Hospital trips and back to the GP.

I really want things to be going well, but they are not!  At the weekend I became overwhelmed and just completely exhausted by everything.  Going to the toilet remains very painful and also very difficult.  I am having real trouble emptying my pouch.  I have been feeling exhausted and generally unwell, I have been nauseous and vomited which I suspect was from the pain.  I have suspected a fissure for a while and yesterday I managed to see a colorectal surgeon who confirmed this.  He also checked to see if the last dilation had worked, which it has.  So I suppose that is good but also means that I still have problems, he mentioned pouch dysfunction but I have to speak to my team about that!  Unfortunately my team, consultant and registrar and SHO are all on leave!! which leaves no one to really help me for a week! hmm I really cried when they said that, I pleaded that they must help me and that the pain was unbearable.  As I am allergic to some painkillers and they don't want me to take codiene I was only left with paracetamol.  The doctor was not allowed to prescribe me other pain killers because of hospital policy.  So my option was to stay in hospital for a week while I wait for the team to come back, how depressing is that.  Fortunately the nurse told me the GP would be able to prescribe me a patch or oramorph.   
We got back from the hospital and I was so lucky to get an appointment with the GP.  I explained the situation to her and she was very understanding and worked out a strategy to get on top of my pain management.  This actually bought me to tears as well, because I was relieved to be getting pain relief.  She also wants to see me in two days to make sure I'm ok and to make sure I will be able to cope over the weekend.  I am very lucky to have some lovely people who are concerned and want to help me.  


So I am feeling a lot better about the situation, it feels more manageable anyway.  I have a cream to treat the fissure and pain medication to get me through it.  Last night I only needed the toilet once, which was fantastic as I had been going every three hours day and night.  After feeling very depressed and overwhelmed by this situation today I feel a lot stronger.  I keep reminding myself that God wouldn't give me anything I couldn't handle.

6 Weeks Post Op

I went to my six weeks post op appointment today, I was really hoping to see my surgeon and get on top of things, but unfortunately I saw a doctor who has never seen me before.  I nearly cried as I realised he didn't have a clue, who I was, my situation and I really felt he wasn't up for the job!! I kept explaining to him that I feel I have fissures internally.  He told me I didn't have any strictures of the anastomosis!!! Who are you trying to kid!!!  Hmmm...thats why every two weeks since my surgery I have been seen by my surgeon and had to have dilation!!  He doesn't deal with J-pouches, and I felt that awful feeling of being desperate for someone to help me but it as all falling on deaf ears!!  He did an exam, which didn't achieve much as he didn't reach my stricture..what was the point!  And concluded that he would go and speak to the Professor....he left the room and I burst into tears.  He came back with the idea that I should use St Mark's Anal dilators, slowly going up in sizes.  Hmmm I thought I didn't have a stricture!  He told me to have more baths and that would help me also.  Well, thanks very much.  I have another appointment in six weeks time, so I will see how I go.  I really hope that I will feel a lot different in six weeks time, because I really can't cope with this for much longer.  I really wish I still had my stoma :(

4 weeks Post Takedown

Why am I putting myself through this?  It is really tough to justify this pain because, I walked into this surgery happy and healthy and I have not benefited from it.  I keep telling myself, short term pain for long term gain!  but I think I'm kidding myself.


I had to call up the surgeons office again because I was really struggling and I could feel the stricture had narrowed again, making it difficult to empty my pouch.  I was so lucky that my lovely doctor said he would see me in a side room on the ward as he was on call!! wow..I am blessed.  It was lovely to see my nurse again who is always so sweet to me.  As we waited, I noticed she was holding a tube of KY jelly, this sent me into a fit of giggles and the doctor walked up to me smiling.  I said to him, she's got the KY we are good to go!!  Once in the room I explained how I wasn't coping, the pain I was experiencing and how I really wasn't eating properly and was losing weight.  He did an internal examination and said that the stricture was even worse than last time, he did digital dilation on the stricture, the pain of this was IMMENSE!  The nurse came over and held my hand.  The plan was that this would ease my symptoms and I may or may not need it again.  He also wanted me to start eating better, with more fibre and salad....green things!!! eeek... foods I have basically avoided like the plague and to be honest have a huge phobia of.  This would bulk my stool and also help me to empty easier.  So I headed for the shops and stocked up on salads and fruit, wholemeal bread and bran flakes! 


I noticed that after this last dilation the rectal pressure and rectal spasms has definitely worsened but it has become easier to empty my pouch.  After a few days I decided that I needed some time at home and went to my mums house.  I needed cheering up and a change of scene.  I had such a lovely time with my family, it really helped me and took my mind off things.  Reminding me that I have such a wonderful family and supportive partner who all want me to be well and happy.  So I strive forwards, taking each day as it comes, I keep praying and mindful that "this too, shall pass".


L x