Hi again,
I am so sorry to hear what rotten treatment you have been getting. It is so wrong of them to say they cannot help you any further because obviously that is not true. I was told, the first time I saw the consultant, that surgery is the last option if all other treatments fail. I would ask your consultant why they have subjected you to all the horrible tests if they were unable to do anything to help you no matter what the outcome, I wonder how he/she would be able to justify all the tests and expense to the NHS if their intention all along was to tell you that nothing could be done - it makes no sense at all because it makes all the tests you have undergone pointless. Do you have an appointment with the consultant next week or is it your GP? If not your consultant, is there any way you can get hold of him/her? It is everyones right, by law, to ask for a second opinion if you would like one, so perhaps that could be your next step? I receive a copy of the results of every test I undergo, have you had the same? If not, you can ask for them and, also by law, they have to supply them. There is no way that you should be left like this indefinitely...
For me too, the irrigation procedure is helping less and less. I am very lucky that I have a wonderful GP but since my initial appointment with her when she ordered the colonoscopy she has not had any further input into my treatment (of this problem). The colonoscopy was carried out at my local hospital and after reviewing the results, the consultant, wrote to my GP and told her that she needed to refer me on to a specialist in this particular field of medicine. From then onwards I have been going to St Thomas' Hospital in London and have been under the care of a specialist nurse and a consultant, Except for the tests I have always seen the same two people which has made things much less stressful. Letters explaining my treatment and the results of any tests are forwarded to my GP and also to me, so I have known exactly what has been going on since the beginning.
You cannot continue to live with this problem and in pain without them doing something about it. Consultants transplant hearts and kidneys and perform other miracle surgeries every day so telling you that nothing can be done to help you with a bowel problem is completely ridiculous. It does sound as if they are trying to fob you off and that is not acceptable. You definitely need a second opinion, preferably from someone at a different hospital.
As far as my operation goes, I don't have a date yet, I had my pre-op assessment and was told I would have the op within 3 months, 3 1/2 months later I haven't heard anything but I am not concerned as we all know that the NHS is underfunded and struggling to cope. The consultant won't know until he opens me up whether a resection or 'tuck' of the bowel lining will be enough or whether a bowel resection will be necessary, if it is the latter I will be scheduled for another operation as it will be major and I will have to stay in hospital. I am at the point of not caring whether it is either, I just want it sorted out - I am sure you feel the same.
You should be getting the same level of help and treatment that I am getting no matter where you are in the UK, you must have to restrain yourself from screaming at the top of your lungs. Do you have anyone to support you, husband, boyfriend, sister, mother or a best friend? Somebody that can go with you to your next appointment to back you up?
Don't give in to the thoughts that you are going to have to live like this forever, it will get sorted out one way or another, don't let them bully you into giving up.
xx