There are 11 days til Christmas, folks. In case you lost your calendar or something and needed me to remind you. You’re welcome.
And while usually I’d be writing a post gushing over how wonderful Christmas is (it still is) and how much stuff I have to do (because I do have a lot of stuff), I’m going to talk about something else entirely. Something which makes me uncomfortable both physically and emotionally. Something people don’t talk much about because it has to do with bodily functions and really, who wants to talk about that?
As some of you know, I have ulcerative colitis. What is it? Well, to be brief, it’s when the lining of the colon is inflamed and ulcerated. This leads to bathroom trouble, in other words, along with exhaustion (imagine how you feel during a stomach bug – now imagine that for days and days), and in some cases fever and vomiting. Flare ups aren’t constant – most of the time I feel fine – but when they happen all bets are off.
I was hospitalized in early October because of a really bad, sicker-than-I’ve-ever-been-in-my-life flare up, then again a week later due to something I probably picked up when I was in the hospital the first time. It was the least fun ever. And here I am, two months later, not nearly as sick as I was then but not so great, either.
Why am I telling you about this right now? Well, because I feel like I need to get it off my chest somewhere and I don’t go to therapy so here I am.
I’m going through a flare up right now. It started last weekend. I generally only feel sick in the morning, til early afternoon at the absolute latest. When I get out of bed I feel fine. It’s only, say, after I take a shower or get moving in some other way that the problems start.
Did I mention that I have an almost 2 hour commute? So the pattern that’s emerging is: Get out of bed as early as possible in the vain hopes of getting everything out of the way prior to leaving the house, go to the bathroom at train station1, take train 1 (pray the entire time), go to bathroom at train station 2, take train 2 (pray even harder), walk 1/2 mile to work while praying some more and repeating positive sayings to myself so I don’t have an accident. Rush straight to bathroom as soon as I walk in.
Can you imagine how awful that is, day after day? It’s terrible. It hurts. It’s scary. It’s embarrassing. It’s demoralizing. It’s depressing.
But today was the worst. I burst into tears in the car because I was hurting and angry over it. Not only did I miss train 2 because of my bathroom escapades, I had to get off at the first stop on the train I did catch, more out of fear than anything else (the cramping was really ramping up and I was terrified). I had the treat of seeing homeless people wash themselves in both train bathrooms this morning. Of course I know I could take that as a reminder that life could be worse, but…not right now.
So I took a cab the rest of the way in. There’s $25 down the drain. And even then I had a couple of tense moments, but I made it to work safe and sound.
This is a very lonely feeling. People are sympathetic, my supervisor is understanding (her father has Crohn’s so she knows how bad stuff like this can be), Rob is of course a sweetheart as always. But unless you’re going through it, you don’t know how it feels inside. Pain and discomfort aside, it’s the knowledge that you can’t trust your body that really sucks. It’s standing on a crowded train platform and feeling that first cramp and begging God to just let you get through this ride and to work without incident. It’s feeling a pain while in the car and panicking, even when you know you shouldn’t, your eyes searching your surroundings for someplace with a bathroom.
It’s crying as I type these words because I honestly don’t think my life has even been so strongly affected by this. It’s such a shameful place to be in, though I know I shouldn’t feel shame because I can’t help what’s happening. It’s not my fault. But still the shame is there because, let’s face it, this isn’t a pretty situation.
It’s being scared to death that this is never going to stop and I’ll end up with cancer, or having my colon removed. It’s praying and praying that I find a way to get this under control soon.
Yes, I’m on medication, namely Asacol. I’m sure there’s other things I can do and take and I plan to explore those options.
No, I can’t see a GI right away – in fact it doesn’t look like I’ll be able to get in til the new year. So I’ve been seeing my regular doctor and will be back in his office on Monday. It’s a while to wait but what can I do? It’s better than waiting til after the holidays.
It’s all about day to day right now. And trying to meditate and stay calm when issues arise. And asking God what I did to deserve this.
I’m Pouring My Heart Out with Shell at Things I Can’t Say.
So sorry you have this burden! Keeping you in my prayers!
Thanks, Sara!
Oh, that does sound tough. I wish I had some magic words to make you feel better AND make it go away!
Thanks so much, I appreciate that.
I didn’t know you had UC… I am so sorry to hear that you are having such an awful flare. I have Crohn’s and know how difficult living with IBD can be.
I will offer my unsolicited opinion, though. There are SO many more (and better) drug options out there than Asacol. So don’t give up hope. And worst case scenario, you have a colectomy. I have a friend that went through it last year and it was a blessing. Now she is happy and healthy, with baby #2 on the way.
I’m sorry to hear of your Crohn’s. And thanks for the advice. Turns out they got me in to see a specialist next Friday – much better than what I’d first been told. I definitely plan on laying it all on the table with this new doctor and trying to get on a better course.
Oh girl. You don’t deserve this. I have some questions for God when someone is going through something so rough.
My father had this. I know it was rough on him.
Sending you lots of love and prayers.
Thank you, sweetie. I can use every one of them, for sure. Especially in the morning!
Although it’s not quite as bad, my husband has IBS and it has been debilitating for him at times in his life. He’s on meds now that are working, but there have been times we’ve been on a road trip and have to stop 5 or 6 times in two hours. He still has to be careful what he eats and drinks. I feel for you and now the pain (physical and emotional) you’re going through. God didn’t do this to you to make you pay for something…I promise you that. i’ll say a prayer for you!
Thank you. I’m sorry to hear about your husband, it’s such torture to go through things like this, especially when it’s something so “secret” in nature, you know?
Oh! What a tough time! I will be praying. I don’t know anything else to say or do.
Thanks!
That’s more than enough.
I am so sorry that you’re having to go through all that. It doesn’t sound fun at all.
A couple of years ago I got really sick… same type of symptoms that you describe. Cramping, fever, etc…. I was sick for almost a week and I think that I lived in the bathroom. I have never felt so sick in my entire life.
After several doctor visits and tests they ruled out colitis and I had some nasty bug.
I was so glad when it went away! I hope that you start feeling better soon!
That does sound like a nasty, nasty bug! Yuck. And thanks for the kind wishes, I’m hoping the same thing.
I hear you.
I know a good, good friend…and I remember how it was when she was first diagnosed.
I was with her, and her apologies to me over the things that were happening. I told her , that with me,,,,she had no worries.
But I could see that it killed her.
So very sad…what an isolating feeling.
MUCH LOVE TO YOU.
Isolating. Yes, you’ve hit the nail on the head. Thanks for the love, my friend.
you were so brave to pour your heart out about this today. Thank you so much for giving voice to this condition, from your own perspective, and telling us how it makes you feel. I hope it lightens your heart and eases the shame feelings to have spoken about it. Thinking of you, sending endurance, and praying for an end to this flare up!!!
Thanks, Frelle. It did help, tremendously. Thank you for the prayers.
Oh sweetie. I’m so sorry that you are dealing with this. I wish I had those magic words to offer you to make it go away. Know that you’re in my thoughts and heart. And you never ever have to be ashamed of this with me.
Thanks dear. The shame is really the worst part – feeling like it has to be whispered, if spoken of at all. I appreciate the hell out of you!
I can’t imagine going through that day after day. HUGS.
Thank you!
I’m so sorry you’re facing this Jen. I hope you find an effective treatment very soon. Stay strong in the meantime. xo
Thank you!
Oh, honey, I’m so sorry.
I wish you didn’t have to deal with this – that’s just terrible.
I’m sending you good thoughts.
XO
[Am I complete bitch for thinking that Asacol is a hilarious name for a drug for this? I am? I thought so.]
As I told you via email, that’s where our minds went right away too. So no, you’re not.
I love you. Feeling all this is normal – and I’m happy to listen any time you need. Bodily functions don’t scare me.
Thanks sweetie.
Oh you poor thing. I didn’t know the exact nature of your illness, just that you were in the hospital and having a rough time. A two-hour commute would be miserable even without gut issues – I can’t even imagine how horrible it must be enduring that every day. My profound sympathies.
Oh, thank you – that’s very kind of you.
oh you poor thing. My sister has colitis, but hers is the opposite of yours…lots of constipation, painful and once or twice life threatening. I am just so sorry that you have that kind of day often (It reminds me of when I have a fibro flare and I am just useless to the world at large) but just thinking of you in the car, on those trains, scared, in pain, embarressed, angry, hurting…makes me want to cry.
I hope that when you can get to a Gastro they can help with another med. Until then, I’m so so sorry.
Thanks, doll, though no tears. Today was a good day – meditating helped me get through it without incident. I was so happy when I walked through the door, I was almost laughing. It was a good feeling for sure!
I’ll be seeing a doctor next Friday so fingers crossed!
(((HUGS)) Girl… my paternal grandfather had colitis and my mom suffers from IBS… both developed (or were diagnosed) later in life, so I won’t be surprised if issues like this turn up in the future. Kind of a funny story… I met my ex husband when I was 17. The first time he met my grandparents, my grandmother said to him, “Why you look just like a young man in our colitis support group!” Poor Guy! He wasn’t and I thought he was going to die with embarrassment!
I’m so sorry I just found out about this… I really hope that you are feeling much better now, and that there is a treatment available to you that would help you cope with this easier in the future.
I felt the rawness of your pain and frustration in your post. It’s so awful to know that you were feeling so terrible and there’s nothing I could do to make it better. I could only encourage you to continue pouring your heart out–we’re here for you.
You are not walking alone on this particular path (even though it does feel like it, I know). When those cramps start up I have to be in the bathroom right now…or else. (I will admit here that I haven’t always made it.) I’ve learned to keep a book in my purse, because it helps me to have something else to focus on.
I’m always amazed at the number of people who have this kind of problem…I guess because it does make you feel so isolated. I’ll be praying that your new doctor has some new ideas, and that everything improves in the new year!
[...] I’ve told you in the past, I suffer from ulcerative colitis. I hope that through weight loss, regular exercise and a better diet I’ll be able to keep [...]
Hey there, I just recently came across your blog post because I was diagnosed with UC this past weekend. I am a young mother of 4 and was the healthiest when BAM! everything changed. I feel so helpless right now as the flare I had made me be in hospital for a week, and I’m still recovering. I have been put on 8 pills of Salofalk a day and can relate to your story of rearranging your schedule around going to the washroom. I am praying that I will recover soon and have no symptoms for a while…but I am so discouraged that this is something I have to deal with for life. Thank you for sharing your story. You are not alone. ~Jen