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.
“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.“
Tired of carrying around pill bottles and pill boxes? I know have been in the past. This is where PillSuite comes in.
PillSuite is a system that allows you to sort your pills into biodegradable bags that are easy to use. The system comes with a sorter, a sealer, batteries, and biodegradable bags when you buy one of their kits. The sorter allows you to sort seven sections/days worth of pills at a time. You put them in the “hopper” portion of the sorter and it has a funnel attached to it. This makes it a lot easier to get the pills into the bags!
After they’re in the bags the sealer then seals them. It’s really easy to use. You just line the bag up and push a button on top to seal it. The system reminds me a lot of my Food Saver, only it doesn’t suck all of the air out of the bags. It just uses heat to seal them. After they’ve been sealed they’re ready to go!
PillSute also made sure that there is space on the bags that allow you to write on them. This will come in handy for me if I ever have to go back on Prednisone(fingers crossed I don’t flare anytime soon!). It will make things a lot easier for me when I have to taper off of it. This system would be an advantage to anyone who has to taper off of any pill medication. You could set everything up as soon as you get back from the pharmacy! It would save you a lot of guess work while you’re tapering. Another advantage of being able to write on them is that you can write AM/PM on them, people’s names, what it contains, etc.
These nifty little bags will also come in handy on short trips or pills that need to be taken while I’m at work. I look forward to being able to use them while I’m camping or when I have to go out of town for a few days. If I have to be out of town for a few weeks I probably won’t use the bags. It would just be easier to travel with the bottle at that point, depending on what I need to take with me.
One thing I did find about these PillSuite bags is that if you have gummy vitamins they do become stale and chewier after a while. This is because the bag has a perforated edge to make it easier to open them when you’re reading to take your pills. I would not recommend doing more than 3 or 4 days at a time with gummy vitamins in these bags. Unless you don’t mind them becoming chewier and then, by all means, do your full stay!
In the end, I definitely recommend PillSuite. Their product is pretty good and it doesn’t cost a whole to get started($29.95). The refills on the bags are also reasonable! $7.95 for 400 bags isn’t bad at all! It’s available here on Amazon and also on the PillSuite site.
“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “
I’ve always wanted to try a bidet. I have heard good things about them from other people with IBD. I’m glad that I was given the opportunity to review the Luxe Bidet Neo 185.
The Neo 185 was fairly simple to install. I did have some problems hooking up the T joint to my tank because of how stiff the hose that went from my wall to the toilet tank. Once I got that installed things went very smoothly. I do need to get some plumbers tape to put on it. It did leak a little. I think that because of how stiff one of the pipes is, it’s causing too much tension on the T joint and causing it to leak. I meant to get some plumbers tape this past weekend but I forgot.
When I first used the bidet it was a little shocking to have cold water spraying on my butt! I do wish that there was a temperature control or something on this but I’ve gotten somewhat used to the cold water. It’s definitely helped some with the butt burn when I’m having a bad day IBD wise. I’m definitely going to be glad I have this the next time I’m in a flare.
The bidet does not get you perfectly clean. I still have to wipe some, but not as much as I used to. The water from the bidet definitely helps! One thing to keep in mind is to not turn the dial to full blast the first time you use it! Try a lower setting to see where the water pressure is for it and adjust from there.
This bidet also has a self-cleaning feature which is pretty nifty! There is also a setting for the ladies. I haven’t really used it. I’m more interested in a bidet for my behind. But for the women who are looking for a bidet that also takes care of the lady bits, this is a great option for you.
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.