Gastroenterology problem

teegee

Hello all,
I am talking to you today to see if anyone can recognise themselves through my experiences; as I do not seem to go anywhere with doctors.
I have a crisis at the age of 14. I had just left my family in the Caribbeans and moved to France. During the year there, I spent most of my time in hospital with terrible belly ache. The only relief I had was to put my belly button area on the corner of a chair and a table and push it in. I could not stand straight, neither could I sit still. At the end, doctors came to the conclusion that it was mental and that maybe I missed my family. I was sent back home.
I was subjected to abuse again back home and I had to return back to France, because of major depression. Once there, the pain carried on, so did visits to the hospital. Before moving back to England, I got my appendices out, in prevention.
Once here, I have been in and out of hospitals with the same problems, however the situation was and is still getting worse to this day, I am now 58.
It is completely debilitating.
When in pain:
- the pain wakes me up at any time in my sleep, day or night
- I am like Darwin image of human evolution, completely bent and coming upright slowly, fully up after opening my bowel most of the time but not always.
- One of the worst pain is when I am trying to breath in. I have to breath in in small amount at a time, my inside feels like it is glued together and the passage of air is difficult. It feels like an irritation to the side of my intestines. I feel it red (don't know how to explain)
_ I am in tears of course and moody throughout the day/days. This can last a week at a time and can stop for 3 months
- I sweat when in pain, and of course my BP is over the roof
- I have pain on my right leg, when it is as if I feel what is running through my bone. But only in the right leg and in the bone. This comes often after a crisis/flair up.
- I get released after opening my bowel, however the first faeces is extremely painful and hard and then everything is smooth.

But usually, every week, maybe a day or two:
- I am full of gas and passing it can be excruciate painfulness
- I have a very bad relationship with food, (daily) I don't know which ones trigger the pain. Depending where I buy the ingredients from, it can trigger the pain. IE: pasta from Tesco or Liddl are bad for me though I can eat that from Sainsbury. French bread from Tesco is also a killer for me but I have nothing from other brands. 
- Raw tomato is a killer but not the sherry ones, green pepper is no good but I can eat the others (I don't like either when cooked, but that is just a matter of taste/texture)
- I am moody and depressed
- I leave in fear of going to bed and I sleep badly
_ I live off very strong painkillers, paracetamol does nothing to me when in crisis.

And lately:
- I am super tired at time (I need a daily midday rest)
- My bottom is very itchy and burning 

So, I was diagnosed with IBS a long time ago, prior to the different changes that had been listed above like not being able to breath in. I had a second colonoscopy today. They found everything is fine and that I have haemorrhoids (itchy bumhole which can drive you crazy). I am relieve that nothing serious has shown but at the same time I am still anxious that doctors will associate that to mental illness once more. 

I am just sending a call out. Does anyone live with these symptoms? How do you manage? What test would you advice me to ask for? Can anyone highlight me? Someone with Crone maybe? 

I am live with the fear of another flair up everyday of my life. Please help.
Thanks
TG

Jimm_Scope

Hi @teegee, I just wanted to say that I have Crohns and have read through your post. I do not have the time just now to give you my personal experiences and journey with Crohns but I will later today! 

I know how the pain feels and how tiring it is. I'll get back to this later and we can discuss it!

teegee

I will be very please to hear about your experience because the professionals don't seem to understand what I am talking about. I know no one who has it, so I can not compare, Thank you.
Tonie G