Posts Tagged ‘crohns’
Ok, ok, status updates:
1. I graduate this Saturday.
Yup, that is right. After two years of classes learning about fingerprints, firearms, DNA, autopsies, homicides, crime scenes, and the like, I will be getting my Master of Forensic Science degree from The George Washington University. I’m feeling a tad ambivalent about it though. On one hand I’m extremely happy that I’m done with school (for probably the rest of my life). On the other hand, I’m wondering what I’m going to do with myself. I won’t have classes, homework, a job, and a life to juggle. I’m fearful that I’m going to be bored. But I have lots of hobbies I want to pursue (like my photography, guitar, and violin). Maybe I’ll actually keep updating my blog consistently (what a concept!).
2. No Remicade for Me.
I visited my GI doctor last month and he decided that it isn’t the right time for me to go on Remicade (more about Remicade here). He felt that my symptoms weren’t severe enough to warrant me going on such an extreme treatment method. Instead, he upped my 6-MP dosage. Hopefully this will slowly heal my fistula. Since the visit the pain and discomfort from my fistula has dropped a lot. I’m going to set up a visit with my colon and rectal surgeon for next month to see how it is doing and hopefully see if the drain that is set in there can be removed.
3. Flickr and Twitter Updates
I have seriously become uber-addicted to Twitter lately. I’m updating at least once a day (if not more than that sometimes). I’ve also set it up so that I can update it via SMS text messaging through my cell phone. Since I don’t have an unlimited text messaging plan with my phone company (T-Mobile), I am trying to keep myself from updating via SMS only when I’m not within reach of internet access (which is pretty rare).
I’ve also updated my flickr with a bunch of pictures. Some are from my friend Larry’s wedding and some are from Cheri’s friend Melissa’s wedding. There are also a bunch of random other images as well. Here’s one of my favorite photos from this last batch, our friend Kate (left) with Cheri (right) getting ready for Larry’s wedding:
I’m not quite sure (and too lazy to look) when the last time I posted a Crohns Disease related update, but now is as good as any other time.
Its been over a year since the surgery I had to correct three fistulas caused by perianal abscesses (which in turn were caused by the Crohns). I had three setons put in (basically threads to help keep the fistula open to allow for drainage as they healed) at the surgery and have since had two removed. I still have two fistulas present while one has closed up completely. I’ve been going to my colon and rectal surgeon almost every month wherein she examines my fistulas and treats them will silver nitrate to promote healing.
I’m still taking daily doses of both Asacol and 6-MP (aka mercaptopurine) to manage the symptoms. I haven’t had any major symptoms nor flare ups since last year when I was first diagnosed. Occasionally I will have some minor temporary stomach cramps and/or some joint pain (mainly in my fingers or my knees). But these have been relatively minor and infrequent.
Since my fistulas haven’t been healing as quickly as my surgeon would like me to begin treatment with the drug Remicade. I’ve been hesitant to be put on Remicade since it is administered intravenously and once you begin treatment, you must remain on the drug for the rest of your life, otherwise it will become ineffective. From what I’ve read, Remicade has been a wonderful treatment for those with Crohns Disease and perianal disease. I have an appointment with my GI doctor next week, and I’ll discuss this option with him and see what he suggests.
But overall, my health has been greatly improved over this time last year. I’ve gained back most of the weight I initially lost when I had my first flare up, and I haven’t had a flare up since that initial attack. I give great thanks to my wife Cheri, my family, my friends, my doctors, my co-workers, my church small group and God for all the healing that I’ve received this past year. Hopefully the healing will continue and soon I will be completely symptom free.
He is strong. He fools most people. His co-workers and classmates do not know that the words “Crohn’s Disease” now sit under his name in medical files. They do not ask about the three pills he takes quietly at lunch, nor are they aware of the eleven others he will take throughout the day. Each month, while working a fulltime job and completing his master’s degree, he still must carve out even more time to devote to this on-going battle. This monthly routine includes, not only visiting Target for refills of his many prescriptions but also remembering to have has his blood drawn, meeting with his surgeon and waiting, sometimes hours, for his appointment with his gastroenterologist.
You can visit her site for the full post. (Link)
Guess what that picture is! Its my terminal ileum. What is a terminal ileum, you might ask? Its where my small intestine ends and meets up with my large intestine (the colon).
On July 18th, I went in to have a colonoscopy done to take a look at my intestinal area which is affected by Crohn’s disease. In my case, I have Crohn’s Ileitis, which is when Crohn’s disease only affects the ileum. As you can see from the picture, the Crohn’s disease has caused ulcerations in the ileum (the white, mucus-like areas shown). The doctor took a biopsy to of my ileum to send to the lab to get tested for Crohn’s disease. The results came back to be consistent with the disease.
It actually turned out to be a good thing that only my ileum is affected. This is because many Crohn’s patients experience ulceration in both their ileum and their colon. This can cause much worse symptoms and issues than those that I’ve had to deal with.
All my life I have been fairly healthy. I’ve usually only gotten a cold or the flu about once a year, and its been limited to just that. In general, I’ve never really had to ever take any medications. I was on painkillers when I had my wisdom teeth cut out a few years ago and I was also put on some antibiotics in high school once when I had my ingrown toenails removed. That is about all the medication I’ve ever been on for my entire life.
Today is a different story. I’ve been diagnosed with Crohn’s disease, and now all the doctors want to do is pump me full of meds. I’m on Asacol, which is a topical medication for the lining of my intestines. What I mean by “topical” is that it kind of coats the lining of my intestines to try to help them heal. Its not like I have to cut myself open and rub on some ointment.
I’m also on an immune suppressant. This is to help lower my immune system since apparently mine thinks I’m the enemy. With Crohn’s, the immune system is attacking the digestive bacteria that live in my intestines, which causes the lining of my lower bowel to get inflamed. I guess my immune system is just confused or something. This may be why I never really got sick much my whole life.
I’m also on doctor’s orders to take an iron supplement since I’ve become borderline anemic. This might explain why over the last few years I’ve always had problems with having a lack of energy. The iron is definitely helping though. I’ve felt like I’ve had more energy than I’ve had in a long time. Unfortunately, now I have to hunt squirrels with homemade tools in my bare feet to kill off some of the excess energy.
And since I have Crohn’s disease, I also have what is called Perianal Crohn’s disease. Basically, that is when the Crohn’s disease effects the anus. Sounds like a hoot, right? But because of this, I’ve developed some perianal abscesses and some fistulas. Last month I had surgery to try to correct them. But I’m still recovering from the surgery and as the fistulas heal, my surgeon has put me on an antibiotic. And she is requiring me to take a fiber supplement as well so that my poops don’t hurt too much.
So all in all, I’m taking 3 prescriptions, and 2 supplements. This is the most medication I’ve ever had in my life. And more than likely I’ll be on it for the rest of my life. At least I’ll have the energy to hunt more squirrels.
This week has been a quite sucky one to put in the least. Last Saturday, I came down with something awful. I had horrible sinus congestion, a bad headache, and terrible diarrhea. Overtime, I figured out that I probably had a sinus infection on top of having a Crohn’s disease flare-up (which explains the diarrhea). I pretty much couldn’t breath through my nose until Thursday, when in the shower, I hacked up two golf-ball sized chunks of mucus. These were probably the biggest chunks of mucus I’ve ever hacked up in my life. I almost wish I would have caught them so I could display them for my peers.
Speaking of my Crohn’s, I’ve started a new medication today. Its an immuno-suppressant. The reason I’m on it is because Crohn’s disease is basically caused because my over-active immune system is attacking the natural digestive bacteria that resides in my colon. So, this medication is supposed to be like, “Hey immune system! Chill out.” I’m glad to be on it, but I’m worried that it’ll cause me to get colds and such easier. Maybe I’ll be able to cough up more golf-ball sized mucus chunks again.