Yes – so as the title states, it has not been a relaxing summer for me at all. I am now back at university to begin my 3rd and final year. I will continue from where my last post ended…
A short time after my last post I had 2 days – with a gap of feeling fine in-between – of sudden onset shaking and high temperatures. The first episode began when I was in the cinema with my 2 young nieces and my mum. I began feeling really cold and had restless achy legs. It became so bad that I had to leave halfway through the film and go to the car to put the heating on! I then had a night of high temperatures but by the next day I felt fine. Then 2 days later the exact same thing happened! Luckily I was seeing my consultant that day so he saw me having an episode. My consultant believed it was a reaction to the increased dose of Humira. However blood tests revealed that I did have a infection so we’re not 100% sure what was going on. Anyway I was told to decrease Humira. Then…
I went out for a lunch meal with my friend and that evening at home I had an uncomfortable tummy which became increasingly worse throughout the following day until it got so bad I ended being taken to A+E again by my parents – being sick in the car – great! Typically it had to be a Saturday night so we arrived at 7 p.m. and I was not taken to a ward until 6 a.m.! I was in so much pain and nothing seemed to help until I had I.V. Paracetamol. I had to wait until Monday to see my consultant and he explained that from the X-ray, I had an obstruction due to the same stricture in my Ileum. He said that surgery would have to happen. I then mentally prepared myself and tried to accept that I would be having surgery soon. But…
Then the surgeon came by and he was hesitant to operate until he was sure the Humira had been given long enough to work. After a lot of discussions it was decided by me, that I would go on a liquid diet for a month and give Humira one last month to work. In was done on the agreement with my consultant that I would have surgery if it happened again.
It has now been 4 weeks on the Modulen diet! I am due to see my consultant next week to decide if food can be reintroduced and what the next plan will be. I have had a tough summer as I have either been in hospital or recovering at home not eating. I think I just have to take it week by week, particularly at University. Most students worry that they might not make graduation due to a failed essay but for me, I have at the back of my mind that if my tummy decides to obstruct again or flare-up again, I will have to pull out of my course. If that happens, I will just accept it. ‘Everything happens for a reason’.
Being back at University is tough as all my friends are eating and preparing food around me or planning meals out and I sit there with my milkshake! But it is OK – it could be worse. At least this liquid diet is better than past ones I have been on!
I did manage to have a lovely few days in Devon with my mum, dad and brother. I was swimming in the sea everyday and went coasteering with my brother! It was a lovely break.
Neville (stoma) is being a good boy! One advantage of this diet is that I only have to irrigate every other day as there is less waste to come out. I did have an accident the other week before I began irrigating again. I was in the car with my parents and suddenly Nev was active and it was beginning to seep under the bag..! So a dash into a supermarket to change it became a entire outfit change! New trousers and pants..! Did not feel great after that.
Anyway – I must go and make my ‘food’! Hope you are all well. Any questions or if you just want a chat – email – firstname.lastname@example.org