Hi everyone
My hubby was diagnosed with Crohns in 2008. He had been feeling very ill and almost collapsed. We went to A&E and they said it was appendicitis, so removed his appendix and sent him home. Over the next few months he became ill again and the GP referred him to a doctor at the hospital. After extensive tests (all showing nothing) they did a MRI which showed he had crohns in the terminal iliac (near to his appendix) and advised he didn't really need any treatment. He decided to take Asacol daily as he was advised it was a possible protection against bowel cancer. I had just beaten cancer so it was a choice he felt he had to take.
Over the last few months he became very unwell again losing 2 stone. I was so scared it was something nasty and encouraged him to go to the doctor. His consultant had discharged him as he didn't want to go down the steroid route and wanted surgery to remove the small diseased part.
I myself currently have a stoma (radiotherapy for my cancer has damaged my bowel) and I was under St Marks hospital in Harrow. Whilst there my hubby asked for advice and my consultant there told him they tend to use surgery there rather then a medical approach and that he could be referred there by our GP.
In the meantime our GP referred him to another Consultant at our local hospital who was really nice and listened to our concerns. He sent him for an urgent MRI and last week rang us with the results.
His crohns has spread dramatically to the large bowel and had bored into other areas. It was now classed as severe. He has recommended Infliximab which obviously has horrible side effects and raises the risk of lymphoma. With my past cancer we are very scared of anything that raises the risk.
He has also said he will refer my hubby to a surgeon - possibly mine! He is unsure though if the surgeons will agree to operate if he hasn't tried the medical approach first.
Of course with my history we are aware that surgery could lead to a colostomy or similar.
I am very scared. He has supported me over the years and now its my turn to be strong and I am finding it hard. He is in pain a lot and has to watch what he eats. He has begun researching different treatments such as Faecal Microbiota Transplant (FMT) and we were wondering if anyone had tried it or anything similar.
I would be grateful for any ideas or recommendations you may have.
Have any of you tried Infliximab or FMT? Are there any doctors you could recommend us contacting?
Really any information would be great as I am frightened.
Thanks for letting me join
:hug:
My hubby was diagnosed with Crohns in 2008. He had been feeling very ill and almost collapsed. We went to A&E and they said it was appendicitis, so removed his appendix and sent him home. Over the next few months he became ill again and the GP referred him to a doctor at the hospital. After extensive tests (all showing nothing) they did a MRI which showed he had crohns in the terminal iliac (near to his appendix) and advised he didn't really need any treatment. He decided to take Asacol daily as he was advised it was a possible protection against bowel cancer. I had just beaten cancer so it was a choice he felt he had to take.
Over the last few months he became very unwell again losing 2 stone. I was so scared it was something nasty and encouraged him to go to the doctor. His consultant had discharged him as he didn't want to go down the steroid route and wanted surgery to remove the small diseased part.
I myself currently have a stoma (radiotherapy for my cancer has damaged my bowel) and I was under St Marks hospital in Harrow. Whilst there my hubby asked for advice and my consultant there told him they tend to use surgery there rather then a medical approach and that he could be referred there by our GP.
In the meantime our GP referred him to another Consultant at our local hospital who was really nice and listened to our concerns. He sent him for an urgent MRI and last week rang us with the results.
His crohns has spread dramatically to the large bowel and had bored into other areas. It was now classed as severe. He has recommended Infliximab which obviously has horrible side effects and raises the risk of lymphoma. With my past cancer we are very scared of anything that raises the risk.
He has also said he will refer my hubby to a surgeon - possibly mine! He is unsure though if the surgeons will agree to operate if he hasn't tried the medical approach first.
Of course with my history we are aware that surgery could lead to a colostomy or similar.
I am very scared. He has supported me over the years and now its my turn to be strong and I am finding it hard. He is in pain a lot and has to watch what he eats. He has begun researching different treatments such as Faecal Microbiota Transplant (FMT) and we were wondering if anyone had tried it or anything similar.
I would be grateful for any ideas or recommendations you may have.
Have any of you tried Infliximab or FMT? Are there any doctors you could recommend us contacting?
Really any information would be great as I am frightened.
Thanks for letting me join
:hug: