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Self-Care with major Physical illnesses

Self-Care with major Physical illnesses

Hi @Former-Member This is an old post - it explains how medical neglect by Drs (doing no scans or tests) ended with me in hospital - the direct cause of my 1st emergency bowel surgery.

I have no current GP, since mine left (months ago) - will need to find one.

I have lived for several decades with serious physical illnesses (or conditions) -

Scoliosis, causing severe back pain

Sleep Apnea (diagnosed 11 years ago), causing debilitating daily fatigue - treatment & stimulant medication has moderately improved my functioning. Not to anywhere near a "normal" level, for someone without a Sleep Disorder (or a fatigue condition).

A bowel obstruction (tumor), with 3 major bowel surgeries (2 emergencies) - from which my body has never fully recovered.

My digestive system (which was disconnected for 6 months), has not worked effectively for the past 3 years - since my bowels were re-connected (stoma reversal surgery).

I also have Complex PTSD, from more than 2 decades of trauma.

Because PTSD is supposedly an "anxiety disorder" (so-called) - medical professionals have on several occasions attempted to "explain away" my physical symptoms as being "just anxiety".

This has stopped me from accessing adequate medical care, on several occasions.

The "just anxiety" was later found to be a life-threatening bowel obstruction (tumor) - which required immediate surgery. Then a 2nd emergency surgery, 3 days later (when the 1st went disastrously wrong). Then a 3rd bowel surgery, 6 months later to reverse the damage (& clean up the mess).

I now have 2 serious hernias, as a result of the bowel surgeries - wound split, extensive wide scarring, & hernias in the middle.

Have others experienced their physical illnesses (or medical emergencies) not being taken seriously - because of having a mental illness diagnosis?

How did you overcome these obstacles to receiving medical care (if you could)?

Self-care is difficult, when my food does not digest adequately - despite Probiotics & Gastrostop (when necessary).

I must run to the toilet with great urgency (Irritable Bowel Syndrome) - which is a cause of stress in itself, & makes working difficult.

Adge

405 replies

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In response to: Self-Care with major Physical illnesses

Re: Self-Care with major Physical illnesses

Thanks @Wanderer & @Mazarita

I appreciate your sharing, & found it helpful.

You had some good suggestions.

I have diarrhoea most days too Mazarita - due to Irritable Bowel Syndrome, caused by disconnection of my bowels (for 6 months), & removal of part of it. That's been for the past 3 & 1/2 years, not all my life like you've had.

Thanks @Bunniekins & @Former-Member

For your kind thoughts & support.

Adge

In response to: Self-Care with major Physical illnesses

Re: Self-Care with major Physical illnesses

Thanks @Faith-and-Hope

I will ask someone about digestive enzymes. A good idea, the Dr never mentioned that one.

Dr just said keep on doing what I'm doing - he couldn't suggest anything better.

Hi @Shaz51

My psychologist reckons eating fermented foods might help - Apple cider vinegar is fermented @Former-Member

Thanks.

Adge

In response to: Re: Self-Care with major Physical illnesses

Re: Self-Care with major Physical illnesses

Hi @Adge Sorry I can't speak from my own experience as I've not had to live with chronic pain and multiple surgeries. But it's good to see you getting support here.

I would like to tell you about my adult child - they have had abdominal pain most of their life and have ultimately been diagnosed with IBS after years of being told the pain was stress related. They had to push and push and change GPs many times to find one who kept doing diagnostics until they found the problem. And now have seen a dietician several times too. They have been put on a 'low fodmap' diet (google it) and now rarely have the pain and other symptoms. They are also avoiding lactose (in milk in particular but other foods also). Wondering if trying these measures could be helpful for you? You can get 5 'allied health' consultations which include dieticians with a 'chronic disease health care plan' which your GP can do for you. Under medicare so there would be a good rebate or bulk billing to make it affordable. Best wishes for some aleviation of your symptoms.

In response to: Re: Self-Care with major Physical illnesses

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Re: Self-Care with major Physical illnesses

I will look into that for my D3 @eth ..... her chronic abdominal pain may not be stress alone, although it appears to be a significant catalyst.

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Re: Self-Care with major Physical illnesses

Hello @Adge

Will try to respond tomorrow...

was on here too long this morning..

takes me forever to read back on posts and then I do not have time to respond..

take care

In response to: Re: Self-Care with major Physical illnesses

Re: Self-Care with major Physical illnesses

Hi @Adge

I feel for you with bowel issues. I walked with my brother through some delicate times. He tried juicing and everything under the sun. I have been lucky. Part of it is due to poverty. We did not have lollies and I never had a sweet tooth and was very solidly into healthy food after I went to uni. Tho I do go overboard at times now.

Fermented foods are good for everybody. I have the main things; yoghurt, sauerkraut, dill pickles and often drink very dilute apple cider vinegar.

I can relate to a chronic physical condition with my neck issues from late 20s. Its now over 30 years and I am in a position to better manage it. Just back from osteo today. She saved my life, as she and gps in her clinic, knew I was for real. I taught the gps' child for a while, small world and all that. Been going there for 15 years. It took me years to realise that her hyper niceness to me was a recognition of my the level of my physical pain. It was her way of coping. I can only imagine what being witness did to my poor son, but what coud i do.

I am with you @Mazarita on the benefits of doctor google. It does not replace good health care, but certainly an informed patient is always better, and doctors that are insecure and cannot respect client's active interest in their own health are problematic, IMO.

@Wanderer Long term pain is a tricky one and I had to deal with it. As I had small children and was breast feeding I developed an early approach of no painkillers. I worked with all the other pain management strategies I could. It is why I do a lot practical music.

The interactions between physical and mental health are varied but very relevant.

In response to: Re: Self-Care with major Physical illnesses

Re: Self-Care with major Physical illnesses

I phoned Hospital an hour ago - to enquire about my Referral for Hernia Surgery, & to ask why I have not received any letter from them - as promised via sms message 4 weeks ago.

The GP told me that the hernia is serious, & that it may require accident & emergency admission, if it is not seen to.

The hospital person said that not enough background information (or my bowel surgery reports) had been included in the Referral sent by my GP.

So the hospital has put me as low priority (Category 3) they said – in the absence of further supporting documentation from GP.

That would possibly mean a 12 month wait, before any letter was sent to me – or for any surgeon’s appointment (they said).

I was expecting a letter from them explaining this (no letter) – instead I’ve had to find out this information via telephone follow-up.

Adge

In response to: Re: Self-Care with major Physical illnesses

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In response to: Re: Self-Care with major Physical illnesses

Re: Self-Care with major Physical illnesses

Seems to be a recuring pattern @Adge

Been there too many times and am not the only one.

Far too many people are down graded or not taken seriously.

Hope they get you sorted.

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