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!
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!
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.
One of the things I’ve noticed about my IBD is that things don’t always stay the same for long. It took me a while to figure the latest problem out but once I did I was pretty bummed about it. After three months I realized that my symptoms were getting worse in between my Humira injections. And what I mean by that is the medicine is effective for about 5-7 days before it’s not quite as effective anymore.
Which meant my symptoms were getting worse. I wanted to be sure that this was what was going on before I called my GI doctor. I did call them a couple of weeks ago and they were ok with my Humira getting increased from biweekly to weekly. In part it scares me because I’m worried that I’m starting to build up antibodies to the Humira. Although the only way to know this for sure is to get a blood test done that I heard most insurance companies don’t cover.
I’m now taking Humira weekly and hope that things start to improve. I believe that if this medication fails that Remicade is next.