I know I usually write about food and share recipes, but lately my mind has been focused elsewhere so I have decided to share an update and a little of what I am going through right now…
Today I start new meds in hopes to get myself feeling better. It has been a long couple months of dealing with my symptoms seeming to just get worse and worse.
I’ve mentioned before how I’m bad with taking pills, I don’t know why but if they aren’t right in front of me I’ll often forget. I have been really good at taking my current medicine for the last few months and there has been no change. After meeting with my doctor and explaining everything I’ve been going through she decided we should try something new.
Side note: don’t make your appointment at the end of the day if you can at all help it. Especially if your doctors office is busy. My appointment was at 4:30, her last of the day, and I was seen at 6…I wasn’t annoyed too much but still…AND there was a girl in the waiting room who just kept staring at me, every now and then would say my last name, SO creepy! Okay, back to the original story…
I have been and will continue to take Lialda (mesalamine) which is basically an anti-inflammatory, and should decrease the swelling in my colon. But now I will be adding Uceris (budesonide) which is also an anti-inflammatory and it will decrease my body’s immune system. This is a fairly new drug and my doctor feels as long as I’m still mild to moderate it should work for me, but if I have gotten worse and have moved up the scale it may not. I had the option to go straight to prednisone but decided to try this first, it supposedly has less side effects then traditional prednisone. So, I will try Uceris and if I don’t see any change in two weeks, traditional prednisone it is.
My doctor pretty much explained to me that Uceris is basically like a topical prednisone, it is a pill that doesn’t release until it has reached it’s destination. Also making it localize and not spreading throughout your body like traditional prednisone.
Why am I sharing this? Well, I just really need to share. I read a lot of stories, I am part of different support groups, I follow other IBDers, and what I find is that the majority of what is shared are those with more severe cases of Ulcerative Colitis and Crohns. I am not severe and I hope I don’t ever get there. There are many different stages of UC and I just feel the urge to share my story.
*I may share more than you’d like to know, so here’s the point where you can stop reading if you’d like.*
I was originally diagnosed with proctitis at the end of my pregnancy; I have always had issues with my bowels but this was new. The doctors I saw just blew it off as a bad hemorrhoid, I am not a stranger to hemorrhoids, this was more than that. After I had my son, I had a sigmoidoscopy and was told I had proctitis. I was given Canasa and nothing seemed to help. After failed attempts to contact my doctor, I gave up and went for a second opinion.
I starting going to Johns Hopkins GI where the first doctor I saw did everything I would think a doctor should do on the first visit. He listened. He also took lots of blood and did various tests and we scheduled my first colonoscopy. I was then diagnosed with mild UC. He then put me on Lialda. I continued and still continue to go routinely every four months.
I was basically going month with then a month without symptoms, almost like clock work.
After about a year seeing Dr. Leonard M. Bayless, we decided to switch to a different doctor, Dr. Sharon Dudley-Brown, who specializes with women and specifically pregnant women dealing with UC. No, I am not pregnant. Having another child was a topic of talk and I wanted to know more. The reality of it all is it is very unlikely that I would be able to get pregnant while I’m in a flare, the worse it gets it becomes harder and harder. Anyway, my symptoms got worse, my Lialda dosage was upped. I was also given various “topical” forms of melamine to use. Like most people I started playing with my diet, trying to eliminate any type of trigger. What I found was once removing gluten from my diet, I felt better. My symptoms seemed to go away. I was in remission for a little over 9 months.
I was still in remission at the time of my second colonoscopy, when I went in for the follow up I was told the disease is slowly moving up my colon and was another 11″ further up. This really confused me and honestly probably stressed me out enough to trigger a flare. This has been all within a four year span. It encompasses my left side making it difficult to sleep on my left side. Since I’m a left side sleeper this has made my nights seem long, not to mention just being awakened by sudden urgency’s. Which leads me to where I am now…
Within these last few months I have joined various support communities because I want to hear other peoples stories and get support. I need to learn to share with other people but there aren’t many people who are openly interested in hearing about ones bowels. (Or in as much detail as I would share.) I come from a fairly open family and I will share as much as you’re willing to hear especially if I’m trying to explain my disease.
So, I have basically been in a flare since July starting fairly tame and has gradually been getting worse and worse. Everyone’s flare is different, mine, well…here is what my flare has consisted of these days: I wake up with urgency, I spend about an hour in the bathroom every morning. I rarely have much if any solids, there are times I swear my insides are coming out and I have lost a pint of blood. I feel as though some thing is being jammed in my gut, the cramps literally have me buckled over. I usually only have pain in my left and lower part of my gut, lately I have had sharp pains in my right side as well as lower back pain. I can’t pass gas without going into the bathroom for fear it won’t just be gas. If I say I need to use the bathroom, I mean it. I lose blood and mucus every time I use the bathroom, even if I am going #1. I have cramps, pressure and sudden bouts of urgency throughout the day into the evening. I have often have to wake up in the middle of the night…as I type my gut is talking to me, just gurgling away.
I am just emotionally and physically drained…and I only have mild to moderate UC…
Crohn’s and Colitis Community
Gutsy Women: IBD and IBS
Girls with Guts
The Crohn’s and Ulcerative Colitis Diaries: Living with IBD
CCFA – Crohn’s & Colitis Foundation of America