax at night on the settee or pee all night. I suffer always with insomnia. I have had to come off antidepressants because I peed even less in the day, was breathing bad, and looked six months pregnant. In A & E noone was bothered as ecg fine etc. Stopping the anti depressants and I peed better. But now I have such pain worse in the evening depending on what I eat in the day. I did suffer from yellow fatty bulky stools, and the pain all through my body after passing was someone had tipped acid all through me. Now my stools are brown/grey and very constipated. I tried another anti depressant. My stomach ballooned again and I got out of breath after passing a penny. I would get to a friends, sit down and suddenly soo tired..only to come round when I have water. The pattern is I eat and go very low whilst digesting it seems, then I start to get puffed out as urine takes ages to fill my bladder. My insomnia is bad always has been. I am 66. I even took Ranatadine for my hernia/reflux. Then next morning I felt wonderful but stomach swelled again and I peed less all day. Stopped it and peed better. If I havenot peed my abdomen is huge. I have had closcopy bladder urethas fine. Bloods say all fine (blood in urine years now since hysterectomy 1985 and 6 pints of blood transfusion - overies left but insomnia started then!!. Ive had upper gi barium follow through - ideopathic dumping a little, gallbladder removed and an adhesion from stomach to small intestine. Gut hormone profile. Tests for diabetis. CT scan showing only cyst and fatty liver. I dread peeing by the end of the day (worse if Ive eaten high fibre popcorn in the day)) and dread passing a motion. I dont know why my abdomen swells and I retain water on antidepressants and even on an antacid tablet. My nasal passages go completely dry, eyes, mouth eyes even blurry at times. My GP thinks Im nuts I think but I am fighting consultants still. Last night before bed I ate two wheat free hot x buns and immediately passed out for hours..until I woks and wanted to , pain all in my riht back as it built up and puffed out. I KNEW if I ate them I would not wake up so much in the night to pass urine. I was right but 3 times and felt awful still so lethargic. my blood sugars can be 4.5 which is not diabetic but for me I cant think talk concentrate until..I have water. I perk up. Have porridge and peed a tiny amount. No pain. I went to my sons and had 3 coffees. A tiny pee bit of right back pain. Nothing to eat. But then I ate 3 biscuits. OK walked the dog. Home. Then as usual standing from 3.00 to 4.00 I can feel urine trickling into my bladder. It takes an hour and Im getting pain in my right back/liver area. I start to go drowsy but pee a tiny amount and perk up. I eat tiny chicken, sweet potato, brocolli, cauli stewed apple and custard. My abdomen is swollen (Ive also drunk water today). I sit and go a bit drowsy. Then the crime of eating 6 ginger biscuits. Feel fine. No pee. If I dont eat fibre, bread, pots milk puds I seem to pee better. My bowels are now dark brown very constipated. The dietician has given me Fresubin milk drinks 2 a day because of weight loss. It feels as though when I do pee all night i am losing water weight. My arms are hanging and tops of legs so shrivelled from weight loss. II came off medications because of insomnia and high bp. I have gone out with my daughter and eaten a carvery and small apple crumble. Its always about one and a half hours later if I eat a big meal of veg pots in the day I am suddenly screaming in pain all in my liver area far right rib and all through back. Everything I read about the kidney diet i.e. no fibre, nuts, milk, banana, oranges potatoe..all make me pee less. If I eat fruit the pain can be soo bad maybe because of the dumping syndrome but I will pee even more all night. If I cant pee much in the night I still am awake and restless all over the bed because it feels as tho my urine wants to come out but wont and I am wide awake. Nothing in there. I walk the dog..suddenly I start to get puffed pain in right back because bladder is slowly filling up. GPs arent worried said kidney function fine but I am wondering if Im working on only one, or are they slowly packing up. Is it something gone wrong since my gallbladder op (also had a colonoscopy and that was fine but nothing but tonnes of yellow fatty diarrohea on taking the laxative for the procedure. Before that because of the antidepressant I was not peeing much and was breathing bad. Breathing got better and stomach went down stopping it. The colonoscopy procedure seemed to make it worse. I dont know if it is my bowels so constipated that when I drink water or have fibre,milk puddings, cottage cheese potatoes the water is being absorbed completely and not getting through to my bladder. I have no idea all I know is when I pee all night I have noo pain no shoetness of breath but soo thirsty. I am on clonazepam now 8 years for restless legs. My GP said if water brings your blood sugars up - which it does - its blood volume! I go drowsy on sitting down, my friends give me my water and 20 mins later I wake up. Is there anyone in this whole wide world who has ever experienced anything like this. There is a pattern on eating I can get pain about one half hours after eating. If I dont pee all day or pass a bowel motion and only have coffee and a couple of biscuits I can feel fine. But most days I feel dreadful by the end of the day in such pain on peeing all in right back spreading through my back and at night I usually have to lie flat for hours before bed to get my bladder to fill very slowly like in the night..all laying flat relaxing. If it wont pass through if I go to bed i am up 2 hours later and off peeing all night. I dont know if this is a kidney, such bad constipation, or with the pain in my right back/liver area a gallbladder op gone wrong. Either way I feel this is afdecting my kidney function, my liver pancreas is stressed and certainly my bowels. If there is anyone who has ever experienced anything similar..please tell me Im not nuts. I just cannot take medication.

12 Replies

  • Sounds absolutely awful!! Nothing anywhere near your problems but couple of things I can relate to, albeit much better than yours. Since giving up on wheat & dairy that has been helpful. I have issues with gall bladder/gall stones which causes problems from time to time. When it feels worse I cut out all food apart from white fish, chicken, plenty of water and after couple of days it improves. I have had serious problems with water retention, needed emergency hospitalisation at one point. One other thing is that your relationship with your GP does not sound very good. Have you considered finding a new GP, or even asked for 2nd opinion?

    I wish I could help. I feel for you very much and I do hope you can find some answers. Tulip xx

  • THANKYOU for reading such weird symptoms. My kids know Im not imagining this as I cry in pain. Yes GPs think Im nuts too and I have tried to explain to different one. Dont bother anymore cos symptoms too weird. I guess you are right. I should cut out dairy and wheat and have tried gluten wheat free but makes little difference. Oh well I will have to live with such pain hoping something/nature will suddenly reveal all.. Thankyou for reading and I hope you feel OK over Xmas with such delicious food. Im narrowing things down but stand in the supermarket crying not knowing what to eat. Even a tin of soup!! Now taken it further re complaints team via hospital and bowel man did say he would consult others. Not a word since. Daughter is seeing my GP on her own as she has had enough of seeing me in such pain. Keep fingers crossed for me for at least a diagnosis early 2016. Dont want any bad news but if I knew what was causing this I could understand and cope. God bless ta. x

  • I think it would be a great help if you had a diagnosis, at least you would know what it was all about. I suppose they cant always know themselves but I'm not much impressed with the Dr.s you've spoken to so far! Please let us know how it goes?


  • thank you Tulips and very nice of you. Yes I hope to let you all about it..I will be in newspapers with "woman dies of unusual symptoms" or "woman DIAGNOSED with rare disease" ha ha. Oh boy poor you all that fluid. Its a wonder you didnot have kidney failure or heart attack!! I was on meds and ballooned and I believe, like you, a lot is fluid. I did have low sodium in blood tests this year funnily but corrected itself. Also was anaemic last year. I certainly cannot take medication for some reason. If I feel so lousy on food and losing weight, I felt dreadful on meds even trying recently. I wish you a healthier 2016 too. I guess you are USA based. Me? Im UK. I thought this site was American somehow. All best Lindaxx

  • I live in Dorset, Healthunlocked is UK, beauty of the internet is we can connect with people from every country, some members are def. USA. Brain cells fading, but I wanted to say before I forget (never know what may/may not be helpful) I have low levels anaemia, + allergies of all sorts but also some meds. This condition is not fully understood as yet, although it seems to me USA are further ahead than UK. It is my opinion that some Dr.s dont treat patients very well when they dont understand their illness.

    If you keep contact with this Website, I think you will probably find others who could relate in different ways. It helps talking to people who understand.

    G'night, take care :) xx

  • I will try no wheat dairy milk and just some chicken or fish. Maybe a spoonful of green beans but as I am losing weight its a bit sodgy. good luck. Strange how you had fluid retention its horrible.

  • Perhaps trial and error, keeping a diary of what the effects are?

    Fluid retention!! My GP had me admitted. Strong water tablets, fluids restricted to 1 litre a day. After 7 days I had lost 11 kilos - all fluid. Really horrible. When I started, I felt like The Michelin Man, no kidding! It took a while to balance out body salts and all sorts of other chemicals, hugely important. I now have 2 Furosemide twice a day (breakfast & Midday). I spend an awful lot of 'pennies' :) and sometimes still get some retention, but not as serious. I wish you all the best, and hopefully better health 2016. Keep us posted on how things go? Tulip xx

  • I have read your post with so much pain and sorrow for what you are having to endure and I sincerely hope that you can find some resolution and relief to all of these issues. I am not a doctor but the first thing that I thought was that it all sounds like side effects to medication but you say that you cannot take any? I know if you read the leaflets it describes all of these kinds of things. I am surprised that they have not done more for you since you are pregnant. I wish I could be of more help to you.

    I want to genuinely and sincerely wish you all the best of luck and please take care of yourself.

    All my hopes and dreams for you


  • You are certainly going through the mill, I don't suffer with this but I can imagine how it makes you feel, and damn Drs don't help. It's obviously not normal can you try and see a different Doc and may be get further investigation. I reall hope you can get some relief, or even better a cure. Take care.xx

  • I have stage 3 kidney disease and a very over active bladder and I have very bad problems with pain when passing urine. I cannot leave the house without making sure I am totally dehydrated as I have had a few bad episode whereby I have wet myself as the urge to go is that intense that I am unable to hold my urine for any more than 20 seconds. I have been told that doing this is bad for my kidneys but what the hell can I do just not go out ? I have been under the urology clinic at Kings college hospital and they have had me on loads of different drugs but to no avail I was told that as a last resort they can now inject botox into the kidney and this has had a 80% success rate but to receive this you have to be able to self catheterise for a minimum of 2 weeks. Sadly I failed this part and they asked if I wanted to be fitted with a colostomy bag or just remain the way I was ?? I opted to NOT have the bag. Have you spoken with your GP about the botox a sit is worth exploring to try and ease some of your problems.

    Good luck with whatever you decide to do.

  • oh thank you kindly to reading such a jumble and for replying when you are in pain and so poorly. I am pestering to get admitted for observation as I can go on losing weight and such pain. It could be my gallbladder op went horribly wrong as it has got worse since then, but am hoping to hear from the bowel consultant and praying they will get me in under observation. Daughter now has taken it up with my GP and my son as I cant go on like this in 24/7 pain. Someone accused me on here of being a pathological hypochondriac which upset me immensely and I reported it. Ive never had pain and these issues before. Good luck. I hope you make the right choices. Its a shame drugs dont work.

  • Same to you and a very Happy Chrimbo and a peacefull New Year.

    As for those idiots who say it is all in your mind and you are conning it Those are the self same people who take to their beds with a bloody head cold !! "IGNORE THEM"

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