Back in hospital
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?!
But anyway, I have news.
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.
Mr Brown has put me on the list for January and so 2016 will be a new start with a new stoma.
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’.
So there we go. I shall update soon and as always you can find me on Facebook Instagram and Twitter.
Sam
Oh Sam it seems 2015 was your bad IBD year, but by what you’ve said it sounds like the right choice to me xx
Stoma’s aren’t ideal like you said but they certainly help you to live a normal life as possible. An by the sound of your kids there a real credit to you an Tim and remember how much better you were last time which I’m sure is a comfort to you. Xxxx
It’s time to start thinking of a stoma name again to welcome it back into the family lol. Xxxx ( mines called a Bobi )
Best wishes and all my love, your a fighter an make me proud to know you! Xxxxxxxxxxxxx
Oh Sam, I’m so sorry for all you’ve been going through. You gave it your best shot….you were right to give the Jpouch a try. At your age, how could you not? So, it’s not for you and you’ll go back to a stoma.
Don’t feel defeated! You have suffered enough!
Sam…you rocked your stoma with beauty and confidence!! I can’t wait till you’re feeling better and you have Timm do an amazing photo shoot!! You let so many of us feel that our stomas can be sexy!! ?
I am sending you great, big, tight, squeezy, hugs. Remember…we are warriors!
xox
Sorry to hear the pouch didn’t work out for you Sam. I had my pouch surgery in August 2013 (after having a temporary stoma for around a year due to colitis) and had a terrible time with it too. My problem was constant colitis in my rectal cuff and in 2014 I had a horrible year of steroids and immunosuppressants which lead to me also making the tough decision around the end of last year to have it removed.
Although I have a good friend whose life has returned completely to normal since his j-pouch surgery, I accepted it doesn’t work for everyone and I just wanted to get on with my life again. I also still recommend that people give it a go, and don’t want my story to put anyone off; it’s certainly worth the risk!
I had my proctocolectomy in January of this year, was back at work in March, and (after being told my surgeon it shouldn’t stop me doing anything) have since become somewhat of a fitness freak. I’d never run anywhere in my life before about June of this year, but now I’m part of my local running club, run 10-15kms with them twice a week and try to fit in at least one other run a week. I ran the local 10k in October and got a time of 47:50 and now I’m training for the Milton Keynes half marathon in March!
So to say my life has improved somewhat since then would be a total understatement! I’m now fitter, healthier and happier than I’ve ever been in my life. I’m so proud of my stoma and what it enables me to do. I regularly read your blog, so I know that you know that this will be the case for you too. Just one more round of surgery and hospital time for you to go through now and then it will all be over for ever, and you can start living life to the full again. Good luck and best wishes! You’re an inspiration to so many of us.
Josh
Hi Sam I feel very sad to hear that things are not getting better for you and your back in the hospital after all the work pain and suffering you got through to get that J pouch and not it’s going to get remove don’t feel bad you did what you thought was the best decision for you at that time there’s no regrets on past decision we do the best that we can with the information available at that time .
There was no way you could have known what was going to happened now see it as an education thing lots of good came out lots of people are listening to you they will be more aware of complication you can get with the J pouch in life it’s important to aim high it’s not about if you get there it’s about the journey to get there and everything positive you will gain if your able to get something positive out of an somewhat bad experience your winning .
I’m a much more sensitive caring an much more due to having UC I don’t want to change anything
Good luck with the surgery in January in the meanwhile let yourself be pampered back to health
Your beautiful no matter what happens
Donald from Canada
Dear Sam
Get well Sam and I feel that you are making the right decision to have a stoma again. There is no good going through all this misery. I don’t know if you have read my emails but I had an iliostomy which was awful and only for a short time as they managed to save my bottom and I expected to wake up with a stoma on the left side following rectal cancer, a polyp which had turned cancerous after so many years and my GP telling me just a little pile until I became very poorly. I can go to the toilet normally now but not without lots of problems and anxiety and fears and exhaustion and feel like you maybe to have the stoma would have been a better option. The toilet rules my life and I can’t lead a normal life and I feel cross with that Dr when I gained courage to tell her told me it was just a little pile. I was very ignorant and didn’t know about polyps even though I had in my womb I didn’t know different in the colon an rectum. So I suffer now. Anyway you rest and get well Sam. This is definitely the right thing for you to do. xxx
Ah well. Can’t say you didn’t give it a try Sam? I’d love to know the % of j-pouches that do work in the UK.
Best of luck with the re-reversal.. thingy.
Nothing to add to all the other comments, except best of luck, this should be onwards and upwards from now on. Those kids of yours are amazing!! Best wishes as always x x