The conclusion

Wednesday afternoons is the other day Dr 7 does his ward round. I had missed the ward round on Monday because I had been down having the barium X-ray test, although I was told that Dr 7 wasn't there on Monday anyway.

Yesterday morning I had been called down for the anal ultrasound. When the woman showed me the ultrasound probe I winced- it looked so big. It didn't have the ping pong ball bit on the end as I thought it would but it was still pretty long and quite wide. 

Suffice to say it hurt and the doctor wanted to stop but I was determined to have the test done so that all the tests were done in time for the ward round. I was sure they would show a cause for the pain and incontinence also. 

That afternoon I was sat on my bed waiting expectantly for the doctors thinking that today might be the day I get some answers and a plan of how they're going to fix my bottom and take all this pain away. What I didn't expect was for my whole world to come crashing down around me and for me to be left completely dumbfounded. 

Dr 7 came and usually he would sit on the bed to talk to you. He didn't today which straight away I thought was unusual. He said that he had the tests back and that I wouldn't like what he was about to say. I was thinking to myself, it's ok, I can deal with whatever you're about to tell me, nothing can be worse than the pain I'm experiencing. And if its bad news then it means you will fix it. 

"I've looked at your tests and thought about this long and hard. You're not going to like this but I think you're caught in a cycle of pain, a cycle that you're exacerbating. The pain killers aren't working and there seems to be no benefit from increasing them as they don't help with the increased pain. There is no pathological cause for the pain that I can see, I think that it is anxiety based. That you have some unconscious, underlying anxiety that you need to address. You need to develop some coping strategies and some methods to deal with the pain that don't involve pain relief. We don't have a chronic pain team in the hospital but there is an anaesthetist that I can ask to come and see you. He might be able to help you."

At this point although completely stunned I said to him, "With the greatest of respect, I think the anxiety thing is a load of rubbish."

To which he replied "With the greatest of respect, that is what I'm telling you. We've looked for the cause and we will not look any more. You will just have to accept this. Do you have any questions?"

His tone was accusatory and confrontational, as was his body language. He stood there, all six foot something, normally a gentle giant, with arms folded, eyes blank, rushing through his ward visit with a level of unkindness I had never witnessed from him before. I was stunned, so much so I was unable to speak. I just shook my head and he said "you need to think about what I've said".

I looked around at the others who were attending the ward round with him; Dr 8- his registrar, the ward manager, the nurse practitioner, and one of the nutrition nurses. Not one of them would look me in the eye. Not one of them challenged him, said they thought he was wrong, that they had witnessed this pain first hand on the ward. 8 had sat with me yesterday during an attack for half an hour, mopping my brow, giving me his word he would find out why I was getting this pain and yet today he wouldn't even meet my gaze, ignoring the plea in my eyes for someone to be on my side. 

And then they were gone leaving me alone, bereft and heartbroken. I sat on my bed, the curtains pulled around me and cried. I sobbed and sobbed feeling like a time waster and a hypochondriac. I thought back to all the times I had experienced the pain, thinking could this possibly be in my mind, but I knew it wasn't. 

I cried for longer that I thought was possible. Who knew the body had so many tears or maybe mine had been storing them up over the last few weeks, ready to unleash them on a moment like this. But then I stopped feeling sorry for myself and the tears became hot with anger. How dare he speak to me like that? I knew this pain was in my bottom, not in my head and just because he doesn't know what's causing it doesn't mean there isn't a cause. 

Feeling outraged at the way he had spoken to me I went to the nurses station and asked Ward Sister if Dr 7 could come back as I had some questions for him. Now that I had recovered and picked my jaw up off the ground that is! She came back a few minutes later to report that he has gone to see patients on another ward and he was refusing to come back. He would send 8 to see me later. Again, I was taken aback. This was not the Dr 7 that I was used to seeing; he was usually caring and compassionate but there was none of that today. 

I went back to my bed and cried again. I rang my Hubby and let it all out to him, in a great tsunami of grief and anger. Needless to say he was shocked and amazed and made me promise to get a meeting with Dr 7 that he could attend with me. It wasn't fair, he said, that they deliver that news to you, alone and vulnerable and then just leave you. He told me to write down the questions that I felt were unanswered or issues that hadn't been addressed and that we would challenge him together. He spoke to me for ages, calming me down, his voice soothing. I longed for him to come up to the hospital, to put his arms around me and hold me tight but when he offered I refused. I knew he had the children to collect, a presentation at work to prepare for and as much as I needed him, I knew that it wasn't fair to ask him to put all those things to one side just for me. 

I went and asked Ward Manager if I could speak with her for five minutes as she has witnessed the attacks and also been on the ward round and in the MDT meeting that morning. Ward Manager said that she had challenged Dr 7 over his conclusions and said that she and her nursing team had witnessed these attacks and that they could not be imagined by me or made up. She had fetched him when I had an attack a few weeks ago (do you remember?) and apparently he was not impressed with her when she did that so it would appear he has harboured these thoughts for some time now. 

Dr  came to see me soon after saying that he had a ton of paperwork to catch up on and that he would come to see me in a few hours when he had done it. Was that ok, he asked and like a sulky teenager I just shrugged my shoulders. I felt too hurt to speak with him at that point anyway. I still could not believe he had stood there and said nothing during Dr 7's speech. 

Exhausted from crying I found my eyes closing and I allowed myself to submit to the overwhelming sense of exhaustion, too tired to fight anymore. 

When I woke 2.5 hours had passed and I was afraid that  would have been and gone, using my sleeping as an excuse not to speak with me. I shouldn't have judged him so harshly as 3 hours later, as promised, he came. 

Rather than talk at the bedside with ears pricked ready for every detail, we went to the clinic room. I was angry with him but had calmed down, ready to have a rational discussion with him rather than be angry and crying so that was probably a good thing. 

I sat there waiting for him to speak, wondering what would come out of his mouth- his words or Dr 7's?

He said he had no idea what Dr 7 was going to say and he was shocked in the way he delivered the message. He did say that Dr 7 had been in Saudi Arabia for a conference on Monday/Tuesday and had just flown back, so he was exhausted. None of his colleagues who had been on the trip had come into work on yesterday, having the day off to rest but he had because he wanted to do his ward round & see his patients. He said that it didn't excuse his behaviour but may give a reason for it. Whilst commendable that he wanted to see his patients I said, maybe if he was so exhausted he should have done the same as his colleagues and had some time to rest, rather than take it out on his patients?

I told Dr 8 that I thought his tone and his body language was accusatory and confrontational and at the time I was absolutely stunned by it, to the point of being unable to speak. Dr 8 thought that the ward round may not have been the best place to deliver this message and that perhaps a meeting should have been arranged. 

We agreed that just continuing to dose me up with opiates is not working and is not the best course of action to continue with in the future. However, there must be a degree of pain relief as when the attacks come the pain is excruciating. Dr 8 wants to explore a couple of other medications that can be taken at the start of an attack but he needs Dr 7 permission to do so. 

He agreed that having the anaesthetist come to see me would be a good thing and he may be able to explore some drugs that act on the nerves or even block an area of nerves through an injection or something. He apparently is very good and Dr 8 heard Dr 7 call and leave a message on his voicemail after the ward round. 

I said that I thought the whole 'this is caused by unconscious, underlying anxiety' is a load of rubbish and that I had already seen Dr 9 (the psychiatrist) last week who believed I had good coping mechanisms in place and had no concerns over my mental health, a sentiment shared by Lisa, the pouch nurse. She had arranged for me to see him as she was fearful that this was the way it was going to go and thought that if I had seen Dr 9 already and he declared me 'sane' then it might help me fight my position. 

I asked why my continence has worsened along with the pain, and that surely suggested that there was something not right. Dr 8 said there is one more test he can request which tests the functioning of the sphincter muscles rather than just looking on a scan to see if there's damage but again he needs Dr 7s permission to request it as Dr 7 said that he has looked for a cause and is not looking anymore. 

I explained to Dr 8 that I felt that Dr 7 has just washed his hands of me in the same way the surgical team have. Do you know that not a single surgeon has been to examine me or to check the pouch whilst I have been in? 

If the top gastro consultant and the dean of St Marks/best surgeon have given up on me, then what hope do I have?

I asked about getting a second opinion and he said he thought that was something that would need to happen via a GP referral so it could take weeks/months to see another consultant, even if we found someone we thought would be worth seeing. 

I said that the pain had begun following the surgery in January and had worsened in intensity and the frequency and duration were increasing. If it was due to anxiety why had I never experienced them before as in the last 5 years I've had a lot to be anxious about, probably more so than I currently do. 

I requested that a meeting be set up with Dr 7 that my Hubby could attend with me which Dr 8 said he would facilitate. I asked for it to be this week and he said he would see when he was available. Dr 8 was apologetic but said he has only been here for two weeks and feels unable to really challenge him. 

I feel like I have lost all faith in the hospital and now have nowhere left to turn which is a lonely and frightening place to be. 

I AM NOT MAKING THIS UP. IT IS NOT IN MY HEAD. I don't wish myself to be ill but this pain and the symptoms simply cannot be as a result of some psycho/ pseudo issue. 

I just want to get better and go home to my Hubby and my kids. I miss them all so much and my heart breaks that I have spent so much time away from them. I feel like I now have to summon some energy for this fight and I don't know if I've got enough. I've fought this illness for 6 years and now it would seem that I need to fight my doctor to get him to believe me and help me find out why I'm having this pain. I just don't know if I've got the fight in me. 

I thought that with the surgery in January I was nearing the end of the road but it seems that I may have only just begun this journey. 

NB x