Stomach problems & blood problems

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Hello I am 29 and a female from Cardiff UK.

In 2011 I was diagnosed enlarged choldochal cyst because I was rushed to accident and emergency because of severe abdominal pain and vomiting, had blood tests came back normal, had a ct scan with dye injected they found a 'mass'' few weeks later that's when I was diagnosed. After much discussion from a liver specialist telling me there was a risk of developing cancer which could affect me much more when I get to my 40's and to prevent this it was advised to remove this cystic enlarge bile duct, after  much talking and decision making and second opinion and it would be best  to have the surgery to remove it  which I had in June 2013 I had major surgery for choldochal cyst removal

( this involved removal of the gallbladder and bile duct as that was cystic) had this reconstructed from my intestine to the bile duct this is now where my bile now travels, the operation went well apart from having a very long internal stitch which it was never explained to me why this internal stitch was there all I was told that this was holding the area together.

No problems apart from last year summer 2014 I started to notice every time I ate something or drunk something I would get a pain in my stomach area. I put this down to stress working 11 hour shifts at work and not thinking anything serious but this kept happening even when I did or did not eat or drink anything.

And I ignored this pain for a very long time.

Last year September 2014 1 year and 3 months after the surgery I had the internal stitch out which went well. No problems.

In November 2014 I started getting alot of symptom's -

Tearing/burning - pain in chest left side leading to the abdomen near the stomach area and middle of abdomen going towards the belly button area and lower area of the abdomen pain near where I had previous operation this pain is also in the left of the back and left rib. Also burping for no reason

This pain is very painful and unbearable at times and it is constantly there and is getting worse. Abdomen and chest is tender and when pressed and hurts when I breath in deeply it hurts alot same at the back.

Pulse rate seems very fast when I stand up can feel this in my abdomen in the middle and left side. 

When I eat of drink anything within a few seconds I get pain in the stomach left side of rib and left side of back and down the tummy and middle of the abdomen

This pain is so painful that it makes me not want to eat or drink anything and if I lie down on my back flat on a bed for example I can feel the pain in my back.

There is also bloating in my abdomen.

There is also alot of noise.

Muscle weakness and numbness - in arms and hands, legs. When resting or lying down this tends to worsen and can notice it more so in the arms when resting or trying to go to bed and when standing up more so in my legs I also feel my veins hurt in my legs, I also get heavy legs feeling at times.

Tiredness/fatigue - I have no energy I am very tired when walking or getting up to do simple tasks like wash myself or go put the washing on the line. I am very tired while standing or walking and have no energy so much so I have to keep lying down or sitting down because being on my feet for short periods of time makes me feel unwell and I feel very faint lightheaded and dizzy and get shortness of breath and I feel weak.

Insomnia - either no sleep for days at a time or very poor sleep little as 2 hours at times this goes on and on.

Electrical tingling - in my head and neck some numbness in face both sides but mainly felt on left side.

warm swooshing sensations in my blood around my body feels like my blood is not circulating around my body properly.

Feeling sick or getting sick tight throat sensation which gives me problems sometimes swallowing saliva or eating or drinking.

Mental state - feeling like I am becoming stupid, alertness and concentration is not there, speech problems and communication problems and being able to understand is going and getting confused at times and generally feeling i am a fog like state of mind - I feel my brain is not functioning properly and it feels like I am not getting enough oxygen to my brain.

Clumsiness - when I am on my feet I am dropping things, walking into doors walls or another person loosing my footing.

Diarrhea- constant, orange stools, very recently stools are smelling they are orange and looks oily I was getting constant  diarrhea for months no matter what I ate but now they seem more solid still smells and is an orange in colour but im barely going at all compared to 4 to 5 times day of going diarrhea.  ( I also did a home bowel test kit a few weeks ago to test if there was blood in my stools and it came back positive)

I also got the sensation soon as I ate something I would need to go for a proper toilet, now in the last week this has now stopped and now I can barely go to the toilet and when I do try hardly anything is coming out.

Temperature - is up and down constantly feeling very hot especially during the night or hen going or trying to go to the toilet and after urinating I seem to feel warmer, then at other times i am very cold my hand and feet but sweating from my feet while feeling very cold.

 

Red blood spots by the looks of it has recently appeared on my thighs lower back and my legs.

There is pain also seems be near my collar bone areas and parts of the chest and near and abdomen leading to the neck and head, this pain is hard to explain but it feels like it is my veins and arteries and feels like I have a blood flow problem.

I have been going back and forth to my GP sometimes 3 times a week because my health is getting worse, blood tests have been done liver function full blood count, kidney function tests, thyroid All come back normal.

My GP has referred me to a neurologist and that is an 8 month wait, I do not think it is a neurologist problem at all.

Last week I went to accident and emergency after speaking with an NHS direct nurse and having a full assessment she advised me to go to A & E at the health hospital.

Went there was there for around 5 to 6 hours they did blood tests all came back normal. They injected some medicine which I don't recall the name but it was to help my stomach lining to stop me from being sick as I was vomiting for 3 days.  (when they put this in my veins it made me feel intense pressure in my veins and head before it started stinging my stomach) I asked if that was normal to feel like that the nurse said no but everyone is different.

After speaking to a surgical doctor who didn't tell me what he specialised in he was rude, telling me they are not going to do any abdominal scans when I had asked as my blood has come back normal and was comparing me to a previous patient, and telling me '' it would be bad medicine'' to get a scan of my abdomen and because of my age he isn't concerned. I am absolutely frustrated to say the least, They sent me home they didn't do anything apart from tell me they will write to my GP and ask for me to have my stomach procedure done which involves having my stomach looked at by a camera and to get that arranged by my G.P

I saw my GP 8th May 2015 explaining to her my symptoms again how she should refer me to get my stomach looked at, and her response is I'm not concerned about your stomach gave me some more sleeping pills to help me with my insomnia and sent me away.

I have been off work for 6 weeks because of my symptoms are affecting my everyday life, I feel very ill, and despite this going on since November 2014 I am getting very little help by the GP despite going up there sometimes as 3 times a week to try and get listened to.

Most of my pain is dismissed and all I keep getting told is my blood tests are normal and my GP just gives me medication for some of the symptoms and sends me away.

My pain is getting so more worse I am getting so frustrated and desperate to get answers.

The only medication I take is bile tablets for my bile I am on those for life, and recently because I am convinced I have something wrong with my blood flow and my abdomain I have been taking aspirin to thin my blood and this does give me some relief for short periods of time but not much.

I am 29 as I say and there is something that is going on. all my symptoms are getting worse piratically the symptoms with my blood and abdomen area.

Nothing is being done well very little the longer this is getting left the more worse I am feeling.

I am feeling very frustrated that I am not getting any answers every time I go back to my GP she rights me off because of my age even after explaining to her I had unusual surgery she doesn't seem to want to refer me to see any specialists I see her tomorrow as she has told me to write a list of my symptom's and come in to discuss it. Which is what I've been going through with her since November I am just not being listened to.

I am considering making a formal complaint and will seek advice through the CAB for that if nothing is going to be done.

I can't afford to go private otherwise I would.

I am hoping someone could give me some valid advice as I don't really know what to do anymore.

Thanks for reading would greatly appreciate any advice.

 

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6 Replies

  • Posted

    Treatment options include drugs that reduce acid levels, such as the proton pump inhibitors Aciphex, Nexium, Prevacid, Prilosec, and Protonix and the H2 blockers Axid, Pepcid, Tagamet, and Zantac. But taking medication is not without risk. In 2008, a study found that a proton pump inhibitor may weaken the heart-protective effect of the blood thinner Plavix in patients taking both medications.
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  • Posted

    Wow so sorry to hear your so ill I too have been having stomach problems for the last 8 months hospital or docs won't do nothing because blood tests come back normal! My pain was burning stomach pain felt sick all the time couldn't eat bloated doctors have me PPI's which I highly recommend u don't take as they now f*cked me up I now have heartburn and indegestion which I didn't have before anyway your symptoms sound a lot like maybe Lyme diesese or Guardia Lyme takes a while to show in blood and Guardia can only be detected in either stool sample which is not accurate or endoscopy

    Keep on to the doctors I no they are rubbish I changed doctors as I was fed up of not being listened to! Don't suffer and keep strong I wish u well xx

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  • Posted

    Hi candi, sounds like you are going through More than a stomach issue. Tired and fatigue, check your thyroid and B12. Stomach ..drink garlic and ginger water . You should also watch what you are eating . Back off dairy products and try a probiotic
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  • Posted

    Your condition sounds alot like what my wife has been going through.  i would like to know of an udate of how you are doing.  

     

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    • Posted

      Hello

      My symptoms have worsened. And unfortunately I have to go private and see if I can get any answers. I've had lots of scans seen a number or different specialists they all say everything is normal, accept during a ultra sound scan of my abdomen the radiologist stated everything in my abdomen is looking (congested) which means wearing away/looking smaller. Despite them seeing this no further follow ups. I believe I was misdiagnosed to begin with as a result of the surgery it has caused something to spread around which is consistent in the burning sensation I feel.

      I have been diagnosed with psychosomatic disorder, which I dispute and disagree with. This is very much a physical problem and not mental. I've made a complaint to the hospital with no resolution, now looking into legal action against them and my G.P.

      What has your wife had done and is suffering with.?

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  • Posted

    Believe it or not, those red blood dots on your thighs & other body parts are not to be ignored. Contrary to what the majority of doctors will tell you & most people believe, they are not inconsequential. And you are right, they do have blood in them. They may or may not bleed when scraped. They may or not may not not cause pain. If there is no pain, not a lot of them & they don't bleed, doctors generally won't even really acknowledge them, even if you point them out. They are actually called cherry angionomas. Yes, they are sometimes very common in senior citizens as it would be unrealistic to think that a body could respond optimally to everything as it goes through the process of aging & years of lifestyle effects. It is considered completely normal if not expected for seniors, but up until somewhat recently, cherry angionomas were rarely seen in the younger populations. Why? They are a clear signal of bromine toxicity, that's why. Bromine is not a nutrient, nor is it a requirement for life. Even still, it is added to so many processed foods that it's downright scary. In recent decades, bromine has replaced iodized salt in most bakery productions as it is substantially cheaper. To heck with public health & goiter prevention, it's all about profit, but that's another story.

    Even if your thyroid tests may be coming back normal, these spots show that both your liver & thyroid are struggling. When too much bromine is present in the diet, it competes against iodine to disrupt proper thyroid production & function by displacing iodine so that iodine can't bond to make T hormones. Make no mistake, iodine is a requirement for proper body processes; bromine is not. Bromine is a big bully & wins in every interaction & your body suffers.

    Your liver unsuccessfully tries to detoxify this bromine out in the normal way, but it just can't handle all of it. There's just too much of it. So in desperation, it tries to excrete the bromine through your skin, hence these bright red little capillary formations at the surface of your skin called angionomas. They have formed close to the skin in an attempt to expel the bromine from your body. The good news is that the spots will lessen in number or completely disappear altogether when you deal with the toxicity. Mine did. Keep in mind that the detoxing must include removing as many halides from your diet & environment as possible! In other words, that means remove bromine, fluoride, & chlorine from your world, not just in your diet. This includes bathing, body care products, oral hygiene, etc. You absorb up to a quart of water while bathing, more chlorine than you absorb from drinking chlorinated water. So a filter on your shower will do wonders for your body, skin & hair if you live in an area that chlorinates. Also, sodium fluoride is toothpaste is not a vitamin or nutrient. It's a drug made from industrial waste. Brush your teeth with an alternative to fluoridated pastes. Supplementing with magnesium would also be beneficial as well as boosting support for your liver & look to remove any liver stressors from diet. Unnecessary over the counter & prescriptions medications overstress your liver & PPIs actually hurt you. Don't believe their hype, honey. Your body actually needs more acid, not less, since your surgery. Apparently, your liver function was already chronically compromised, otherwise you would have never had your gallbladder & ducts removed at such a young age. Unfortunately, they saw your gallbladder issue as a cause instead of a symptom of a larger systemic problem & simply removed it. Just because two or more doctors agree on something doesn't make them right, but we don't cry about past things, we go on from here. I'd advise you to ignore the diagnosis of your problems being psychosomatic. Just because mainstream medicine can't 'find out' what's wrong, doesn't mean it's 'all in your head' or caused by it. A healthy body works well & a healthy one tries to communicate problems, even we don't always understand the signals or respond to them in a healthful manner. Helping your liver & thyroid may not solve your overall problems, but it sure wouldn't hurt.

    Also, make sure the bile salts you're taking are from a reputable company. They should be made from real ox bile & not vegetarian in nature. Yes, it's ok for the capsule to be vegetarian, but the product itself must be animal based, due your surgery. Even if you happen to be vegan, vegetarian or whatever, this can't be an ethical, emotional choice. Even if your liver would manage on its own to produce bile to break down fats in your food, your body no longer has the capacity to store or release bile as it is needed. Your surgery took care of that permanently. You are right is saying that you MUST take salts as long as you shall live.

    The orange stools signal that your present bile salt supplementation is probably worthless. Your body is not dealing with any of the fats you are presently ingesting. Until your bile salt issues are dealt with, stay away from any & all fats. Once you are getting the proper salts in your diet, your stools should turn darker, to a medium to preferably dark brown. Once brown, you can eventually add coconut oil & grass fed butter & other healthy fats back into your diet. Trans fats, soybean & canola oils & all fried foods are simply disastrous for you. Avoid them like the plague, but then I assume that you may already know that your body can't tolerate them.

    Good luck & bless you. I'm really sad to hear of someone of your young age having their health & wellbeing so compromised & challenged.

    Please let me know if any of this helps.

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