- Joined
- Jul 8, 2011
- Messages
- 15
I was diagnosed with Crohns, on New Years Eve, 2003. What a way to start a new year !
I'd been suffering with abdo pain for nearly a year, with my GP doing ultrasounds, x-rays and blood tests to try and find the cause. I felt like a guinea pig with all the different meds I was tried on. He thought it was an ulcer, then he thought it could be bile duct problems. I was put on the waiting list (6-9 months) to see a consultant for further investigations. I paid privately to see the consultant, who booked me in for an endoscopy and colonoscopy the following week. The endoscopy was clear and the colonoscopy showed problems, but couldn't be completed due to the pain and some narrowing. I was then booked in for a barium enema, the following week. After waiting 2-3 weeks for results, I got the news that it was crohns.
I was hit with high prednisone doses and osalazine. The osalazine wasn't helping matters, so I stayed on the pred, with dihydrocodeine for the pain. I was tried on azathioprine, but after 12 weeks I was getting pretty ill with bone marrow suppression and suspected pancreatitis, so it was stopped and I went onto Remicade. I had about 7 treatments with it, but it too wasn't helping as much. I then went onto budesonide instead and had a long course of ciprofloxacin antibiotics for a throat infection. Everything cleared up nicely, and for 18 months I was med free, just taking fish oil capsules.
The week before my wedding, it hit my eyes - I had episcleritis, so in my wedding photos, I could have my swollen sore eyes open and grimace, or close my eyes and smile. Wish I could get them redone, as I don't seem to be smiling at all. This needed steroid eye drops, on top of everything else, to try and get under control.
When it flared up again, it did with a vengeance. I have been on budesonide and spent a week in hospital on IV steroids to get it under control. My B12 was too low, so the injections started. I had another colonoscopy, MRI scan and CT scan, which showed inflammation as before.
Since changing jobs, it has become more settled and is once again ticking along.
I'm taking B12 injections, cholestagel capsules, mercaptopurine, tetracycline, ranatadine and occasionally cyclizine when the antibiotics make me feel sick. I'm suffering with terrific elbow joint pain and occasional cramps, but it's a lot better than before. If I have to change meds, my consultant has me lined up for Humira or Low Dose Naltrexone therapy. The Naltrexone sounds good, as it has no side effects :ywow:
I'm supposed to be taking calcichew and fosamax, but can't get on with them (calcichew=gas and bloating, fosamax=nausea and heartburn), so hoping the bone thinning repairs itself, now I'm off the steroids.
Other than the joint pain, I find the constant fatigue to be the biggest problem. Always feel tired and it takes a lot of effort to start on something, but I do carry on until it's finished - it's just starting that's the problem !
I'd been suffering with abdo pain for nearly a year, with my GP doing ultrasounds, x-rays and blood tests to try and find the cause. I felt like a guinea pig with all the different meds I was tried on. He thought it was an ulcer, then he thought it could be bile duct problems. I was put on the waiting list (6-9 months) to see a consultant for further investigations. I paid privately to see the consultant, who booked me in for an endoscopy and colonoscopy the following week. The endoscopy was clear and the colonoscopy showed problems, but couldn't be completed due to the pain and some narrowing. I was then booked in for a barium enema, the following week. After waiting 2-3 weeks for results, I got the news that it was crohns.
I was hit with high prednisone doses and osalazine. The osalazine wasn't helping matters, so I stayed on the pred, with dihydrocodeine for the pain. I was tried on azathioprine, but after 12 weeks I was getting pretty ill with bone marrow suppression and suspected pancreatitis, so it was stopped and I went onto Remicade. I had about 7 treatments with it, but it too wasn't helping as much. I then went onto budesonide instead and had a long course of ciprofloxacin antibiotics for a throat infection. Everything cleared up nicely, and for 18 months I was med free, just taking fish oil capsules.
The week before my wedding, it hit my eyes - I had episcleritis, so in my wedding photos, I could have my swollen sore eyes open and grimace, or close my eyes and smile. Wish I could get them redone, as I don't seem to be smiling at all. This needed steroid eye drops, on top of everything else, to try and get under control.
When it flared up again, it did with a vengeance. I have been on budesonide and spent a week in hospital on IV steroids to get it under control. My B12 was too low, so the injections started. I had another colonoscopy, MRI scan and CT scan, which showed inflammation as before.
Since changing jobs, it has become more settled and is once again ticking along.
I'm taking B12 injections, cholestagel capsules, mercaptopurine, tetracycline, ranatadine and occasionally cyclizine when the antibiotics make me feel sick. I'm suffering with terrific elbow joint pain and occasional cramps, but it's a lot better than before. If I have to change meds, my consultant has me lined up for Humira or Low Dose Naltrexone therapy. The Naltrexone sounds good, as it has no side effects :ywow:
I'm supposed to be taking calcichew and fosamax, but can't get on with them (calcichew=gas and bloating, fosamax=nausea and heartburn), so hoping the bone thinning repairs itself, now I'm off the steroids.
Other than the joint pain, I find the constant fatigue to be the biggest problem. Always feel tired and it takes a lot of effort to start on something, but I do carry on until it's finished - it's just starting that's the problem !
. Thanks!
