UC Battle 2018 Part 1

To celebrate my seventh year of having a “serious” UC condition I thought sharing my UC 2018 battle would be fitting. It is another long story (about a year) so I’m posting it in two parts. The second part will come out in March on around the 1 year anniversary of my latest battle.

It as been almost a year since the battle of my life began. I have started this entry a couple of times but had still be in the middle of the fight. When I went into the hospital I began taking photos, and doing live Facebook videos to document my illness. I wanted to provide others with IBD a raw and honest look at what can happen with this invisible illness.

In the earlier post I briefly talk about heading to the hospital, staying for three weeks, and making the decision to part ways with my colon and rectum. I had fought surgery for nine years. The whole idea terrified me. My GI team has always been amazing and able to calm me down when one after another, medications stopped working. By this time I was on Entyvio. I was responding to it as long as I was on prednisone. I was able to taper down to 20mg only to have the bleeding and urgency return a week of two before my next infusion. The Prednisone dose would go back up to 40mg for another 3 weeks. I have had flare ups in the past where I needed to be on prednisone, but I never had to keep going back up to 40mg almost on a monthly bases.

After voicing my concerns regarding reaching the end of what medications could do, two friends put me in contact with family members, and classmates who also had UC, and had gone with the surgery. Just someone to ask questions, and find out what daily life is like when you don’t have a colon. These two women became my life line. No question was off limits, and I asked everything from, how often they needed the bathroom, if there was urgency, sex positions that work best, if food was still an issue… I am forever thankful they reached out to me and constantly reassured me everything was going to be ok if I went with surgery.

Looking back, thought we can’t prove it, I was also on Sulphasalazine. I was taking this to treat the IBD inflected arthritis I had developed when my Humira stopped working. This medication is in the same class as mesalamine but I was told didn’t have mesalamine in it. It does have a small dose. I am allergic to mesalamine. I started taking Sulphasalazine in September. Again, we are not 100% sure this was why the Enytvio wasn’t working for the full 6-8 weeks between infusions. My body could have just been done with everything and doing everything it could to part ways with my colon. That being said, know your medications. I was very vocal about my allergies to the rheumatology team. The pharmacy questioned my prescription, concerned for my allergy, but instead of questioning the doctors again, I assured the pharmacy that I had spoken to my doctors about my allergy and they said this was ok to take. Don’t be afraid to second guess your doctors.

By March I was a hot mess. Nights were the worst. I could go all day not needing to find a bathroom. Then around 7:00 the urgency would kick in and I would be in the bathroom almost every hour until 11:00 at night, and a few more times in the early morning hours. Weight started to drop (the only good thing about this illness) and nothing seemed to help. I was on a low resolute diet so no fiber. About every other week I was giving a stool sample to make sure I didn’t have C-Diff or any other GI illness that could cause watery bloody diarrhea. All lab test came back negative.

After St. Patrick's weekend (I spent the whole weekend in bed with Angus, eating crackers while my family was at the coast) I told my husband I needed to go to urgent care. They gave me two bags of fluids but my pee was still really dark, sign of dehydration. I felt better after the fluids, but the next day felt like death again. My GI team said to go to the ER…

I am thankful we now have family that lives close by. My in-laws were able to stay at the house with the kids while my husband took me to the ER, and my sister was able to come to the ER and stay in the hospital with me while my husband looked after our children and tried to keep their lives “normal”.  This was the best medicine. Jennie knows me better than anyone. She brought sushi, wine, items for facials, and hours of laughter. We were known as the party room. She also made sure to be at all my scopes since I would be too drugged up to remember what the doctors reported. We couldn’t remember all the doctors names who would come in at 5am each morning so we had fun nicknames to help us remember. Our favorite ones were Dr. Buddy and Dr. Smells Good.

I stayed a week at Duke Regional Hospital. I went there thinking my GI team was still there. They had changed over to Main Duke in December. The GI team at Duke Regional was amazing. At this point the plan was to blast me with 60mg of prednisone in IV form, then when I had stabilized get me back on oral prednisone and send me back home. I was able to get down to 40mg after a week and only have 4 bathroom visits. Dr. Buddy checked my charts and vitals, asked if I thought I could go home and I said yes. I had an infusion scheduled for the next day. I was weak, but felt good. Of course I can go home. That night I was up every hour and a half. V.J. said he would take Vince to preschool before heading into work. I was so tired from the long night in the bathroom. I don’t know what made me get up to get a shower. Looking back, I could 100% see myself just throwing on a pair of leggings and a sweatshirt, putting on my glasses, hair in a messy bun, and heading to the infusion. But that is not what happened. V.J. was still at home with Vince. I remember thinking I needed to get up and get ready while he was still home. While I was in the shower my ears started to ring. My head got fuzzy and I instantly could hear my high school band directors warning of “if you lock your knees, you’ll pass out”. I never did pass out in my marching band days, but knew this had to be the feeling those who did, felt before they went down. I somehow got out of the shower, I remember not knowing how to open the door at first, and found my phone on the bed. I didn’t faint. I did fall off the bed into the pile of laundry. My phone was still in my hand so I sent V.J. a “HELP ME” text. It was hard to catch my breath, but I managed to climb back on the bed before collapsing.

I am very much a believer that our loved ones never leave us when they die. Years ago my transmission died over christmas while I was in Ohio. The roads were covered in snow, and I couldn’t get my car to go more than 20 miles an hour. Somehow Jennie and I made it the last two miles to our house. As soon as we were in the driveway the car just stopped and we had to get a tow truck to take it to the shop. Call me crazy (I don’t mind) but I swear my uncle, grandfathers, and great uncles were pushing the car back to our house. I had the same feeling when I fell out of the shower. Someone pushed the door open (I was pulling), someone made sure I got up when V.J. was still here (I just wanted to sleep), and someone stayed with me and kept me calm during the scariest moment of my life.

V.J. picked me up, and took me to my infusion. We didn’t think driving myself was the best idea. My PA Alison told me months later she had to “hide” in an empty exam room to recompose herself after seeing me walk in. I was what V.J. described as ghost white/gray. My GI team has seen me in a flare up before, but never this bad. Alison and Dr. P stayed with us and pumped me full of fluids. We never did get the infusion. The new plan was to go back to the ER and be readmitted. Back to Duke Regional we go. I went back to Duke Regional because I had just been there, the GI team there already knew my history and my recent flare complications. Jennie came so V.J. could get the kids off the bus, and I moved into the Beyonce suite. This was the only room they had open when I checked in. It was huge! I had two windows, a window bench, large bathroom (room for a clawfoot tub), closet, and seating area. It was also the infectious room for patients with tuberculous. So everyone who came in had to first walk into the separate prep room to put on a yellow medical gown, mask, and gloves, and then enter the main room. It was so quiet. I didn’t hear any floor noise you normally hear on a hospital floor. If it wasn’t for the nurses (who are amazing) coming in every two hours in the night, it would have been a great “get away vacation”.  I had lots of visitors. Friends who worked in the Hospital would pop by to check on me, our minister came the second I texted her, my book club girls sprang into action with a meal train, and of course my sister called or came by everyday. Jennie even set up an easter egg hunt for me since I wasn’t able to be home and have one for my kids. I share this part not to brag (ok maybe a little, I have the best support ) but to encourage others with IBDs to let their friends and family know what is going on. We try so hard to hide the fact we are sick because we don’t look it. You don’t have to walk around with a sign that says “I HAVE UC! MY SUPERPOWER IS KNOWING WHERE ALL THE PUBLIC BATHROOMS ARE”. You do need to open up to some. Christine from my book club simply asked what can we do? Would you like a food train. Yes. That would be amazing. Stephanie, our minister asked if I would just like to talk and pray with holy water. I was ready to take a bath in that stuff. Admitting you need help, or that you are sick is NOT a sign of weakness. It IS as sign of strength.

One nurse who stood out from my stay in the Beyonce suite was Kim. Kim was the best. When I complained about my leg feeling funny, she made sure the doctors kept checking on me. I had developed a blood clot. It ran from my groin to my knee. I didn’t have any of the “normal” blood clot signs, so when the medical team came in for the 5am rounds, nothing seemed off. She made sure Dr. Skippy (when did doctors start being so young?) put in orders for an ultrasound since I was in my second day of complaining about leg pain. Kim, I don’t know if you are reading this, but thank you for being my nurse, and friend.

So this whole time I’m in the Beyonce suite, I’m also waiting for a room to open up at Big Duke, get on Dr. Thackers schedule for surgery, and get the phone call they they will transfer me. I was put on Dr. Thackers schedule for the following Tuesday April 10. They found the clot on   Saturday April 7, the same day I was getting transfered. When you have a blood clot, you are not allowed to get out of bed for fear it could break off and end up in your heart or lungs and kill you. Telling someone with UC that you can’t get up to use the bathroom is like telling them to stop breathing. We really can’t stop crapping every hour or so. They said if I had to go to call for a bedpan. HAHAHA. There is no way the wonderful nurses team would be able to get a bedpan to me fast enough.  Dr. Skippy came to tell me the news. Thank god Jennie was there or I would have thrown my soup at him. I had this reaction not because they found a clot. It was because he said I would have to be on blood thinners until the clot went away, it would take about 6 months for that to happen, and they won’t operate on me with a clot. This is where Jennie quietly reaches over to remove the soup from my hands. He also wasn’t sure if the transfer team would still come since I now had a clot. Jennie now removes the whole meal tray from my reach. I have been away from my husband and kids for two weeks, I have been pumped full of steroids, I haven’t slept more than 3 hours at a time since February. I believe “ARE YOU KIDDING ME!!!!” was my response. To be so close to the end, only to be told it might not happen now… I was done. Dr. Skippy backs away to fill in the new situation on my chart and then a miracle happens. Two charibs (seriously...when did medical personnel become so young?) come down the hall with a stretcher asking “DiMizio? Is this the room for Ms. DiMizio?”. I made sure to give Kim a hug as I was rolled away and put in the the waiting EMS truck. She was my angle during my stay at Duke Regional.

This ends the story of UC Battle 2018 Part 1. As in all great stories (Gone with the Wind, Sound of Music, Hamilton), there is an intermission. Grab some more snacks, have a restroom break, refill that wine. UC Battle 2018 Part 2 will continue in two weeks. =)

Travel with a J pouch

A year ago the thought of driving more than an hour was a horrifying thought. I had to know there would be places to stop in case I had a feeling of urgency. Once that feeling hits I would have maybe 5 minutes at most to find a bathroom. Other times I would only have 30 seconds to find a bathroom. So driving to Ohio from North Carolina to visit my parents was out of the question. Flying was just as bad. I have never used an airplane bathroom. What I know is they are small and have little to no ventilation. Not a good combo for someone who would has an IBD. So I stayed in my little bubble in Raleigh North Carolina. Always 20 minutes from home, and always 4 minutes from a toilet. It wasn’t an exciting life but it worked. That was my life a year ago. Now...It is so much better!

Now I have my J pouch. With the urgency gone, I am able to go out for a few hours and not worry about where the bathrooms are. I didn’t travel the first 4 months. Not because I was afraid to. We just didn’t have anywhere to go, and the kids calendar was full of activities. Our first trip was after my second surgery when my rectum was removed and the J pouch formed. I still had my ileostomy bag. We drove to Myrtle Beach three hours away. We made it just about the whole way to Myrtle Beach. Six months before that I had barely made it home from Wilmington, only 2 hours away. This was huge for me. The whole week was amazing. I was able to swim with my kids, play putt putt, take a walk on the beach every morning, search for seashells, and never wondering if I would have a feeling of urgency, or make it to the bathroom.

Two months later was my take down surgery and the beginning of life with just the J pouch. At first (as with the ileostomy bag), the output is watery and I could only hold it in two hours at a time. As time moved on, my body adjusted and I’m able to control the thickness of my output and “hold it” longer.

This weekend I did a two day, nine hour road trip with Vince to Ohio. Normally when I take the kids to see my parents, we stop about every two hours. Giving the kids bathroom breaks, and wiggle breaks. This trip we had planned to drive at night and spend the night in Beckley WV. There was a nasty winter weather system moving in and the thought of driving in the mountains through it in the dark did not sound like the best idea. We left early and made it to Virginia before it stated to get dark. This is normally when we would take a potty break. There was no way I was going to stop unless Vince said he had to use the bathroom, or I had a feeling of urgency. The fog was thick, it was raining, all I wanted to do was get to Beckley before it started to sleet. We made it without any problems. After I had brought the bags in, I realized I hadn’t once had to use the bathroom! Over four hours of stressful driving and never breaking into a sweat with cramp pains or bursting into tears because I can’t find a place to pull over in the middle of nowhere in the mountains (insert banjo music here). For most people this is not a big deal. For anyone with and IBD...THIS IS AMAZING! The best comparison I have (and only parents will get this) it’s like when your child is going through potty training, and they just get up on their own, go into the bathroom, and wash their hands without any prompts from you for the first time.

We did stop on the second part of the trip  for lunch, but could have made it the whole way again without needing a potty break. So other than being able to sit in a car for 4 hours, what is travel with a J pouch like. It’s very similar to travel with your colon. Many people experience some kind of stress when they are away from home. This can sometimes cause them to be blocked, or need to use the bathroom more. For me it’s more of a consistency issue. I have noticed my output is more watery. Even though I am in my childhood home and don’t feel the stress, it is there. To help my J pouch stay happy I do these things…

1 Increase my Imodium from six to eight or ten. I don’t have any cramps, or gas pain. I just want to make sure I don’t become dehydrated. The

2. Really watch the amount of food I eat in one sitting. I’ve made sure I only eat half of my meal with we eat out. When you only have your small intestines, they fill up quickly.

3. Have wipes and ointment on hand, and an air freshener. When you go a lot, your bum gets raw. Flushable wipes help with the irritation, and Desitin helps to calm down the “my ass is on fire feeling”. The air freshener keeps the embarrassing smells away and your business stays your business.

4. Get a good night's sleep. Normally I have to get up between 5 and 7 in the morning to use the bathroom. Sleep is really important to keep up a healthy immune system. Years ago I talked to my GI team about my sleep concerns and they prescribed me a muscle relaxer that would help with the hidden stress, and help me fall asleep. It is a low dose so I can still get up and function if my kids needed me in the middle of the night, but will help me fall and stay asleep when I need to.

Tomorrow we drive back to North Carolina. We’ll have to go the the whole nine hours but the insecurity is gone. People often ask if I’m happy with my surgery choice, or if given the chance would I do it again. In a heartbeat. I have the whole world back, and I’m no longer stuck in my little (but adorable) Raleigh Bubble.

These are my experiences with my J pouch. As we all know with IBDs, not everyone has the same experience. These posts are to offer hope and encouragement.