Inflammatory Bowel Disease Isn’t Just About Pooping

IBD Isn't just pooping

“IBD just makes you poop your pants.”

Have you ever had someone tell you that? I have. It was a pretty frustrating(infuriating?) moment. Because IBD is so much more than just shitting.

Now, I can only talk about this from what I have experienced. Everyone with IBD experiences problems with IBD differently. My doctors don’t know which one I have. For now, I’m ok with this but I’m sure that at some point things will come to light as to which one I do have.

How is IBD more than pooping your pants?

It’s the urgency. It’s the fact that your body will let you know that you have literally two seconds to get to the bathroom or your going to be shitting yourself. IBD doesn’t care that you’re not near a bathroom. All your body knows is that it needs to go right fucking now and there isn’t any way to stop it. No matter how hard you try.

It’s the pain. It’s wanting to scream your lungs out because you hurt so much. It’s feeling like your intestines are trying to rip themselves from your body. It’s the fact that you don’t want to walk because the abdominal cramping is so bad and your ass is that raw. It’s the joint pain from either the medications that you’re taking or because it’s an extraintestinal manifestation of IBD.

It’s the dehydration. I’ve been so dehydrated that I’ve had to spend 3 days in the hospital and receive 10L of IV fluid to get back to where my fluid levels should of been. I was literally shitting myself to death. It took two weeks for me to go from a healthy 24 year old to a very sick person who lost 8 pounds in the span of two weeks. As fast as I was taking food and water in my body was sending it right back out.

It’s the fatigue. The fatigue can be the worst at times. You’re so exhausted from your body attacking itself. And from having iron deficiency anemia that it’s all you can do to get through work. Let alone get things around your house taken care of or go grocery shopping. You get exhausted after having a bowel movement. No matter how much  sleep or rest you get, you’re still tired.

It’s the side effects of your medications. And let me tell you, those side effects can be terrifying. There are times the side effects of your medication are scarier than the disease itself. But, you have to decide whether those side effects are worth the risk or if you just want to continue to have your IBD run/ruin your life. There also aren’t a whole lot of medications to treat IBD. There are also times that people will find a medication that works(like Humira) and then build antibodies for it and then they have to find something else that works.

It’s the horror. I’ve seen stuff come out of my body that has terrified me. You know it’s not normal, but there’s nothing you can do about it. Seeing that stuff can start to make you feel kind of hopeless. You wonder if you’re ever going to get better.

It’s the depression. You realize that when you have this disease that you will be dealing with it for the rest of your life. This is what you get to look forward too. Yeah, you can be in remission, but you also feel like a ticking time bomb. You don’t know when your next flare is going to be or how bad is it going to be. You don’t know if your medications are going to fail or if your going to have such severe side effects that you have to stop taking them. You don’t know if your going to have to be hospitalized again. You don’t know if your IBD is going to get so severe that it requires surgery.  All of these things weigh on you.

It’s being invisible. With IBD, you don’t look sick normally. Just because I look healthy doesn’t mean I am. I could be having a really bad day when it comes to symptoms but I might just look tired. It’s not obvious that this disease is wreaking my body. If I could show you what my colon looked like during my bad flares, I’m sure that things would be different.

It’s the weight fluctuations. This can go both ways. You can be gaining weight because your on Prednisone and it makes you hold onto water. Or you could be having so many bowel movements a day that your body can’t keep up digesting and absorbing the nutrition it needs and you start to lose weight. You can also lose weight from not being able to keep up with the fluid intake that your body needs while in an active flare.

These are the things that I deal with as someone who has Indeterminate Colitis. This is a look into my world and into my head. These are the things I deal with and think about on bad days. I do my best to not think about these things on my good days. But it’s always there. Lurking in the back of my mind.

On my good days, I do my best to hold onto the good. To enjoy life. Because I never know when things are going to take a turn for the worst.

I Had a GI Appointment Today

I got to meet with Dr. M today. It was my first time seeing him and I really like having him as my new GI. He took the time to answer all of my questions and even write me a letter for flying with my Humira. I have to fly next month for work and I wanted the letter just in case the TSA decides to be turds about it.

As of right now, as long as my health stays the way it is or continues to improve, I don’t have to have another colonoscopy this year! My doctor isn’t planning on doing another one for another 8 years unless something happens. And he wants to do it then to check for Colorectal cancer. So, fingers crossed I don’t have another flare anytime soon. He did say that while I’m on Humira we should be able to manage flares with it. He’ll have me do a dose a week for a few weeks and then go back to the bi-weekly.

I also get to go off of the budesonide in October. I’m so happy I get to go off of the steroids. Hopefully it goes well and I don’t go into a flare. But I can’t wait to be off of it.

He does want me to get the flu vaccine but I can’t have the live virus. He said that the pneumococcal vaccine would be a good idea as long as it isn’t a live virus either. I’ll be talking to my GP about this when I have my yearly checkup done in a month or so. If she can just do it at the office that would be awesome.

I did decide to get the lactose intolerance test but I didn’t know that I had to fast to have it done. I thought I’d be taking a kit home or something but I guess they’re doing a blood draw. So now I have to drive 1.75 hrs to the closest lab facility for that hospital so I can get that done. So now I need to find time for that. I also got another CBC panel and iron panel ran so hopefully all of those numbers come back good.

So, I may be heading into remission. If you’re wondering what that means, here’s some information from UCLA:

For patients with Crohn’s disease or ulcerative colitis, your disease is either active or quiet.  When your disease is in an active state, it is causing symptoms such as diarrhea, pain and weight loss.  At the opposite end of that, your disease is quiet, under control and in a state of remission.

I don’t know how quiet IBD has to be for a patient to be considered in remission. I still have urgency every so often. And some abdominal pain. But I don’t have any blood in my stool and I’m not going to the bathroom 10 times a day so I got that going for me. Maybe remission varies from patient to patient? And just to be clear for people who aren’t familiar with remission when it comes to IBD, it does not mean I’m cured. It just means the disease is quiet and not making me hate life.

The one thing that’s really nice about feeling better is that I’m starting to become more active again. I’m working on going to the gym more and I’m able to do more chores around the house. I’m so happy to be doing better but at the same time I worry that it won’t last very long. All I know is that I need to take advantage of this time because I don’t know how long it will last.

Dr. S is still leaving my diagnosis at Indeterminate Colitis. My latest colonoscopy didn’t show any granulomas and because I don’t have any fistulas he can’t really say whether I have Crohn’s Disease or Ulcerative Colitis. And it doesn’t help that my inflammation has been bouncing around. Ah well, if I have to go the rest of my life without a confirmed diagnosis I think I’ll be ok with that.

Trail and Error

I hate trying to figure out what’s going to make my stomach upset when it comes to food. So far I’ve had pretty good luck when it comes to food but the other day for lunch I had Pad Thai and holy shit was that a mistake. I don’t think I’ve ever been in so much pain from eating food. I had abdominal pain the whole night and then yesterday I had way too many BMs for comfort. Now I’m feeling tired, slightly dehydrated, some abdominal pain and I still have a low grade fever. I called the GI practice about it and I’m waiting for someone to call me back. Not sure who it will be since my regular doc isn’t in today and will be back tomorrow.

Decisions Decisions

I feel that I have reached the point where I need to decide what my next move is. The budesonide isn’t working anymore. If it ever was. But anyways, my symptoms are getting bad again. The abdominal pain is back, along with my stools being messed up and let’s not forget the blood.

This has been going on for a couple of weeks. I was hoping that it would go away. Or get better. Something besides slowly getting worse. Currently I feel like someone is stabbing me in the abdomen. It’s also been hard to get going in the morning for work. It can take an hour or so before my stomach decides it’s awake and I never know how bad the episode will be when I get up in the morning.

So now I need to decide if I’m just going to call my GI and just go on the immunosupressors or if I want to go and get a second opinion. I’m leaning towards the second opinion just in case the other GI has seen a case like mine before. It’s worth a shot at least. I am worried about going on the immunosupressors especially since I work in a hospital setting. I’m not really sure how that would work. I may just have to wear gloves and a surgical mask.

I’m still waiting to see the final results from my insurance company. From what I can find out online I’m going to pay a much smaller amount. It looks like they’re paying for more of my hospital stay and they covered part of the Prometheus test. Now I’m just waiting for the updated bills to show up to know for sure. But if I do owe much less that will be a huge weight off of my shoulders!

Maybe Ulcerative Colitis, Maybe Crohn’s Disease?

I had another appointment with my GI today and I found out that they’re not sure if I have Ulcerative Colitis(UC) or Crohn’s Disease. My disease is presenting itself kind of weird which is why they’re not sure what I have. The type of inflammation I have is consistent with UC but how the inflammation is presenting itself(patchy and not continuous) is more consistent with Crohn’s. So even though the Prometheus test says I have UC I very well may have Crohn’s since it’s not 100% accurate. I also don’t have any granuloma’s so this also makes it a little harder to determine which one I have. My doctor feels that there’s people who fall in between UC and Crohn’s so I very well could be one of those patients.

There was also a bit of a monkey wrench thrown into my treatment plan this past weekend. Well actually, this started Friday morning. I ran out of prednisone and I had been trying for a week to get it refilled. For whatever reason the electronic refill stuff wasn’t making it to the doctors office. So I called the office to see if my doctor was in so I could get my refill taken care of and my doctor wasn’t in. The receptionist said that my refill order wasn’t even on my file even though the pharmacy told me that they had sent it over electronically five times. I asked if another doctor(the one who did my colonoscopy) could approve the order and I was told no because he didn’t order it.

So at this point I was pretty upset. All I wanted was my damn prednisone. It’s not like I was trying to get narcotics or anything. I just needed my meds that have been helping to control my inflammation. I went to the pharmacy after I got off the phone with the doctors office and told them that they hadn’t received the refill order. They printed out the order, said that they were going to write a note on it that I was out, and manually faxed it over to the doctors office and it still wasn’t refilled. So today I told my doctor what happened and she was not happy. She said that the doctor who did my colonoscopy could of approved the refill or even the on call doctor. She said that she’d be having a talk with the receptionists since IBD patients can’t go without their prednisone.

Because of all this I almost got started on the Imuran today. The new treatment plan consists of me being back on 15mg of prednisone for the next 7 days and then I’ll be stepping down 5mg every 7 days after that until I’m off of it. I’ll still be on the budesonine for now. I got a script filled for Imuran and if my abdominal pain doesn’t go away I have to start that. I really didn’t want to start that while I was in Ohio. My doctor also thinks that my symptoms may be under control with the steroids. This is because of where my abdominal pain was while I was at the office. It was more on my side than actually my abdomen. So now I’m feeling confused about the abdominal pain I have been having. I’ve been hunching/leaning to my left side because I’ve been having pain but now I don’t know if it’s because of my IBD or something else. I definitely need to get it figured out within the next week or so though. Although this could be good news. Maybe I won’t have to go on the Imuran.