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I just want to give up now

Posted , 7 users are following.

Elvesdoitbetter
Elvesdoitbetter

Hello, new here. I have had symptoms of IBS for several years, ended up in hospital a few times. Think it might be related to having a hysterectomy which has really messed up my body and I also have pelvic adhesions.

last year symptoms got really bad, ended up in hospital when I started to haemmorage from my urethra. Turned out I have a urethral prolapse and the straining caused me to bleed.

my IBS was C but has changed to D. I had a colonoscopy, was told it was challenging because of adhesions and looping but from what they could see all was normal. Could not get down last part of colon because of looping. Given IBS diagnosis and basically it was goodbye, go away and live with he it.

now this year it has gotten so much worse. I could live with the D but it is the agonising stomach pain and contractions that scare me. I end up screaming in pain, convinced i am dying or actually wishing I was. Had to be restrained by a relative once in the bathroom to stop me throwing myself out the window.

i also get severe sweating, icy cold water dripping off me sweating and shaking uncontrollably. When the episode passes I am unable to stand or walk properly afterwards because of severe hip and back pain and stomach is a dreadful constant ache. 

This is may sound weird but i always know when I am going to get an attack. My heart starts racing, I get palpitations and a feeling of dread and panic. It is like some sixth sense. I know that sounds crazy.

i am now struggling with severe depression, not just mild depression but the kind that is taking me down a path that I know there is not going to be a good outcome.

i have tried everything, lacto free, wheat free, fodmap, gluten free, probiotics, nothing has worked. Now I have reached the point where I am too scared to eat. In six weeks I have lost two stone in weight, gone from ten stone down to eight and I am still dropping. I am living on less than 700 calories a day, tin of soup, two rice crackers, one banana and a small packet of plain crisps and loads and loads of water. I eat the same everyday and the sight of a meal or food terrifies me.

i look at food and I just identify it with pain and wonder how much it will hurt me, the frustrating thing is my symptoms are still continuing. One family member even asked how I could possibly produce so much D when I am not eating. Weird thing is despite my food intake being so low and my fibre level virtually non existent when I am not having the D and pain my BM are normal and regular. Although after the D it can be a week or more before I go again.

i just don't know how long I can keep going on I am tired of being ill and confined to the house and waking up each day wondering how much pain I will be in and how many hours I will be camped out in the bathroom and lying on the floor. People are not sympathetic, oh try a bit of food it won't harm you, just try some, the pain can't be that bad, have you tried thinking positive, there is always someone worse off, you need to change your attitude, your exaggerating, you should try to do more. Heard them all and now I just cannot do this horrible IBS anymore. Doctor uninterested, don't see it as serious, gave me Spasmonal but they don't work, was on Mebeverine but they were useless. Refuse to take Imodium because if I stop the D the pain is even worse..

1 like, 13 replies

13 Replies

  • kim59492
    kim59492 Elvesdoitbetter

    Posted

    This sounds horrible. Do not tolerate this any longer. Something is definitely not right. You should not be in this much pain with sweating etc. 

    go back to your doctor insist on being referred to a good gastroenterologist. Demand a CT scan and a full abdo scan which scans your gall bladder, spleen, liver, kidneys and pancreas too. Have a full set of bloods done including a liver function test and an amylase. Amylase will give an idea about the condition of your pancreas. Don't let hem fob you off with just IBS. It might be just IBS but if they discount everything else you will know for sure and treat accordingly with maybe a mild anti depressant that also blocks pain  like amytryptine

    It's your body you are feeling the pain be firm and tell your GP you are not budging until he refers you urgently. Good luck. 

  • Wolfie1974
    Wolfie1974 Elvesdoitbetter

    Posted

    This is more than ibs, go to the doctor and demand answers or go to a and e and kick up a stink
  • Elvesdoitbetter
    Elvesdoitbetter

    Posted

    Thank you both for replying. I have been back to my drs and they are adamant no more tests will be given. The only tests they were interested in was on my prolapse and I can never see one g.p again after he humiliated me during an examination of my urehtra by asking me if i had been sticking anything inside myself.

    i only got the colonoscopy because the hospital ordered it, all the doctors at the surgery had refused to let me have it. I only got that from the hospital because a sigmoidoscopy failed because the prep did not work. The hospital doc said the colonoscopy was normal and the biopsy was normal.

    had a full blood test done a year ago and turned up nothing. Cannot afford private care. Once you get a diagnosis of IBS where I live that is it, nothing else will be offered.

    the D I get is also weird, it is not liquid it is solid and the amount just seems impossible. The pain and D has been ongoing for over a year but has escalated this year and the hip pain and back pain is new.

    when I do eat I also get a feeling like bubbling and boiling in my stomach which is really violent. The pain and contractions are located just above my pubic area, nowhere else.

    • kim59492
      kim59492 Elvesdoitbetter

      Posted

      If you have had a prolapse have you had your ovaries checked ?? Is your bladder function ok ? I think you need to change dr surgery. The one you have sounds negligent to me. The only other thing I would suggest is go to a and e and feign more agony than you are in. Tell them there is a history of stomach private with both parents. Demand they let you see the medic team who may be able to refer you straight over. Then if they do report your surgery to the general medical council. They are paid to take care of you not dismiss you. They are not fulfilling their obligation to a member of public. I would write to the practice manager and tell them that. Things get missed by doctors it makes me so angry when they make feeble apologies after they have messed up. 
    • Elvesdoitbetter
      Elvesdoitbetter kim59492

      Posted

      I had a total hysterectomy so no ovaries. Only just started on HRT last year after 10 years without as Dr would not change my hrt when I became allergic to the patches.

      the prolapse is a Caruncle and causes bleeding and pain. Every time I go the hospital with it i keep getting told its nothing to worry about and. Should just live with it. My bladder function is out the window, hospital said I have an irritable bladder. My other problem is I have a psychiatric history and even my psychiatrist said I will have difficulty getting treated for physical health issues because he has found people with mental health issues are dismissed.

      one g.p wrote on my notes that my pain was psychological and I was an attention seeker. After that I ended up in hospital having emergency surgery before my hysterectomy because I was deemed non urgent for being seen by a specialist.

      i have lost count of how many times I have been to A and E in the past 12 months, they keep referring me back to my g.p. One hospital consultant told me to get a hobby to take my mind off it.  Even when I was on morphine in A and E one nurse told me it was just trapped wind. Once the morphine worked I got kicked out the hospital. My hospital does not refer without direct, then send you back to the g.p with a letter telling him to refer. The only reason the colonoscopy went through was because the sig failed. Previously when I asked for one I was told, forget it, it's not going to happen you don't need one.

  • rose04684
    rose04684 Elvesdoitbetter

    Posted

    My dear sounds like SAME THING I had.  Did you have your gall bladder removed by any chance?  If so the bile that the liver produces trickles along all the time and irritates the upper colon.  This causes when you eat a kind of dumping syndrome: 

    soon after eating: profuse sweating, nausea, gas, cramping, run to bathroom, agony to move bowels.  Even drinking a glass of water and cause it.  I had it SO bad and finally found a doctor who knew what to use: a drug called: Colestid,  a bile acid sequestrant. It is used to lower blood cholesterol levels usually and to absorb the bile acids.  This in about two days stopped the problem.  

    See this article at   http://www.dailymail.co.uk/health/article-2255492/Bile-acid-diarrhoea-For-40-years-doctors-said-I-IBS-In-fact-hormone-problem-cured-simple-pill.html

    Now even IF you have not had the gall bladder removed, the nerves going to the colon might be messed up, cut and scarred making the same functional conditon.  You are describing the symptoms so exactly.  If you still have the gall bladder, would this medication help?  Maybe, worth a try.  Other medictions might be avaiable to slow down the rapid colon and the dumping syndrome  Ask the gastroenterologist about the possiblity of nerve damage from all the surgeries.

    Read more: https://patient.info/medicine/Colestipol-a-lipid-lowering-medicine.htm

    Sorry for the long post, DON'T GIVE UP MY DEAR!

    • Elvesdoitbetter
      Elvesdoitbetter rose04684

      Posted

      Still have my gallbladder Rose, thank you for providing so much information, I will go to those links, read up on them and ask my useless Dr about the possibility of it being gall bladder and nerve damage related.

      anything is worth a try and looking at. Thank you Rose, much appreciated.

  • kim59492
    kim59492 Elvesdoitbetter

    Posted

    Sounds to me like you need to change gp's and quite possibly hospitals. You have been badly treated. There is proof you were in pain by taking your womb out for goodness sake. 

    Can't your physiologist do something ? They can throw weight they are doctors too. Ask them to intervene. 

    • Elvesdoitbetter
      Elvesdoitbetter kim59492

      Posted

      No other hospital around, will have to change g.p and hope for the best although looking at the reviews none of them in my area get a glowing report from patients.

      my psychiatrist has now dumped me, decided he couldn't help me anymore. Think it was more to do with budgeting as MH resources have been cut in my area.

      i was given the hysterectomy for endometriosis, I was 25,  no children and was told it was a simple straightforward operation that would cure my problems and if I didn't have it I would end up having to have surgeries all the time to deal with it. Even then it went wrong. Two student nurses pulled the dressing off after the op and put another one on top. It hurt like hell when they removed it but I thought it was normal.

      it was only when I got nosy and decided to peek under the new dressing I saw all the blood and freaked out. Patients in my ward had to get the nurses when i went into complete meltdown and started screaming. It was later discovered the original dressing should have been soaked off in a bath and as result they had pulled the wound apart. When the staples came out the right side opened up like zip, had to have packing in for nearly a month and my home nurse was horrified how I was treated.

      today I discovered I have an inguinal hernia. Told it is very small and hospitals don't treat them anymore as they will come back worse.

  • nicola80752
    nicola80752 Elvesdoitbetter

    Posted

    I'm so sorry to here the pain you are in. I work in care in community and go to a lady who has similar problems after hysterectomy. I do agree that u should seek other advice, but you need to sit down and write down everything that has happened from the start, then I suggests you get some legal advice. Maybe if you can't get help through your GP then I think it wouldn't be unreasonable to go to direct to hospital gastroenterologist.
    • Elvesdoitbetter
      Elvesdoitbetter nicola80752

      Posted

      Thank you Nicola. I would really like to see a gastro but I don't know if it is just my area or not but you cannot have access of any kind to a hospital specialist unless you have referral from your Dr.

      Even when I have landed up in A and E the referrals are sent straight back to my g.p and he then arranges further appointments.

      doesnt always happen either. Last year when I landed in A and E with suspected bowel bleeding which later turned out to be from the front caruncle, the A and E Dr sent straight back to g.p with a request for further investigation as urgent.

      she point blank refused to send me for a colonoscopy, told me it was not going to happen and would only agree to a sigmoidoscopy. It was only when that failed that the hospital arranged a colonoscopy themselves.

      you can't even get an x Ray without g.p approval.

  • nicola80752
    nicola80752 Elvesdoitbetter

    Posted

    It really difficult and I don't know where you live but if you search on internet for hospital gastroenterologist in your area. Then try e-mailing them. Also, have you thought about legal advice for negligence.

    Like I said earlier a lady I go to has similar problems, she found that she is introlarate to all processed food and uses alot of herbal remedies as she can't tolerate most drugs that are not pure. In our area the hospital wasn't very helpful so she asked to be move to a near by area where they were more helpful.

  • ParryZA
    ParryZA Elvesdoitbetter

    Posted

    Hi there, did you ever find a solution to your problem. Something similar is happening to me and just like you my doctors are giving up and basically told me everything is fine. I go to the bathroom 4 times a day and my stools are massive ive lost tons of weight as well. Its becoming increasingly tough on my mind as every day passes. Its been nearly a year now. Ive had a gastroscopy and a colonoscopy and both have come out with no results.  Blood tests and CAT scans have showed nothing but my D only seems to be increasing. 
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