Take Down Surgery

#whatcolon

Take Down Surgery

It has been three weeks since my take down surgery. I am feeling great and loving my J Pouch. However this wasn’t how I was feeling three weeks ago. This post is about my experience with the take down surgery, and how I overcame my anxiety and fears.

November 13, 2018. Just a little over 7 months since I had my colectomy surgery. I was nervous, and questioning having the take down surgery right up to the night before. I had grown to love my little Ahi Tuna, my name for my stoma. We had our bad days/weeks but in the end, and after much couples counseling, we had an understanding. Little Ahi Tuna had given me back my life, and I didn’t know if I could live without it. My mom said it best, “If the J Pouch doesn’t work out, you can go back to Ahi Tuna. But if you don’t try to live with a J Pouch, you will always wonder if you could.” Damn….Mom was right again.

This surgery was the shortest of the three. My first two taking between 6 and 8 hours, this one only took about any hour and a half. We got a late start and by the time I was done there were no more rooms at the Inn. I spent the night in the “recovery” section. The nurses tried to make it sound like a room with a TV. It was a stall. Three walls and a curtin.

You can hear everything. One nurse tried to convince me I needed a stool softener to “wake up” my bowls. I understand many surgical patients do need help waking up their bowels after surgery. I am not one of them. I also know how my body will react. Don’t be afraid to question medication. You know your body. This situation only motivated me to get up, dressed, walking, and using the bathroom. I was in my “room” by 10:00pm, and up, dressed, walking, and using the bathroom by 2:00am.

 I tried to see if the night doctors and nurses could get the paperwork going so I break out first thing in the morning. I didn’t go home first thing, but I was home at lunch time. This was going to be an easy recovery. Oh boy was I wrong.

After my second surgery when the J Pouch was formed and my rectum remove, I had some night time leakage. The leakage stopped after a few weeks, but I knew I could have it again after the take down. I was prepared with depends for night, and pads for the day. The downstairs guest room was set up and ready. I figured I would be back up stairs in less than a week. Nope. I was not prepared for the queasy stomach, feeling tired for over a week, and the gas pain (oh the gas pain). My amazing surgical team kept in touch and always answered my questions and concerns that I typically send them at 2am when I couldn’t sleep. My NP Laura explained that after my first surgery I had been so sick beforehand, anything would have made me feel better. I still needed 4 weeks to fully recover, but it was already a big improvement. This surgery I was already healthy and feeling great. It’s normal to feel yucky for 1-2 weeks after surgery.

I was able to return upstairs just after Thanksgiving. I wasn’t sure how my husband would feel about the depends, or if I would keep him up every time I got up. I wanted to still seem beautiful to him. Not the easiest when you have on depends, a hole in your stomach and a fear of crapping the bed. With every obstacle we have faced, communication has been key. Was it easy telling my husband I might crap the bed in my sleep. Nope. But he understood my fears, made sure to tell me how beautiful/strong/amazing I was everyday.

And So it Begins

This is a long post. Get comfy, grab a snack and beverage...Here we go. 

Growing up I always had a "tender" tummy. Pizza Hut Pizza and I did not get along. Alfredo sauce and Rubens would have me running to the bathroom 45 minutes after enjoying them. I became a master "bathroom finder". If we wanted to go out after dinner I almost always had to find a bathroom. Eating at home wasn't as much of a problem. I just thought something in the cooking oils used in restaurants was causing my "tummy troubles". After a bathroom visit I would be fine and not have another episode for the rest of the night. Life was great. Yes I would need to find a bathroom quickly, but it wasn't all the time. What could be wrong?

Then the bleeding started. Around the fall of 2008 I stared to see blood in the toilet after a poop visit. Yes I said poop. I will also say BM. Get the giggles out now. Anyways... I didn't think much of it. It's not out of the ordinary for some bleeding to happen. But it kept happening. A call into my doctor had me visit a GI. This part is still fuzzy in my memory. I'm not sure of the order but I remember meeting the  doctor, going to Vegas, coming back, having my first colonoscopy, and being told I had Ulceration Colitis. I had no idea what this was. I had a friend in high school who had Crohns, but that was all I knew. My GI decided to move, or leave, anyways she passed my case on to Dr. Poleski. 

So now I'm almost 29, thinking about starting a family, and I'm now told I have a chronic illness that I will always have and I don't even know how to pronounce it. We tried Lialda and Cortifoam but my symptoms just got worst. I had tried Canasa when we were in Vegas with no luck and just a swollen bum feeling. The brilliant Dr. P came to the conclusion that I was allergic to masalamine. Ok no problem just stick with meds that don't have masalamine. Masalamine is the active ingredient in all medications that treat mild forms of UC. Great. This was 2009. Insurance would not cover the next level up in medication (Remicade and Humira) because I had a mild level of UC. We decided to go with prednisone to get the symptoms under control. It not only got my symptoms under control but made them go away completely. They stayed away from summer 2009 until August 2011. 

 Vegas Baby

My daughter was born in June 2010 and my UC seemed to disappear. We even had a discussion about the possibility I never had UC, but so kind of bug or virus that had similar symptoms. July 2011 I took Advil to get through my daughters first birthday party. We can not say this one event triggered my UC to become active again. This is just my "bookmark" of my never ending UC story. Predinison had worked so well in 2009 we decided to try it again. This time around I couldn't taper off the Predinsione and would stay on it for the next 7 months. 

 Allie 💖

January 2012 my UC is starting to become more active and my quality of life is starting to go down hill fast. I had an 18 month old at home and I was tired all the time. Not new mommy tired. This is a level of tired I can't explain. When Allie (my sweet daughter) was a new born and I was up all night with her, I could still get up when she would cry. During my UC flare up I would hear her cry, but I couldn't get up. I wanted to, but my body would not let me. I was running to the bathroom 16 times a day, often with Allie in there with me. I am so thankful for smart phones and dress up jewelry. This is how I was able to cope with a stressful situation and still be mommy while "trapped" on the toilet. I started Remicade mid February and was in remission by June. In July while having my treatment, it became really hard to breath and my face started to feel really hot. I had built up too many antibodies against Remicade. Great. The good news was the short time I was on Remicade I had gone into remission again. The bad news I would have to be without medication until we could get all the paper work going to Humira. 

How are you doing? Still with me? Need another snack or beverage? Take an intermission break. 

I started Humira right before Thanksgiving in 2012. I was still in remission from the Remicade, except it was a drug induced remission. I would not be able to get back into remission on my own. Humira was amazing. While one it I had my son in 2013, and only a few "hiccups" until February 2015. Again I had an 18 month old, and Humira wasn't able to keep a flare up away on its own. Back to Predinsone, and now once a week injections of Humira. Thankfully I only need to be on the Predinsone for a month, and the once a week injections for 6 months. Back to remission for another 2 years. 

 Vince 💖

Over the 5 years I was on Humira my CRP levels (anti-inflammatory levels) kept getting higher and higher. Normally they are around a 4. Mine got up to 28. This should have shown I was having a major flare up. But I was symptom free. Even my colonoscopies showed I was in now "deep" remission. Life was great. Enter August 2017. Two days before my 37th birthday I wake up and I can't move. Not the I slept funny and need to work out the kinks can't move.  My left hand was curled and unable to straighten out. Pain shot through my body when I stood up. I had to sit on the stairs to get down much to the enjoyment of my 4 year old son who loved to go slide down on his bum. The flare up my CRP levels had been predicting had arrived. But instead of blood and mucus coming out my bum, my joints had become inflamed. Blood work showed my fantastic body and once again developed too many anti-bodies against a medication that was helping me. So ended the 5 year relationship with Humira. 

This was a funny situation. I was having a flare up, but not in my colon. We decided to do a round of Prednisone to help with the inflammation around my joints, and see if we can't treat the arthritis. I was put on Sulfasalazine and magnesium. Some people can't handle magnesium and will have almost a flare-up type reaction. I had that and was taken off the magnesium. But I kept having symptoms when I would tapper down the Prednisone. In October I started Entyvio. Like Remicade I went to an infusion center to get my medication. It was nice having 30 minutes to myself to read a book, or catch up on email. Vince and Allie would come sometimes. I made sure we had milkshakes and movies on a tablet to make the experience more enjoyable for them. Sadly even with Entyvio I couldn't tapper down past 20mg of Prednisone. This brings us to March 2018.

 Getting My Entyvio

When you have an IBD you adapt your life around your symptoms. Mine would be bad first thing in the morning, then start back up around 7:00 at night. Any errands, activities, or work would have to happen between those hours. After 7 pm I would be in the bathroom until bed time. This is not a way to live. You get use to it though. March 12... I'm tired all the time. My symptoms now start around 4:00 in the morning. I have missed days at my internship because I had been in the bathroom 5 times between 4:00 and 8:00. I was down 15 pounds (the one positive I could find) and felt like a truck had hit me. V.J., my amazing husband and our daughter Allie were heading to his parents house for a mini vacation. Vince and I would follow on Friday for the Saint Patrick's Day weekend. March 15...Vince and I arrive and like clockwork I'm in the bathroom from 7:00 until 10:30. Then up again at 4:00 am. I can only describe the feeling as death. I ended up coming home on the 16th so I could have a weekend in bed, with no husband or kids to worry about. March 21....I'm so hydrated I make V.J. take me to urgent care to get fluids. He described me as gray in color. After 2 bags I'm feeling less like death and go home. March... Another long night in the bathroom. I told V.J. I needed to go to the ER. 

 How I spent St. Patrick's weekend.

After maybe 7 hours in the ER I was admitted. I was in the hospital for a week. My fabulous sister Jennie was with me just about everyday and night. I went home after a week, but came right back less than 24 hours later. I would spend the next two weeks in the hospital. In the end I made the decision to have my colon removed and have an ileostomy. 

 My amazing sister 💖

I had my ileostomy bag for 7 months. I now have a J pouch. My take down surgery was November 13th. I'm still working out the kinks with my J pouch but life continues. Each day is a little better and we are getting along. More on life with an ileostomy bag and J pouch in future posts. 

 Good-Bye Colon Hello New Life 😃

Wow that was a lot of information. If you have made it all the way through, Thank you for taking the time to read about my past nine years with an IBD. Future post will not be as long. 

Welcome to #whatcolon

Welcome to #whatcolon. This is not a blog with medical advice. It is a blog about living with an IBD, the anxiety and stress that comes with it, and how I navigate this crazy chronic illness. I had Ulceration Colitis for 9 years before choosing to "divorce" my colon and rectum. This was not an easy decision to make, but I had two amazing women come into my life and share  their life without a colon experience. Because of them I was able to make the choice to have surgery and feel empowered from it. I want to pay it forward and share my experiences, from the good, the bad and the ugly, to empower others living with an IBD.