I'm really glad to have found this site as I too am struggling and am finding it hard to talk with people who really understand. I had been feeling really depressed up until a few months ago when I discovered something amazing.
I am 42 years old and I Live in Perth, Western Australia with my Wife and kids (2 of my own along with twin 2 year old girls whom we fostered at birth). I am originally from the South East of England and emigrated to Perth in 2004 with my wife and 1 year old Daughter.
We live on the crazy end of the scale, as the twins are at that stage of regular tantrums in the street / supermarket / bedtime and once one goes the other goes too, which is fun. My own kids are a bit older at 10 and 12 and are a great help but i do feel sorry for them as they don't get as much Mum and Dad time as they would like. I may also be guilty of using money to make up for it, alas that just seems to create more want for expensive things, doh.
Anyway some history about my condition:
At 3 months old I was rushed to Great Ormond Street Childrens Hospital in London with Volvulus of the intestines (complete block of the bowel). This caused septicemia and a resection was performed to save my life.
At 5 years old I was again rushed to Hospital with Volvulus. It wasn't picked up as early this time and so gangrene developed in the intestines. A resection was performed and the doctors decided to reconnect the small bowel in a counter twisted location to help prevent future volvulus. They also took out my Appendix in fear it would be lost now the intestines had been moved.
AT 9 Years old, I was once again rushed to hospital with Volvulus and again gangrene developed in the intestines. This was the worst one so far and after the resection was performed the prognosis was terminal, somehow after 6 weeks I pulled through.
At 11 years old it happened again but not as bad and so there was no operation, just 2 weeks in hospital.
Then nothing until I was 25 when i started being affected by certain foods which would cause intense swelling and pain in the direct location of the operations, after some investigation it was labelled as IBS due to adhesion's. The IBS came and went until I was 36 by which time i was in Perth, Western Australia. I remember the day clearly, myself and a friend were taking down a pergola attached to the side of the house when all of a sudden my belly became distended, swollen and very painful. A few hours later i took myself to Hospital were they confirmed I was had a bowel obstruction, possibly caused by the scar adhesion's from the previous operations. This was the beginning of my Chronic pain journey.
Every day since I have suffered pain in the abdomen, it started out as a permanent dull ache and has progressed into an all encompassing pain that debilitates the whole mind and body. As I write this my pain score is a 7 that starts deep in the abdomen and shoots upwards towards my chest. Pain is almost always accompanied with swelling, this affects what i eat, what i wear, How I sit on a chair, what i do for a living, everything. I am effect ably disabled even though I am not recognised as such.
At 36 I started having regular bowel obstructions again, 2 years later after multiple weeks in hospital recovering I started to have them every week and so in 2010 a major operation was performed to remove the adhesions causing the issues. The Surgeon said afterwards he removed multiple balls of collagen the size of a mans fist under the scars. This resulted in almost 2 years of freedom, the pain was still present no more obstructions or so I thought.
In January 2013 it happened again, mildly at first. now I am back to square one. Pain levels are at an all time high, Currently unemployable and running out of money. The family security is at risk and I have no one to help or guide me, we risk loosing not just the house but also the twins. I am their Dad and all they have ever known, I can't let that happen.
4 months ago I was made redundant from a 2 year job I loved, the details were vague as to the reasons, but i heard from others it was due to my condition and they felt i was a liability.
So I got a new job and on Wednesday last week I was let go after a 3 month trial as "It wasn't working out", they refused to go into details but again I heard from another it was due to my condition. I am attempting to go it alone whilst looking for something new but how much more does this have to go on. Its depressing.
So where I am now?
I take between 10mg and 30mg of Targin every day, when I take 30mg its bad so I may also take 50mg of Ketamine as breakthrough pain relief, although it doesn't last more than an hour. I also take Alprazolam for panic disorder but this is tightly related to my condition.
I've tried everything else and this is the only combination that made an impact although not a good one. I am dependent on Targin and it's slowly ruining my life.
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Hi Benald. I read your post with a large amount of compassion for your situation. It makes my situation look like a holiday. I have severe back pain from my waist down due to surgical invention after a fall that broke my lower vertebrae as well as other soft tissue damage. I have significant nerve damage and scar tissue after nearly ten surgical interventions. I have studied chronic pain at many levels and feel that I can help others to some mild way by being a good listener and sharing some of my research. had to leave work due to my condition and I haven't worked for seven years now. I had a great, well and professional position in St John Ambulance (Victorian Sate Curriculum Manager). I had just been offered the national position when I realised that I had to turn it down and concentrate on my pain. I stopped my almost finished Masters Degree in Education and felt that all that work was wasted. However, I have finally, after nearly two decades of dreadful pain, that it is only me that can make sure that the next twenty years will be different and better than the last twenty years. I have explored all medical options and all medication options that are available in the medical field and now I have no choice to change things or let the next twenty years be just a repeat of the last twenty years. I see a psychiatrist who spends a lot of time with you and he allows me to explore my own thinking. He has been very good for me and is not a doctor who just thinks that medicines are the answer to everything. Do you have a specialist who you can talk to? One thing that I have realised after all of these years is that I have had to accept that there is no magic bullet. Pain management is very young field and the current knowledge of neuroplasticity is only just beginning. We feel pain in the brain. It's like the people with amputations. You do not need a foot to feel pain in n amputated foot. But you do need a brain. Amputees feel pain in their missing parts because the pain pathways are well established and they continued after the limb is gone. When we feel pain, the pathway for the pain is well established. If it's been there long enough, then it won't easily go away even if the tissue damage is long gone. This is such a hard thing to accept, but until we accept it, we can't change it. I can recommend some books for you about all of this if you are interested. Please don't give up. I suggest you start exploring 'mindfulness' and exercise rather trying to find the solution. I hate to say this but there is no solution. There is no answer. Please keep in touch if you want to talk more about this. In the mean time remember that solutions will not just come your way. You will have to find your way out of this situation. You have a lot to lose Benald. Don't waste time on seeking solutions. Follow you doctor's advice obviously, but try to appreciate that there may not be a solution. So where do you go from here? It's up to you with guidance of the doctors, but you have to start exploring the idea that may be there us no medical solution. It took me twenty years to realise this. Jenn
The following user(s) said Thank You: Marley, cazlake
Welcome and I'm sorry, may I suggest talking to your doc about Palexia, I was on Targin and Oxy and had lots of bowel issues, but with the Palexia none at all, well from it anyway.
Anyway we all here have a common let's say friend and we all have various ways of dealing with it, so poke around ask questions and on those days where life just sucks pop into the vent post and let it all out.
Oh and Jen-Jen I am in St. John but in nsw small world.
“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.
There is much familiar with your story amongst those wise words.
Plasticity is controversial but I think mindfulness is the beginnings and a gentle intro to plasticity because redirecting those neirons is 24/7 and hard work.
I take meds but it has taken years to develop the belief in neiroplasticity after being told it is a "chemical imbalance" for years amongst "attitude."
Pain and depression/mental illness has taken a lot from me. I no longer believe I can think/medicate these things away. I am learning how to live with this and accept I need to adapt because they are with me to various degrees, but with me to stay.
Once I could laugh with everyone
Once I could see the good to me
Holding the world inside
Now the world is grey to me
Nobody can see you gotta believe it
Oh oh the night comes down
And I get afraid of losing my way
Oh oh the night comes down
And it’s dark again
“The Night Comes Down” Queen
I understand the feeling that this will never go away and we have to learn to live with chronic pain for the rest of our lives while we are suffering continuously every day.
Personally I am not so pesamistic as while we may believe what we have read ,studied and experienced a great deal tohave come to our beliefs, We cannot tell what advances are likely to occur in the future.
A 100 years ago people died of diseases that today are curable even non existent.. new developments in genetics and science will give answers to many of the problems that we face. today.
Learning to accept where we are is important for our sanity, but to give up hope that one day a treatment will be discovered ,can lead down the path to depression and feeling that life is not worth living. and amplify our stress and suffering.more.
The fact we are conceived ,born and exist is a miracle in nature even though it may not seem that way at present.
Every second we generate 20 billion red blood cells ,very few errors during the whole of our life., many other miracles are occurring in our body every day
I find a good way to direct my thoughts away from pain is to study the human body. Its a great way to occupy ones time when possible.
A number of menbers have tried meditation but if someone is bashing your thumb with a hammer this is not a good time to practice . A few members have said heavy metal helps at these times or perhaps Mahler for the more classically inclined. may be more beneficial at this time.
Its sad when the amount of money is generated in drug sales and medical treatment is so poorly evaluated and Pharmaceutical companies are only interested in big profits.
Just recently a new alliance with 2 companies created an organisation called "Xenon Pharma" to evaluate a clinical trial.into a pain protein molecule, refer to "gdc-0276" and "gdc-0310" . if this will help[ understand where I am coming from..
Drug companies are just starting to realize the potential profits to be made by coming up with a cure for pain.
World wide this discovery will eclipse all profits made before.by these organizations
Over the next few years I am sure that many others will follow suit once the breakthough is discovered..
Its difficult to keep going in there sometimes but try not too abandon all hope of a cure.
When we tell people acceptance plays a big part in dealing with chronic pain, by no means does that mean giving up, what we want is to stop people chasing snake oil cures, there are those out there who will take advantage of any person who is desperate to end the pain in their lives, and a few have lost life savings as a result, some have been left in even worst pain or hospitalised by dodgy practices.