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.
Today I saw my GI doctor for the first time in a year. Which to me is a good thing. It means that I wasn’t sick enough to have to go in for a visit. I did get sick a few times over the last year but they worked with me over the phone thankfully. It’s a three hour drive one way to go see them.
One thing that I was irked about when I first got there was filling out the paperwork for past medical history. There wasn’t any place to put down that I have Indeterminate Colitis. Only Crohn’s Disease or Ulcerative Colitis. I ended up writing it in myself. In my opinion this needs to change. Indeterminate Colitis need to be recognized nationally. I shouldn’t have to write in what I have on a piece of paper that lists forms of IBD. I also should have the right diagnosis in my chart.
Anyway, my doctor so far is happy with how I’m doing. The only thing he’s concerned with right now is the joint pain. There isn’t a whole lot that he can do about it right now because I’m already maxed out on the Humira. And the only other option is chronic steroids which I don’t want to do right now. Long term steroid use is NOT good for you. Which leads me to believe that my GI thinks I might have arthritis. Or at least joint complications due to the IBD.
So right now I’m stuck dealing with the joint pain. It’s the worst in the mornings and sometimes at night after a long day at work. During the day they don’t always hurt once they’re warmed up and I’ve been using them for a while. I should also start doing some daily hand exercises to see if that helps. I already found a few online and saved them to Evernote. Hopefully they help and make a difference.
I also got some blood work done today. I’m hoping those labs will be back tomorrow. My WBC count is being checked along with a ESR panel. I’ve never had an ESR done before but it checks for inflammation levels in your body. Hopefully my labs will be back tomorrow! I’m interested in seeing how I’ve been doing since last year.
On my clinical care summary that my doctor always writes up before I go home it mentioned that my BMI is above normal range and that I should talk to my PCP about weight management. Which did bum me out a bit. I was on steroids for 10 months last year and that did not do me any favors weight wise. I was working out regularly earlier this year and did manage to lose somewhere between 7-10lbs. I definitely need to get back to the gym and get in shape. I have about 10 more pounds to lose before I’m back to where I was before I got super sick in December of 2013. Looks like it’s time for me to find some motivation to get back to it.
Talking with people when they ask you about your health can be weird. Especially when they ask:
How can your doctors not know what you have?
Indeterminate Colitis can be tricky. People who have Indeterminate Colitis show signs of both Crohn’s Disease and Ulcerative Colitis. My inflammation skips around in my colon, I don’t have any granuloma’s and I don’t have any inflammation in my terminal ileum. Which has led to my doctor to just leave my diagnosis at Indeterminate Colitis until further notice. There’s also speculation in the GI field that Indeterminate Colitis is possibly a third form of Inflammatory Bowel Disease but there needs to be more research done on it.
Are you on the Crohn’s Diet?
Well, no. I’ve never heard of that. And also recently found out that there’s no such thing as a Crohn’s Diet. There are a lot of different diets that people with Inflammatory Bowel Disease are on but there’s not actually one called Crohn’s Diet. The only thing I really do is avoid fructose as best as I can. And Thai food. Along with popcorn. I haven’t been motivated enough to try just one specific diet. I instead have chose to do food diaries and find my “trigger” foods.
Are you going to stay on Humira while you’re pregnant? It’s a pretty nasty drug.
Yes, Humira has some nasty side effects. So far it’s working for me. With relatively few side effects. It’s the only drug that works for me besides steroids and I don’t want to be on that while I’m pregnant when I do actually decide to have kids. So I can either stay healthy during my pregnancy by staying on the medications or run the risk of going into a flare and put the baby and myself at risk. But in the end this decision will be up to me and my doctor.
You’re so young.
I get that I’m only 26 and have this incurable autoimmune disease but there’s children who get diagnosed with it. Most people with IBD are diagnosed before the age of 35. Being young doesn’t change anything. It probably makes it harder because people don’t expect the young to be sick. And having an invisible illness does not help that.
I really need to get better about having answers to these questions in real life. Which is why I wrote this blog post. Because when I was asked them I was thrown for a loop. I don’t really get asked these questions that often and sometimes it takes me a while to figure out what exactly I want to say about it. I feel that it’s important to have an idea of this before hand so that I can help raise awareness for IBD.