Terrified - Constantly Crying

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Firstly - sorry this first post of mine is so long - I am not thinking straight out of fear and panic, and can't summarise what's in my head, to save my life atm. I guess, the important bit is at the end of the post.

I finally conceed - I am an emotional wreck and desperately need some support, and those around me have 'given up' because I am the only one to decide what to do.

Had a big attack that lasted 10 days, in Feb 09. Scared me witless. I have Obsessive Compulsive Disorder (OCD) over being touched and washing, so only went to the Doctor after a week of pain. I had been having Gallstone attacks for about 3 years, and investigated all the symptoms and as the attack occurred, treated each symptom individully with a combo of over the counter meds, and prescription pain-killers. The Doctors on the NHS Direct line were very impressed with my logic and said they couldn't have treated better. However, they reccommended I physically see the GP, which I couldn't because of my OCD.

Anyway, finally gave in, and went to seek help physically. The Doctor seemed nice enough, sent me for a blood test, and a scan. Which showed Multiple stones, and a highly contracted Gallbladder. I have been in mild discomfort at all the times since Feb, but I have been in bed a lot(lost my job a week before the attact cos cutbacks) with little energy and depression over the gallbladder issue, and so if lying in certain positions I am completely painfree, but must admit am afraid to get up much, let alone leave the house much in case I get massive pain. So this is as much about fear as about living I guess. However I can always feel my gallbladder as a niggle which gets sore, if I am upright for too long.

In the interim, in order to calm the panic of the OCD, I did investigations, found a surgery type that my OCD considered ok, found the surgeon, and spoke to him on the phone. And from there....it kinda went lopsided. Surgeon said \"You can have a completely normal life after, no worries\". He also did not understand OCD. This makes it difficult for me, as it is a mental health issue, that resulted from a car crash, being handled badly as I was cut out the car, talked about badly as I was then 19stones, and then put in a dirty hospital bed and being unable to get out of it for a long time. Anyway - he brushed off the condition cheerily as if it were nothing, even though I tried to explain, \"when you get your head round it, give me a call, we will see you and have it done within 24hours if you are private\". I am going Private with him, although he does NHS, as the OCD will kill me with mental pain, if I have to wait and wait. So even though I in no way trust the surgeon because of the OCD issue, I planned June 18th-ish, in my head, as a surgical time for me, as I hate my birthday anyway, one more stress on that date won't make a difference, but at the same time, I wanted to investigate my options.

Good ole internet! As I was reading about Gallstone Flushes, though have heard it is NOT suitable for Highly Contracted Gallbladders as complications can in some cases occur, and I started also reading about people's bad experiences after surgery. The disorder was called Post Cholecystectomy Syndrome. The number of posts all over the web saying \"Worst thing I ever did\" sent me into tailspin panics, and this is where I am now.

You see the problem is, I spent my life as a child with constant gut pain, diarreoha to the point of soiling myself, and therefore in school being beaten up because of the smell, and IBS and allergies, etc. Then about 8years ago, I found out about how bad the diet Artificial Sweeteners were, and so cut them out. I also ate more fruit, and changed my diet a little (admittedly still not the healthiest), and 5years ago was completely pain free. I actually started living. It has been amazing! And I relished it. Then 3yrs ago - the first attack. Having seen my mum in agony with stones, and how her surgery went, I immediately low fat dieted myself, and also cut out refined sugars, and a lot of bread. I learnt my trigger foods, and was coping, albeit I missed the treats.

Gallstones were actually good for me. I have ZERO discipline when walking around supermarkets, and so they were a bit like Cognitive Behaviourial Therapy, meaning I was being trained by my body NOT to eat the foods I enjoyed. LOL. And obviously there was weight loss. ?It was a win/win thing for a while - even if an agonising win.

The problem now is that, having been filled with stories of pain and suffering as a result of surgery, I am petrified of being the pain-ridden, bed-ridden, no social life, afraid of soiling myself, and having gripping gut pains, little girl again. It scares me soooo much. And I also eat red meat a lot, something which people keep saying is a no-no after surgery, and they also say no dairy. At the moment, I can still eat a natural grilled lean steak - as I always have done, and a little cheese. These I used to react badly off when I was younger, and it scares me that I am going to be back on the clear soup and fruit and only a couple of vegetables bland diet I used to be on as a kid. It made me hate food, afraid to eat out, and worry about meeting friends in case they wanted to eat out.

It didn't help that the surgeon was soooo positive about it all. If he'd have said from the start that there can be issues, I'd have not been so good at the negatives of surgery research. I'm a fool unto myself.

So here I am. In bed, bawling my eyes out, and uncomfortable but not unbearably so in the gallbladder area, not knowing what to do.

The doctor said I have multiple stones in a highly contracted Gallbladder, and can wait till the next attack, or be referred. He said I have no inflammation or infection in my Gallbladder, no Liver function impairment, no high blood Cholestral levels, or other problems, and all stones are in the Gallbladder. It's up to me. Although he did not know that Gallstones are Cholestral related, or the difference between a contracted or distended gallbladder! However, going self paying, privately, if I do the op route, things will move very fast now as I've already had all the tests.

Half of me says as my body is in a relatively good state now, have it done to avoid emergency surgery and a possible longer hospital stay, and have my limited control, have it done now and hope the recovery is a little quicker because of my 'well' state now, and at least the mental battle changes to a different one. And yet the other half of me screams loudly - you will be in pain and suffering for the rest of your life, on a non-entity diet, which will make your body go into the agonising spasms that you had as a child. On the other hand, look at me now - home-bound by fear of pain, and not exactly living, but rotting in bed, thinking and thinking and thinking, and reading more and more bad stuff about it all on the web!

I don't know what to do. Im just so very scared of the future and the pain and diareohha, and stuck in a pit of indecision on what to do next.

Any thoughts greatfully received.

So very very sorry that the post is so long. I can't think straight at the moment.

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12 Replies

  • Posted

    Hi Jinny Jinxed I am so sorry that you are feeling desperate. Firstly I think you should change your name to something less negative.

    The pain of gallsones can make you feel very ill, weak and dismal. If this sounds like you then you have to tackle the remedy. It will be hard for you given your condition but it will make the world of difference to you after the op. Yes you will have some discomfort and you may not be able to eat just what you want. Not all people can after the op. It is a small price to pay for feeling better and with practice you can manage situations where food is involved.

    Telll the nursing staff about your OCD and they will help you through your stay in hospital.

    Don't stay in bed as you will never want to get out. Try to think of nice things and make yourself look as good as you can.

    The people on this site will be of great help to you so please don't worry so much. It was brave of you to put your feelings into words and that is a great start. Try to think in a positive way. Write down your fears on a piece of paper and then throw the paper away.

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  • Posted

    Hi jinny - i am so sorry you are suffering in this way, with both your gallbladder and ocd. 10 days is an awfully long time to put up with an attack!! unfortunatly if you have had an attack that had lasted this long what is to say that future attacks wont be worse and longer (even causing you to need emergency medical help). this is a problem that wont go away by lying in bed trying to make the pain go away. at the moment you are not living you are existing - and following surgery you will need time to recouperate and be able to slowly begin to live your life again. i think you need to find a dr you can trust and discuss both the problems you are suffering - it will not be easy - and will take alot of will power! you need to find a way of getting treatment that will work round your ocd.

    yes the surgery can be uncomfortable - but much less pain in the long term you are suffering at the moment, as gemini says it is a small price to pay and will make a world of difference after your op.

    as your dr says apart from the pain you have no real complications at the moment (no infection,no liver probs,no cholestrel, no stone obstructions) and are therefore are a good candidate for surgery. if you find a way to get surgery now you will have a good chance of non complicated surgery, and be able to discuss your ocd and what is acceptable well in advance of the planned surgical date - if you leave things you could find yourself needing emenrgency admission and loosing a certain amount of freedom in saying what treatment is acceptable to you as well as prolonging your recovery.

    i hope you are able to find the strenth to tackle your gallbladder problems soon, as for post op it really was not that bad you find you are able to do a little bit more each day and slowly introduce less restrictive foods into your diet, the secret is to take things slowly and recover one step at a time if you take things to fast your body will tell you and you just need to go back a few steps and let things settle for a few days and try again!

    all the best - i hope you find a way

    let us know how you are doing

    vix

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  • Posted

    Thank you so much for your responses.

    OMG!!!!!! I am completely freaking out right now...even more than I was when posting this earlier!

    My mother had the surgery - all went fine, but she has ended up with this Post Cholecystomy Syndrome. Its managable for the most part, but she does have constant pain, and IBS developed off the back of it. She had her surgery via Keyhole several years ago to remove her gallbladder. too. Every single person on her side, and all the women in my Dad's side had Gallstone problems. I don't even talk to Mum about my fears much, as she has a tendancy to feed them and tell me of the experiences I see her go through every day. She is so negative....worse than me, believe it or not!

    20minutes ago...She dashed for the bathroom. She had a reaction to some veggies that were drizzled lightly in Olive Oil. I only noticed from my bed as she was yelling and crying in agony, and begging for help - and she has an extremely high pain threshold! She nearly passed out on me, when I finally got her to unlock the door! She was vomitting, sweaty and dizzy and well...stuck on the loo, from what is known as dumping - where the Bile dumps into the intestine. I've just cleaned her up and got her laying down now - looks a mess, aching guts, unable to move much.....just like I was as a child. The Doctor said she has to ride it out, there is nothing to be done...again. It is a living demonstration of EXACTLY what I am terrified of - although admittedly this has been the severest attack I have seen in a year, and she has eating disorders that came after surgery because of this pain. I am so stressed out.

    This is my biggest fear...I am counting the steps in my head to fight a massive panic attack right now. This is exactly what I didn't need to see right now! I feel so screwed, and I can't do a damned thing about it.

    Thanks for your kind words....and for listening. Thank you.

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  • Posted

    Hi Jinny

    Have just read your posting, just to let you know I am having my gallbladder removed this Saturday and am absolutely bricking it :shock:

    I feel fine at the moment but that is only because of following a low fat diet, I know that if I was to indulge I would be in agony, the trouble is when your gallbladder is not giving you any gyp it is so tempting to think well maybe I can live with this after all, but the consultant explained to me the reason they take a gallbladder out when it is full of stones is because it can cause you lots of nasty problems like cancer ect in the future. I must say after reading the comments on this website people have convinced me that removal is the best course of action, the positive stories definitely outnumber the bad ones, and it doesn't matter what surgery you face there can be reactions to it. Do you get any help for your ocd at all, are there no support groups out there that can advise you?

    Benji smile

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  • Posted

    Hi Jinny,

    although I cannot possibly imagine what it is like to live with OCD I do understand the gallstones side.

    I am waiting for an op date and although I am nervous I want it to be soon.

    I have good friends who have had the op and are absolutely fine. OK, it is not nice. Surgery never is but it is much better than living life in fear of another attack (and I too know what it is like to have an attack that lasts several days).

    Presumably you have some sort of counselling or something to address your OCD. Have you discussed your fears here?

    Please don't convince yourself that it will all go wrong for you. OK your mum had a bad time of it but everyone is different. For you it could be routinely straightforward.

    As i said at the beginning i cannot possibly understand OCD (although watching my husband check the door is locked for the 4th or 5th time in 2 mins and then washing his hands if he touches anything I may have a slight insight) but I am sure you have taken the first step by confronting your fears.

    Chin up and go for it. The flip side isn't worth thinking about (Liver damage etc)

    Lelly xx

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  • Posted

    Thank you for your replies.

    I think I will go for it. I'm not exactly having a ball right now, am I.

    I mean, it is probably stress, but since my mother's wonderful demo of my worst fears (she is still very poorly today), I can't eat anything, and have had gut cramps, gurgling, diarrhea and vomiting anyway - and my poor gallbladder is getting such a battering from all the pressure of vomiting. I have acid reflux, and general nausea too.

    I also have a friends graduation on 23rd July, and a special event on the 25th July that I really want to attend. In my current condition I would be unable to attend either event. I know it is my fears (and current Gallbladder situation, but more my fears at this moment) putting my life on hold...I don't want to live like this any more. I hate it.

    I am soooo scared, and am going to drop the surgeon an email, again telling him of my fears and concerns, so maybe he can find something positive to say and restore a little trust somewhere in there - even if he lies to me about understanding.

    I am not under any treatment for OCD, or my Post Traumatic Stress Disorder, both diagnosed by professionals as a part of the insurance when I had the car crashes, that started it all. However, insurance only covered certain things, and my awful GP thinks both conditions, and also depression, are 'childish attention seeking' and refuses to offer any referrals or assistance. I am waiting a place in my area to change to another GP.

    Benji - Good luck to you with your operation. Please would you check in when you can, and let me know how it all goes....good and bad. I will be thinking of you.

    Lelly - Your husband certainly sounds as if he has OCD. It is impossible to understand if you are not a sufferer, as the condition is completely irrational, and can be dibilitating in itself. You are right about the implications of leaving things to long. It has been playing on my mind also.

    Thanks to everyone. The hardest part is feeling there is no support - even when there is...but it really helps to find people that are going through the same main condition.

    I love the internet! lol.

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  • Posted

    jinny - nice to hear you sounding more possitive today. i hope you are able to get some where with your surgeon, try to keep positive - don't let this beat you.

    all the best

    keep in touch

    vix

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  • Posted

    Jinny,

    I do hope this works out for you. I take the micky out of my hubby re OCD but in truth it is not funny. We have got to the stage that he will get in the car and ask me \"did you watch me lock the door\". Even if I didn't I will say yes as it puts his mind at rest. The hand washing is the worst bit as he permanently has sore cracked hands (and that is with moisturiser) but he is just borderline phobic about dirt.

    We are lucky, he is so mild most people wouldnt notice but it is not funny and I can imagine t is very difficult to live with especially if you know it is irrational.

    So keep smiling, I am sure it will all work out in the end.

    lelly.xx

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  • Posted

    Lelly - Thank you for your response. I have a wonderful tip for your husband's poor hands. I have been there, with the red, cracked, painful hands from overwashing, and naturally drying them as I couldn't use the towels, and had every moisturiser under the sun applied regularly. I and many other's in his skin state, use just 2 cream products and it has turned things around. It is FSC Natural Source Vitamin E Cream, and ESI Aloedermal (Fluid cream) Dermoprotettiva Ipoallergenica Crema Fluida Per Il Corpo. I use the Vit E cream as soon as my hands feel dry, and once in the morning when I wake up, before getting out of bed, and at night as I lay in bed. Tub looks big, but I buy 2 at a time, as I use it a lot. The Aloedermal one I use regularly throughout the day, usually after air drying my hands, as it gives a little protection. It took about 2 weeks of this to see the improvements. Also ask him if he can cope with a milder soap that has a 5.5ph. That will help too. Both products are easily absorbed by the skin. The products are quite expensive but they are worth every penny. Hope that helps. I get mine from a local holistic chemist, but I'm sure you can find it in a health food shop.

    Back to Gallstones:

    Well I called my GP to ask for copies of my blood and scan results. I also called the surgeon's secretary for an appointment. I got one for Monday 15th June 09, and the surgery can be done within a week of that, if I go ahead.

    I haven't come to terms with the surgery at all, in fact I vomited violently as soon as I put the phone down, but let's face it, nothing has changed in weeks for me, and it is only me who can change it. So baby steps are in order, and I have just taken the first couple. I'm scared.

    Yesterday, a friend of the family called as I was gallstone attacking. He is an alternative medicine practicitioner. He said I should drink Epsom Salts to stop the pain. I had, but it hadn't helped. Then he started telling me about the negatives of having the gallbladder removed, at length! He even said (remember this is while I was Gallstone attacking and he could hear my gulped breaths and writhing in my bed) that 3 years after surgery the body runs out of salt and it starts attacking your bones leaving you with Osteoporosis!!!!!!! :shock:

    I felt pressured and distressed, and upset and every other pointless emotion, but more than that, I felt angry at him. Angry that he picked a weak time for me, to dump yet another alleged symptom of Gallbladder removal on me. This is the reason why alternative medicines are known to have bad press! I agree with natural methods and alternative medicines, and indeed use them, but there are times when they can't be the cure all miracle some would have you believe, and it is time to go to proven science. And in all the countless hours of reading, I have never found a connection between Gallstones and Osteoporosis - EVER...and don't hold much faith that there is either, regardless of the damning evidence he said he has. I was horrified by the bad timing of this news, and the continuing on of the negatives, while I was clearly in pain, even if the treatment he was offering was free.

    Maybe that is why, I am lying here now, planning my journey into London for my 11am appointment on Monday. sad

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  • Posted

    jinny, good luck for your appointment on monday - i will be thinking of you - just remember it is the first step to making your life better!!

    let us know how you get on

    vix

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  • Posted

    Well - it looks like I've hit a brick wall.....or been slammed into it.

    I emailed the surgeon some days ago, explaining my concerns, and asking for advice, or indeed, whether I should make an appointment with him and talk through my concerns. I didn't hear back, and after a couple days, I rang and made the appointment anyway.

    I got myself organised with my questions, and thought to do this baby steps...ok - step one - see and listen to the surgeon....step two - deal with when it happens. So I settled my mind on step one.

    About 2 hours ago, I get an email. It was from the surgeon, very politely telling me:

    \"[i:3605b9213d]I am not sure whether your investigations have ultimately left you irretrievably frightened.[/i:3605b9213d]\" and \"[i:3605b9213d]I cannot recommend surgery to you whilst you have such concerns, as acceptance of the condition and treatment required are fundamental to legal consent[/i:3605b9213d].\".

    I am so stressed out. I was due to see him at 11am tomorrow, as a private patient. Now what!? Cancel?

    I only told him that I was aware of the problems that can occur after surgery, what I had learnt of them, and also told him of my OCD, and my IBS as a child, and that I am afraid of returning to the IBS, and could he offer me an opinion.

    I simply don't know what to do. Just when I thought I had taken a step forward.......God! sad

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  • Posted

    Just called the secretary. The Surgeon feels my fears are too great for him to offer me any assistance, and he cancelled the appointment. He does not even want to see me.

    I have OCD. This automatically makes me more scared, more anxious, and more analytical than most 'normal' people. I had a list of questions prepared that would help me with my fears, most of which were suggested on his website, but I guess the fact that I showed my fear and voiced my concerns was too much.

    Now I gotta find another Surgeon that offers that one particular type of surgery and start the fear cycle all over again. Don't know what to do...I'm speechless and gutted

    :cry:

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