IBS or Not ?

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Hello.

My name is Andrew, I am 34 years old and prior last summer I haven’t ever visited a doctor for any issues.

This post is a long shot and a cry for help since after a lot of visits to different doctors and quite a few diagnostic examinations, I still feel un-diagnosed and left to live with the question on what’s wrong with me.

I would like to apologize if sometimes my English read a bit awkward, but I am kind of rusty in typing a more demanding in a vocabulary story.

Some basic info

Age: 34, Male, Nationality Greek – (Mediterranean)

Current Weight – 63/64kg – Height: 1.72

Known Medical issues: Mild Scheuermann’s kyphoscoliosis / Thalassemia b trait

Some history:

As I said I have never visited a doctor and I had no known issues other than the above medical issues which 1) I have from puberty (kyphoscoliosis) and 2) Thalassemia (from birth).

*note 1, I fixed before the main episode (described below) quite a few tooth’s I neglected and had starting forming cavities. -> I also pulled out an old tooth root canal that was beyond saving.

*note 2, I was treated with Axetine 500mg Cefuroxime on June for 10 days/ 2pills per day for a bacterial throat infection

The main problem

Last July while at work I had an episode that would be best described as a panic attack or a pre syncope episode, I was working on my pc when I started feeling disoriented, a bit blurry looking at the screen and with a shortness of breath. I went to the bathroom to throw some water on my face and shake it off as I thought it might be dehydration and/or overworking the past few days. I urinated also since I was feeling bloated and that’s when I felt a cold sweat and a sudden tachycardia (in the range of 140-160 bpm as more episodes followed and I recorded the next days), I notified my colleagues and since they were alarmed seeing my ghostly white skin color, they decided to call for help. After 15 minutes or so lying down I got a bit better and the paramedics came, they took my blood pressure, oxygen levels and said I seemed fine but to be sure I should visit the hospital to get checked out. Sine I thought it was a onetime thing and everything might be a result of exhaustion I went home to get some rest and see how I would feel the following day.

Well, the next day was normal up until early evening where after a good lunch and while in a rested position I experienced again a tachycardia episode, I tried to stay calm and measured my bpm in 15sec x 4, resulting in a 152bpm tachycardia all of a sudden without any increased levels of anxiety or any other physical/psychological stimulation.

The next day I visited the emergency on a private hospital asking for an explanation and I started with diagnostic exams that continue up until recently, since more episodes followed and still I am experiencing symptoms.

Basic symptoms

Severe bloating – is the most persistent symptom, especially after the first meal of the day, bloating continues all day and I feel better only early in the morning after I wake up or after I visit the toilet and have a successful bowel movement. This symptom is following me every day without an exception from the first episode.

Tachycardia episodes as described above, they start with a shortness of breath usually after being bloated all day, they last a few seconds 30 or so and after a 15-20 minutes period I recover. (I haven’t got one in the last 40 days or so but I had overall maybe 15 episodes from July 2018)

Occasional heart palpitations - or being more aware of my heartbeat by feeling its rhythm in the chest, neck, throat etc.

Loud abdominal sounds, coming from the stomach and/or bowels

Occasional constipation - Abdominal pain and trapped gas – pain comes and goes but it seems most of the pain sessions come when I am constipated or unable to pass gas.

Low body temperature, I remember my regular temperature was 36.6c / 97.88f from readings when u get better after a flu etc, nowadays I get 35.4c/ 95.72f υp to a 36.1c/ 96.98f maximum

Significant Hair Loss (more than 20 hairs on simple pull test) – could be irrelevant or stress related due to the situation I am experiencing but I think it is worth mentioning since I actually wondered in the past how is it possible to have such strong hair and I never noticed hair falling out.

Some lifestyle history

I am a smoker for the most of my adulthood, usually 10 to 15 smokes a day

I was a heavy drinker, I would never drink during the day but when I got off work I usually would have 2 to 4 drinks on a regular day (depending on how tired I was) and might get up to 8 or more drinks on special holidays or events (once or rarely twice per month)

I usually take up demanding roles in my career (Store manager in flagship retail stores, now e-commerce manager etc) that cause stress but (in my opinion) I manage and use that stress creatively to enhance my performance.

I did little to no exercise since I enjoyed (from what I could tell) a high metabolism, always stayed thin even after consuming high calorie meals mostly at night.

I won’t lie I treated my stomach really bad, I have never had a regular eating schedule for many years and for large periods of my life I would only have a large meal (usually in the evening ). I avoided eating during the whole day and at work since I felt eating was getting me sleepy or less active than on an empty stomach.

I consumed large meals and high calories alcoholic drinks at the evening – night and that’s probably how I maintained my weight.

The weird thing is I never had stomach issues with the above lifestyle no more than a rare indigestion when my meals were high in saturated fats/ fried etc.

During my treatment on the bacterial infection I had to eat more regularly for the antibiotic rounds so I decided It was about time to change my eating habits for good, as I did the following period. that’s when I started to feel bloated for the first time but I attribute it in the change of my eating habits, the more meals that I consumed and starting to put on weight.

During the past months I also cut back on alcohol to maybe 1 drink or no drinks during working days and maybe have a couple of drinks on weekends.

After going down to 57kg on weight when the symptoms were more severe last summer I tried and kept a better diet of 3-4 meals & snacks and now I am back to 63/64kg.

I have cut down on caffeine intake too, usually only one coffee at the morning, and sometimes a second one after midday.

I have started working out 5 days a week mainly weights and some cardio.

My diagnosis atm is Severe IBS, but honestly I don’t know what to believe since I haven’t had a clear day of symptoms, not one… and every day I feel from crap to desperate and I got sick of complaining to myself or others (who won’t possibly understand and most of them suggest relax and attribute my symptoms to anxiety or stress) – I was also found positive with H.pylori and I was treated.

I have done the following diagnostic examinations all of them came back in normal – or slightly off normal ranges as my doctors say.

Abdominal ultrasound, Gastroscopy, Colonoscopy, MRI enterography, Heart ECG, cardiac echocardiogram)

Bloodwork:

3xdifferent full blood counts

Calprotectin ❤️0μg/g negative

Helicobacter pylori blood antibodies igG

Electrophoresis (confirmation on Thalassaemia Trait Beta)

Urea

Uric Aciid

Creatinine

eGFR (MDRD)

SGPT (ALT)

SGOT (AST)

Serum Iron (FE) (3 different analysis twice at first symptoms and one recently)

UIBC

Troponin-T

CRP

Glucose Fasting

Cholesterol Total, HDL Cholesterol, Triglycerides, LDL Cholesterol,

HbA1c IFCC, HbA1c DCCT

Calcium

Magnesium

Albumin

Ferritin

TSH-FT3-FT4 (2 different analysis one at first symptoms and one recently)

Cortisol (am)

B12 Vitamin

Folic Acid (2 different analysis one at first symptoms and one recently)

h.pylori Ag feces – negative for treatment h.pylori confirmation.

Docs subscribed and I tried the bellow medications (the ones for IBS that doesn’t seem to work).

Controloc 40mg pantoprazole

Nexium Esomeprazole for mild Erosive oesophagitis, Gastritis, duodenitis findings in gastroscopy

Nexium + Amoxil + Claripen for positive Clotest biopsy of H.pylori

Duspatalin Retard (mebeverine hydrochloride 200mg)

Librax (Clordiazepoxide + Bromure de clidinum)

Tempocol Pepermint oil capsules

Deanxit Flupentixol 0.5mg – melitracen 10mg (currently using)

axentine cefuroxime 500mg for Bacterial throat infection before the actual story

a tetanus shot & Augmentin + Cal.pootassium 625mg for a dog bite I got after a neighbors overexcited and over friendly dog.

I have also tried some over the counter medicines or supplements after consulting doctors but did not help

Ortis Fruit&Fibres, Dulcosoft (macrogol) for constipation relief

Dulcogas (simethicone) for bloating

Lumaren Ranitidine 150mg for bloating / stomach neurosis

Maalox Plus for indigestions

Nopar (Spasmolytic anticholinergic, 4mg Homatropine methylbrmide)

Buscopan plus for abdominal pain / bowel spasms

Folic Acid supplements, b12 supplements, Chios Mastic gum supplements

My current doctor says I should stop doing any more exams and focus on controlling what seems to be a persistent IBS, but honestly I am not convinced and deep down I feel there is some other underlying condition that I could treat either with more lifestyle changes or medication.

What could be missing? Any other possible conditions I should bring to the attention of my doctor or any other diagnostic tests I could take?

I could post all findings from the examinations if that’s helpful…

Thanks for reading this!

Andrew.

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  • Posted

    Oh Andrew, you poor thing. I am so sorry you have been going through all of this. I am a 53 year old woman, but I swear it sounds like we could be twins with all of our medical similarities! I will not itemize here simply due to I am worn out recovering from my broken ankle. However, has anyone ever suggested that you be tested for Ehlers Danlos, Dysautonomia and/or POTS?

    The kyphoscoliosis and some of your other symptoms can be indicative of these genetic diseases(I am being tested for them as we speak)

    It also sounds like you need to see a Rheumatologist or maybe even Endocrinologist or Cardiologist.

    Please keep us posted on any developments of how you are doing.

    Good Luck!

    Susanne

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