Ongoing Constipation and still no surgery date

At the moment, the only person giving me any support whatsoever is Professor Aziz, my Neurogastroenterologist at the Royal London. He has suggested that I could try adding Prucalopride to my laxatives and Sodium Docosyte. I asked my GP to prescribe this on Tuesday, which he did at the lower dose of 1mg. He wasn't very keen because it is a very expensive drug. To start with, nothing happened, but this morning my bowels have definitely been moving again, thank goodness. My GP would not agree to speaking to my consultants or chasing up the two consultants involved in my case I am extremely frustrated. My GP can see I am in a really bad way. He tried to organize a scan for my hernia - but there is no need!! My consultants know about this! What I badly need is my surgery date. It is having a profoundly negative impact on my mood, and is causing me stress and anxiety because I am self-employed and need to give my clients notice of my absence and arrange suitable locum referral etc. Today, I am extremely fatigued, and could do with a day in bed. Thank goodness it is Friday, and a long weekend at that.

Lack of Social Life

My social life has really suffered because of my health condition(s) - especially obstructive defecation. Basically, because when I defecate, I only pass very small amounts at  a time, as soon as I eat (as is with the case of many people), I then want to defecate more and this can happen every half an hour or so and isn't always very quick. It makes me feel very antisocial when I need the bathroom all the time during a meal out, so this has sometimes made me stay at home. This is really sad because I have found meals out something I enjoy doing. Hopefully when I have had my surgery, I will feel better about this again.

https://www.youtube.com/watch?v=FDoofbmIAaI

GP Visit - on Antibiotics and - strange lump!

For the past few days I have become increasingly constipated, had very bad breath and a brown tongue (!) and then pain deep in my belly button and below which reminded me very much of diverticulitis. Whilst I thought that they removed diverticular disease from my sigmoid colon when I had my anterior resection in 2016, it would certainly seem that I have similar symptoms. Yesterday I was feeling really rotten and was meeting my mum after a concert at lunchtime, only I just couldn't eat. I get sick and full quickly. I had more pain and had an early night and rested.

Although this morning I seemed to feel better, my gut definitely isn't and  I am only doing 'rabbit droppings.' I was very lucky and managed to see my GP. He prescribed antibiotics based on the diverticulitis theory, coupled with what my Gastro Professor had communicated - that I may have some intestinal bacterial overgrowth. I asked my GP to feel my tummy, which he did. He reported that it still felt nice and soft, which was a good thing, and, couldn't feel any stool, particularly, of fecal loading - but he did feel the strange lump I had been feeling, about an inch below my umbilicus. I don't know what this is, and neither does he, although I do have a known hernia. He has said to see how I feel over the next 2 days, but that if I am no better, not to wait around and go to the Royal London. I am going to chase my surgery date up yet again, because my body might not manage the wait!

Nasty Bacterial Overgrowth

For the last few days I have felt even worse than normal. I have had deep corkscrew pain in my umbilical area (I do also have a hernia there). My guts have been even worse than normal in terms of evacuation and I was clearly completely constipated for at least 2 days - and even though I took Dococyte last night and 3 laxatives I am not emptying at all well. In addition I have had terrible breath that literally tastes like poo. I had a dental check up and clean in the week, so know that my oral health is OK, and that is not the cause of my bad breath. I managed to email my Gastro Consultant and he asked if I had been taking Biokalt live bacteria, which I have been doing for months. He also suggested to try the Low FODMAP diet for a while, and if that didn't work that I might well need some antibiotics. On reminding myself of the Low FODMAP foods it is possible I have been consuming far too much lactose lately - although this has not been a problem group of foods before. I had mushrooms, mangetout and apples and coleslaw in the week a few times - so I can knock those out. I will be eating chicken, sweet potato and courgette for supper. This is all plain and settling, and I have some suitable fruit lined up. Debatable about adding cream or eating trifle....! I might wait and finish dairy products and then do a separate trial of lactose free for a whole week. I think I do actually need antibiotics given the taste in my mouth - all the bacteria must be having a field day since I am definitely not emptying my bowels at all well - worse than normal. Let's see if I do need antibiotics. Luckily I haven't had any for ages so I don't feel too bad about taking some. I have to say I really feel at the end of my tether. Here is a selfie of my tongue:

Living in the toilet!

Unfortunately I now feel that the toilet/bathroom has become my second home. I seem to live 'on the throne!' - I must be keeping Andrex in business - I go through at least one loo roll per day. It is a very miserable existence and I have had a history of anal fissures and fistulas, which is hardly a surprise given my present situation. I wouldn't be at all surprised if I don't have another fissure brewing. It is all so miserable, and I feel so sore and dirty because of this condition. My life seems governed by this condition as it has declined over the last nine months since the surgery which initially was so amazing. I wish I could reclaim my life. https://youtu.be/AizvTurY97Y

Feeling completely blocked up!

https://youtu.be/k0xPbVc0X4s

I just feel massive, fat, completely blocked up. It is so miserable having Obstructive Defecation.

Access to toilets!

One of the most distressing things about obstructive defecation is endless toilet trips - even occasionally at night. I don't know what my record is - but probably about 20 times in one day.

It's all very well and good when I'm at home - it is when I'm out and about that the fun beings, and there are not nearly enough of these - the humble public toilet. I think it is outrageous that human beings should have to pay to use a toilet for what is a normal bodily process. What has gone wrong for me are the endless attempts at evacuating everything.

After eating a lovely meal out with a friend, she and I went shopping, but because my bowels were loaded again (having eaten), I found it difficult to continue shopping and there was no way I was going to try anything on. I had to come home for private use of my own home toilet. By the way - I had already used 3 hospital toilets today, one in M&S, three times at the restaurant and then felt I couldn't face a further toilet battle. Enough was enough. However, I still think the use of a toilet should be a a free human right. 

Out-Patient Appointment Update

I saw Prof Knowles today. I am finally finding out why it is proving more challenging to get me a date for my surgery, but I do know that Mr Giordano has to be there, and be the lead surgeon because he performed my anterior resection last January, and will know how I was left (inside) when he last operated. It all seems rather uncertain. One thing I really didn't realise was that Mr Giordano would have used mesh to revise and to hold my organs in-situ. It maybe quite simple, and that I need a few extra stitches to 'tack' the mesh more firmly, or it could be a lot more complex involving an open surgery. At the moment the date might be 23rd May or 20th June. In the first instance this will be a more diagnostic laparoscopy, and if the problem appears simple, a few extra stitches. If, however, the problem is more complicated, it will involve an open surgery and much more detailed repair. Whether or not this would be done at a later date was not made fully clear - but implied. I supposed they would need a longer operating slot for a much bigger surgery. I also forgot to remind them they need to repair my umbilical hernia, so I hope they don't forget! 

I left really not feeling a great deal clearer than what I had been told by a research fellow by phone a couple of days ago. It still feels very uncertain and meaning I am not sure how long I will be in hospital - whether for just a short stay for diagnostic procedure - or a longer treatment. It is still hard to know what to do for work, plus we still need to wait for Mr Giordano to be available, as he is rather critical to my case! 

Here are my thoughts: https://youtu.be/jvRXh6_2fSI