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!
One one of the most important things I’ve learned since being diagnosed with IBD is that you need to be your own advocate. You know yourself best. I’ve learned that you can’t always rely on your doctor to read your chart every time that they deal with you. My GI two different times has tried to put me on some form of mesalamine even though it’s listed as an allergy in my chart.
Now, should my doctor go over my allergy list when he wants to prescribe me a new medication? Yes, I think so. Seems like something pretty simple to do. But he has yet to do that. Or if he does read it he’s ignoring the fact that Lialda is listed as an allergy. So when this happens it’s up to me to remind my doctor that I can’t have mesalamine because it will put me in the hospital. This is one of the reasons why I feel that being your own advocate is so important.
Here are some other ways that you can be your own advocate:
- Educating yourself about your disease.
I feel that everyone should know what the signs and symptoms are of their disease. It’s always a good idea to know what your body is doing and what is normal and not so normal. It’s what allows me to figure out that I’m going into a flare. Or if something new pops up that it could be disease related.
- Asking your doctor questions when you have them.
One good thing to do is to write down what questions you have for your doctor. Find an app(like Keep by Google) to write down notes in so you’ll be prepared for your next doctor’s visit. It sucks to have questions for your doctor and then forget to ask them while you’re there. I’ve done that before. So I always do my best to write them down beforehand.
- Speaking up when you don’t feel well.
You don’t have to speak up every time you don’t feel well but you definitely need to if you’re not getting better or you’re getting worse. You know yourself best. I really wish I had explained to my doctors what was going on better when I was on Lialda. Maybe they would have figured it out sooner? Who knows now but I’m going to do my best to make sure I don’t make that mistake again.
- Read your medication side effects.
I feel that this is super important. I wish I had read the side effects of my medications from the get go when I was diagnosed. I learned the hard way that I should of. It took me being in the hospital for my doctors to realize that I was having a bad reaction to Lialda. The adverse side effects mimic a flare-up of IBD symptoms. So when my doctors and I thought I was flaring I was in reality extremely sick from the Lialda. I actually had my dose doubled while I was on it and quickly went down hill.
Are side effects scary at times? Yes, but you(or someone else) needs to know what they are so you can keep an eye out for them.
- Learn your facilities patient portal.
I love the patient portal. It’s a pretty awesome tool. It’s nice to be able to send a quick message to my GI when something is going on. And my nurse will reply to me on it at times or just give me a call depending on what is going on. I like sending messages over leaving long voicemails. Sometimes it takes a while to explain what is going on. I also like being able to go over my lab work myself and see how things are progressing.
This list isn’t necessarily a direct way to being your own advocate but you can utilize them to be a better advocate for yourself or a loved one. You have to learn about medication side effects and about your disease so if something happens you can talk to your doctor or your pharmacist about it. Being your own advocate isn’t always easy but you have to watch out for yourself. If you’re having trouble speaking up, see if a loved one or a friend can help you out.
Hope everyone has a great week!
How are you your own advocate? Any tips or tricks?
Five years ago today I had my first colonoscopy. March 17, 2011. My primary care doctor at the time ordered it and I believe that a general surgeon performed the colonoscopy itself. I don’t really remember, to be honest. I only met the guy like 3 times. Two of which I don’t remember because of the meds they put me on for the scope.
I had been having problems with extremely painful bowel movements since November 2010. I was having really bad constipation and blood when I was having BMs. Went and saw my doctor and he put me on some meds to help with constipation but things didn’t really get better. So we did the colonoscopy. Why didn’t he send me to a GI right then and there? I have no idea but I really really hate the fact that he didn’t.
After that colonoscopy, I was diagnosed with a mildly chronically inflamed rectum. It should have been red flags for my doctor but it wasn’t. He said I should probably go see a GI but never pushed for me to go or got me a referral. Oh, how I wish I had pushed that point. But I was in college and didn’t have a whole lot of money at the time to be spending on medical bills.
So I went untreated for what was actually Inflammatory Bowel Disease until December of 2013. Had a flare that was pretty bad my last semester of college. Lost like 10 lbs. Didn’t think much of it because I had already had a diagnosis. Just thought that it was ‘normal’. Man do I know better now.
Biggest thing I learned from this is that you need to be your own advocate. And don’t brush stuff off even if your doctor is. They’re not always right. And sometimes misdiagnose you with something and then you’re left untreated for years with an incurable autoimmune disease. I should have sucked it up and found a way to pay for it. Or asked my family for help. I really wish I had put my health first but I was so stressed out with college that I didn’t make myself a priority and I should have. It’s one of the things in life I probably regret the most.
After being on prednisone for 5 or 6 days I finally resided to the fact that the rectal pain was not going to go away on it’s own. I called my GI on Monday and left a message for his nurse. I heard back from her a couple of hours and she said that I could use the hydro-cortisone suppositories that I used in December when I last had rectal pain. It worked then so I’m hoping it works now.
If the suppositories don’t work it’s on to plan B. My nurse didn’t say what plan B involves but I’m pretty sure my GI would want to do some sort of scope. Whether it’s a colonoscopy or a flex sig. And I don’t want either. I’m really hoping that between the prednisone, hydro-cortisone and Humira that my flare will finally be gone by the end of the week.
I will be so happy when I get off of this prednisone. I hate prednisone brain. It makes me all emotional and over react to things I wouldn’t over react too. I can’t wait to be off of it.
I’m so ready for this flare to be over. I want this rectal pain to go away so I can go back to walking and sitting without pain or discomfort. It’s getting nice out and I want to be able to walk my dogs more. I was also trying to work out more so I can get this prednisone weight off that I’ve had for two years now. I have stuff that I want to do and I feel like my body is holding me back. Fingers crossed that this round of meds work and that I can get back to as ‘normal’ as life gets when you live with a chronic illness.
As a person with inflammatory bowel disease the possibility of getting fissure’s, abscesses and fistula’s are always in the back of my mind. Last month I had an abscess scare. Thankfully I didn’t end up having one but the process to find that out was not a fun one.
It all started out as rectal pain. I’ve had rectal pain before. Normally while going to the bathroom. Or even after going to the bathroom(normally when I’ve gone 5+ times in a day). But this time the pain was different. I was getting this pain from sitting and walking. Which I’ve never had before. I was hoping it would go away but after about a week and a half of it I ended up calling my GI.
Because my GI is 2.5 hrs away he didn’t have me come in to see him. He thought I had a possible abscess or fissure and wanted me to have my GP check it out. I was able to get in to see my GP the next day thankfully. She did a digital exam and because of how much pain I was in she didn’t want to use the anoscope. She asked me what my GIs plan was and I told her that if I did have an abscess that I’d have to see a surgeon and she decided to get me a referral to see one.
I was able to get in to see a surgeon the next morning. But the same day I saw my GP I also had to have an abdominal pelvis CT scan with IV contrast done. It was the first time I had ever had a CT scan. Thankfully I knew the tech at the hospital where I got my CT done so I felt pretty comfortable during the process.
The biggest problem I had during my CT scan was getting the IV started for the contrast. Apparently my right AC(vein located on the inside of your elbow) also now hates everyone(my left AC also hates everyone, and has for a while). The tech dug in my arm for a little bit before deciding to switch to my left arm. The CT contrast also didn’t bug me too much because I knew what to expect.
The next morning me and my fiance went to go see the surgeon. I never what to have to go through that again. Having fingers shoved up my ass several times to check for abscesses and fissures was not fun. And neither was the anoscope. I was in tears the whole time the exam was happening. The surgeon did not find anything and my CT results came back negative for an abscess.
I sent the surgeon’s findings and my CT results to my GI and waited to hear back from them. My GI decided that I probably had some inflammation in my rectum that was giving me problems. He was going to put me on mesalamine suppositories but I had to explain to my GI nurse why I couldn’t have those and my doctor decided at that point to put me on some hydro-cortisone suppositories instead.
I had to take them twice a day for 7 days and they definitely made a difference. I must of had inflammation down there that was bugging me for a while because I’m definitely feeling much better. I’m also not having one or two bad days a week anymore.
Hopefully my health continues to do well and my rectum continues to behave now that the inflammation is back under control!