My name is Laceigh and I’m from central Washington born and raised, I’m 20 will be turning 21 in a month and a half (YES!) I have had Ulcerative Colitis for 4 years. I work a full time Monday through Friday job, have an awesome boyfriend that’s really good at making me laugh as well as our awesome dog Korah who’s like therapy for me. Very rare I get bad pain when I’m with her (not sure how that works but I don’t care!) I’m very active, I run, hunt, wake-board, snowboard, ski, and love camping and hiking. You could definitely label me as the outdoor country girl type and it won’t bother me one bit! Tattoo lover, got my first one about 5 months after I was diagnosed knowing it was going to be a long trip ahead so I got one that reminded me to be strong, live your life and to always remember I have friends and family that love me unconditionally. Now I have 5 tattoos and adding regularly haha.
Usually have a flare once a month, urgency, incredible pain, vomiting, extreme weight loss, loss of appetite, and fatigue.
I’m more or less the same person as I was before I was diagnosed with UC, adventurous always willing to try new things and definitely the dare devil of my family, not much scared me. Fast forward to summer 2008, started feeling sick with the normal symptoms, didn’t think anything of it being a stubborn 17 year old “It’ll just go away”. Wound up in the ER just before Christmas after my PCP didn’t take me seriously. In the ER, did a couple tests only to be sent home 2 hours later with some pills that “would make your stomach feel better” Mind you I hadn’t eaten in about 2 weeks, and taking a sip of water made me puke up stomach acid let alone the convulsive shaking that I couldn’t get to stop and the burning hot to freezing cold my body felt changed every 5 minutes. So I went home, thinking maybe it’s just a bug and I’ll be fine in the morning. 2 days later I was back in the hospita l and could hardly walk. Now they took me more seriously, got 2000cc’s of an IV (twice the usual limit) had a CT scan, numerous x-rays, insane amounts of blood work and after that they realized oh, her blood count is about half of what it should be. Basically they looked at me and in the nicest way possible said a long version of “I don’t understand how you are alive right now.” Was in the hospital for about a week, had a colonoscopy and more CT scans, x rays and blood work every day. Was told I had UC, took me a while for it to really sink in. After I was out of the hospital I missed about 2 more months of school, couldn’t get through the night without being in pain, in the
bathroom at a minimum of 20 times per day on a good day. I didn’t bother counting at night, stopped caring. I had friends calling and messaging me but only responded to a couple with “I’m fine, just haven’t felt so good lately no worries” I wouldn’t let anyone see me and I couldn’t leave the house anyways.
I closed off; it’s not exactly easy telling someone you have an ass disease, not a pleasant thing to talk about!
Finally got back to school, weighed 95lbs I believe then, made me sick looking at the scale so I stopped looking! My friends were glad to see me back but I could only go a couple hours a day which I only usually went for sports therapy (the only subject I liked) First day my teacher saw me, she pulled me in the back and looked puzzled. My size 0 jeans were falling off of me, I was pale and looked like hell. I thought I was looking a lot better but didn’t think about the fact that nobody had seen me in about 5 months. Seeing her so worried and she asked me if I had an eating disorder. Hit me hard, I missed another week of school after that day and from there on out sat in the back of her class. If she looked at me like that then everybody else must see the same. People stared, and I hea rd a lot of talk. Ended up quitting public school and finishing my last year of high school doing homeschool. Got my diploma; early even, but didn’t walk with my class and honestly I didn’t care. It seemed to me like most everyone who was a “friend” turned their backs anyways like I had the plague or something.
I started with asacol, and prednisone, that didn’t work. All sorts of pill medications, did sulfasalazine for a while until I became allergic to it, then my gastro had this great miracle med that works great for severe UC like me, but had to get some blood work before he put me on it. Turned out I’m part of the 1% of the population that does not have the enzyme to break down the medication. Sweet. So here I am today on the last step of meds before surgery- Remicade every 2 months and has still not put me into remission after now my 3rd year of treatment on it. (On a side note, my gastro moved to Chicago- so I got referred to a new doc. Come to find out this “doc” was a medical assistant, not a gastro. Makes sense why he seemed so clueless when I talked to him. Needless to say I pretty much fired him as my doc and am still looking for a new one!) I’ve tried every diet possible and all I know from those is what hurts me and what doesn’t hurt me! Every “natural cure” has been nothing but a crock of sh*t for me, nothing works. And when I say I’ve tried everything- I mean it! haha
Finding websites like this, support groups on Facebook, have helped for information on surgeries, reading stories of people my age going through this, living with an ostomy or going through the steps to get a j-pouch. Strongly considering surgery, I know my family and my closest friends will be there for me. I’m so thankful for my family for dealing with it, I’ve had breakdowns more than a handful of times and they took the brunt of it all. Those: “why me? What did I do to deserve this?!” breakdowns. Contemplating surgery is a very possible option right now, it will be a long process but I’m starting to think its best. My boyfriend has always been there for me, gone to infusions and made me laugh when I feel sick. But having an ostomy worries me, what’s he going to think? Can he see it as a good thing and not an ugly disgusting thing coming off of my abdomen? I can’t even begin to say I could blame him if he was repulsed by it or if he jus t flat out couldn’t deal with it. I would honestly understand if he couldn’t be with me because of it. Obviously it scares me, what kind of man would still find me attractive with something like that!? I see it as a good thing because it would mean no UC, no pain, no infusions, and a better pain free life. I could get back to being my old self more and less stressed all the time about trips and not knowing if I’m going to flare before we are supposed to go. My UC stops me from doing more than I let on to everyone. You get really good at putting on a face that says “I’m great!” when you’re being literally torn to pieces inside. But nobody sees how it really is, people tell me all the time I know how you feel! Um… no you don’t. You don’t have what I have; you do not understand the pain. It’s the most frustrating thing! I know they mean well, but it gets old. Nobody knows how you really feel inside, as much as I wish some could just for one day to suffer with this invisible illness, but I can’t wish even a day of this on anyone; yep it’s that bad! I have never been so torn on the decision to keep dealing with the pain and every other symptom or to take the risk of the surgery hoping it goes well and taking the chance of losing some of the most valuable people in my life with the current relationship I have with them- I don’t want that to change. Then that decision leaves just going the ostomy way, or giving the J-pouch a shot and hoping it works. There’s so much to think about. I wanted to thank everyone that puts their stories up for people to read, good and bad! Always good knowing you’re not alone. Just wish I had friends with UC that I could rant about it to that knows where I’m coming from! But places like this are sometimes the best thing!! =]
Where I’d like to be in 1 year:
No surgery and symptom free! haha But if thats not possible I just want the pain gone, surgery or not!
Asacol- Didnt feel a thing.
Sulfasalazine- Sorta worked but I became allergic.
Prednisone- Never actually noticed anything with it, I was on it quite a few times.
Remicade- helps alot but Im still not in remission.
written by Laceigh
submitted in the colitis venting area