All is not bright and shining in the life of Charlotte and the life of an ulcerous colitis sufferer, or rather I prefer UC Warrior!
I started work a few weeks ago (Monday 8th January) as you know, and on the Wednesday as I was on the toilet doing my thing, also emptying my rectum – yes that needs emptying every now and again even though it isn’t connected as it is still living and active, and yes you can feel when it needs emptying. Anyway, I felt my heart sink though my body, out of my feet, through the floor, through the earth and as far as it possibly could sink as I saw the sight of fresh blood. I have not seen this since before surgery, and not felt like this since before surgery. I was in shock, I was petrified, I was worried. I was also strong. Luckily this was in the morning so the telephone times where still open so I rang my GI nurse straight away and got to talk to her and tell her there was blood.
I should really do a little medicine update here too. For over a year I have been complaining about an awful itch in a very inconvenient place and the doctors have told me to use various creams to help against it and eventually I decided – yes I know it took me over a year to do it – but I decided to try a week without the pentasa suppositories to see if it was a side affect. Low and behold the awful itching stopped! So I spoke to my doctor who said we would give another medicine a try and see if it could help changing. So I started taking prednisone suppositories one every evening for two weeks and to then go down to one every other evening for a month and see how it goes. I had got into probably about the second week of every other evening at this point when I rang my nurse.
So after updating the nurse on the blood incident she told me to try taking the pred suppositories every evening again and if the situation hadn’t improved by the following Wednesday I was to call her again. So the week went by, there wasn’t blood all the time but I felt more urges to go empty my rectum, and wasn’t feeling quite right. The following Wednesday came by quite quick it seemed and I still had blood, so I called her again and said it definitely hasn’t got better but it’s not a catastrophe either. She obviously said this wasn’t good still so she now told me to take colifoam every evening as it has more cortison than the pred and once again to call if it gets worse. However I do also have an appointment on the 6th of February for a sigmoidoscopy so we can actually see how it looks. (This appointment was meant to be last Monday when I had a day of smear test and sigmoid planned however not long before I set off for the sigmoid they rang and changed my appointment and surgeon as they wanted me to see someone who specialised in “my area” and therefore it ended up being the 6th instead.)
All I need to do is survive the week, however 2 days in on the colifoam and the inflammation is worse than it has been.
Last night was a night I care never to have again. It took me straight back to pre surgery, sleepless night of running between my bed and the bathroom several times to empty and only seeing blood. I managed to sleep 2 hours this morning and today am filled with anxiety, worry, fear, disappointment, heartache and way too many tired emotions. How will I cope another night like this? I thought this was meant to be over? How did it come to this? I am wishing and hoping that the meds kick in ASAP and help me.
For several days I have felt tired and weak, uncomfortable and filled with an odd sensation similar to pain in my full body and mind. I know it’s only been bad for a couple of days but please can it just get better?! I hope for it to get better and for the sigmoidoscopy to be fine. Maybe this is just a little hiccup as my body is reacting to the stress of working full time again? However I have done nothing but work, the weeks have been work eat and sleep to try and be nice to my body.
Yes I know I am tired and overly emotional at this moment in time, and maybe I’m letting my feelings fly off the rail a bit, but I guess that is part of showing how it is to live with a chronic illness. Not all days are bliss and happy. Yes I am still eternally grateful for Stevie the stoma – who is still doing just perfectly. But I am worried about my rectum. I want to to be healthy, and out of a flare. I want to be able to keep it longer, I want to have options and I want to live my life. I am not ready for more surgery, or any other thoughts of that kind, and now that I have mentioned it and got it off my chest I am going to wipe it clear from my mind and think positively.
So please can you all send me positive thoughts that this inflammation calms down over the next day and responds to the medicine I have right now so I can feel better again! Please! I am grateful for all the positive thoughts sent my way!
Now I am going to try to forget this damn body of mine, crawl under a cover, get a cat to lay on me and try to disappear into the world of Jane Eyre for as long as my eyes have the energy to stay open and read!
I am hoping to share some more positive news next time I check in! For now, have a lovely Sunday everyone!