More pain :( just avin a good old moan/rant!!

[nicola30]

hi there, ive not wrote on here for a while, well ive started infliximab waitin to go for my 3rd infusion no problems as of yet even before startin infliximab i had joint pain but its just gettin worse i get in it my ankles to which my right ankle swells, my wrists and startin to move towards my knuckles, my hips which today r very sore and my back which im constantly in pain with it used to b just the bottom of my back but now it seems to b movin up the spine my consultant is referring me to a rhuematologist so waitin for that appointment to come through.. i told my consultant how much pain im in and that the paracetamol does not even touch the pain at all but shes refusin to give me anythin strong and keeps sayin see wot the rhuematologist says/does, i feel like im bangin my head against the wall as everytime im in pain (it takes alot for me to admit im in alot of pain) she just over looks it. it feels like she isnt listenin to me and is only interested in the good things i have to tell her.. it looks like i have to b in pain until i see the rhuematologist and i dont have a clue wen thats gonna b :/ seriously thinkin of gettin a new consultant.. sorry for rantin/moanin xx

 

[Andy123]

Dealing with the pain

Hi Nicola

I have only been diagnosed with Crohn's/uncreative colitis since June.

I was in sever pain and suffering from trouble eating all sorts of things. I was admitted to hospital severely dehydrated and in sever pain, I had to have morphine.

when I left hospital I was prescribed Tramadol pain killers these seem to be especially good. read the side effects though.

A CT scan identified inflammatory bowel disease and a colonoscopy identified severe ulcers in the terminal illium (joint from small bowel to large bowel)

I was prescribed steroids to bring the inflammation down, this stabalised the IBD and allowed me to start to eat foods that I had found very painful
(potatoes and chips, red meat, anything with spices.

I could only take the steroid for 3 months because of side effects, the replacement drug recommended is azothioprene. the side effects are leukaemia, skin cancer and worse.

I decided to research what will help, allowing me to use Asacolrather than azathioprine. Asacol still has some severe side effect but not cancer.
(My NHS consultant was not happy prescribing this drug but I persisted) it is suitable for where in my intestine the ulcerative colitis is.

My research led me to the following to help me with the pain:

- eat no later than 6pm (so that if what you eat causes pain it should be easing off by the time you sleep, it is very important to get sleep to allow your body to heal.)
- Eat smaller meals (5 or 6 per day) with your main meals between 11am and 2pm.
- avoid starchy carbohydrates: potatoes, carrots, beetroot, sweet corn and maize additives
- avoid chicory, found in green peas and some other green vegetables.
- eat small amounts of white fish or egg white for protein
- white bread with olive spread is a good form of staple carbs (ensure it is branded, don't make your own. UK produced bread is fortified with vitamins by law, this will help because you will not get vitamins from the foods you can't eat.
- extra virgin ORGANIC olive oil seems to be especially beneficial, I use it to cook food with, fried eggs, fried chicken and other stuff, I also use it for dressings. I doesn't seem to make me fat but can cause spots because of how much I consume, my skin becomes greasy.
- avoid any cheese, cream and full fat milk
- use caffeine free tea bags
- wheat crunch crisps seem to help a lot and allow me to eat something different.

One of the side effects of Asacol is pancreanitis so I researched the symptoms, these include back pain?

good luck.

I have just joined the forum and have read that ginger root can help, I am going to try some later.

do you have any tips.

 

[KayleighMeek]

Sorry you are having problem with joint pain it really can be awful. Have you been to see your GP? They might be more open to prescribing you something for pain that's who prescribed tramadol for me when my joints were bad but I don't like taking it as it really messes with my head.
Have you tried over the counter co-codamol I find this better than paracetamol as it has codeine aswel as paracetamol. You can get stronger co-codamol if your dr prescribed it.
I really hope the rheumatologist can give you the help you need