Humira feels like a weekly reminder that I have an incurable autoimmune disease. That this is what my life is like now. That this is what I have to look forward to. And at times it’s depressing. I wish I didn’t have to be on medications but I know that this medication is my best option right now.
I’m not one of those people who’s goal is to get into remission and go off of my medications. My medications are the reason why I’m in remission. I don’t what to know what would happen if I had to go off of the Humira. I’m sure the results would not be good though. I also don’t want to risk building up antibodies to this medication. Once that happens I won’t be able to go back on it and that’s not work the risk to me.
It’s hard though to deal with the weekly shot. For me it hurts a lot. I can’t wait for Humira to have a sting free option. Some people who take this medication don’t feel that much of a sting but for some reason I do.
Do you have any medications you dislike? Why do you dislike it? Do you have any medications that you do like?
On paper I have Ulcerative Colitis but my doctor has mentioned a couple of times that I probably have Inderterminate Colitis. So that’s pretty much what I identify as. There also isn’t a Inderterminate Colitis diagnostic code so that doesn’t help either. There was also that one time I had a pathology report come back and say Crohn’s Disease 🤷♀️ And the Humira is currently working fairly well and there is mucosal healing in my colon and rectum, so it’s hard to say for sure which IBD I have.
But at the same time there is a lot of speculation in the GI field that IBD is a spectrum disease. The most important thing is that I like my GI doctor, the medications are working and we know where my disease is most active.
Why is IBD advocacy so important?
So people know that they are not alone. Having a chronic disease can feel so isolating when you are first diagnosed. It is so helpful to meet people who know what you’re going through. And can help you navigate a very hard time in your life.
Describe a socially awkward moment with IBD.
Oh where to begin?
There was this one time on Facebook that I got told that I needed to read the healing word of God and pray more to cure myself.
Which was extremely frustrating because I’m not an avid Christian (I’m more or less agnostic) and my faith has nothing to do with my illness. Shit happens and I somehow got this incurable disease through no fault of my own. And praying to God to get healed isn’t going to cure me. Some scientist some day will find a cure and that will be what I need. Will it be through delivine intervetion? Who knows!
But telling someone that they need to read the bible more and pray more just blames the person who got ill and victimizes them. People who are chronically ill need compassion and empathy. Not someone to tell them where they went wrong in life.
What common stigma do you run into?
That it’s not that serious of a disease. That it just makes you poop. That it’s just a stomach ache and some diarrhea. That I don’t look sick.
All of these stigmas are so incredibly frustrating. There are people who have died from complications of this disease. IBD is so much more than pooping and a stomach ache. And I don’t look sick because I’m good at faking being well. And it’s my colon and rectum that are affected, not my face.
These stigmas are just a few of the very important reasons we need to raise awareness for IBD.
What do you want other people to know about IBD?
So many things.
That at times it is a hard disease to live with. But along the way you will meet some pretty incredible people who will become some of your best friends who will be there for you no matter what. If you are able I highly recommend going to a retreat for people with IBD. It will be an amazing experience for you and you won’t regret it.
That this disease affects me in so many ways. And just because I don’t look sick, doesn’t mean that I’m well.
The more I work and the more I do the more tired I get. But it’s not the same type of tired as everyone else. I fight my body every single day. It’s exhausting.
I had an appointment with my GI on August 30th. I’m glad that they were able to get me in sooner than November! We really needed to talk about what’s been going on. It’s hard to do that over the phone at times when I have to go through Dr. M’s triage nurse.
As of right now, I have a colonoscopy scheduled for October 12th. This time, I have to prep for it in a hotel, though. Which I’ve never done before. I have gotten some tips from my fellow IBDers on Twitter so I will make sure to share those things with you when the times comes!
I’m not particularly excited about this colonoscopy. A month ago I was pretty dead set on not having one but I’ve resided to the fact that I probably need one. I haven’t had a scope since May of 2014. And Dr. M has yet to do a colonoscopy on me. So it’ll be good to give him an idea of what my colon looks like.
I will be staying on prednisone for now. I got to go down to 30mg from 40mg! Which is nice. I may eventually switch over to budesonide. I think we’re waiting for my labs to come back before we decide that.
The Prometheus antibody test will be done on September 10th. They’re actually having a mobile lab come to my house to take my blood. Which is pretty neat. As of right now, my insurance doesn’t want to pay for the test. They think it’s just “investigative” and that we won’t get any good information out of it. But, don’t you want to know how well it’s working? Although, at the same time. It would actually be cheaper for me for the test to be denied. I’d have to pay more if the insurance did decide to help pay for it. Because of how my insurance plan works.
So, we will see what happens. And I will continue fighting through this abdominal and joint pain that I’m having. These lab results can’t come back fast enough!
I had my first Rheumatologist appointment on August 18th. I decided that I probably needed to go see one in July. My joint pain had gotten to the point where it’s been unbearable some days. So last month I went to the day clinic at my doctor’s office and had a bunch of labs ran along with some hand X-rays to see what was going on. Everything came back good(except for my white blood cell count, but my IBD had been flaring so…). I got a referral to see a Rheumatologist but I was not able to see him until the 18th because I was out of town for work. I was not particularly happy that I had to put my health on hold but I did get to see my family while I was gone which was a plus!
I really like my Rheumatologist(Dr. C) a lot. He asked me a lot of questions and listened to everything that I had to say. There’s a difference between listening and listening. And he really listened. That can make a world of difference with a doctor. At least to me.
He seemed really concerned with everything that has been going on with me. Since last December either my joints, IND Colitis or Psoriasis has been acting up(sometimes all at the same time) and he said that it’s pretty obvious to him that I need to switch biologics. And I agree with him. I don’t feel that Humira is really working anymore. My immune system is always attacking something it seems like. Every time I have a flare-up of my IND Colitis I tell Dr. M this and so far nothing has been done about it.
Dr. C is going to be sending my GI(Dr. M) my patient summary report from my visit and tell him that I have arthritis due to poorly managed IBD. So it’ll be interesting to see what happens. Because Dr. M had wanted to do a colonoscopy when I had to start my third round(yes, THIRD!) of prednisone from my flare that started up mid-July. I told them no, that I didn’t think that the Humira is working and that I wanted an antibody test. So he came back and said that we could wait for the colonoscopy and that he wanted to see me. The soonest that they can get me in is November 22nd! Which is a ridiculously LONG time!
When I explained all of this to Dr. C and he didn’t seem very happy. I don’t know when I’m coming off of the prednisone(still on 40mg) and I don’t know what the exact plan is. Dr. C asked me why I didn’t want to do the colonoscopy and I told him that I felt like it was a waste of my time and money when it seems pretty obvious that the Humira is no longer working. I may eventually still have to get one but we will see what happens. I have to call my GI nurse on the 22nd and see what the plan is.
Dr. C doesn’t think I have Lyme’s Disease or drug induced Lupus. He’s running some more blood work and I got some hip X-rays done. I’m hoping to have these results this week sometime. Right now my diagnosis is arthritis due to Ulcerative Colitis. Can’t say Indeterminate Colitis because there isn’t a diagnostic code for that! Dr. C doesn’t feel that the antibody test for the Humira is worth it right now. It could come back positive for antibodies and I’d need to switch medications. Or it could come back negative and I’d still need to switch medications because it’s pretty obvious from a clinical standpoint that the Humira is no longer working all that well. And it’s apparently between $200-$800 to run the test and I already have enough(and more coming) in medical bills.
Dr. C inspected pretty much all of my joints and checked my flexibility. I haven’t lost any range of motion which is good. And there weren’t any joints that were obviously red and swollen at the time. He also said he’s going to let Dr. M decide my next course of treatment since he’s the one handling my biologics for IBD. I really hope that Dr. M getting my notes from Dr. C will help him get into gear about changing my medication. I’m tired of being in pain just about every day.
I have a follow up in six weeks with Dr. C. I’m not sure what all we will be going over that visit but hopefully I’ll have been able to make some progress on getting my medication changed. I’m not sure if Dr. C will become one of my regular doctors or not. I think it’ll all depend on what the blood work says.
At the end of my visit, Dr. C asked me if I was ok and I ended up having a bit of a meltdown. At this point, I’m pretty frustrated with Dr. M and how my IBD is being managed. Before now, things have been fine with him. I’m not sure what changed this flare but I’m ready for things to get better. Right now I’m not planning on switching doctors. I already drive 2.5 hrs to see mine and I don’t want to go back to the GI office in town. We will see how the rest of the year goes before I decide what I’m doing.
Dr. C also said that he wishes he could cure all of us so that we didn’t have to live with chronic illnesses. That made me like him more. It’s not often that I hear a doctor say that.
Please note: I am not a doctor or a medical professional. You should talk to your doctor before getting a tattoo if you are on immunosuppressants.
I have gotten one tattoo while on Humira. I plan on eventually getting more. I haven’t yet because tattoos cost money and I have bills to pay, unfortunately! The only thing I have noticed about the healing process while being on Humira is that my tattoo actually healed a little slower than normal. I got three tattoos before I was ever diagnosed with IBD so I have a pretty good idea of how long my body takes to heal after getting one.
I did not actually talk to my doctor about getting a tattoo while on immunosuppressants. I did some research online and I figured that if I went to a good, clean, reputable tattoo shop that I would be fine. I followed my artists care instructions and I made sure to keep my tattoo covered up with long sleeves while I was at work. I had no problems with it healing thankfully.