My Indeterminate Colitis Story – World #IBD Day

Hello, everyone, my name is Mackenzie. Some of you may know me as KenzieIBD. I am the creator of this blog. I’ve had bowel issues for most of my life. I remember in 5th grade going to the ER for constipation and then in high school, I went and saw my PCP about blood in my stool. No one ever really thought anything of it. Including myself.

It wasn’t until November of 2010 that things really started getting bad. I started having very bad constipation with blood in 2010. Bowel movements became extremely painful and I’d be going to the bathroom for hours struggling to have a bowel movement. And once things started it was like my body hit the evacuate button and I couldn’t stop going to the bathroom until everything was out of me.

I went and saw my PCP for this problem. He prescribed me a bowel relaxer called Librax that helped some. A few months after that I ended up having my first colonoscopy on March 18th, 2011 because I was still having problems. The doctor who did my colonoscopy was a general surgeon if I remember correctly. The results came back as having a mildly chronically inflamed rectum. Now, knowing what I know, you’d think that my doctor would have thought of IBD but he didn’t. He said that the next step would be to see a GI. My doctor also should have pushed me to go and see an actual GI. He never had a referral letter made up or anything. He also didn’t prescribe any medications for it. No enemas. No 5-ASAs. Nothing.

I should not have waited to see an actual GI. I was going to college in Columbus, OH at the time and I would have had access to The Ohio State Medical Center and I’m sure I could have gotten great care there. Or even gone to Cleveland Clinic. Anything besides allowing myself to suffer what I did.

The summer of 2011 I went into my first flare. It was pretty bad. I lost around 11 lbs at my worst. I had terrible bouts of diarrhea every other day. I thought it was all related to my mildly chronically inflamed rectum and didn’t go and seek more care. I was in my last semester of college trying to juggle my classes, senior project, work and my internship. I really should have made it more of a priority but I didn’t. I just wanted to get college over with.

The diarrhea I was having eventually resolved on its own thankfully. I didn’t see another doctor about my gut problems until the fall of 2012. This was after I moved to Oregon and my constipation had started up again. The PCP that I found recommended me to a GI doctor after I told her what was going on and what my old PCP had checked out already.

My new GI doctor said that it looked like I might have the startings of IBD. She wasn’t sure if it was Crohn’s Disease or Ulcerative Colitis. She didn’t want to do a colonoscopy to me since I had already had one. She gave me a round of Canasa and told me to up my fiber intake along with taking MirLax. This helped for a while. Some of my symptoms went away and I lived my life for the next few months.

In the summer of 2013, I started having problems again. I had pretty much-lost control of my bowels on the way home from work and I was extremely gassy and burpy in between bowel movements. I went and saw my GI again about all of this. She decided to test me for a fructose malabsorption and the test came back positive. I went and saw a dietitian about it and got started on an elimination diet. I started feeling much better and was doing a lot better for a few months. I thought that things were starting to be under control. Boy was I wrong.

In the fall of 2013, I really started having bad constipation. I would go like every 5-9 days at times. I remember waking up in the middle of the night to have what I called an “episode” and just going to the bathroom all night. I almost woke my now fiancé up in the middle of the night to take me to the hospital. I had no idea what was going on until I started having a bowel movement but it felt like someone was trying to rip my insides out.

I went back to see my GI after I was having these problems and she decided that we needed to do another colonoscopy. I ended up having this colonoscopy in December 2013. The GI that did my colonoscopy said that it looked like I had left side Ulcerative Colitis but that the inflammation was patchy. He decided to start me on Lialda. After that, everything went to hell.

A lot of people do well on 5-ASA drugs. I think my GI said that about 90% of people who are on it do well. I am not in that 90% group. I fall in the 10% group of people who get extremely ill from it. The side effects mock a flare, unfortunately. Which is what my GI thought was going on and doubled the Lialda that I was on. I lost 8 lbs in 2 weeks. I was having 10-12 bowel movements a day. Food was rushing right through me. I could sleep. It hurt to eat. It hurt to go to the bathroom.

It got to the point that my shoulders were locking up because I was so dehydrated. And all of this was happening around Christmas and my GI was out of the office when I started getting really bad. Things got to the point that I told my fiancé that we needed to go to Urgent Care because something was wrong but I didn’t know what. I just knew that I needed help.

So my fiance took me to Urgent Care and I saw one of the doctors there. I told him everything that was going on. He ordered some blood work and my WBC count was through the roof. Normal is 4.5-10 and mine were at 23. Because of the neck pain, this doctor was convinced I had meningitis so he wanted me to go to the ER.

I’m very glad that I went to the ER. I’m even more glad that the ER doctor figured that I didn’t have meningitis and that something else was probably going on. After a multitude of testing, I ended up getting admitted to the hospital, with dehydration. Over the next three days, I would end up getting around 10L of IV fluid. While I was in the hospital my potassium ended up getting low so on Sunday I had to get a couple of IV bags with potassium in them and I also had to take potassium pills.

I got released on Monday after being in the hospital since Friday night. I ended up taking the rest of the week off from work and I’m glad I did. I needed the extra time to recover from being so sick. The Monday I got released from the hospital I also had to see my GI doctor that day. It was decided that I would be on prednisone for a while and then I would be bridged over to budesonide.

The I did not have a good time on the prednisone. I had all of the side effects: night sweats, acne, insomnia, weight gain, moon face, mood swings, hunger, etc. I eventually managed to get bridged over to the budesonide and I did ok on that for a month or two. When my symptoms started to get worse my GI decided to put me on Imuran.

I only lasted for about three weeks on Imuran before I developed an allergic reaction to it. The first couple of weeks that I was on Imuran my white blood cell count steadily increased. I was getting weekly bloodwork done to check to see how my body was handling the Imuran. I called my doctor the third week because my symptoms had gotten very bad again. I was running a low-grade fever and was going to the bathroom 10+ times a day.

She decided that because we didn’t know why I was flaring that I was going to get started on two different types of antibiotics in case I had CDiff and that I was going to get a stool sample done. Before I went on the antibiotics I had developed a rash on my abdomen. I didn’t think much of it. After I started the antibiotics the rash spread all over my body. I made the decision to stop taking the Imuran and the antibiotics. I called my doctor to explain to her what happened and she decided that it was time for another colonoscopy.

I never again want to have a colonoscopy while I’m having a flare. I did not feel that good when I woke up. And my doctor’s bedside manner was atrocious. He decided to tell me that removing my colon would cure me of Ulcerative Colitis(he was going to change my diagnosis from Indeterminate Colitis to Ulcerative Colitis even though I still had skip lesions in my colon. I told him that it won’t cure me of Ulcerative Colitis and he asked me if I want to live like this for the rest of my life. Well, no, I don’t want to live like this but I don’t feel that removing my colon will cure me of UC. I will still have an incurable autoimmune disease. Removing my colon would only remove the part of my body that my immune system is attacking the most.

Because of what my doctor said I decided that I would be finding a new GI and getting a second opinion. I was able to get into a GI office that is about 2.5 hrs from where I currently live. I tried to get into a GI office that is closer to where I live but, unfortunately, there are only two GI offices in town. One of which isn’t accepting new patients and hasn’t been for a while.

When I went to my new GI office for the first time I saw a nurse practitioner. She was pretty awesome. It was nice to have a doctor take the time to listen to everything that had been going on. She was the one that figured out that I had iron deficiency anemia. I had been exhausted for weeks and at times, I was having problems breathing.

While I was at that appointment she went and asked a GI doctor his opinion on my symptoms and they agreed that my diagnosis should stay Indeterminate Colitis. It was at this appointment that I decided I wanted to switch to this GI practice.

After my colonoscopy, my old GI decided that I needed to go on biologics. They had wanted to get me on Cimzia because I’m a young and of child bearing age. My insurance eventually denied it because it’s not a “preferred” medication. I had to be on Humira or Remicade. So my new doctor had to get the paperwork started for Humira. My new GI office decided that I should be under a GI doctor instead of a nurse practitioner. I’m not really sure why they decided that but I’ve been fine with that decision. I really like my current GI.

The Humira worked well for a while. It took me a few weeks earlier this year to figure out that it was only working for 6 or 7 days before it started wearing off. I’m currently on Humira weekly. And I hate it. I hate the fact I have to have a shot once a week to keep myself functioning. My fiancé has to give me the shot because I now have a mental block when it comes to doing it myself. But it works for the most part. It doesn’t work so well when I’m stressed out.

Things that I’m working on improving is meditating to help me learn how to deal with stress and how to calm myself down when I feel agitated or angry. I’m also working on going to the gym more(not succeeding quite yet). This was helping me to feel better and calmer but it’s hard to go when you’re tired or not feeling well.

If there were a few things I could have people take away from my journey with IBD it would be these:

  • Don’t be afraid to get a second opinion if you feel you need one. It never hurts to have someone else look at your case.
  • Make sure that you know what the side effects of your medications are. It’s possible that they mimic a flare.
  • Let people help you when you’re not feeling well. It’s hard asking for help but it’s nice to have it when you need it.
  • Find your support group. It’s nice to know that you’re not alone.

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