Have posted this on a UK forum too.. but thought I'd post it here as well! Forgive the essay!
Hi there,
Have been recently diagnosed with Crohns's and gallstones.. however am not entirely sure! I've been suffering with really awful pain in my upper right shoulder for about 7 years, it wakes me at night and is pretty horrific! For the first couple of years I was told I had pulled a muscle in my shoulder, and told to take ibuprofen and went through some physio treatment, neither of which made any difference at all! The pain got so bad several times that I ended up in A&E.. where they gave me paracetamol, looked at me like I was crazy, then sent me home.
After about 3 or 4 years of this going on every few weeks, the lack of sleep, trying to manage 2 children and a stressful job in the media, I decided I'd had enough! After a really bad bout of pain and lots of searching on the internet, I managed to convince my GP that the pain might be gallstone pain - he reluctantly sent me for a scan, and it came back that I did in fact have gallstones. Then, pretty much nothing happened. I had a couple of appointments with my consultant, who said that the pain might not be gallstones, and he wasn't really sure.. he just said I should change my diet and that was it!
So, tried low fat diets, cutting out lots of things.. kept a food diary, all the usual kind of things. Still the pain was carrying on every few weeks, with lots of stomach pain, diarrhea, extremely tired, irritable and miserable! I mentioned it to my consultant who just brushed it off as one of those things.. and I should continue managing the pain with ibuprofen and tramadol. After about another year of being ignored by my GP and my consultant, it got much much worse, ended up on morphine in A&E, and thought that was enough. I left about 10 messages for my consultant and after a month he managed to pick the phone up and call me back, got an appointment 2 months later to see him again and he sent me for another scan. They found enlarged lymph nodes in my stomach.. had no idea what that meant, and it scared the life out of me!
6 MONTHS later, I was booked in to have a colonoscopy. to find out what was going on. The main problem I have had is getting my results back, I always call secretaries and leave a message, and then nothing happens! Again, after several months, managed to get hold of my consultant and get an appointment. He said I MAY have crohn's, but they weren't sure. They gave me some PENTASA to take, and said to carry on taking any pain relief for the back and stomach pain. Skip forward to 3 weeks ago, had another colonoscopy with a great consultant - probably the first medical person to give me some insight into what has been going on. They found ulcers in my intestines.. lots of them, all the way through! He asked if I took ibuprofen, and I sad yes.. almost every day! He looked shocked and said I should stop taking it immediately as that is what may have caused the ulcers. Am now awaiting a call from my consultant for the results from the last colonoscopy...
Been told by my GP that I should stop the Ibuprofen, but can take Diclofenac for the pain instead.. have just checked online, and apparently Diclofenac shouldn't be taken if you have crohn's. Have no idea what to do! Have no faith in the NHS at all, and they don't seem to know what they are doing! Am stuck in a situation where I can't seem to move forward. Have had no sleep in 2 nights cause of the back pain, am feeling ill and spaced out cause of the diclofenac, thoroughly miserable! I promised the kids I'd take them out for the day as its the easter holidays, but instead am sat here on my own while my husband has taken them out by himself! So bored of this now, just want my life back!! HELP!!
Sorry for the long, long essay!
Hi there,
Have been recently diagnosed with Crohns's and gallstones.. however am not entirely sure! I've been suffering with really awful pain in my upper right shoulder for about 7 years, it wakes me at night and is pretty horrific! For the first couple of years I was told I had pulled a muscle in my shoulder, and told to take ibuprofen and went through some physio treatment, neither of which made any difference at all! The pain got so bad several times that I ended up in A&E.. where they gave me paracetamol, looked at me like I was crazy, then sent me home.
After about 3 or 4 years of this going on every few weeks, the lack of sleep, trying to manage 2 children and a stressful job in the media, I decided I'd had enough! After a really bad bout of pain and lots of searching on the internet, I managed to convince my GP that the pain might be gallstone pain - he reluctantly sent me for a scan, and it came back that I did in fact have gallstones. Then, pretty much nothing happened. I had a couple of appointments with my consultant, who said that the pain might not be gallstones, and he wasn't really sure.. he just said I should change my diet and that was it!
So, tried low fat diets, cutting out lots of things.. kept a food diary, all the usual kind of things. Still the pain was carrying on every few weeks, with lots of stomach pain, diarrhea, extremely tired, irritable and miserable! I mentioned it to my consultant who just brushed it off as one of those things.. and I should continue managing the pain with ibuprofen and tramadol. After about another year of being ignored by my GP and my consultant, it got much much worse, ended up on morphine in A&E, and thought that was enough. I left about 10 messages for my consultant and after a month he managed to pick the phone up and call me back, got an appointment 2 months later to see him again and he sent me for another scan. They found enlarged lymph nodes in my stomach.. had no idea what that meant, and it scared the life out of me!
6 MONTHS later, I was booked in to have a colonoscopy. to find out what was going on. The main problem I have had is getting my results back, I always call secretaries and leave a message, and then nothing happens! Again, after several months, managed to get hold of my consultant and get an appointment. He said I MAY have crohn's, but they weren't sure. They gave me some PENTASA to take, and said to carry on taking any pain relief for the back and stomach pain. Skip forward to 3 weeks ago, had another colonoscopy with a great consultant - probably the first medical person to give me some insight into what has been going on. They found ulcers in my intestines.. lots of them, all the way through! He asked if I took ibuprofen, and I sad yes.. almost every day! He looked shocked and said I should stop taking it immediately as that is what may have caused the ulcers. Am now awaiting a call from my consultant for the results from the last colonoscopy...
Been told by my GP that I should stop the Ibuprofen, but can take Diclofenac for the pain instead.. have just checked online, and apparently Diclofenac shouldn't be taken if you have crohn's. Have no idea what to do! Have no faith in the NHS at all, and they don't seem to know what they are doing! Am stuck in a situation where I can't seem to move forward. Have had no sleep in 2 nights cause of the back pain, am feeling ill and spaced out cause of the diclofenac, thoroughly miserable! I promised the kids I'd take them out for the day as its the easter holidays, but instead am sat here on my own while my husband has taken them out by himself! So bored of this now, just want my life back!! HELP!!
Sorry for the long, long essay!
