Hi Everyone! I have not posted in a while, and I just wanted to post this to make an announcement and get support from you all. I have told many people in my life, but you guys relate the most. After having what I thought was pouchitis for 2 years my surgeon discovered I had dilated bowel. I had adhesion removal surgery, and this did not help after they found out my symptoms were not from pouchitis (urgency, pain). During this exploratory surgery they found that my pouch had narrowed and was not where it was supposed to be, and my pouch had connected to my right ovary due to adhesions. This was released. However, I cannot have the narrowing and misplacement of my pouch fixed without a major surgery. My surgeon told me that I have been living a "new normal" of running to the bathroom and having pain for some time now (I had my jpouch surgery in 2010) and he believes he can improve my quality of life. I am only 19. I just started college when my symptoms started to get worse, which lead me to being hospitalized, having scopes, barium enemas, and eventually adhesion surgery and now my pouch reconstuction surgery this april. I am scared, but excited to finally feel better and improve my life for the future. My surgeon told me this is major, and cannot be done laparoscopically. He also told me I will have a temporary ostomy. I would appreciate support from you guys. 

 

Thank you for reading, sorry if there are typos I just wanted to let some fellow j pouchers know what's going on with me. 

Original Post

Wow, sounds like someone finally found a solution...and that is fantastic.

I personally believe that if there is something that can be done (especially at your age) to improve your life and lifestyle than it is worth the risk (but that is me, my opinion etc)...that you shouldn't waste your youth being in pain and ill but out there having fun, enjoying life and doing what kids your age need to do..not stuck in the bathroom doubled over.

So, if you are counting votes, Mad, mine would be to get it fixed and move on with your life...

Good luck no matter what...

Sharon

Wow Mads that's harsh, sorry to hear you need another major op! I'm only 5 months out from take down and i dread the thought of having those sorts of complications (fortunately I'm fairly good so far).

I'm hesitant to provide support because i often say the wing think lol I don't mean this to be patronising in any way but...

I'm 40, i still feel like a teenager, I've worked with my employer seventeen years, before that i did a years traveling and before that i was at college and university! 20 years ago (About your age) That seems like a lifetime ago.  It was before colitis was fully understood, at least in the UK where everything was IBS, s o was ill and in pain, worried to leave the house.... The usual..... Sometimes i wondered if It was worth it. My point is someday you will look back on this moment, this operation and remember and it will be a distant memory.  

Being 20+ is great, you have money, buy a house, travel the world, get your dream job, partner/kids whatever.  again my point is you have a lot to look forward too.  

Your young and healthy so should make a good recovery, and your in a time and place docs can fix your issue!  It's horrible in the short term to need to be cut open again, you will need to be tough and dig deep, but it sounds promising and you don't sound like your in a great place at the moment.  The op itself is a relatively short process, and you already have the after affects (pain and frequency), so your probably not got a lot to lose?

Head down and plough on through!  Wishing you all the best, please keep us updated x

Thank you everyone! Yeah for the longest time I thought i just had pouchitis. Then I lost 25 pounds in a year (I wasn't overweight before, now I am almost underweight), and I had my pouch scoped only to find out I didn't have pouchitis at all, my bowels are just stretched and dilated and not where they're supposed to be ): It's okay though, I am positive for the outcome of my surgery, although it is my surgerons first time doing this surgery. He has shared my case with other surgeons, and has been researching. I am excited to feel better

I had my j-pouch removed and was told then that surgery would be worse than my colonectomy was. She couldn't do it laproscopically either and she spent 5 hours on my adhesions during the 8.5 hour surgery.

I bet your surgery is open for similar reasons. I didn't find it worse as I was mentally prepared for it. We have already had recoveries from similar surgeries. Therefore I bet your recovery will go better than from some of your other surgeries.

Good luck!

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