Tag Archives: crohn’s disease

Still a mystery

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So, the colonoscopy.

Dr. Z came in to talk to me as soon as I’d woken up a little — anesthesia makes you feel drunk as a skunk when you first come to — and showed me pictures of my intestines.

Wanna see? Too bad. It’s way too gross.

He went over all four pictures on the printout. One showed a bunch of weird little bumps on the inside of my intestines, and my stoned little mind thought for sure that he’d say, “This is a sign of This Disease,” but instead he said, “Those are normal for people your age.”

The rest of the pictures he pronounced normal, and told me he’d be looking over the biopsy samples and to call his office Tuesday for the results.

Fuckity, normal again.

I know I should just shut the fuck up and be grateful that I don’t have anything immediately wrong, but he didn’t even find any hemorrhoids! So where, please, is all the bleeding coming from?

I’m really starting to think I am going insane. How can so much be wrong and yet be normal at the same time? I really wanted him to have an instant answer, but maybe the biopsy will show something.

If not, I honestly have no idea what the next step is. Before going into the operating room, I jokingly said to my mom and Mike that if everything came back normal, I’d kill myself. The truth is, I feel that way all too often because it’s frustrating as hell to see doctor after doctor, go through test after test, only to hear, “Everything’s normal.”

Did I really just spend twenty-four hours on a liquids-only diet, drinking the nastiest shit in the world, spending half of my day in the bathroom, only to go under anesthesia, have a procedure done that most people my age never even have to think about, and have everything be normal?

Throughout the day yesterday, I kept telling myself, “It’ll all be worth it. You’ll get answers. Just keep your eye on the goal!”

I know I should hold out for the biopsy results, but my status quo of hope is up for the day. I think I need to quit quitting and go get me a pack of smokes, cowboy style.

PS: I know I have a bunch of comments to reply to, and I thank you all for your well wishes. I just don’t have it in me to answer comments right now. But still, thank you all.

Not normal

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This month is going by so fast. Softball starts soon, which I am really looking forward to; Mike and I bought our cleats this past weekend and mine are Adidas, which makes them the first pair of Adidas I’ve ever owned*. My biggest web design project is almost finished; I’ll soon be putting most of the money I make aside and some of it into starting my sleeve. The weather is getting warmer (especially if you just ignore all the cold rain we had this past weekend). Sundresses and flipflops are pushing aside coats and boots in the stores.

It truly feels like life is just cruising along. As rough as things have been, things are also really good. And yet, I’m really apprehensive about the colonscopy I have to have on the 31st.

It’s not really the procedure itself that scares me. I’m going to be out during it, so I’m not worried at all (especially if I ignore the horror story I heard about a lady who got one done and ended up getting her intestines punctured during it). The gastroenterologist who’s doing it did my aunt’s and diagnosed her, so I’m not worried about his capability. What I’m worried about is after.

Either he is going to have an answer for me, a diagnosis, or he is going to say the words I dread most: “Everything is normal.”

Everything is not normal. Sometimes I feel like I’m trapped in my own body while it attacks itself. Some symptoms make me feel so gross and icky, like maybe I should hide (although Mike reminds me that I’m loved and beautiful). And yet, with all of the things going on, each specialist I see is completely baffled. Some just give up. Some have been cruel, advising me to get a gym membership or see a psychiatrist. (I’m not kidding.)

I’m not sure I can take another non-diagnosis. I just want to know what’s wrong. I want to have a name to put to this disease. I want to say, “I have Blah Blah Blah Disease,” instead of, “I don’t know,” when someone asks me what’s wrong. I’m tired of being a medical mystery.

So, even though the days seem to slide by, it’s taking forever for the 31st to get here. I know I won’t get any answers directly after the procedure, but I have to hope that after analyzing the samples he’s going to take, Dr. Z will sit me down and say, “You have Blah Blah Blah Disease.” My aunt insists that I have Crohn’s Disease, that I’m so much like she was at my age, but after seeing specialist after specialist after specialist who said, “Nope, you don’t have Carpal Tunnel,” “Nope, you don’t have Rheumatoid Arthritis,” “Nope, you don’t have Thoracic Outlet Syndrome,” I’m afraid to hope.

*Growing up, my parents didn’t have a lot of money. We weren’t poor but there was no way in hell I was ever getting a pair of Adidas, even when I begged and begged for the “shell shoes” everyone wore when I was in middle school. I got the Walmart version instead. I’m actually glad that my parents didn’t buy me and my sister stuff like that; I know how to look past what’s “in” and go my own route.

Another scary C word

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Nothing is scarier than cancer, as I watch one loved one fight it and another wonder if she will be fighting it, too. And yet, I have to admit, my own health problems are scary, too, and I shouldn’t feel guilty for worrying about myself. (No one is making me feel guilty except me, in case you were wondering.)

Still, when I made an appointment with the gastroenterologist, I knew what that meant:

COLONOSCOPY.

Because if I’m going to explore all possible diagnoses, I’m going to have to see if Crohn’s Disease will either be crossed off the list of possibilities or if it will be The Ever Elusive Mystery Diagnosis. And maybe, just maybe, even if it isn’t Crohn’s Disease, this procedure will give me another answer. There are so, so many autoimmune diseases, and even more other diseases out there that could be my disease.

I don’t even care what it is at this point. I just want to know. I don’t want it to be anything that will greatly incapacitate the plans I have for my future, but I feel like my future is on hold anyway until I find out what is wrong.

So, on the 31st, I’m going to tell my fears to fuck off and I’m going to go to an outpatient surgery facility. I’m going to drink nasty stuff the day before, and I’m going to go in there and get knocked out with an anesthesia. I’m going to feel nothing — literally — as Dr. Z checks my intestines and patches up or removes anything that needs to be fixed or removed. And, I’m going to hopefully wake up with ANSWERS that will explain these crazy symptoms, symptoms that many doctors and specialists have called “perplexing”:

  • Bone and joint pain in arms, hands, fingers, feet, legs, knees, hips, and back
  • Sores inside of mouth — uncomfortable, but not painful
  • Patches of skin that feel sore or burnt to the touch, but no injuries are visible
  • Cysts on hands and fingers
  • Blood with or in stools
  • Hard stools with little product
  • Soft stools with too much product
  • Fatigue
  • Hypoglycemia — may or may not be relevant
  • Severe stomach pains
  • Depression
  • Positive double-stranded DNA test

As Dr. Z said when I saw him this afternoon, “You don’t want to be an interesting case.”

I am not a big, brave dog

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Later today, I’m going to see a gastroenterologist to see if I have Crohn’s Disease. At first, I was amped up. But now, I’m pretty nervous.

I’m always on the edge of a nervous breakdown when seeing a new doctor. I wish I could say I had a braver face, but after seeing specialist after specialist, getting no answers and sometimes ridiculed, I’ve become this absolute mess when faced with seeing a new specialist.

The fact that I am going to see a gastroenterologist and that I know very well what I’m going to have to do to see if I have Crohn’s Disease is not helping.

I wish that I were brave enough to say why, but it’s still just too painful.

And, aside from all of that, there is a little voice inside that asks, “What if I put myself through all of this, and I still get no answers?”

I’m afraid of so much, and it’s only one little doctor visit.

I was going to see if Mike could go with me, but he has to work.

I don’t think I’ll be sleeping tonight.

Time to kick some depression and autoimmune ass

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I leave most doctor appointments feeling pretty frustrated, as if I’ve gotten nowhere and am starting over — all over again. Having an undiagnosed autoimmune disease means bouncing from doctor to doctor, telling my story over and over, and usually receiving a response something like, “Well, shucks, you’ve got a lot of symptoms, but fucked if I know what’s wrong! Also, all of your blood work is normal. You’re normal. Yay!” I try not to blame the doctors, but really — they’re doctors. They’re supposed to know, dammit!

I’m also always very hesitant to admit when I’m depressed. It’s easier to write about it here than it is to say the words out loud while looking someone directly in the eye.

But today — well, okay, technically it is now past 12am Saturday so this all happened yesterday — I shoved all of those fears aside and went to see Pam, my PA. And you know what? It wasn’t bad. At all.

Pam asked what I was there for, and I right away admitted that I’m having a hard time with my depression, and that things weren’t going too well with my rheumatologist. When I explained to her how I’ve been running through cycles — wanting to kill yourself one night and then being high on life the next two days is so not normal — she immediately agreed that I need to be tested for bipolar disorder and drew up a plan of action.

“I’d rather start you on medication used to treat bipolar disorder right away so that we can see if it works,” she said. We then discussed a few psychologists and a pain management specialist that she really likes, and narrowed it down to psychologist Dr. M and pain therapist Dr. P. We also decided that I would try Seroquel, a medication used to treat bipolar disorder. She explained that she has people start with 50mg for three days, then 100mg for three days, then 150mg for three days, then 200mg for three days, and so on, and that I would start to notice the effects within a couple of days. She also explained that people with bipolar disorder don’t normally respond to regular depression medication — or that it does odd things to them — which would explain why Zoloft basically made me a zombie and why Cymbalta made me hyper as a kangaroo on crack. She gave me samples of the Seroquel so that I wouldn’t have to pay for several different prescriptions, and said that she would see me back in two weeks to check on how the meds are working (and to call her in the meantime if anything comes up). I’m to call Dr. M before I contact Dr. P and am to start seeing Dr. M as soon as I can get in.

Then we moved on to my mystery autoimmune disease.

I told her that my aunt has Crohn’s, which I had apparently forgotten to tell her before. I also told her about the weird thing with my hands (I sometimes get little “spots” that are sensitive to the touch, as if I’ve been burnt or scraped, but there is nothing there). She confirmed my suspicions; this is another classic autoimmune symptom. She said that autoimmune diseases can attack the skin cells, so that is why I have that sensation. I’ve had this since childhood but never thought anything of it; I thought it was normal up until a week or so ago, when my hands were pretty much covered in these little invisible spots and I couldn’t let anything touch them because it fucking hurt.

We discussed me getting a colonoscopy to test for Crohn’s, and she said that she would contact my rheumatologist for his reports to see if he had any thoughts as to which autoimmune disease it could be before sending me to a gastroentologist. The last report he sent her was in September, and I continued to see him once a month through to November. I told her about how he didn’t really seem to remember me from visit to visit, and how each visit his ideas would change; one visit he would suggest that it was my birth control, the next he would send me for more blood work. From her face, I could tell she agreed with me that he is pretty out of it. (He’s a nice guy — don’t get me wrong! — but he’s pretty old. His brother was exactly the same way: nice, but very forgetful and a little cooky.)

Pam is going to get my reports from Dr. G (rheumatologist), and when I see her again in two weeks we’ll go from there.

I may not have gotten any solid answers this time, but I still feel like I got somewhere. I got the ball rolling on taking care of my mental health, which is ironically the easiest thing for me to fix (with counseling and medication, and with a diagnosis that will hopefully confirm my suspicions of bipolar disorder*), but it’s always hard for me to admit that I need to get help and to actually go get the help. I got the ball rolling on my physical health again, as well. I feel like I got a lot accomplished, because I took the steps I needed to take.

*Other people around me have also seriously suggested that I may be bipolar, including a social worker I used to see when in high school. Ms. Amenta, wherever you are, I miss you so much. You were the best.

PS: I should totally just make a “Depression” category.