Laceigh cruising in the pickup truck
Introduction:
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.
My Symptoms:
Usually have a flare once a month, urgency, incredible pain, vomiting, extreme weight loss, loss of appetite, and fatigue.
My Story:
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
my ibd dedicated tattoo
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.
Bow hunting for deer, just in-case you didn’t believe the hunting part!
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!
Colitis Medications:
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
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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 UC for 4 years.
hey laceigh! i liked reading your story. i’ve recently decided that i want to learn how to hunt and it’s so cool you do bow hunting. need to try it when i am not so nervous about crapping my pants in public!!
i’m not in remission either (going 6-7x a day) and i tried all the drugs, too. remicade helped for a few months and then stopped working, as all the typical meds do. i had a surgery consultation a few weeks ago so just i’d know what it’s like. it scares the crap out of me, especially the recovery. my doctor said he would not recommend a j-pouch for anyone as it comes with a host of problems. he prefers permanent ileostomies which is definitely what i’d get if i had to.
i hope you can fine what works for you. UC is a tough disease and it has really made me really what a kick-ass person i am!
Hi Laceigh. Your story could be my story, but my colon became toxic after having UC for about 2 1/2 mos, so I had not choice but to get my colon removed. I’m currently healing after jpouch surgery #2 (I had to do it in 3 steps cuz I was so sick: #1-colon removed, ostomy installed (where they hook up the bag) rectum holding gut together until jpouch created;#2 – Jpouch construction & rectum removed (Yay! It continued to give me problems after surg #1); #3 Ostomy removed, digestive plumbing connected (if you are interested in all the gory details, I put them in this blog: http://lisakapp.blogspot.com/ )
I had the same concerns about the pouch w/body image, will I b attractive to my husb? will I look like a deformed freak?, etc. It takes some getting used to, but now the whole bag situation is not a big deal. My husband still finds me very attractive and we have not found any problems w/intimacy issues. Also, there are companies that make cute lacy bands that camouflage the bag, which is actually pretty low profile to begin with. The ones they give you in the hospital are HUGE – don’t let them scare you. You can order smaller ones that are much more comfortable. Also, no one notices it. My friends were not so subtle about starting at my stomach when I first got out of the hospital, and they all said that they couldn’t tell it was there. As long as you keep it clean, you will not have many problems.
Good luck to you. I hope you won’t need surgery, but if you do, know that the vast majority of j-pouchers are ALOT happier and would do it again in a heartbeat!
Oh, and here’s some info about jpouch surgery:
http://www.clevelandclinic.org/lp/j-pouch/index.html?utm_campaign=CS+-+Digestive+-+DR+-+Ileo+Pouch&utm_medium=cpc&utm_source=bingppc&utm_term=j-pouch&002=2156527&004=260894285&005=11120833917&006=171711542&009=p&011=top%20j%20pouch%20surgeons
I went to Cleveland Clinic and was extremely happy.
Hi Laceigh,
Wow, I wish you the best. Good luck in finding a dr., make sure you like him or her.
I too, was young when first diagnosed back in ’82, checked me for everything but GI problems, go figure. Finally called in a GI dr., the best around here(now retired). I had UC at the age of 18 yrs. old. 30 years since then, how I wished they would have given me an ostomy! I was never a candidate they said. Yeah right, when the quality of living is so bad you never leave the house, that’s not much! I am sure you understand every word of this.
I too had to find a new dr. a few years back, scary trying to find a good one. Have you ever been on Imuran or Mercaptapurine? I think this is what has kept me in prety much remission for quite awhile now, about 6 yrs. I do have some bad days, but get by. I too have heard that people with a J pouch still go to the bathroom quite a few times. I am not sure if this is true, so check all options if it leads to surgery.
How I wish I had a computer and these forums when I was first diagnosed, this is great. I felt so alone when I was 18. My husband, chldren and myself are hunters too. I love the bowhunting picture :)
Hope you feel better soon, keep searching on the internet and ask people questions, the IBD community is so helpful!
Take care and get well soon!
Hi Laceigh,
I read your story and just wanted to wish you well. I am 21 (just turned 21 on September 22) and I have had UC for 5 years. I was in a similar case as you when it came to Asacol and Prednisone: I was on the max dosage for Asacol and was given Prednisone too many times and experienced the worst things because of it. I flared every single day for nearly five years straight. Doctors were trying to put me onto IV medication like Remicade before performing surgery on me.
I tell you this because I have something that I hope will work for you.
Try going on a gluten-free diet before surgery. I switched to gluten-free, and now my symptoms are practically nonexistent. For the first time since I got diagnosed, I know what it’s like to feel healthy (since I’ve forgotten that feeling). I am SO MUCH BETTER with this gluten-free diet. I even had a three month streak of no flares.
It can’t hurt anything if you just change your diet. Give it a month, and see how it turns out. In my case, I was better within a week.
I wish you the best!
Hey Laceigh,
Now, I’m no pretty young girl, but I’ve had some of the same feelings you had when faced with this decision. I was worried about the same things with an ostomy bag. I was worried that my wife and I would never get it on again, but that couldn’t have been further from the truth. Truth is, I think I had more of a problem with it than she did when it came to intamacy. It’s hard to feel sexy with a poop bag hanging off your belly. Haha! Anyway, your boyfriend probably doesn’t think its as big of a deal as you do. He probably just wants you to get healthy again and the bag is only temporary anyway. If it turns out that he can’t come to grips with it, his loss. You’re only (almost) 21. You have to worry about yourself and what you want to do first and I’m sure he’ll agree. I realize that this is probably much harder decision for a young woman to make than it was for me at the time (I was 30, married with a child) so I know it’s probably weighing on you a bit more than it did for me and I probably sound like your dad. Take the whole body image out of the equation and it sounds like your mind is pretty much set on surgery. I’m not trying to push surgery on you, but I’m very glad that I did it and couldn’t imagine what my life would still be like if I continued to live with UC. I’m only 5 weeks out of my final surgery for the J Pouch, I’m happy, healthy and active. Things aren’t fantastic yet, but I’m much better off than if I chose stick to the drug regiment and “hope for remission” dream. I wish you the best of luck with whatever you decide and will answer anything you want to ask! Take care!
Joanna I definitely agree! The more I read on it it seems like the people that wind up having problems have all kinds of problems with it. Its something I would probably give a shot and just hope for the best because I’m the type of person that would always ask “What if” if I didn’t try it. It is a very tough disease, everyone that has it is definitely kick ass!
Thanks for responding Lisa!! Ill read your blog for sure, I love reading other peoples stories. Good to hear about your husband! Its always hard to tell, I don’t think he knows exactly what this disease is, I always spared him the gory details haha! But I’m slowly giving him more info on it and hes been super excepting of it all, I’m not as embarrassed to get up when I need to and go to the bathroom, usually he says “you feelin okay?” but hes loosing up about it a little and he’ll joke around and say “again?! really?!?” haha thank you for the info on the bands and such! I know I would probably wake up from surgery and be terrified! But Ive seen some pretty small bags that don’t stand out as much =]
Chris! It was the Imuran that I had the blood work done for, was 1% of the population that doesn’t have the enzyme to break it down =/ I just forgot the name of the medication! J pouchers do go quite a few times from what I understand, my biggest problem is the pain- doesn’t help that pain meds make me super sick and I usually wind up throwing everything up for hours. Fun stuff! haha Definitely glad I’m getting my story out, feels like a weight has been lifted and its so great talking to people that have been in my position =]
Ahhria I’ve tried the gluten free diet for a while but maybe its time to give it a shot again, might be more beneficial this time. I don’t think I was on Remicade when I tried it last. Thank you!!
Thank you Blake! You put it perfectly the “hope for remission dream” Thats pretty much exactly what it is! Still hoping but no luck. So glad hearing that you had more of a problem with it! If I was older and married with kids like you were I probably wouldn’t hesitate as much, but it is hard being so young and body image is a huge deal (even when it comes to helping health problems) obviously just nervous of the people who don’t understand or know what that bag is hanging off of you, some people can be pretty shallow! Seems like majority of people are happy they did the surgery, so crazy you are already active after 5 weeks, sounds like you had a good recovery! Just like you I would love to get out of the drug treatments- kinda scary when the side effects are things like cancer, not really something I want to stay on and risk that crap! Thanks =]