- Joined
- Mar 25, 2010
- Messages
- 186
OK, so here is my story and wondering if anyone has any suggestions or comments.
Since the age of 8 I started have colon concerns. At the age of 15 I was told that I had Colitis and was offered many treatments and all were unsuccessful. At the age of 19 I had my entire colon removed and was given an ileostomy. Shortly after the surgery I started have complications with the rectum, which they left in hoping to do a resection. They wanted to remove it, but found a doctor that wanted to do a pull through and a J pouch. Approximately 3 months after surgery I started to have back pain and they felt it was pouchitis (spelled wrong I am sure). I was given medications with no change. They thought is was my sciatic nerve inflamed and basically told me there was nothing they could do. Since this time I have had pain after I had a blockage or slowing of my system. I have been seen several times for this pain and always treated as pouchitis, with no little to no relief. I had have one complete blockage, which required emergency surgery and was able to be fixed. About one year ago I had another blockage and was admitted. During the test they felt I might have Crohns and waited to see if it would clear, which a nice NG tube did help. After several test they have found out I do have Crohns.
Ok here is where it gets good - so to see how back he Crohns is they send me for a special MRI test. I go back to see the doctor and he ask me if I ever have back pain - laughing I said I sure do, every time I get a slowing or blockage. I then ask why is he asking. He informs me they they found something in my that he has NEVER seen before. He found I have a fistula coming off my J pouch and connected to my spine. He was so shocked as well as the radiologist, so it was sent several places, including Brown Medical Ctr, to have them review it. After them reviewing it they confirmed the fistula. I was immediately sent to a surgeon. He reviewed the films and found that my J pouch as connected itself to my spine. He did not see a fistula and after a scope said he did not see any opening. He then sent me to an infectious disease doctor to make sure I did not have a bone infection. Now I was sent for a CT Scan and after this they again see the Fistula that is going towards my spine and the j pouch connected to my spine. Since this was found I have starting having severe left sided kidney pain radiating to my left testicle. I have seen a urologist and he found no reason for the severe pain, but feels it is from this growth.
No one has seen this before and they are NOT sure what to do. They have talked about surgery and want to remove my J Pouch and give me a permanent ileostomy, which I am fine with.
I am wondering if anyone has ever heard of such a thing and if anyone has any suggestions or comments that might be helpful.
I have about 10 doctors that are currently involved in my care / treatment and no of them know what to do.
Thank you for your time.
If anyone would like to view the MRI of this recent fisutla send me an email and I will send it.
Since the age of 8 I started have colon concerns. At the age of 15 I was told that I had Colitis and was offered many treatments and all were unsuccessful. At the age of 19 I had my entire colon removed and was given an ileostomy. Shortly after the surgery I started have complications with the rectum, which they left in hoping to do a resection. They wanted to remove it, but found a doctor that wanted to do a pull through and a J pouch. Approximately 3 months after surgery I started to have back pain and they felt it was pouchitis (spelled wrong I am sure). I was given medications with no change. They thought is was my sciatic nerve inflamed and basically told me there was nothing they could do. Since this time I have had pain after I had a blockage or slowing of my system. I have been seen several times for this pain and always treated as pouchitis, with no little to no relief. I had have one complete blockage, which required emergency surgery and was able to be fixed. About one year ago I had another blockage and was admitted. During the test they felt I might have Crohns and waited to see if it would clear, which a nice NG tube did help. After several test they have found out I do have Crohns.
Ok here is where it gets good - so to see how back he Crohns is they send me for a special MRI test. I go back to see the doctor and he ask me if I ever have back pain - laughing I said I sure do, every time I get a slowing or blockage. I then ask why is he asking. He informs me they they found something in my that he has NEVER seen before. He found I have a fistula coming off my J pouch and connected to my spine. He was so shocked as well as the radiologist, so it was sent several places, including Brown Medical Ctr, to have them review it. After them reviewing it they confirmed the fistula. I was immediately sent to a surgeon. He reviewed the films and found that my J pouch as connected itself to my spine. He did not see a fistula and after a scope said he did not see any opening. He then sent me to an infectious disease doctor to make sure I did not have a bone infection. Now I was sent for a CT Scan and after this they again see the Fistula that is going towards my spine and the j pouch connected to my spine. Since this was found I have starting having severe left sided kidney pain radiating to my left testicle. I have seen a urologist and he found no reason for the severe pain, but feels it is from this growth.
No one has seen this before and they are NOT sure what to do. They have talked about surgery and want to remove my J Pouch and give me a permanent ileostomy, which I am fine with.
I am wondering if anyone has ever heard of such a thing and if anyone has any suggestions or comments that might be helpful.
I have about 10 doctors that are currently involved in my care / treatment and no of them know what to do.
Thank you for your time.
If anyone would like to view the MRI of this recent fisutla send me an email and I will send it.
welcome to the forum.
