Surprise I’m Back! But Where The Hell Have I Been?

If you follow me then you probably noticed that it has been just a bit since my last post. 3 months in fact. So what was with the radio silence? Where did I go? Am I alright? Do you not want to blog anymore? The answer is as simple as it complicated. The quick version is that I have been stuck inside my own head. Struggling with feelings and emotions that have overwhelmed, confused, and frustrated me. I was mentally and physically exhausted. I couldn’t shake the damn C Diff and honestly went emotionally numb. The roller coaster of hoping that the next thing I tried would be the treatment that finally got rid of it only to have it come back within a few weeks every time was too much. I was just done.

I had my second Fecal microbiota transplant (FMT) at the end of March, and I was certain that this time was it. It went smoothly and the first week it truly seemed like I was better. I was excited to move forward. Then week two came around and BAM the C Diff was back AGAIN! I had never felt so hopeless. I began to think that I was never going to get rid of it. And if I couldn’t get rid of it how was that going to affect my Ulcerative Colitis? The doctors knew that the UC was acting up on top of the C Diff but my next option was a biologic that they didn’t want to start me on until the C Diff was cleared. A biologic would suppress my immune system which would let the damn C Diff run even more unchecked than it was. I felt stuck in a sick sort of limbo.

Depression had been lingering around for awhile and I knew it was there in the background just waiting for its chance to sink its claws in. After the second FMT failure I let it wrap itself around me like a cocoon. Why couldn’t I just be better? Why did my body hate me so much? Was it worth it anymore? I was on yet another round of Vancomycin and while it kept the C Diff in check I wallowed in self pity. I was constantly sick between head colds, the flu, migraines, and my UC flaring on top of the C Diff. I truly felt like my body was giving up on me. I had no energy, was sleeping upwards of 13 hours a day if not more, and struggling to keep up with simple day to day things. I didn’t care about anything anymore.

It was May by this point and I had now been dealing with C Diff for a whole year. I was a mess and it wasn’t a pretty sight. My doctor decided to refer me to another doctor who specializes in infectious diseases. He hoped getting some fresh eyes on my case would be a positive and maybe give us a new route to try before attempting a 3rd FMT. That first appointment was almost comical. Dr. P’s eyebrows almost hit the ceiling when I told him how long I had been dealing with the C Diff. It was 45 mins of recalling how many times I had basically been shitting in a day for a whole year. He paused before saying he had tried something with another patient with recurring C Diff, however that patient did not have any sort of IBD so he wasn’t sure how it would work for me. I was willing to try anything. He could have told me I needed to cut my big toe off and I would have done it if I thought it would help.

The next week I found myself staring at two bottles of GoLytely prep. Those of you who have ever had a colonoscopy might have been lucky enough to have to drink this lovely stuff. At this point I’m use to it unfortunately. Colonoscopies every 6 months for 3 years kind of does that. I however was nervous this time. Usually you drink 1/2-2/3 of the prep the night before a colonoscopy and finish the rest of it the morning of. Dr. P’s suggestion was to try and completely flush everything (good and bad bacteria) out of my colon, and then stay on the Vancomycin for two weeks to try and eliminate any C Diff that was maybe still hanging out in there. I had to drink a whole bottle of prep one evening, and the second bottle of prep the next morning. I won’t lie guys it was hard. That last 1/3 of each bottle I had to use pure will power to get it down, but I did it. Then came the part I dreaded even worse than the prep itself. The wait to see if it worked.

And HOLY SHIT GUYS IT WORKED! Two weeks after the colon flush I was back in Dr. P’s office and while things still weren’t perfect (you know 1-2 solid poops a day perfect) it was the best I had felt in months. Only going to the bathroom 2-3 times a day was freedom compared to running to the bathroom anywhere from 5-12 times depending on the day. Since things still weren’t perfect we decided to schedule another colonoscopy 2 weeks out to see how things looked. I was a bit nervous the C Diff was going to rear its head, but things looked so much better than my last colonoscopy in December. I still have quite a bit of inflammation in areas of colon but compared to the last one my colon doesn’t look nearly as angry as it once did. I went from having colon that was considered severe to one that is considered moderate looking.

BUT that inflammation means that my UC is still actively flaring, and my medication that I’ve been on doesn’t seem to be working for me anymore. I had to make a decision that was honestly one of the hardest things I’ve done since being diagnosed. I could have stayed on my Balsalazide and hoped that my body would continue to maybe get better, or it was time to move onto the biologic. I went back and forth for over a week, and for me I felt like it was time to move on. The last year of my life has been the hardest ever in terms of my health, and I’m ready to hear the words remission. I didn’t make this decision lightly and talked about it with my family and my team of doctors at length and we all agreed that Humira was the best option for me at this point in my journey with Ulcerative Colitis.

Today, as I’m writing this, I had my first dose and I’m looking forward to the future with actual hope for the first time in a long time. I’m in a much better place mentally as well as physically. Things have held pretty steady since the colon flush and I’m hoping that true remission from UC is right around the corner.

Fun fact (or annoying one depending on your mood) about me; I like to try and find the positive in every situation and I’m so unbelievably happy I’m in the mind frame where I can do that again. So the positives of dealing with C Diff and UC for the last year are:

I learned how strong I truly was. Even at my lowest points when I wanted to give up I didn’t, and I think that is something to be proud of.
That I have the most amazing support network. My family and close friends never once made me feel like any of this was my fault. Without them I don’t know what I would have done.
I met some new people online who are also C Diff survivors. Besides being able to give advice and know exactly what I was going though they actually took the time to check in on me from time to time. Sharing this struggle started as therapy for me, but being able to connect with people has been an added extra bonus.
I lost 40 lbs over the course of the last year. Not in the healthiest way because it wasn’t through diet and exercise, but instead because I was constantly pooing or didn’t have any appetite. I am overweight and wasn’t happy with what my body had become after being on Prednisone for so long. Definitely not the ideal way to go about it, but since my body hated me this last year I’m going to claim this as a small victory.
I dyed my hair blonde. Odd I know to mention it, but I was craving a change I could control. On an impulse dyed my hair, and I love it.

So that pretty much catches you up on where I’ve been these last 3 months. It was a dark time but I’m finally walking in the light again. I’m going to do my best to get back to weekly blogs. Summer is a busy time for me so I might miss a week here or there just due to lack of time, but I am back! Those of you who have stuck by me though my long absence, Thank You so much. Your love and support mean the absolute world to me. To those of you who have just found me, Thank You for taking the time to read this and I hope you decide to stick around.

Until next time

XOXO Becky XOXO

European Vacation: London

Traveling from Edinburgh to London was my first time on a train. Flying would have been the faster option and given us more time to explore, but then we wouldn’t have gotten to catch glimpses of the idyllic English countryside. I loved rolling by miles of green fields only to be briefly interrupted by sleepy little villages that I would have so enjoyed being able to explore. I loved exploring the big cities we went to, and for a first timer being overseas that was the right choice. The convivence of being able to see so much in just one place was perfect for us, but I know there is so much more out there to see in those quiet little towns and the surrounding countryside. Walking out into Kings Crossing Station was a bit overwhelming at first. Edinburgh is a big busy city but it has the feel of a small town, at least for me it did. London was just frantic energy hitting you full force.

View of one of the little towns we passed though on the train

It didn’t take long to get our bearings and figure out where to find a taxi to take us to our hotel. Traffic was crazy, especially when I come from a county that has only one traffic light. Seriously just one traffic light. Our hotel was located right across from Kensington Garden and close to the Lancaster Gate Underground Station, which once we figured out how the Underground worked was perfect for us. Honestly I didn’t mind walking around and just taking the city in. I definitely got my exercise on this trip.

We checked in and since it was still daylight, Trace and I decided to pop on over and take a stroll through Kensington Garden. It was so beautiful and peaceful. The noisiness of the city faded away to a dull hum as we strolled along the little paths looking at the different little monuments and statues. We decided to call it an early night since both of us were feeling a bit tired from the day of travel, and knew that the next day was going to be a full day of exploring.

Our first full day was a LOT of walking. We needed to pick up our London passes, which included a card for the Underground, in Leicester Square. If I remember right I think it was only like a 3 maybe 4 mile walk from our hotel, but ended up taking us about 2 hours to get there. Mostly because I kept stopping to take pictures. On our way we passed by the Marble Arch and walked down a large portion of Oxford Street, which is lined with stores just begging you to stop and take a look in. After getting our passes we headed to the nearest Underground Station and got a crash course in how it works from a sweet little lady who did her best to educate us. We were heading for the only stop that Trace had requested on this whole trip: The London Zoo.

The Tube ride wasn’t that bad, and by the end of the trip we both felt pretty comfortable on it. We got to the Zoo just before noon and I have never seen Trace so excited. We were there all afternoon and the whole time she had a huge grin on her face. The Zoo is huge and you could easily spend all day there. I felt like we rushed parts of it just to see as much as we could. We both felt like little kids walking around and taking in all the different exhibits and animals. I think the highlight for both of us were the giraffes. They are Trace’s favorite animal, and watching her get so excited made it a special memory. I don’t think I’ve stated this but she is my little cousin, and while we have always been close this trip brought us even closer.

Leaving the Zoo we ended up in Regent’s Park and walked through it stopping to take pictures and have a good chat. Here we ended up a bit confused on how to get back to the hotel on the Underground. It was a nice night and there was still plenty of light so we decided to walk back. It was a hike but I am glad we did it. We got to see and take more of London in. I walked almost 13 miles that day! Once we got back to the hotel we were down for the count, but I did manage to map out which Underground lines we needed for the next day.

Our second full day we headed to my requested location: The Tower of London. In middle school I was obsessed with the Tudors and that section of history so it was a must see. I was not disappointed. Just like with Edinburgh Castle walking thought the gates I could just sense the history. I was walking in the steps of people who I had read about, who were important figures in history, and I was literally walking where they had once roamed. It was overwhelming in a good way. We got there fairly early and spent hours just walking around. I wanted to read everything, go to all the towers and different sections, take a million pictures, and just take everything in that I could. I think I touched every wall in that place that I was allowed. I don’t know why but putting my hands on pieces of history, when allowed, is something I’m compelled to do. Once again I could do a post just dedicated to this one location. We chose not to do a guided tour and I personally liked being able to walk around at our own pace, but the next time I go back I wouldn’t mind hearing the stories that are told on the tours.

I forced myself to not spend all day at the Tower because there was so much else to see in London. Outside the Tower we jumped onto one of the guided bus tours which I would recommend. You get to see quite a bit and get a lot of information that I found interesting. It was also included with our city passes. It took us by the London Eye, London Bridge, Blackfriars, King’s College, Big Ben, Westminster Abbey (which next time I need to go and see inside of), and so much more. We got off at Buckingham Palace which was crowded. It was amazing to see up close and in person. People were polite and orderly as we all waited to get our selfies and Instagram pictures with the palace in the background. We debated getting back on the bus, but Hyde Park wasn’t that far and we both had enjoyed all the other parks we had walked though. We strolled along The Serpentine, and stopped by the Princess Diana Memorial Fountain. There is something to be said for casually strolling though these wonderful Parks and Gardens to wind down after an amazing but busy few days.

Day 3 in London and I was starting to feel a bit worn down. I was still excited to explore and continue onto our final city the next day, but had we also reached day 10 of the vacation and my body was tired. For me exhaustion is my biggest enemy while I’m having a Ulcerative Colitis flare. It’s the first thing I notice and it sticks around for a long time after any other symptoms have gone. Technically I was still flaring while I was on this vacation. It was the best I had felt in months, but the exhaustion was still there reminding me that I still had UC.

That being said we decided to stay somewhat close to our hotel. We stopped by Kensington Palace first. Another piece of history that was amazingly beautiful. Walking through and seeing the different rooms, seeing the paintings and artifacts had my history nerd self happy once again. The opulence was breathtaking. It reminded me a bit like Dublin Castle, but it felt older if that makes any sense. They had a display of the late Princess Diana’s clothes that I found intensely fascinating. I was only 9 when she passed but even at that young age I knew the impact she had made on the world in her short time on earth. I would love to go back when the garden next to the palace was open and in bloom. It was pleasant while we where in London but Spring had only just started to make its presence known.

After Kensington Palace we headed to the Albert Memorial. Opened in 1872 by Queen Victoria in memory of her husband, Albert. It is massive. It stands 176 feet tall and is done in the gothic style. There is a ton of detail both large and small to admire. It is directly across from the Royal Albert Hall which is a beautiful building. We continued on to the Victoria and Albert Museum. Here there was so much to take in. Centuries worth of art and artifacts from all over the world. I wish I had been able to visit a museum like this when I had briefly entertained the idea of perusing history and archeology as a career in middle school. I truly think it would have pushed me in that direction instead of deciding to treat it more as a hobby or passion to just read about. Being that close to objects that people created by hand, I don’t know it just a feeling I can’t really describe. After a few hours, again THANK YOU TRACE for letting me drag you slowly through another museum, I managed to pull myself away.

Our final stop of the day was Trafalgar Square. It was insanely busy and I admit that I was beyond ready for the day to be done. We did a quick pass though before heading back towards the hotel. There was a lot to see and the energy was buzzing but I was ready for bed. Let me know in the comments what the perfect vacation length is for you guys? I enjoyed my 14 days immensely but around day 10 I was ready for my own bed. I don’t know if that’s because of my UC or is that a pretty average time frame to start feeling homesick even if you are having a blast?

London was everything I had hoped it would be and so much more. There is still so much that I want to see and do that another, longer trip is in the cards somewhere in the future. I think you could spend a month and still not see everything that London has to offer.

The next morning we had to be up early to catch the Eurostar. We had one last city on our European vacation and we were going to ride a train under the English Channel to get there.

Until next time,

xoxo Becky xoxo

Guilt

I am at the start of yet another flare (Not sure yet if it’s just the C-diff, just my UC, or a combo of both again) and I am once again feeling a tremendous amount of guilt. It’s irrational and all in my head, but the feeling is there and with each passing day it gets stronger and stronger. With each flare up, or set back I find the feeling of guilt gets worse. When I first started experiencing Ulcerative Colitis symptoms I was so scared of what was happening with my body, but even then I was feeling guilty. Guilty because I was in pain, guilty because I couldn’t control my body, guilty that I didn’t know what the hell was going on.

After my diagnosis the guilt only grew worse. I knew that it was a disease that I had no control over, but part of me felt like I was being punished. For what I had no idea, but my brain kept telling me that I had done something to deserve this. Honestly I still feel like this on occasion to this day. On my lowest days I feel like I deserve to be where I’m at. The sick part is even that makes me feel guilty.

Having to cancel plans when I don’t feel comfortable being away from my bathroom, having to run to the bathroom when I am visiting people, worrying about having to run to bathroom, being in visible pain around people, missing work because I’m sick once again or have yet another doctor appointment, having to explain my condition to people, worrying about being around my niece and nephews when they are sick because my immune system is shit, being fatigued all the time during a flare, catching C-Diff on top of already having Ulcerative Colitis, boring everybody when I talk about my symptoms or how I’m feeling even when they ask, and oh so much more make me feel extremely guilty.

I know it’s just me. Nobody else I know would agree with anything I just mentioned. I have nothing to feel guilty about. I’m sick and I can’t change that. I manage it and stay on top of it, call my doctor when I notice things are getting worse, take my medications everyday like I should. I am doing everything possible to stay as healthy as I can. But I still feel guilty that I am sick. Guilty I am a burden to my friends and family. Hell I even feel guilty I am a burden to my doctors because my body keeps on being difficult.

These feelings are always there, but 95% of the time I’m able to push them back and tell myself I’m just being silly. I recognize the feelings, but I also recognize that its all in my head. My anxiety makes the guilty feelings worse which is why the longer a flare goes on the worse the guilt grows. I know I’m not alone either in feeling the way I do. I’ve come across a few other people who describe feeling pretty similar to what I have. It’s nice knowing that I’m not alone, but to be honest it doesn’t make me feel that much better.

I’m not writing this to make anyone feel bad for me, or to try and console me. I just want to make people aware that for me this is a real thing. What it boils down to, at least for me, is that I hate the fact that I’m letting people down even unintentionally. I appreciate when people tell me I’m being silly, but I already know that. For me it would mean more to hear people simply say “I’m sorry you’re feeling that way, but I get it.” Don’t try and make me feel better, just acknowledge the fact that my brain is making me feel a certain way and move one. Because you trying to placate or lift me up only adds more guilt.

I am working on trying to lessen the guilt. It’s not healthy to have this weighing on me. This is a part of my personality and it affects me in all aspects of my life, not just when I’m having my health issues. I’ve found that meditating, while I’m not very good at it, does help me calm down when I start to get overwhelmed with the guilt. I started to workout again, when my body allows it, and those endorphins really do help. However, the biggest step for me though as been allowing myself to open up to a few close people in my life when I am at my lowest points. It’s hard but talking about these feelings as I’m wallowing in them helps me see how hard I’m being on myself. The greatest part is that these people just let me talk and don’t try and immediately make me feel better. They let me feel it and work myself out of it. Which for me is what I need.

I’m a work in progress, but the fact that I’m staring another flare in the face and writing about these feelings for all of you to read instead of shutting down is a step in the right direction. Writing this blog has been a major help in keeping myself honest with myself. Thank you for all the love in the recent weeks. Your support is more appreciated than I will ever be able to convey. Fingers crossed this flare up is quickly brought under control, and I am back to myself in no time. And I will keep working on trying to lessen the guilt.

Until next time,

xoxo Becky xoxo

The Road to Now

So I had my diagnosis, a new medication to try, and so many questions. My Gastroenterologist, Dr B. is amazing. She has explained and reexplained things. To be honest there is still a lot that I don’t know or understand fully about Ulcerative Colitis, but she has gone above and beyond to make sure I’m doing and feeling my best.

The first medicine we tried was Sulfasalazine, which has been around for awhile. However it can be a bit harsh. It wasn’t to bad to start with, and honestly the worst part was remembering to take it at the same time everyday. Until my body decided that it was actually didn’t like it. I started to feel pretty nauseous after taking it, even with food, and it just progressively got worse as the days went by. I was on that for about a month before we switched me over to Balsalazide. The plus side is that I was able to take it and not feel gross all day long, but instead of 4 pills a day I was now taking 9 pills. I was also put on iron because I was anemic. Luckily the pill did the trick and my iron levels slowly made their way back to being in the healthy range.

With the new medication I was really starting to feel like my old self. Things weren’t completely back to “normal” but I was 95%. The next few months were monthly doctor appointments to monitor I was feeling, and bloodwork to see if I was improving. Which I was. In March of 2017 we scheduled another colonoscopy with the hope that my whole colon could be explored. There are actually 5 different types of UC, which boils down to how much of your colon and rectum are affected by the disease. The coloscopy went well, and it turned out that I have what is called Pancolitis. That means my entire colon and rectum are being affected by the ulcers. Dr. M. who did my colonoscopy, and actually works with Dr. B. in my case, told me that he classified my case as mild, but that it had been moderate beforehand. So yay for improvement!

The next 7 or 8 months went amazingly well. I truly felt like my old self. The only thing that wasn’t 100% normal, and still isn’t to this day, is that my stools aren’t solid. I don’t want to get too graphic, but mine are stuck somewhere between a liquid and a solid. Also mornings are the worst for some reason. I have to go first thing in the morning, and with some urgency. Not unable to control myself bad, but I have had a few close calls. Bathroom trips are considered most days to be in the normal range. Good days its 1-2 times, and bad days are in the 4-5 times a day range.

Getting back to my timeline: November of 2017 the urgency and blood returned. I ended up having to cancel a trip to spend Thanksgiving with a friend because I was scared I wouldn’t be able to make the 9 hour drive there without an incident. It started off slow, and I brushed it off at first as just being stressed. Stress definitely affects me and my condition. When I’m under a lot of stress the diarrhea and urgency crop up, but it usually only lasts a day or two until I calm down and things go back to my normal. The blood in my stool told me it wasn’t just stress this time though. So I made a call to Dr. B, and was put back on the prednisone and at her suggestions started Mesalamine rectal enemas. Those are not fun. Not painful at all, but they are uncomfortable and time consuming. They help with bleeding ulcers but are most effective for ulcers that are in the colon close to your rectum. It took about a 3 months of slow but steady progress but by the end of February 2018 I was back to my normal. Just in time because I went to Europe for 2 weeks in March! I was scared that my symptoms were going to pop up, but thankfully I had no issues at all. Actually that whole spring I felt the best I had felt since my diagnosis. My energy levels, my mental state, my body, everything was the best it had been in so long. I had 2 1/2 months of basically normal, and then it all started to fall apart. The middle of May it crept up on me slowly at first. I started to feel a bit more fatigued than usual, and then my bathroom trips started to creep up. Not consistently, just random days where it could be an extra trip or up to 5 of them. By the end of May a new symptom had started, unbelievable pain in my abdomen. It felt like someone was kicking me in the gut and then grabbing a handful and constantly squeezing and releasing it. The first week in June I started to fall apart fairly quickly. Everything got worse all at once. The pain, the bathroom trips, blood in my stool, and I wasn’t sleeping. I had seen Dr. B in the middle of May when my symptoms had first started getting worse, and she had scheduled a colonoscopy for the middle of June. She thought my UC was acting up and I wasn’t responding to the medicine like I should anymore, but she wanted to make sure. My body had other plans.

The first weekend in June I ended up in the emergency room twice because of the pain. It had gotten so bad that it was all I could focus on. I wasn’t eating, sleeping, and drinking any liquids made me throw up almost immediately. The ER Dr. also thought it was my UC acting up and he had me schedule a follow up with my local doctor on Monday. The plan was just trying to keep me comfortable and healthy enough to get my colonoscopy done. My cousin was graduating that weekend, and by the skin of my teeth I watched her get her diploma but I couldn’t make it thought her grad party. I was mentally falling apart as well at this point. I couldn’t be there 100% for her big day, my body was failing me, I couldn’t work, and to be honest I didn’t know how much longer I could handle it.

I remember sitting in the room waiting for my doctor and wondering how I was going to make it another week. Dr. B had put me on prednisone back in May and it wasn’t helping anymore. I was scared and in pain and the one thing that had always helped in the past wasn’t anymore. Dr. S walked in, looked at me, sat down, and asked me if I was feeling any better. I told her no and burst into tears. Taking my hands she looked me in they eyes and told me she was putting me in the hospital. And not the local one. I was heading to Duluth. She had already called and got it all set up. I was pissed! Looking back I knew it was the right decision, but in the moment I panicked because I was scared that meant that I needed major help. I had flashes of needing surgery and of dying and had a full on breakdown in her office.

In fact I was going to the hospital so they could run more tests and get to the bottom of what was going on. Once I had calmed down and listened to her I agreed. I just wanted the pain to end. My Aunt drove me the two hours to the hospital, and while I was still upset and nervous I started to feel a bit better after getting all settled in. The staff went above and beyond to make me feel comfortable, and explained what the plan was for the next day or two. First thing first they needed a stool sample. Because of the pain meds from the ER I had actually managed to eat a bit the last day or two , and I was able to deliver just enough for them to run some tests. Blood was drawn for more tests. They also put me on a liquid only diet to try and help with the pain and keep me more comfortable. And then they gave me heaven in a pill. I was able to not feel the pain for the first time in weeks, and I being able to sleep for more than 30 minutes. Granted every 4 hours the pain came back, but I finally had a bit of relief.

The next morning the Doctors (3 of them) came in and told me I was being moved to my own room. Turns out I had tested positive for C-Diff. It’s a nasty bacteria that mimics a lot of the same symptoms as UC. It’s actually kind of common, but it is most common in people who are elderly or have used antibiotics recently. Neither applied to me. However having UC means my immune system isn’t at 100% so I am more susceptible to catching things. Yay me. Oh also managed to catch salmonella as well somewhere along the way. Luckily they were able to start me on the antibiotic that treats C-Diff and with in a couple days I was feeling better. I spent 5 days in the hospital, and ended up missing a week of work. My colonoscopy was cancelled because C-Diff inflames the colon and they wouldn’t be able to tell the difference between what was possible UC and C-Diff. I was on the antibiotic Vancomycin for a month and at the end was feeling pretty good.

For about 2 weeks. Then the pain and other symptoms started to creep in again. Dr. B and Dr. M put me right back on the antibiotic, but this time it would be for a month and a half. Once again being on the antibiotic I started to feel better, and by the end of treatment thought I had kicked it this time. By now it was the beginning of September 2018, but within 3 weeks I knew the C-diff was back. Sitting in Dr. B’s office I remember her telling me the next step was a Fecal Transplant, and my mouth dropping open. I didn’t know that was a thing, but it is becoming more common. The point is to put good bacteria back into your colon since the C-diff and antibiotics can wipe them out leaving the bad bacteria to run wild. The only bad thing is that insurance doesn’t cover the testing needed for this procedure, which came to about a $1000.

My sister agreed to be my donor. She had to give some stool samples that were sent to a lab to make sure she was a compatible donor. In other words that she didn’t have something that could make me worse. It took a few weeks, during which I was back on the Vancomycin, but the transplant was scheduled for October 23rd. It’s a pretty straightforward procedure. The morning of the transplant my sister had to give a fresh stool sample while I was being prepped. The sample was sent to the lab to be “cleaned up”. I was brought back to a room, put under just enough to make sleepy while they put a tube down my nose to the top of my colon, and pushed the sample in. I woke up and we were on our way fairly quickly. The next two days I felt awful and slept a lot, but then I started to feel like better. It was like my old self was back. For about a week. The transplant has a really high success rate so my first thought was that my UC was acting up now that I had finally gotten the C-diff under control.

I had to wait about a month to retest for C-diff, during which my symptoms slowly started to build up again. But no pain so I was positive it was just my UC. The test came back negative for C-diff and another colonoscopy was scheduled for the beginning of December. Dr. M once again preformed the procedure and he came in saying it looked liked a severe case of UC, and that at my follow up appointment we would look into switching my medications from the pills I have been taking to a biologic. Quick version means I would either be giving myself shots or getting infusions of medication though an IV depending on what type is right for me. He also said he took a small sample to test for C-diff again as a precaution. He was fairly certain it was just my UC but it was procedure. Two hours later he called me as I was walking in the door of my house to tell me that I had tested positive again.

My follow up appointment was 3 days later. One look at me and Dr. B told me I would be getting fluids. I had restarted the Vancomycin but only been on it 2 days. I also learned that I had lost 20 lbs in a little under 2 months. We also came up with a plan. I would do another round of Vancomycin, as well as start prednisone again. I also started Azathioprine which is used to help my medications work better from how Dr. B explained it to me. They are used more with biologic drugs, however since it seems like the UC and C-diff in my case have me trapped in a vicious circle. The UC is letting the C-diff run wild, and the C-diff is aggravating my UC. So we need to tackle them both at the same time. Normal procedure is to treat the C-diff first and then the UC, but I’m being difficult so they needed to try something different. Which meant starting to prep my body for a change to a biologic type of medication.

I was physically and mentally exhausted. My body completely wore out. I ended up missing close to 3 weeks of work over Christmas and the new year. I was also in a bad spot mentally. Depressed and feeling worthless. Stressed because I really couldn’t afford to miss that much work. I felt like the universe was punishing me. Thankfully as I started to feel better my mental state got better as well. I’m a believer in things happening for a reason. I started this blog because I was in a place where I felt like nobody was understanding me. I wasn’t connecting with people how I wanted to. I needed to get my story out in the way that I wanted. Will this change the world? Probably not, but for me this has changed my world and that is all that matters.

Being on the Vancomycin I knew I would feel better. I have to get regular bloodwork now that I’m on the Azathioprine and I’m happy to say I’m improving. I was able to go on vacation with my best friend and be excited about the future again. I ended the Vancomycin on Monday so we will see if that did it this time. I have a doctor appointment with Dr. B if you’re reading this on release day to see what the next step is. I’m feeling better but something is still just a bit off. My journey is still ongoing, but I’m ready for it.

Until next time

xoxo Becky xoxo

My diagnosis

My journey began back in early July of 2016. I did not have a “typical” build up of symptoms that is associated with UC. And to complicate matters I was in the middle of trying one of those green cleanse drinks that was popular that summer. You remember the ones that you bought from your friends who were selling the stuff all over Facebook? I knew several people personally who were using the stuff and raving about it, and wanting to shed a couple of pounds I too jumped on the bandwagon. It was an almost perfect storm of coincidences that would prolong, confuse, and make me question everything I thought was going on.

The first week was about what I expected. The mix was suppose to clean you out, so trips to the bathroom were up but it wasn’t anything too terrible. The next week though I started to notice that I was going to the bathroom at least 5 times a day. I was slightly concerned as none of my friends were going that much, but I shrugged it off to the fact that I just had a lot more that needed to be cleaned out. But the first time I noticed blood in my stool, I freaked and immediately Googled it. AHA hemorrhoids! It made sense in my head. I had been using the bathroom way more often in the last two weeks, and my body was pissed off at me. So I stopped drinking the cleanse figuring in a couple days, maybe a week I would be back to my normal self.

Instead the bathroom trips got more frequent. I found myself in the bathroom upwards of 8-15 times a day. A new symptom popped up as well, a sudden and urgent need to go. I was running to the bathroom all day and night. I was lucky if I was sleeping more than 2 hours at a time. I had all but stopped eating because the less I ate the less there was that needed to come back out. Yet I still wouldn’t go to the doctor, I was too embarrassed. I had convinced myself that I had done this to my body and eventually it would all go back to normal.

By the end of August I was reaching my breaking point. I had lost about 20 pounds and had no appetite. I was barely sleeping, maybe averaging 3-4 hours a night. And my energy levels were none existent. I would go to work and make it through the day on pure grit and determination. However the second I got home I would lie down and not be able to move. I wasn’t living at the point, just surviving. It still took me not being able to make it the 30 feet to the bathroom one August morning to finally admit that I had a serious problem. That is the most humiliating feeling in the world. You feel like your body is giving up on you, everything is giving up on you. In tears I finally called my doctors office.

Luckily they had an opening, and while it was with a Doctor I had never met (My primary Doctor had no openings that day) I was relieved when the nurse told me that he had quite a bit of experience in dealing with diarrhea and gut problems. Dr. S was a nice man, who at the time reminded me a bit of what Santa Claus should look like. A big smile and lots of bright white hair and beard. He patiently listened to me as I told him story, and showed him the product I was convinced was somehow responsible for all my pain and suffering.

“You never had any symptoms before this?” He asked me and at my blank look of confusion he continued, “Never a couple days of diarrhea and blood in your stool in the last few months or the last year?” I assured him that aside for the occasional bout of diarrhea here or there in my 29 years I had never had blood in my stool before. Or the complete loss of control of my bowels. He pretty quickly dismissed the cleanse after reading the ingredients. I was in complete shock. I was so sure that something in there had started all this, and there he was telling me that it was all some sort of sick coincidence? That was the only thing in my life that had changed, and everything had gone wrong after I had started that cleanse.

Dr. S could tell that I didn’t believe him, and to his credit he was extremely patient with me. He didn’t tell me I was wrong, but gently told me again that as far as he was concerned what I was describing was more serious than what that cleanse could cause. Add in the fact that I had stopped the cleanse weeks before and the symptoms had gotten worse not better. That night I had blood work done, a kit to take a sample of my stool, and a prescription for prednisone. I was still skeptical, but at least I felt like I was on the path to getting some answers.

Two days later I was back sitting with Dr. S. I’ll be honest I don’t remember exactly what he said when it came to what the tests meant. Certain things were high, my body was fighting some major inflammation, and what it all came down to was that I needed a colonoscopy. Not what I expected to hear, but I did want answers and if that was how I needed to get them then I was sticking a camera up my bum. We went ahead and scheduled the colonoscopy for the following week at my local hospital. I’ll do a more detailed post about colonoscopies at some point in the future. For now just know that they really aren’t that bad. The doctor who did my colonoscopy came in after the procedure and told me flat out that my colon was so inflamed that he only went about a third of the way before stopping because every time he touched my colon it would start to bleed. “You need to see a specialist, but I am almost positive that you are suffering from Ulcerative Colitis.”

I wondered how I had never heard of this, and why I hadn’t come across it before. Looking back it’s because I hadn’t looked hard enough. I had been so certain that the cleanse was the culprit. Reading what I could online I was torn. Yes my symptoms fit, but at the same time every account I read talked about how there had been a slow build up of symptoms over months or even years. Still a bit lost all I could do was wait until my appointment with the specialist in September.

Meeting with my new Gastroenterological Doctor was basically a repeat of my first doctor appointment. Doctor B. listened as I explained my timeline of symptoms, agreed with Dr. S that the cleanse had nothing to do with what was going on (I was still skeptical even at this point), and told me flat out that while she wanted me to do another colonoscopy. Since my colon was so inflamed however, we were going to wait a few months with the hope the medications would do what they were suppose to and lessen the inflammation. However looking at the pictures of my colon she was comfortable in telling me that I did have an Irritable Bowel Disease. Whether it was Ulcerative Colitis or Crohn’s was the next hurdle. An MRI a few weeks later showed that it was just my colon that was being affected so that ruled out Crohn’s, which affects the whole digestive tract. By the end of September 2016 I finally had my official diagnosis: Ulcerative Colitis.

While I had an official diagnosis that was just the beginning of what has become a roller coaster of a ride. Until I could have a full colonoscopy we didn’t know how much of my colon was being affected or how severe it really was. My symptoms were actually considered mild so there was hope that we could get it into remission pretty quickly. The prednisone seemed to be helping, but being a steroid it’s not something you want to stay on forever. She prescribed Sulfasalazine, which she stated wasn’t her ideal first choice as it can be a bit harsh on some people. However it was the first medication that is usually prescribed, and the one that my insurance would cover. I still was a bit confused and overwhelmed, but I had a diagnosis and a plan.

To this day I’m still not 100% sure if that cleanse had anything to do with jumpstarting my UC. Every doctor I have talked to since agrees that while it was strange timing, nothing in it has been linked to UC. I don’t think it caused my UC. I’m fairly certain it’s been lurking behind the scenes for a long time, but part of me still wonders if it didn’t speed things up drastically. In the long run I would have still ended up here, as someone who has a chronic illness.

This post ended up being longer than I intended (Sorry!), but looking back I went through a lot to get to this point. Next time I will try and bring you all up to where I sit currently, and then after that start tackling some other things that I’ve had floating around in my head.

Until next time

XOXO Becky

PS: If you have any question, comments, or topics you’d like me to discuss please leave me a comment.

Changes

I really thought that today’s post was going to be about my diagnosis and the story of how I got to UC. But sometimes life has a way of redirecting you, and I’m choosing to go with the flow and write about something that has been on my mind for bit.

I haven’t been truly happy in awhile. It’s scary to write that knowing I’m going to be posting this for people to see, but it’s the truth. Yes a majority of it had to do with my Ulcerative Colitis ups & downs and other health problems. 2018 was a shit year (pun intended). Deep down I knew there was more going on, but it was easier to push it back and focus on dealing with just being sick. I truly thought that if I got my health back on track then everything else would return to normal as well. Yet as the year dragged on the feelings got stronger even when I went through spurts where my health was basically back to normal. And that scared me. Deep down in my soul scared me. Why couldn’t I just be happy?

I’m the type of person who doesn’t like change. Change is a very important part of growth as a person, and believe me I am so glad I’m not the same person I was in my teens, early, or even mid-twenties. But somewhere in my late 20’s I felt like I had reached a place where I was happy with where I was in life. I liked my everyday, normal, boring, doing basically the same thing over and over again day. I found comfort in it. Is that healthy? Yes to a certain point I think it is as long as you love what you do. I however was starting to dread the routine. Being sick made everyday tasks harder, but it the beginning I would feel a sense of accomplishment of being able to make it though a work day. I took pride in my work. Do I have a fancy job, no. I have a very blue collar job but it is an important one and I like to think that I do it pretty damn well. But somewhere along the way I’ve lost that spark. Not just in my job, but in life in general. Even family functions became tasks that I couldn’t bear to face. Each day the weight of what I was feeling was growing heavier until I felt like I couldn’t breathe. I started to have anxiety attacks where my mind would race to the worst case scenarios for every situation. My personality is a worrier by nature, but these thoughts and feelings were so much more than anything I had ever dealt with before. I knew things needed to change, but I couldn’t force myself to do or say anything out loud.

I didn’t want to rock the boat. If I brought up what I was feeling, and that I might possibly want to do something different with my life how was that going to affect everyone around me. The people I work with are my family. I spend almost more time there then I do at home. At home I kept to myself. I would just go to my room the second I got home. I stopped going out unless I absolutely needed to. I found excuses to not attend events or meet up with friends. I didn’t want to let anyone down just because I was feeling out of sorts. So I blamed it on being sick. It was just aggravating my emotions and making me think things were worse than they actually were. I was overthinking, over-worrying, over-everything when it came to my day to day life. Slowly the people around me started to notice that something in me had shifted. Blaming it on being sick appeased most of them, but there were a few who refused to let me keep on hiding behind that for too long.

Long chats with my mom and a few close friends helped me realize that I needed to face the music. I wasn’t happy with anything. I had to face the fact that I was someone who had changed. In all aspects of my life I had changed. I didn’t love where my life was anymore. What scared me more was that I had no idea where I wanted to go either. I wasn’t happy but I didn’t have a plan. Admitting to myself at first that I wasn’t happy and had no idea what the hell I was going to do was the first step as crazy as that sounds. Saying it out loud broke something in me. I laughed and cried on my bathroom floor because saying it out loud made me feel freer than I had in months. I was still terrified but the weight was gone. Slowly I built up the courage to be more honest with a select few people and tell them exactly how I was feeling regarding everything in my life.

The response has been overwhelmingly positive. This blog is a result of opening up and trying new things. And though it’s still young this has brought such happiness to my life. The ability to write, connect with people, and whatever else this space might do in the future has fulfilled a part of me that I didn’t know I was missing. I’ve also been more in tune listening to my gut. When things don’t feel right or that voice in the back of my head telling me that change is needed, I’m going to listen. I’m looking into doing different things in all aspects of my life, and while it is still extremely scary I can say that these last few weeks have opened my eyes. I’ve taken small steps that might lead to new opportunities and challenges, and it feels right. I’m ready to live my life in a way that makes me happy. I might not have all the answers or even a solid plan in place, but I’m ready to see what new changes are in store for me.

Until next time

xoxo Becky

Hello and Welcome

I figured a brief and dorky introduction to me and what Ulcerative Colitis is would probably be a good starting point before I jump into more in depth topics detailing my journey with UC.

Once again my name is Becky, and I have been living with Ulcerative Colitis for almost 2 1/2 years. I like to brag that I am essentially a little old lady living in the body of someone who is technically in their early 30’s. Meaning that I like to stay in drinking tea, reading books, watching documentaries, and spending as much time with my family as possible. I’m lucky that both my sisters, their families, my mom and most of the family on her side all live within 15-20 miles of each other. I love living in my little community along the North Shore of Lake Superior. I’m sure as I go along you guys will learn way more about me than you could ever want so I will leave you with just this small bit for now.

Sunrise over Lake Superior. Not a terrible view to wake up to!

So what exactly is Ulcerative Colitis? Technically Ulcerative Colitis is a long-term autoimmune disease that causes inflammation and ulcers in the colon and rectum. There is no known cause of UC, and there is no cure. Medications and treatment plans can put the disease into remission, sometimes for years, but you will never truly be free from this disease. Symptoms can range from mild to extremely severe and include abdominal pain, diarrhea (sometimes mixed with blood and mucus), an urgent need to go, and occasionally you are unable to control your bowels. Weight loss, fever, fatigue, and anemia can also happen. Also since we are dealing with inflammation in the colon sometimes UC can bring on joint and eye inflammation as well, you know just for fun. The risk of colon cancer goes up just by having this disease. If the case of UC is severe enough removal of part or all of the colon is sometimes needed.

So some pretty serious, scary and humiliating issues. I will do a post on my symptoms and how I got to my diagnosis next time, but for now just know that those are just the physical symptoms of UC. There are a lot of things mentally and emotionally you go through as well, and it can be a very dark time. However, I want to stress that having UC is not a death sentence. Yes it takes time, patience, and a lot of ups and downs but you can live a “normal” life. I’m still figuring this part out, but for the first time since I was diagnosed I feel like I am finally in a good head space. I’m still dealing with a lot of issues, but I feel genuine hope that no matter where this disease is going to take me I’m going to be fine. More than fine. I’m going to thrive, grow, learn, and be a better person because of it. This blog is going to be my record of that and I’m excited to have you along for the journey as well.

Until next time

xoxo Becky

The Journey Begins

I won’t lie, I am slightly terrified. This has been something I talked about doing for over a year. What better time than a New Year to finally take that plunge.

Hi All! My name is Becky and in 2016 I was diagnosed with an Inflammatory Bowel Disease (IBD) called Ulcerative Colitis. My intention with this blog is to detail my journey with Ulcerative Colitis. How it affects my life, what it teaches me, and any surprises that pop up along the way. I will do posts on how I was diagnosed, my symptoms, my medications, among other topics. However since this is about me living with UC I’m not going to pigeon hole myself into only writing about UC. Which is why I went with Bits by Becky 🙂 so whatever random bits I feel like sharing will still kind of make sense. I’ll be honest I have no idea where this journey will take me, but I hope that it lets me connect and reach people on a level I haven’t been able to as of yet.

Also please bear with me as I learn how to do this blog thing. I am new to this, hence why I have been hesitant and its taken me so long to start. As I get more comfortable and learn a bit more to make this look better and seem more seamless. So please feel free to ask questions, give feedback, offer ideas for future posts, and reach out if you or someone you know has been affected by IBD.

Take care friends and I will see you soon

xoxo Becky

Do not wait until the conditions are perfect to begin. Beginning makes the conditions perfect — Alan Cohen