J-pouch, cuffitis, fistula and coping

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

Can your specialist write you a medical excuse from your job? If not can they tell your GP about your problems?

I'm sorry you are going through all of this. To have vaginal problems along with a sick j-pouch has got to double the need to be off of work.

I eventually had to have my j-pouch removed but didn't have the vaginal complication. I too had a difficult time with the ileostomy in-between my j-pouch surgeries. My j-pouch problems got so bad I thought even going back to the bag would be better. Luckily a permanent ileostomy was much better than the temporary one was. You might be able to be diverted to an ileostomy while they try to get everything else to heal. I was diverted first and my j-pouch didn't behave so I had the surgery to remove it. I feel much better. You might want to read some posts in the ostomy section in here. There are many of us posting there. Getting a stoma isn't the end of the world.

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