Hi Everyone,
Im hoping someone can help me out here with a bit of advice as I’m not coping too well physically and mentally!
I’m 29 years old, diagnosed UC at the age of 11, got very sick with it and had a total collectamy age 22 and take down surgery 6-12 months after so I’ve now been living with a pouch around 7 years
now although on a whole life has been much better than living with Uc over the last couple of years I’ve struggled with pouchitis, constant urgency soreness tiredness etc. Ive work 40 hours a week for 5 years, in the outdoors with a very physical job and I’ve coped! Although always tired
I don’t get out much though due to anxiety of my pouch and I was even worse with my temp colostomy bag in fear of it coming unstuck which it did a few times in the short time I had it and also suffered with very sore skin and depression whilst I had it
ive now been off since just before Christmas initially for stress (due to work) but this escalated to my pouch playing up worse than what I normally could cope day to day with. I have urgency and pain in my left hand side and also incontincence, the hospital rushed me in for investigations and 2 days ago I was taken in for examination under GA to find narrowing of some of the scar tissue, inflamed pouch, cuffitis and a vaginal fistula. They will be getting me in for a mri scan in the next few weeks but I still have this pain in my left hand side and after my inveatigations I’m very sore and finding I’m getting stool and gas leakage much worse out of my vagina
im meant to be back to work tomorrow and literally don’t see how I can but feel that my GP doctors don’t really understand.
I literally just just want to cry, I’ve been finding over time I’m getting more and more tired with working and struggling day to day to do simple tasks as I’m so tired and sore I’ve been trying so hard to get on with it and ‘be normal’ it’s all now got on top of me
has anyone found that they haven’t been able to work? And how do people cope financially it’s all really taking its toll on me as I’m sure it does with many others. Is there any financial help or benifits for us? Im usually a very positive person but it’s all got a bit much. I’m in the uk by the way.
any advice appreciated
Thanks
X
