Surgery vs. QOL

IMHO, it is better to go through the surgery now.  Your chance of getting colon cancer is higher when you have UC.  My husband had it for 5 years and most of the time, he was never in remission with it.  His last straw was being on steroids, which made him feel worse.

It has been 24 years for him with the J-pouch.  He hasn't looked back.

Have the surgery;  get the J pouch,

I say this mainly due to my own experience and what I know now which I didn't know then.

Also, because you're currently visiting the washroom upto 8 times a day, your restrictive diet, pain, anxiety and how your illness is currently impacting upon your life.

In between my first flare up, I led a totally normal life; no medication or diet restrictions.

If I took my medication as directed, then my second flare up may have never occurred or could of at least been delayed; after all, I acheived years of being flare up free and without meds.

At the time, the implications of such an illness was never explained or maybe I was too carefree to listen.

It was only after my second flare up, did the implications of such a condition wreck my life.

It was during the second flare up when my Consultant suggested the removal of my colon; no mention of a J pouch or reconnective surgery; just removal and colostomy bag; the thought of having to use a colostomy bag was the last thing I wanted, although my reluctance, which I didn't know then, was a huge mistake.

I recovered; well, well enough to leave hospital but I was hiding my true condition from Doctors and those around me, pretending I was much better than I really was.

I struggled, eating and vomiting in secret; worse still, I was also vomiting at the same time as having bowel movements (BMs), pure hell; and to think, I endured this rather than opt for surgery and use a colostomy bag.

I struggled, enduriing the very same anxieties as yourself; not going out or visiting places through fear of needing the toilet or not getting to the toilet in time. When I did go out, I would be constantly using the toilet or had to leave early; yeah, there was many accidents, which certainly wasn't very pleasant, especially during my sleep.

During my third flare up, I was forced to have my bowel removed; I had no choice; either death or wake up from surgery with a Stoma.

I hated the colostomy bag, but it gave me my life back.

Yeah, initially, I still worried about the use of toilets when out; on occasions I experienced leakage around the Stoma but it was nothing compared to the anxiety, misery and restrictions I endured when fighting against a colostomy bag, pretending I was well, when in fact, I wasn't.....

Like I said earlier. what I know now, which I didn't know then.

I should have had my colon removed and a Stoma created years earlier when my Consultant first suggested it, rather than endure so much misery.

After years with a more or less trouble free Stoma, without flare ups and medication, other than Imodium; I had a j pouch created

Deciding to have the surgery, is the biggest decision I've ever made; my only regret. was not opting for such a procedure years earlier.  

After the creation of my J pouch, I experienced a few complications, which were difficult, uncomfortable and awkward at the time but was nothing like what I endured with UC, especially during a flare up.

Looking back; yeah, all what I've endured to reach to where I am today, yeah, it was all worth it and yeah, I'll do it all over again to achieve such an outcome.

If the Remicade were working brilliantly then putting off the surgery could be a great choice. It sounds like it’s not working very well, though, so a J-pouch is likely to feel better, though getting there is a journey. Do be aware that 4-6 bathroom visits would be typical for a well-functioning J-pouch. I suggest you choose your surgeon carefully.

As Scott says; 4 to 6 bathroom visits per day would be typical of a successful J pouch.

With a J pouch, such an exent of bathroom visits can't be compared to what we endured during a UC flare up; from my own experience, there's no comparisons whatsoever.

Within 6 months of complete recovery from my final surgery, surgery which removed the temporary loop ileostomy, colostomy bag and reconnected my bowel, I stopped worrying about toilet visits.

Yeah, on paper, 4 to 6 or maybe as many as 8 per day sounds daunting but without the urgency, anxiety and symptoms associated with a UC flare up, there's no comparisons.

Currently, in between bathroom visits, I can go for a good few hours before I need to use the bathroom again, I could never do this before I had the J pouch, even with the stoma, the bag had to be changed or emptied every two to three hours, which wasn't ideal but was better than running to the bathroom every 20 minutes..

I kept my colon for as long as I could until having it out was no longer a choice but a necessity.  Surgery is something you can do at any time so I would keep your colon as long as you can and as long as you are able to achieve remission and a decent quality of life with anything other than prednisone.  If I got to the point where I had to stay on prednisone all the time - then I'd have the surgery to avoid the permanent damage to my entire body that prednisone would start to do.