Sick of It

I just need to vent for a while.

I’m so sick of being sick.  I didn’t sign up for this, and I shouldn’t have to deal with it.  It’s not fair.

Today, I woke up in my own shit.  A few hours later, I crapped myself again.  I’ve spent the last several hours trying to clean bright orange shit stains out of my clothes, my sheets, and my mattress.  I can deal with the mess, the grossness, and even the embarrassment.  I’m used to those things by now.  What I hate is that I can’t even control basic bodily functions.  Until this last year, I hadn’t crapped myself since I was about two years old.

I called C in tears an hour ago.  She brought me adult diapers.  DIAPERS.  I am 27 years old, and I have to wear diapers.  Nobody else will know, but it still feels incredibly humiliating.

I just don’t think I can take much more of this.  I mean, I do all the things you’re supposed to do: I changed my diet, I take my meds, I see my gastroenterologist.  Things are better than they were a year ago, but I’m still sick.  I’ve never gone into remission.  This disease still greatly limits what I’m able to do.

Days like today just make me feel so hopeless.  Instead of calling through my phone bank lists, I’ve spent my day on the phone with my GI doc’s office and C.  I want to curl up in bed and sleep to escape all of this shit, but I can’t until I get the bright orange stain out of my mattress and dry it out.  Also, both sets of sheets I own are currently in the washer.  And I need to do another load of laundry because I no longer have any clean underwear.

Fuck ulcerative colitis.

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18 Comments

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18 responses to “Sick of It

  1. everyonesgottagrub

    Hi… I’m so so so sorry to hear you’re in such pain and frustration. My heart goes out to you! What did your GI doctors say?

  2. kat

    im so sorry that you have to go through all this. how frustrating, especially since you are doing everything right to manage this. you have every right to feel mad, sad, frustrated, and let down. i cant imagine what you deal with. sending you caring and healing thoughts and safe (((hugs))) if you want them.

  3. That was a remarkably mild rant for what you are dealing with. I would be way crankier I’m sure. Regarding the adult diapers I have a thought. It is wonderful that the product exists. I remember dealing with elders and soiling issues back in the era when they were not available. Another thought, water proof mattress pad– probablly hard on your budget but so time saving. I guess the DYI alternative is spreading out garbage bags and towels under a regular mattress pad or even your fitted sheet. (I have experience with menstrual “flooding” — too much experience!).

    • I’m definitely going to invest in a mattress pad ASAP. I hope I can find a waterproof one that doesn’t make crinkling noises every time I roll over. I had one of those when I was a kid (I had bed-wetting issues), and it kept me from sleeping.

      • There are waterproof mattress pads where the waterproofing is layered between fabric so none of that old fashion crinkling. I got curious and checked around online, Overstock,com has a number of options for under $30. Mine were way pricier but have lasted over 15 years. Happy shopping.

      • Nice! I’ll check that out. Thank you!

  4. Oh honey 😦 I lost bladder control some time ago and have been trying to build it back up ever since. They say mine is nerve damage so there’s really nothing I can do…I know how humiliating that feels. xoxox

    Is there any way to stop it? I’m so sorry…it’s about the last thing you needed to have to deal with.

    xoxox

    • The only way to stop it is to control the UC, and that’s proven rather difficult. I’m back on the steroids, so that should help in a week or so.

  5. Mandy

    I’m so very sorry for what you’re going through. The loss of control of bodily functions is terrible and many of us are dealing with different aspects of it. My aunt got Crohn’s at 30 and much of what you’ve written sounds like things she’s written me. Fortunately, things got better, but when you’re going through it nothing feels like it will get better! Unfortunately stress probably doesn’t help a bit, but what could be more stressful. Hopefully things are better soon. (hugs!)

    • Yeah, the symptoms of Crohn’s and UC can be very similar. I hope things get better, but I’ve nearly exhausted the available treatment options and still haven’t gone into remission. About a third of UC patients never go into remission, even with treatment.

  6. I’m sorry you’re having such a terrible day 😦

  7. “Fuck ulcerative colitis.” YES. I remember the first time I got the Depends. And how awful it was thinking I may wear them for the rest of my life. Relieved a lot of stress though, wearing them. Sorry you are in such a bad flare right now. I really hope it gets better soon. I don’t know how bad your UC is, but if you have any questions about J-pouch surgery, if it comes to that, let me know. I think- I know- it saved my life.

    • I’m just curious what led up to you getting your surgery. I’m at a point where I’ve exhausted most of the drug options (I’ve done mesalamine, prednisone, budesonide, 6-MP, and Humira), and I’ve improved from when I was first diagnosed but never gone into remission. My last colonoscopy, in March, showed only mild-moderate inflammation, but I’m still having accidents, leaking, and in pain most of the time, not to mention the constant fatigue and nausea. My diet is incredibly limited. But I’m concerned that my doctor will think I’m nuts if I start asking about surgery because the colonoscopy didn’t look that bad at all.

      • Sorry I didn’t reply to this sooner, I took a break from my blog and for some reason I didn’t get any notification you had replied to my comment. I was diagnosed in April, tried mesalimine, prednisone, budesonide, flagyl and cipro, then remicade. I had an allergic reaction to the remicade on my 4th treatment and couldn’t get approved for Humira or Cimzia- at the time they were not approved for treating UC. My GI started talking about Imuran, but I finally just asked him if it was likely inevitable I would need surgery at some point. He said I probably would. I didn’t see the point in putting off the inevitable by using more strong drugs to just buy time. So he sent me for a surgical consult.
        The thing is, even if you’re only showing mild-moderate inflammation, it’s interfering with your life on a great scale. A j-pouch is supposed to get your BMs down to 6-10 a day. There is still some possibility of control issues. But the pain in the stomach that makes you want to die? GONE. Now- I have been a bit of rare case- my surgeon thinks I may actually have Crohn’s and that could be why I’ve struggled more than most. I’m on Humira now and doing better- it’s been a year since surgery and I’m finally starting to get down to that 6-10 range. I still have an accident or two every week. So it’s not perfect. I still wear the depends 🙂 BUT it’s a HELL of a lot better than the life I was living before. Even the temporary ostomy was so much better. I think it’s worth talking to your dr about surgery. It’s about quality of life, and I can’t see where a surgical consult would hurt. You may decided to wait it out. But if all you’re doing is waiting to get sicker and in the meantime you are in and out of the hospital and unable to work or do the things you used to, I think it’s worth asking about. You can email me at o o n j a @ hotmail . com (no spaces of course) if you have more questions… Then I’ll be sure to see. and I’d be happy to answer….!

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