Wow! What a difference a month makes! Four weeks ago today I had my surgery, I had my large bowel removed in a subtotal colectomy and an end ileostomy formed.
Four weeks ago about now I was being taken to the HDU, I was covered in wires, drips and tubes. It was a scary day and a month on I think I’m still a bit in shock that it actually happened.
In the past four weeks there’s been ups and downs, good days and bad. On the good days I’m thankful that I no longer have ulcerative colitis, that Im not on any medication and that my life can begin again. On bad days I feel sorry for myself. I feel angry that this had to happen to me and sad that I have this bloody bag on me all the time.
The weekend was fantastic. Definitely good days. On Saturday my best friends Caroline and Jamie were round and we had a work day planning all the exciting things we are doing in the next year with our arts group Responsible Fishing – it felt great to be getting back to some work and then we ended the evening with food, wine, a fire and a film.
Sunday we went to my mums for dinner, my friends, Aunty and cousins joined us. Mum made her amazing curries and we had a lovely day eating, drinking and laughing. It’s my first curry since the op, so I was terrified it was going to react badly with my stoma. My mum is from Aizawl, near India and so family curry days are a big part of our lives. I can report that my stoma likes beef curry, chicken biryani and dahl!!!
My friend Corinne (aka Motherscuffer) had her baby this weekend which was huge cause for celebration! I haven’t met her newest son Arthur yet but I can’t wait to see him for a squeeze!!!
Yesterday I had trouble with my bag leaking. And then when I was trying to change it, it kept ‘going off’. There’s no muscle in my stoma and so I have no control over when output (poo to you and me) comes out. Yesterday it was bad timing on when I changed it and EVERY time I cleaned up, put on the powder and barrier and then tried to put a bag on it ‘went off’. It was really frustrating and took me 45 minutes ending in me crying and feeling very down.
I didn’t sleep well last night. I’m off the steroids and no longer taking the sleeping tablets. But it was the fear off leaking in bed that kept me up. Timm told me it was fine, to sleep and if anything happened he’d deal with it all. He is fab and not at all squeamish with the whole thing which really helps but every time I was about to drop off, I’d imagine I was leaking and wake up. Very frustrating as I was telling myself to sleep, that it probably wouldn’t lean but if it did, it would be all ok,but my mind just wouldn’t accept that!
I’ve seen my stoma nurse today who is helping me try different bags to get my confidence back up and to get a bag that works for me. The problem is that my stoma is very close to both my belly button and my scar, I also have changes to my skin where the scars are pulling it inwards so I have dips in my stomach.
These things mean that it’s quite awkward to fit the base plate to my skin and that I have to fill the dips with paste. This means that changing my bag is stressful and time consuming. It’s really frustrating and makes me worry about how Ill get on with it in the coming months. I’m worried about working, I run a photography company with Timm and I worry that all the pressure is on him. I just hope things will get easier.
I’m recovering really well though. My wound which is around 6 inches long that 4 weeks ago was opened up and allowed surgeons to have a good rummage around is closed and just looks like a red line with dots around it (the staples marks!) My stoma is healing really well. I’m off ALL meds which just feels amazing!! And I’m starting to get my strength and stamina back.
I still have to take it really easy, one task can mean an hours nap but its great to be back on my feet and to gain back a little independence. I still rely on Timm a lot but its nice to be able to make tea for the kids now and again or to do little things around the house and garden.
We have a few large apple trees in the garden and tonight I was out with Timm collecting all the wind falls. I did have to sit on the ground but it was fab to be getting out and doing. We have soooooo many apples so were planning a lot if apple based dishes and more excitingly cider!!!
My body has healed so well over the past four weeks and I know it’s going to get better each day now. Though I sometimes feel emotional, angry and upset I keep trying to stay positive, be mindful of all the good things in my life and look to the future.
Because four weeks ago I was cured of ulcerative colitis, the disease that rules my life for ten years. And so for that I am truly grateful.
Love Sam xx