- Joined
- Mar 16, 2016
- Messages
- 1
Hi everyone,
Im 45 years old and have just been dx'ed with Crohns after two horrendous years of symptoms and investigation.
Several doctors, including my GP, just put it down to piles but I was (and still am) losing lots of blood, mucus and suffer excrutiating pain when I use the loo....eventually I got a referral to a GI specialist and my bum was so inflamed and I was in so much pain, the only way they could assess me was under general anaesthetic - this took almost three months to arrange.
It transpired I did have a small pile, but I also had severe proctitis and a fistula which was repaired by a seton. They took biopsies and I had to wait ages for a result. My specialist put me on prednisolone enaemas to reduce the inflammation but it was so painful to apply that I could not do it, so was swapped to oral steroids.
After a few weeks I started to see a small improvement, although I was still suffering but the moment my steroids dropped off my symptoms came back with avengance. I was taken into hospital twice due to pain and rectal bleeding and have now been on steroids for 6 months and have to undergo some more hospital investigations to see if I have a stricture in my bowel and see how my colon is.
I am now under a new specialist IBD team and I have had loads of blood tests to determine if I am suitable for Azathripone(?) which sounds like a horrid drug but seems very effective.
I have other health conditions to contend with - fibromyalgia, RA, sleep apnoea and a few other things, but this is by far the worst thing I have ever experienced. I have no idea if I am ever going to get better and get very depressed because this disease has completely limited my life.
I just wanted to share my story.....thanks for reading.
Im 45 years old and have just been dx'ed with Crohns after two horrendous years of symptoms and investigation.
Several doctors, including my GP, just put it down to piles but I was (and still am) losing lots of blood, mucus and suffer excrutiating pain when I use the loo....eventually I got a referral to a GI specialist and my bum was so inflamed and I was in so much pain, the only way they could assess me was under general anaesthetic - this took almost three months to arrange.
It transpired I did have a small pile, but I also had severe proctitis and a fistula which was repaired by a seton. They took biopsies and I had to wait ages for a result. My specialist put me on prednisolone enaemas to reduce the inflammation but it was so painful to apply that I could not do it, so was swapped to oral steroids.
After a few weeks I started to see a small improvement, although I was still suffering but the moment my steroids dropped off my symptoms came back with avengance. I was taken into hospital twice due to pain and rectal bleeding and have now been on steroids for 6 months and have to undergo some more hospital investigations to see if I have a stricture in my bowel and see how my colon is.
I am now under a new specialist IBD team and I have had loads of blood tests to determine if I am suitable for Azathripone(?) which sounds like a horrid drug but seems very effective.
I have other health conditions to contend with - fibromyalgia, RA, sleep apnoea and a few other things, but this is by far the worst thing I have ever experienced. I have no idea if I am ever going to get better and get very depressed because this disease has completely limited my life.
I just wanted to share my story.....thanks for reading.
I don't know about the fibromyalgia or the apnea but I can say for certain that arthritis is a symptom of crohns and it may have been your first symptom of you've had if for quite a while. You can have inflammation in your bowel for years and years and not have any clinical symptoms. Since your first investigation lead to the discovery of a fistula I would bet you had inflammation for quite some time before you had any bowel symptoms. Not that this is any help at all, just an observation. Have any of your drs connected any of your other issues to your crohns?
I hope that you begin to see improvement soon. Please keep us updated and let us know if there's any way we can help you.
