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Since my original single-stage operation in May, subsequent loop ileostomy due to sepsis and final take down in August I have been positive and had no regrets. After 33 years of UC and the last few years of related sacro-ileitis which left me hardly able to move, the removal of my colon and rectum was so liberating with the awful pain and stiffness had gone. The fact that my quality of life had improved so much made me very accepting and delighted with my new J-Pouch, with all it's unpleasant aspects.

Whilst it is great that my memory has faded and dulled the very unpleasant 2 months I spent in hospital, I am also, for the first time, starting to feel sorry for myself and like I have hit a brick wall. I have been fighting and staying positive for so long, I just have reached the bottom of my reserves, which I am sure is not uncommon.

My pouch adaption and improvement seem to have plateauxed and because I am having partial obstructions, I feel I am going backwards.

I am certain is because I am forgetting just how bad my situation was pre-surgery. I really wish I had kept a diary or written down how bad things were for me then. I know I am definately far better off now, but would be good to be able to remind myself now and then.

So just a suggestion for anyone considering surgery, perhaps keep a record beforehand which may be good to look back on later.

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Hi Kiwi,
I am so happy to hear that you had such great improvements post op...And know that the sudden end to those improvements and the onset of complications can send you into PTSD...you and your body are finally catching up with each other...your brain is processing everything that has happened to you and you are starting to spiral downward...it is very normal...now that the worst is over you have time to stop and think and it is a very difficult process...you might wish to read some of your old posts on this site if you posted pre-op, copy and past them into your computer so keep as a souvenir of the pre-op hell that your were living...also, if you are having a lot of partial blockages you might need to alter your diet a bit and remove the chunky fiberous stuff...and do some hot oil massages on your abdomen daily...I have found that it helps me...progress is no longer going to be measured in leaps and bounds but in tiny little baby steps but as long as there is less pain and more progress, Who is complaining? Be healthy and take good care of yourself...And start that journal now..
Sharon
skn69
Thanks for your heartening words Sharon. I think you are so right. It is almost moving from the fighting just to survive phase into the acceptance phase. Also like when you go on a holiday after a hard years work and your body just gives in and you get a bug or a cold without fail. I have got back to my baby diet, think a lot of it is the amount of fibre I eat and making sure it is totally chewed. Thanks again. Caroline
K
You are not alone in feeling sorry for your self as it has a place in the healing process. I gave up so much of my freedom and career because of UC. Three years after getting my J-pouch Im still trying to find a happy medium. But one thing I know for sure is that my worst days that I now face are nothing like I faced before, so with that as my shield I move forward. It may never get any better but it certainly could not be any worse.
MH

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