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Hi everyoneI know I'm not a regular here but I really need to let off some steam. Nearly two years ago now I went into hospital with severe/chronic RUQ pain. It was pretty much assumed I had gallstones, but I didn't. I had an ultrasound that showed gallbladder inflammation and (according to one doctor that has since been denied) a "fatty mass" right next to my gallbladder. Surgeon wanted nothing to do with me (must've been missing the golf course lol). I booked myself out because they were getting nowhere and I was going to lose my place at college if I didn't get back. Since had HIDA scan which was normal but showed fatty liver (today's blood results back that up as I have raised liver enzymes). I was referred as an outpatient to a gastro doctor, and they said it was probably "just" IBS, and possibly biliary diskynesia (sp?). They put me on amitriptylene but took me off it after it's initial mild results wore off. I was told that unless I had gallstones or developed them, they would not remove the gallbladder as it would not solve the pain, something to do with high recurrence and what parts are left behind (Sphincter of Oddi?). They said I would still get the pain even if they remove it. They said this was all "probably just IBS". Told me to avoid stress, impossible as a mum and full time student. Their approach seemed to be that if it was stress related, I should sit at home and do nothing forever to sort it rather than them having to do something about it. Since then I have not heard anything - I have constant dull RUQ pain that feels like a burning apple behind my ribs, and radiates up my right shoulder blade, also causing recurring hiccups (painful). That pain is always there, but there is another kind of pain that is sporadic, and occurs throughout particularly bad spells, which is v. sharp, stabbing pain. These stabbing pains tie in with spells of about 2-3 weeks of more severe pain, often alongside fever. Pain is bad enugh to cause fainting and vomiting. GP has prescribed antibios each time, these initially help - I have just finished a course of metronidazole and cefalexin which initially started to help but the course finished and the pain came back. All my pain is always in the same place, it does not change, ever. I was initially put on Tramadol for general pain relief, which worked at first when used alongside paracetamol, then wore off. It has never been strong enough for the acute pains. I was then given Diconal, which works well but completely dopes me out, meaning I can't have any pain relief through the day (as I am a mum of 3 and also in full time uni). I can't function mentally at uni on painkillers and therefore through the day I have to put up with the pain, which is bad on a normal day but not possible when I have the "flare ups". Today the GP has given me Temgesic. He is sending me for another ultrasound and then says he will "take it from there". I am so frustrated because it seems that the longer this pain goes on, the more they expect me to cope with. I feel if today's level of pain had a sudden onset, they'd have had me in hospital but instead they write me off with PKs and send me home. I also feel that they don't seem to see that I have a degree to do, I can't cope like this any more.
I was wondering if anyone had any experience of how to get things moving faster (obviously I'm UK based) and also if anyone could shed any light on this whether in terms of this actually being IBS (which I don't believe any more) or something else. Any support or pain relief ideas much appreciated too. Srry if I'm completely in the wrong place, but I joined here when they told me it was IBS and while I hope noone's feeling like I am tonight, I kindof think some of you do.
Thanks for letting me get it all out,Kathyxx
 

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You poor thing Kathy you are having a bad time at the moment,i certainly know the feeling as i suffer severely with IBS 24/7.It is a living nightmare.I am no Doctor so i can not comment on your symptoms that much,but this is my ibs symptoms:INDIGESTION,NAUSEA,BLOATEDNESS,CHRONIC STRAINING,ALTHOUGH BOWEL MOVEMENTS ARE ALWAYS SOFT,EVEN WITH DIAHORREA I CAN STRAIN,WHICH DOES NOT MAKE SENSE!PAIN IN STOMACH,PELVIS AND BACK,PILES,FLATULENCE and the symptoms do depress me as i suffer every day.There are antispasmodics for the pain of ibs and i see you had been on Amitriptyline.I have been taking 20mg at night for pain for two weeks but my GP said to try for another two to see if it eases pain any.I think if you can do you have another GP you could maybe see that might be more understanding of how you are feeling,that in itself can help.Hope you feel a bit better soon.Remember you are not alone.Take care of yourself.x
 

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Discussion Starter · #3 ·
Hi DianaThank you ever so much for your reply, and I am so sorry you are suffering too. I hope the amitriptylene helps you, it did slightly help me at the beginning. I have tried antispasmodics, buscopan and another I can't remember, but they don't work for me. I've also tried Colpermin, which made my acid worse (I produce too much apparently but have taken Lansoprazole for the last two years which works brilliantly, so forget it's a problem!). I don't think I've got IBS to be honest, I think they've used it as a reason not to continue trying to find a solution. I do get a stressy tum around exam time, and I have the acid problem, but I think this pain is too localised and permanent for it to be IBS - I would be expecting pain elsewhere too and other digestive problems. I think they've just been lazy in diagnosis and sadly for many doctors when you're out of sight you're out of mind, so they can get away with fobbing you off for years, perhaps without even realising they're doing it. Today my identical twin was diagnosed with Type 2 diabetes, she has good reason to have it being overweight and having had insulin resistance for years. I too am overweight, although not to the same extent, and I don't eat a high fat diet. However, I have read that most people with fatty livers have insulin resistance too, so that's another thing I'm going to have to investigate. I can't be diabetic like her or they would've found it by now, the amount of blood they've had out of me lol. Anyway, I had a Diconal a couple of hours ago now and woke up confused and a little bit bad-tempered a little while ago - the pain is less now but I hate this feeling of not being in control. Snapped at my fiance too because I couldn't get my words straight, so I feel really guilty about that too. Hate being someone who needs looking after, it's not in my nature and I don't want my kids seeing me as some kind of doped up needy woman either.
 

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Discussion Starter · #4 ·
Well it's morning here now and reading this thread back I'm quite embarrassed, I sound so self-pitying. I just needed to get it out, I feel like I'm letting my whole family down. I can't talk to my parents about it as they are quite stoic and don't even tell me about their own health problems, I think they see it as melodramatic. I am a more emotional creature than my parents would like, I'm sure lol. Anyway, this morning my head is thick and aching from the Diconal and my pain is back to normal. My appetite is not there, and I have to head off soon to Weightwatchers for my weigh in, which will no doubt be bad again. Before my flareup I was losing about 4-6lbs a week. Last week I ate literally half my points at most every day because I was so poorly, and I actually gained half a pound. How unfair is that lol. So anyway, I'm dreading that this morning as the leader said if I ate my points allowance I would lose weight, and at the moment I can't eat anywhere near that. If I've gained weight, I'd like to know what from!!
 

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Hello KathyI am sorry that you are suffering,i know what its like,although i think my symptoms are different from yours.I have also tryed antispasmodics the ones you mentioned and also Spasmonal and Mebeverine.I think you would rather loose weight through diet rather than ill health.Its my health problems that cause my weight loss,but i can not afford to loose weight so have to watch what i am doing.Have you thought about maybe talking to an expert about how you are feeling?sometimes it helps if you can not speak to family.Please dont be embarrased about what you have written,thats what the forum is for.Take care.
 

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Hi DianaI really do appreciate your replies, it's great to talk to someone not directly involved. I did think about speaking to someone but until recently had some faith that the doctors would "fix" me or teach me to manage things. After all, if I was getting better, I'd have nothing to whinge about lol. The doctor gave me Temgesic the other day, saying it would be easier to go to uni on that than Diconal (which knocks me off my feet). Unfortunately they didn't deliver as promised, they really did help the pain (although it wasn't gone but I don't expect that), but they made me very nauseous and gave me a stonking headache. I had to come home from uni yesterday because I was poorly. I took more last night but my partner left me in bed and I slept til 11am! I'm going to have to put a stop to this and find another way of dealing with the pain. The GP told me to ring if I had more questions. My twin sister was diagnosed type 2 diabetic the other day, after a couple of years of ignoring that she was insulin resistant. I have rung the GPs office to try and find out what my fasting glucose was when they tested it, as one of the main causes of fatty liver seems to be insulin resistance. I know it won't change much but if I can control anything about this I will feel better emotionally. I've read diet and exercise can help reverse fatty liver, so I am (mad as it sounds) going to start slowly training for this event as another thing to take control of:https://shine.cancerresearchuk.org/home?&am...term=shine_2010I have lost 20.5lbs so far in the last 6 weeks, I have a lot more to go. But that's another thing I can control, and that's what I need!Hope you are having a better day, and thank you for posting Diana.Kathyxx
 
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