Reconsidering My J-Pouch

So, I am genuinely considering having my j-pouch removed. This rectal pain I am getting is so debilitating. I feel like for far too long I have allowed my fear of surgery to prevent me from receiving medical treatment. 

I think I took too much Tylenol and it is having such a negative impact on my bowels. I have strained so much in the last 48 hours that I feel like I'm going to go crazy. My stools have been broken and float to the top. There are noticeable streaks of blood and oh my gosh, the amount of bloating and gas has just made the last 24 hours unbearable. 

I feel so foolish for allowing my anxiety and fear to consume me. I am just so worried that my surgeon is going to say no because I told him on the day of the surgery that I wasn't ready.

The Stoma Side: I have an ileostomy and horrific rectal pain (they left my rectum inside). Please do not make a decision without a lot of research. My pain has been so bad for three years I was on opioid pain medication. I have since detoxed, but the pain is constant daily. No doctor has come up with a plan to even address it. I've had blocks, injections, suppositories, and I honestly just feel they should have removed my rectum during surgery. I'm 58 and not a surgical candidate as they've let my health deteriorate. Prayers to you! 

G'day Thestomaside, I had a J-Pouch for 18 years and finally got rid of it 3 years ago. I now have the best ileostomy and got my butt sewn up, and I am now pain-free. I poop into my bag and don't even know it's happening. Life is 100%. Get your Barby Butt orders. Regards, IGGIE

Hello to Both The Stoma Site and HopeFilled

I iterate RESEARCH IS ALL

AND

You in fact know your own body best - listen well to it.

DO NOT LOSE SELF-CONFIDENCE - it is important to maintain Hope - without which we are in a very poor place - but also one needs to override the 'scared' ......

Fine thing to say given my own particular dilemma at present.

Please note, that I personally have never had a J-Pouch

nor have I ever had an internally constructed reservoir within the small intestine - HOWEVER, I spoke to a number of clinics in the States and also managed to speak to a number of patients, including one in particular here in the UK who had BCID. Which may be an option worth considering - BUT I DO NOT KNOW YOUR OWN PARTICULAR CIRCUMSTANCES NOR YOUR INDIVIDUAL BASE DIAGNOSES EITHER - hence please only insist on asking many questions of your Surgeons and it is also my MHO that a second opinion is never to be dismissed if one is unsure.

Please, continue to ask questions - DO YOUR RESEARCH - and listen very carefully to what specific advice is given in regard to your own particular medical history.

Keep in touch with your own inner thoughts and maintain your own role as part of your own medical team - Doctors cannot be held totally responsible - they need Us, their own Patient Subject, to be fully 'in play' for best outcomes all around.

Good luck in your research and keep on with engagement prior to coming to a 'comfortable place' with your surgeon/s prior to signing the informed decision to proceed.

BEST THOUGHTS

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

from the Hills

Jayne

Hello TheStomaSide.

Any updates?

Thanks. Hope you are well.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

I add my own best wishes,

And like Troll has asked... How are you?

... Should you feel able - please update us... for your own input helps others come to a more informed understanding.

Thank you.

Jayne