Today is day 14 post-surgery. I have ZERO regrets. The UC is GONE!
What is a Colectomy and Ileostomy?
A quick summary of the surgery: I had a laparoscopic total colectomy and ileostomy. Simply put, this means they made small incisions to detach my large intestines, removed the entire thing through an incision below my belly button and then brought the end of my small intestines through a whole in my abdomen where a bag is attached to collect stool. If followed up with the J Pouch procedure, the bag is temporary.
When I first realized, I would need this surgery and an ileostomy (the poop bag portion), it was difficult to process. It felt a little bit like the end of the world. I’m 29 years old. I got married in February. I want children and those darling pregnancy stomach shots. Pooping in a bag wasn’t in my plans; however, since waking up from the surgery, I’ve had one moment where I felt overwhelmed with the bag – just one single moment. I can’t express how grateful I am for modern medicine, for surgeons, and that this surgery was an option for me. I don’t feel regret; I feel better and my gratitude for that outweighs the bag by far. My husband has put my health first, and has been so open and understanding during this process, I’ve not once felt shame or embarrassment about the bag. He’s let me talk non-stop, open and honestly about everything since the surgery (and prior to). His support means so much to me.
I may be in the honeymoon phase with my bag, but I’m kind of in love with it. Life was so much better immediately after surgery than prior, and each day got exponentially better up until about… post-surgery day 10. On Day 10, fatigue finally hit and since then I’ve been taking it easy and allowing my body to heal.
In addition to the bag, my scars are minimal. In total, there are five ½ inch incisions (one was for a drain tube) and a 3-inch scar about 5 inches below my belly button from where the colon was removed. They are already healing above and beyond what I would have expected at this point. You can see a close-up photo of my stomach here that was take on Day 8 that includes incisions and bag – this is mainly to give someone who may need this surgery an idea of what to expect. There is one small ½ inch incision hidden on my left side below the bag.
The Hospital Stay
I had my surgery on Wednesday, June 27 and came home from the hospital on Monday, July 2 – post-op day 5. The estimated hospital stay was 3-7 days, so I was right on track.
There were several “hurdles” that had to be passed prior to discharge. My bladder needed to wake-up and work on its own and my pain had to be manageable on medications that were not given via IV.
The worst parts about my recovery in the hospital were the complications not even specific to the surgery, specifically my bladder. The first 24 hours were filled with so many bladder issues! In order to not make this post extremely long, if you’d like to read about how fun catheters are (sarcasm), you can read about my experience here.
One of my fears going into surgery was waking up for the first time afterward. Don’t get me wrong, I wanted to wake up after surgery! But with no prior surgeries, I had no expectations as far as what the sensation would be like. Would I be in pain? What would the pain feel like? Would I remember anything? They say when woken up after anesthesia, you don’t remember it or conversations you had with people. Would I bare my soul? Say ridiculous things? Share deep secrets in a drug induced lala land? My memory of the first day is definitely foggy after the fact, but I remember feeling clear at the time and mentally intact.
I was in a great mood after surgery. The pain was exactly what they had warned me – I felt like I had just had an extreme “ab day” work-out. I was given a button for Dilaudid that made everything very bearable, but they only left me with the button overnight and switched me to IV pain meds first thing in the AM. They removed the catheter, took me off of IV fluids, and had me in a chair first thing the following day too. I began walking the hospital halls that afternoon. Day 1 wouldn’t have been so terrible if it weren’t for the issues caused by the catheter, again see here for that story.
I was kept on a liquid diet for 1 day, but cleared for solid foods on Day 2. I had no issues with nausea, vomiting, or lack of appetite. My sister came in town to visit and brought gluten-free pancakes and bacon for breakfast on Day 2 and I had no issues with solid food.
My family was amazing during this entire process. My husband and my mom took turns staying with me 24/7 to be my advocate and make sure I had the help I needed. It was difficult to move at first, and I was not allowed to lift/pull things, so having the help was really beneficial. I had visitors which helped the time pass more quickly. I can honestly say that I was not bored during my 5-day stay in the hospital.
In addition to my family, the hospital staff was outstanding. Apart from one nurse, every person I interacted with – from the nurses to the housekeeping staff – was friendly and helpful. I ended up with the same day and night nurse for 3 consecutive days which was really beneficial. It helped to not switch to a new person every day, but have a familiar face who was knowledgeable about my situation. Part of me was sad to leave them.
As detailed in my catheter tales, it took me until Saturday for my bladder to start functioning on its own again. This was the first hurdle I needed to get passed in order to be released from the hospital. They mentioned the possibility of getting released with a catheter, but that was not an option I wanted to use.
The second hurdle was getting off IV pain medication. They attempted to switch me over from IV Dilaudid to Oxycodine pills. This was really difficult for me –I had a lot of apprehension about being on the IV pain medication for an extended period of time, but felt no relief with the pills. I would take them, and the pain would just continue to increase as if I had taken nothing. I didn’t know what was going on and was concerned I had already built a tolerance to them. It turns out, much to my relief, that due to the surgery, my body was unable to absorb the pills. After a colectomy, time-released and encapsulated medications most likely will not work. In my case, some pills not in these categories were not doing the trick either. They switched me to liquid oral medication and it was a success.
Apart from the pain medication, I was also being given 1000mg of Tylenol every 6 hours and Gabapentin (for nerve pain) 3x a day. Once we realized my issues with absorption, we began opening the Gabapentin pills that were in a capsule and mixing them with a small amount of juice, and when I got home I purchased liquid Tylenol. Both these medications are to be continued for 2 weeks after surgery to assist with pain management.
After resolving the two issues mentioned above, I was cleared to go home on Monday.
The car ride home wasn’t the most fun – my stomach felt every bump in the road. My mom and I went on an adventure on the way – we went to Target (who else loves Target??) to purchase casual dresses and night gowns that would not press on my incisions. This trip whooped my butt, but I was able to find exactly what I needed. Even now, the fluid retention gets moved about with the wrong clothing. Something about the surgery disrupts the fluid in the abdominal area, and I had minor bruising, and some soreness that extended up my ribs.
Part of the reason it has taken me so long to post this follow-up blog is due to how GOOD I felt post-surgery, not how tired I was afterward. On Tuesday, I was able to get out of the house (with my husband’s chauffeuring assistance) to visit my brother-in-law and nephews who were in town, and run by a local pharmacy that sells ostomy supplies. On Wednesday, I enjoyed the 4th of July to the fullest. I had lunch at my in-laws and dinner at my parents – it was a great day! On Thursday, one of my friends who I’ve known since childhood came over with her beautiful family and brought my husband and I local barbecue and we had a great visit. She was awesome and totally open to talking about the details of, well, everything – surgery, post-surgery, ileostomy, future surgery options, etc. It really helps being able to talk about it. Since Day 10, I have been resting much more – Netflix and my couch are dear friends of mine. All in all, I’ve been doing much better than I would have imagined at this point following a surgery to have an entire organ removed.
Post-Op Follow-Up Appointment
I head back to the surgeon for my post-op follow up appointment on July 19 – 22 days after surgery. At this point, I hope to be cleared to drive and return to work. I will still be limited on physical exertion, as well as unable to eat raw vegetables until the ileostomy fully heals in about 6 weeks. We will discuss the next surgery – the J Pouch procedure at this time. I’ve been told the surgery can occur in 3-6 months. The reason for the delay is to get all medications (specifically the prednisone) out of my system, and allow my body to heal. The goal is to be the healthiest possible at the point of this surgery.
Until the next time,