I've been meaning to post something for a while about
my experience with surgery but I have to do it in chunks because it's long and probably boring. Here it goes...
I am 9 weeks out from my 3rd step and I am doing way better than I was with UC. I preface that by stating that I am a worrier and I could never live comfortably knowing a flare up was imminent. I couldn’t relax knowing I had a chronic illness that required top-of-the-line medical insurance and thousands of dollars in infusions, doctors appointments and Rx medication each month. I am not the type of person who could live comfortably with those limitations – I don’t believe there exists a person who is okay with all of that, we become unaffected with it over years of battling. It starts small and expands into a huge, invasive, embarrassing, unpredictable lump of baggage you carry around and it affects you negatively in every aspect of your life.
I began this journey knowing nothing about
chronic illness, I never had issues that would have led me to believe I would end up with a chronic illness, and definitely nothing to clue me into thinking I might have an incurable GI illness at some point in my life. Prior to developing IBD, I did not know it existed. I was always the person who could eat whatever, whenever, without consequence. The weird part, is that early on, I read about
surgery and I knew it would happen to me. Probably my negativity that led me to believe it, but in the case of it actually happening, was it negativity or reality? Surgery was my ultimate fear. At the same time, I had read stories of what an incredibly life-changing and positive experience it could be, along with the fear, there was hope.
Over the years, I have read so much about
people having 2 step j-pouch procedures. I always imagined that whatever happened, a 2 step would be the worst case scenario. Unfortunately, I wasn’t the best candidate for 2 steps. I had been using steroids for quite a while, and I was carrying extra weight, my intestines weren’t pliable.
Prior to deciding surgery was my best option, I had tried most of the medical options available. My GI was willing to continue treating me but I could tell she wasn’t thrilled with the idea, especially after I had septic shock that left me nearly unconscious for weeks a few months earlier due to a compromised immune system from UC medications. I could feel a sigh of relief in my GI’s voice when I said I wanted to have surgery. I was out of options. I ran through everything very quickly at the end. Biologics went in and it was as if I hadn’t taken any medication. No response at all – not even 1 moment of relief, not a single reduction of symptoms of any type. 15k disappeared into thin air.
To break down the surgery. Step 1 was the worst for me. For people who are not familiar with the process, in a 3 step, step 1 is a colectomy. Colectomy is where they remove the colon. After this step, you have your rectum. Many people continue to have UC in the rectum after this and they suffer with symptoms. Often they pass mucus and blood, have urgency or tenesmus, or all of these. I was pretty lucky. My rectum minus my colon was fairly well behaved. The scariest part of this, especially prior to it happening, is waking up with a stoma. I remember, before surgery, I met with my ostomy nurse and I cried. The ostomy bag was the scariest thing imaginable. To compound the nerves, I was stuck in a bed with an ostomy bag that I didn’t know how to empty and I was reliant on nurses to take care of me. As an independent person, this drove me nuts. I wanted to get up as soon as possible and start handling things on my own. I had a drain tube in my butt. It was excruciatingly uncomfortable. I would say, for me, that tube was the worst of the worst. I was stuck in the hospital for 5 days because of that tube. I couldn’t see coming home and having to go back to get it removed a day later. It was painful, even with a pain pump and lidocaine, I wanted this tube out. I was probably being a bit of a baby in all honesty, other people have this tube and don’t complain nearly as much. I think part of the problem was that I was sick going into it, I was weak, and I didn’t know what to expect so far as the level of pain involved. I am very sensitive to pain medication, I was itchy and breaking out in a rash, and I was using pain meds minimally. I lost my cool a few times during that hospital stay. I was emotionally unstable and uncomfortable. The tube wouldn’t come out until the day I left. Now I understand the saying “stick up the ass”. Have that for a few days and see how you feel…
Things changed once I got home. It was amazing how quickly I rebounded. I had a home health nurse who helped me change my pouch every 3-4 days. I believe I had 5 meetings with her. By the 3rd meeting, I was comfortable changing on my own and I didn’t need a nurse. I had talked to a lot of my HW friends from here and the ostomy board, EvaLou and embersglow, were my rocks. They helped me learn about
the different products. I tried EVERYTHING. At times I felt like I was a member of a secret society. Having the end ileostomy wasn’t so bad. Everything I imagined was wrong. There was no odor, unless you were emptying, and even then, there are products to help with that. It’s a big change but it’s easier to get used to than you would imagine. Once you find products you like, you can usually get 6 or 7 days wear time out of a wafer. I would change the pouch a lot – every other day or so. My insurance covered the products 100%. I didn’t have to spend a penny out of pocket. I even went swimming and to the beach with my ileo. I wore high waisted bottoms, no one was the wiser. I could empty when and where I wanted and I could conceal the pouch easily. I was finally free of UC, free of worrying about
where the toilet was, free of worrying about
accidents. The only leak I ever had with my end ileo was at home and it was while I was working with the nurse, trying to find the right products for me. I didn’t need rings or any extra creams or pastes, just a convex wafer and a pouch.
more to come...
Co-moderator: Ulcerative ColitisDiagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!