Help - Do you ever feel like a problem?

[Barbie]

I'm so confused right now. I have awful awful pain and nausea but worse when i try to eat or drink anything and its high up under my ribs on my right side and round my back. The thing is I've been more constipated than running to the loo alll the time and its so different for me. These new symptoms have going on for 4 years but just graduarlly got worse. Kidney stones have been ruled out and everything else and now its been put back to crohns. My calcium levels were rock bototm and salts deranged when I first went in. They did the colonoscopy last week and found active disease patchy throughout large intestine but said ilium looked clear. However it was difficult for him to see cos the prep hadnt worked well. The CT shows thickening in right side of small intestine ...what a coincedince where my pain is. But because he has found this other inflammation he has ruled out ct saying it might have been the way it was taken or the angle or something so has sent me away wih predfoam pentasa omeprazole and if it continues to start azathirpene again. The pred foam is doing nothing but to be honest there is no way I want to go on pred tablets again ntil I know exactly what I am dealing with as I always seem to become steroid dependant. Its the high up pain im worried about. I would have been oblivious to the lower down stuff and to be honest I think that was probably flared cos of all the prep and stuff. I do have inflammation in my stomach and an ulcer too. So im hoping the barium follow through on monday will have answers im so scared im going to end up in hospital again before then though cos this pain is not getting better and im not even eating anything. It feels like it gets stuck and takes ages to pass through. I can eat a tiny meal and feel full for the next 24 hrs and if i try to make myself eat im in even more pain.

If I go into hospital they try to make me eat things I know I shouldnt through their lack of understanding and seem to go round in circles and dont listen to you. They make you feel like such a problem. You wait hours for pain relief and different soctors come round and tell you different things each day its like a lottery. I'm still having these night sweats the only thing I seem to be able to survive on is ice lollies. The pain is constant its not even spasm like. I feel like such a problem. I just want to get better. Luckily I don't have active vommiting but I feel continuously like I want to throw up.

Has anyone else experienced these wierd symptoms? I thought I had the hang of crohns up till now having had it 12 years but this has al come along and hit me like a tonne of bricks. Ive been off work for 5 weeks now ive got a mortgage to pay and I live on my own. Im so desperate for answers.

has anyone had these symptoms?

xx

 

[Silvermoon]

Have they checked for gall stones?

 

[Barbie]

they did an ultrasound of the abdo and a full abdo ct so guessing it would have showed?x

 

[I Love Lamp]

Im so sorry that your feeling so bad.

I know the feeling exactly. Last time i was in hospital they tried to make me eat a curry!

They should have special wards for us Crohnsies!!

Have they ruled out a narrowing?

 

[Barbie]

no hopefully the barium will do that on monday i wish it was tommorro so i could get on with my life lol

 

[Silvermoon]

I feel like such a problem. I just want to get better.

((((( Barbie ))))))) I do understand how you feel about this... my husband gives me heck all the time for letting things get so bad I literally can't walk because I feel like I am taking up valuable Dr time when I know there is nothing they can/want to do about it. I don't like taking heavy pain meds, as then I sleep all the time and get nothing accomplished. However, I am addicted to work...lol...

All of that being said, I get really frustrated when I hear of health care professionals "brushing" people off because they don't think/understand how serious the problem is to the patient. When I was in nursing school, one of the things we learned about pain is "Pain is what the patient says it is, and it happens when the patient says it does."

I have heard many doctors say "Oh we are not going to give him anything because he is just looking for a 'fix'...he is an addict". And that might be true... but that does not mean he is not in pain at that moment. Pain is an indicator of an underlying problem. It is our body's way of saying "Hey! Somethings not right here!!"

Don't EVER feel like you are a problem. If people make you feel that way, THEY are the ones who have the problem. Find someone who WILL listen to you. I realize lots of times that is way easier said than done. But a few times it has saved my life...literally. That is why I asked about the gallstones. My GP diagnosed my particular pain at that time as CD pain, and I kept hounding him that no, it was not, it was different, until about 5 days later, he finally did an ultrasound and found gallstones blocking the bile duct and causing pancreatitis.... another few days and things would have literally exploded and I would have been dead.

Perserve, persist, and don't ever doubt your body's signals... only you know it better than anyone else.

I hope you find the help you need.

 

[Barbie]

thankyou silvermoon x x It has been going on so long and I have put up with it and put up with it I even accepted it might be ibs on top of crohns lol until the last night shift I worked I couldnt give my all to my patients and I prmised myself that was it I would never attend work if I wasnt 100% cos its selfish but then you wait months and months to get sorted out. I discharged myself from hospital on Sat its a long story but they were trying to force feed me califlour cheese!! If my dietition was there she would have had a fit! I knew I had the fortijuice and tramadol for pain and a bm kit as I was hypo too but think id used all my carb stores and I could look after myself. I honestly thought the pred foam would work but its not doing anything and the inflammation he found isnt what is causing the pain. Now I think Ive been an idiot. I only usually take tramadol in exceptional circumstances but im having to take it to prevent having to call some of neee nawww friends. Im managing to keep my bm afloat with the forti juice but i cant manage much. I just want to get sorted out once and for all!!! Just gotta hang in there :0) x thanks for your support x

 

[Silvermoon]

Yup I hear ya...lol re: working while in pain. I am currently sitting in my office (I work in public health...immunizations and such) with a hemorrhoid pillow under my butt to keep pressure off some fistulas... because "I need to be there because someone might need me"... lol....

My theory is, we do it so we don't have to think about our own problems. But the truth is, you are right, we do no one any good when we don't show up in the best of shape.

Keep on hangin' on.....

 

[bethany84]

I'm so glad it's not just me who experiences the 2 hour wait for pain relief with the good old nhs! By that time the pain is so out of control it takes tonnes more pain relief than it would have if they had given it to us earlier!

I have the added bonus that pain killers don't have any effect on me. This is not due to long term dosing, they never have! The only thing that works for my pain when I'm hospitalised is IV morphine, and even that has to be in quite high doses in comparison to other people and considering I'm quite small. This causes more problems as particularly when I have night shift staff who know nothing about me, they wont give the correct amounts until I kick up a fuss and a doctor comes and tells them off, which leaves me upset and a feeling like a 'problem'... :-( x