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.

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.

Prednisone

Prednisone and I have a love hate relationship. We go back to the beginning of my UC journey. When I was first diagnosed with UC it was mild, and my doctors had me take Canassas, then this foam, and finally Lialda. We discovered I was most likely allergic to the main ingredient since my symptoms only seemed to get worse. Thus began the Prednisone. Just to give a time line. I started the other medication in March of 2009, and around July we started the prednisone. I was only on it for about a month but it really did the trick. Not only did all my UC symptoms disappear, I stayed in remission until July 2011 with out any medication. Here we begin the 7 month battle. I started to flare up in July 2011, but because I couldn't take any of the medications for mild UC, and Insurance wouldn't help with the stronger medication unless I had moderate to severe UC, we had to play the waiting game. 7 months on prednisone made me absolutely hate this medication. My face rounded out, I had massive mood swings, anxiety... Luckily in February of 2012 my flare up became severe, and insurance would cover Remicade.  I was able to wean off the Prednisone, my face went back to normal, and my emotional wellbeing recovered. I have had to get back on Prednisone twice since then. Only for a short time. The longest has been 2 months. Even in that 2 months my face has rounded out again, and I have put on 12 extra pounds. Not what you want when you just spent 12 weeks to lose those 12 pounds.

I am at the end of my latest relationship with Prednisone. Yes I gained 12 pounds, and yes I have the "moon" face again, but it did its job and I'm back on my way to remission with a new medication. Fingers crossed I can go another couple of years before needing to meet up with Prednisone again.

Taking Control Intro

It's funny how often we think we have control of our lives. For example, my husband and I are planners. We have always had a plan A and B, and sometimes even a C. We were lucky enough to have our plans work out for us when it came to having children, right down to the day they were born. We planned to be on a single salary while our children were little. We planned our move to our new house, getting a new car, vacations, events... Our budget is tight, but we have still be able to live comfortable. However we haven't been able to plan for everything. We didn't plan our daughter would have to be born by C-section 5 weeks early, or that I wouldn't be able to produce enough breast milk. We didn't plan that I would be diagnosed with Ulcerative Colitis in 2009, starting almost a decade of "what if's".




Being a planner, these "life bumps" have caused lots of anxiety, stress, and break downs (not what you want to have with UC). However being a planner has also helped see past the present and look to the future. I have been able to take back the control. I know that I can't plan for everything, but I can see different out comes and what path to take for each one.



Since 2009 I have had 4 flare ups, and have tried 5 different medications. But I have only met 3 people with UC. To be fair not many people like to introduce themselves with "hello my name is ___ and I have UC that causes me to have flare ups with bloody diarrhea for days, and weeks at a time.  Yes there are Facebook groups, chat rooms, and websites to connect you to others, but I only read the worst of the worst. I could feel myself losing control of my UC and letting it consume me. So I did the only thing I could think of. Get off those pages, stop researching UC, and just focus on the information my awesome GI team provided. If a family member or friend sent me an article about UC I just deleted it. I didn't want to know too much. There were too many plans.


Now its 2017. My body has produced too many antibodies against Humira over the past 5 years so on to the next plan. Entyvio here we come. Part of the new plan is also to get a better hold on diet and exercise. I had lost 30 pounds over the last 8 years from flare ups. But the weight has come back (not all of it) and the Prednisone has not helped. One way I have found to hold myself accountable for diet and exercise is to write about it. So here we are. I'm not sure if anyone else will read this blog, but if they do Hello, I'm going to try to post at least once a week on the good, bad and ugly of my taking control of my UC. I also have another blog called Happy Hour, where I talk about being a stay at home mom, and starting to move back into the professional world. This is how I am Taking Control.


Cheers