Hello you lovely lot.
Firstly thank you so much for all the beautiful, supportive and caring messages I have received on social media, email and text. I was feeling very sorry for myself and your words really brightened my day.
So I am back in hospital, I saw Mr Brown in clinic on Tuesday and he recommended I was admitted for some IV antibiotics, some fluids and tests.
I’m still here and also on some pentasa foam and another drug to try and slow down my output. I’m still going to the loo 15+ times a day and its thoroughly exhausting.
My blood tests have actually shown that my inflammatory markers have gone down which is good, but also a little concerning that I’m still feeling crap. I’m waiting to have a pouchogram which is an X-ray test where they fill my pouch with a fluid then X-ray me to see where it goes.
I love that just when you think you’ve had the most embarrassing tests known to man, you then have to crap out X-ray fluid whilst a team takes images of you… The joys of IBD, eh?!
After much discussion with Timm, the kids and Mr Brown, I’ve decided that this pouch is just not for me. It’s been 20 months and 3 bouts of pouchitis, plus so much time feeling exhausted, ill and unable to cope. Going to the loo 15-20 times a day. I have concerns about the amount of drugs I take every day and the effect on my body and liver. And now the issues with my prolapse.
I was so well with my stoma. I know it’s not ideal, but life isn’t ideal now. It’s about quality of life and currently my quality of life isn’t great.
I feel relieved in one way as I just want to be well. But in another way, I’m just done in. I am feeling pretty sorry for myself and wondering when I get a break. I’m so fucking fed up of this illness, it’s taking so much from me. It causes so much stress and makes life difficult for my family and friends.
Poor old Timm is dealing with the kids, work and home life as well as my mental rantings and emotional breakdowns. I’m so bothered about being a burden to him that I’m actually being MORE of a burden by stressing about it.
He brought the kids to see me which brightened my mood. I spoke to them about the stoma and they immediately said “do it mum!” I asked why and they said that when I had my bag, I was really well and we could do everything normally. They said my pouch means I’m always poorly and sick in bed. This makes me so sad. But firms my belief that this pouch isn’t right for me.
I know it changes some people’s lives and is perfect for some. I don’t want to put anyone off Jpouch surgery because of my experience. As much as its not good for me, I am glad I tried as otherwise I would have always wondered ‘what if’.