The surgery was scary just b/c it is a major decision and situation...you're having organs removed and totally changing your digestive system!!! : )
You know, after experiencing the UC pain, staph infections, open wounds, etc. the surgery was not all that bad. I had some pretty pitiful pain management by my surgeon, so make sure you are well cared for in that area. : )
Believe it or not, I opted to surpass the j-pouch and go for the permanent ileo. Why you may ask, as I am 28 and have many life experiences still go...the j-pouch is wonderful for many, but I just was tired of taking chances that didn't pan out. Each medication I tried was supposed to be 'the one' that put me in remission. Nothing worked, so my heart was broken with each failure. I was tired of the the urgency, lack of control, and the obsession of knowing what a bathroom was at all times. The j-pouch is amazing for many people, but I really do not feel that having a bm is that important, especially after the two year flare and trauma I endured b/c of it. I want complete and total control. Also, after speaking with my surgeon about the statistics of this and that regarding the j-pouch, future surgeries, complications, pregnancies, etc., I was 100% sold on my permanent ileo. I've been able to focus on my life, my family, my goals and ambitions, and never have I looked back. I'm able to focus more intently on the moment as well. Before I spent much of my energy and focus on hiding my pain and misery, but now I can fully live each moment and have no distractions. It's absolutely amazing. The ileo to me is not that bad at all, it's a very small price to pay to be healthy and have my life back. Prior to the surgery I had three staph infections that all required surgery and open wound care, so that kind of forced me to be humble regarding my body image...not to mention my extreme weight gain and face change due to the 40mg of prednisone. I was HUGE!!! Of course prednisone allows you gain the weight, but not to lose it. So, now I'm eating healthy and exercising! Both things I could not do while sick. I could not eat my favorite health foods b/c of the seeds, skins, nutrients, etc. and exercising was ridiculously painful! My abdomin was constantly hurting and if I did anything strenuous I was in tears.
So, I know the life of pancolitis, zero energy, constant pain and the depression of watching your life just slip away and spend 90% of your day in the bathroom. It's no way to live and I really had no other choice once the Remicaid failed. To be honest, the first infusion did make some difference. I had my 2nd eight weeks later and it did almost nothing. The third was six weeks later, the fourth was four weeks later and the fifth was about four weeks after the fourth and was just to get me to my surgery date...but the last two did absolutely nothing. They day of the infusions I always felt like Super Woman, but come the next morning I was back to the way I was before.
Oh, and the best thing of being UC free? I'm a full time Mommy. I just posted an update on the ostomy board b/c I'm too busy to be fully active with the HealingWell family. : ) I'm just with one client right now and putting off paperwork, but once I'm fully booked and back in school I simply won't have time to chit chat. : )
If you have any questions or would like to speak privately you are more than welcome to email me. : )
: ) Robin
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
"Your mind is like a parachute, it only works when it is open." -Unknown