Seriously. I want Crohn’s Disease. Do you know why? Because it would be a diagnosis, finally, and it would make sense; my maternal aunt has Crohn’s Disease with rheumatoid arthritis.
Things are about to get icky. If you’re not down with the icky, I totally understand if you leave right now.
Let’s compare my symptoms to those of Crohn’s (and if Firefox knows what’s good for it, it will stop telling me that I am misspelling Crohn’s).
My Symptoms:
These occur during a flare-up* of whatever the fuck autoimmune disease I have.
- Bubbles inside of mouth
- Dull aching to sharp aching pain in arms, legs, hips, back
- “Patches” on my hands and fingers that feel as if they have been scraped when touched but there is no visible injury. I’ve had these invisible patches since I was a little kid. I always thought it was normal.
- Little “cysts” on my hands and fingers
- Blood in and with my stools, very hard stools
- Little “cysts” on my asshole (told ya it was about to get icky)
- Styes on both eyes
*I say flare-up because the symptoms are not always present. I can go hours, days, weeks, sometimes months without any symptoms, and then BAM! A few of them or all of them pop up at once. Sometimes, they only last a few hours. Sometimes, they last days.
Symptoms of Crohn’s Disease:
Taken from MayoClinic
- Diarrhea, though I have heard of some people with Crohn’s who have the opposite problem — my problem
- Abdominal pain and cramping — When I looked up the symptom’s for Crohn’s last night, I suddenly thought of all of the times I had severe abdominal pain and cramping. I’d always thought it was normal, just my body’s way of saying, “Time to go!” but now I’m thinking it isn’t. Should I add it to the list?
- Blood in your stool — Hi. I’ve filled a whole toilet with blood on several occasions. Talk about being on the verge of passing out. That is so not normal.
- Ulcers — Meaning, ulcers in the intestine and in the mouth, similar to canker sores. My little “bubbles” don’t hurt, but they’re there. I have no way of knowing if I’ve got ulcers in my intestines without going for a colonoscopy. I’m not very keen on doing that.
- Reduced appetite and weight loss
- Fever
- Fatigue — Fuck yes. I’ve had a lot of late nights lately, but sometimes even when I’m getting what I think is enough sleep, I’ll get hit with this “bone tired” feeling that I’ve never, ever felt before.
- Arthritis — Even though all of my arthritis tests keep coming back normally, I’m pretty sure my pain is arthritic. I know I’m not crazy. Then again, crazy people don’t know they’re crazy. Oh fuck, I am screwed.
- Eye inflammation
- Skin disorders — You can file styes and eczema under “Skin Disorders.” I’ve had eczema for years but never attributed it to anything. More and more I am finding out that things I’ve always dealt with are probably related to my Mystery Autoimmune Disease.
- Inflammation of the liver or bile ducts
- Delayed growth or sexual development, in children
So is it Crohn’s? Maybe not. But I need a damn diagnosis, before I go crazy. It would make sense for it to be Crohn’s, since my aunt has Crohn’s.
I go back to see my PA on Friday. I haven’t seen her regarding all of this in a while. I was seeing a rheumatologist for a few months, but he is either very absentminded or crazy, because every time I see him he has a different plan or take on things, and he also seems to forget what I’m there for. I want to update Pam (my PA) with all of my symptoms and pick her brain on the Crohn’s. If I’m going to test the Crohn’s waters, I’m gonna have to get a colonoscopy, which is totally not cool but probably very necessary. Last time I mentioned my potty problems to her, she said if they persisted I would have to go get one. I became very careful not to mention it again because the thought of anything touching me there or going inside there sends me into tears. I have a good, very personal reason for not wanting to get the procedure done, but the symptoms have not gone away. They seem to be in sync with the rest of my symptoms, all popping up around the same time and then relaxing a little.
I think it’s time to take the next, very scary but very logical step and arrange for the colonoscopy so I can either check Crohn’s off the list or adopt it as my official autoimmune disease, and definitely so I can make sure none of my intestines are damaged.
Either way, it’s time to get back to sleuthing. My life is pretty much on hold until I solve my own episode of Mystery Diagnosis. I want my life back, and I’ll take whatever comes with the Mystery Autoimmune Disease if it means that I can have a diagnosis and treatment plan. I don’t care about a cure at this point. I just want to be able to have the future I’ve always wanted: marriage, a family, continuing with my career and other projects, continuing with my writing. I definitely can’t have any kids until I know what is going on.
So, to the doctor I go (again)!
PS (01/28/2010): Just fixed a bunch of typos. Sorry about that.
Ugh…that sucks. However, I just read an article today that vitamin D might help. Good luck with your maladies.
Hopefully they figure it out soon! I’m sorry you’re still waiting for them to figure it out
Sorry to hear that! I feel your pain. I’ve had Crohn’s for 17 years or so. And I’ve had a lot of other stuff that I have struggled to get a diagnosis for. Hang in there! Everyone has an idea of how to help or some miracle cure. The one thing I found that actually worked was the Specific Carb Diet. You’ll see that the book has nearly 250 reviews on Amazon with a near five star average rating. It is a pain in the neck to fix the food, but if you can manage it was the best I have felt since I have had Crohn’s. Keep me posted…
http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=sr_1_4?ie=UTF8&s=books&qid=1264711423&sr=8-4
You need to have your doc check out a diesease called “Sarcoidosis” my little brother has it and it fits your symptoms better than chron’s. Google it at least, itis another possibility. Good Luck sweetie!
I just Googled it and the musculoskeletal sarcoidosis symptoms are pretty damn close to mine! Is it an autoimmune disease? I had a positive double stranded DNA test, which I’m told means I have some kind of autoimmune disease (they just don’t know which one). I will definitely ask Pam about it tomorrow. How is your brother?
Thank you, Chris! I will definitely keep it in mind. I’m sorry that you’ve been through the mill, too. It’s such a pain in the ass, isn’t it?
I hope so, too. I’m starting to feel like I’m going to be waiting forever, you know?
I did try taking vitamin D supplements for a while, but it didn’t seem to help. I’ve also had vitamin B12 injections, and that didn’t work either. Grr. Thanks, though. If you come across anything else, let me know!
Can you email me, I think it is a little too personal to post here. I will tell you everything I know just send me ur email address!
Sorry about that! I just sent you an email. Look for an elizawhat at gmail.com address. (:
You’re such a fighter E! I know you don’t feel very brave or anything like that since you’ve been putting up with your ailments for so long; and I know you get fed up with it all quite often. But you keep on keeping on and that’s really inspiring to me.
You’re blessed with a great guy and loving family members though a lot is stacked against you. You are more than deserving of opportunity after opportunity to “let it all out” anytime you feel the need. I’m so glad you use your space on the ‘net to share. … You’re not alone and it’s great that you’re reaching out to others who may think they’re alone.
Keep shinin’ E. And by all means, keep writing. We’ll have a book signing together someday ‘kay?
Ciao for now!
Aww, Ted, thank you so much. Your words helped a lot; it’s comforting to know that I’m not alone and that everyone reading gets it.
How are you, anyway? Are you still overseas?
I think I might have Crohn’s disease, I didn’t even know it existed until reading this. I’ve been having the “bubbles” in my mouth since I was a kid, the digestive parts, skin disorders (from random sore spots on my hands like you’ve also described, to the fact that I’ve still got “acne” that just plain doesn’t go away, possibly. I’ll have to talk to a doctor of course.
It sounds like things are looking up for you from this post to the next (I hope so!!), Pam (your PA I think you called her, I’m not sure what that is) is doing well so far in helping you =)
She really is! I had pretty much lost my faith in doctors until I started seeing her. She listens to what I have to say, takes my feelings and ideas into account, and always has a plan of action, as opposed to just handing me a prescription for random drugs and sending me on my way.
You should definitely see someone about all of your symptoms. If it isn’t Crohn’s, it definitely sounds like some other type of autoimmune disease. Let me know if you go see a doctor.