Pain

It's amazing how pain permeates every aspect of a person's being. Mercilessly, it consumes each characteristic, one by one, until you are a stranger to yourself. Memories of competence and health are murky reflections in a pool of anger, guilt and shame. Anything you love is vulnerable to the wasting disease, and it spares you no consideration, no comfort, no solace.

I sit, staring at mindless entertainment, distracting myself with puzzles, video games, and crafts. Simple creative tasks at least let me feel as if I've accomplished something. I can see the progress as some beauty unfolds before me, but I am constantly reminded that I'm wasting time. My agenda is full, but my plate is empty, and I'm starving for the life that waits for me on the sidelines.

I'm involved in an amazing research project for my PhD. Things are moving forward quickly, but I'm stuck in the muck. I've been sick for over a year now, and completely incapacitated for two months. I thank God that my mentor has been accommodating and understanding, because I'm not sure that I deserve it. It's not a question of worthiness, aptitude or potential. It's a question of competence. My number one asset, my brain, has shut down completely. At best, I have a few hours of clarity, a short time without the incessant rumbling pain in my intestines. But without sleep, I cannot make use of them, and many of those hours are spent going to doctor's appointments. I feel like I'm split in two. My body needs to stay home and rest, but my mind needs to go back to work.

I sincerely pray they find something in the colonoscopy/endoscopy. Anything that will lead to treatment. Anything that will lead to relief.

~Alison

Waiting for August 11th

I have a colonoscopy and endoscopy scheduled on Aug 11th. Now I get to play the waiting game.

Warning: the following paragraphs are relatively graphic in their description of my current condition.

My "good" days are long gone. My abdominal pain is increasing, and is often unbearable, even with the pain meds. It's no longer just my intestines. I have pain in the upper right quadrant, which is most likely my pancreas. The pain covers my entire left side and wraps around to my back. If I lay perfectly still, it'll reduce over an hour or so.

I was eating small meals when I first got home from my surgery. Now, I'm reduced to eating dry snacks, and most of my intake is liquids. I have vitamin deficiencies, despite taking vitamins orally, and am at risk for complications due to nutritional status. Eating is so painful that I now consume only liquids until I feel ravenously hungry, and then allow myself to eat dry cereal or rice noodles. But I feel better when I eat nothing at all. Despite taking in fluids, I have had to go to the ER twice for severe dehydration.

The pain is worst at night. Our bodies do most of their digesting at night. The hormones released by falling asleep at night activate digestive processes. These hormones are released whether you fall asleep or are kept awake by ridiculous abdominal pain. This is made worse by going to the bathroom. I am still forced to use suppositories once per day in order to excrete waste. The pain is so severe that all I can do is lay in the fetal position for an hour or more. I am supposed to give a stool sample at the hospital, and I don't have the strength to do it. I will have to do it next week on one of my better days.

The craziest part of all of this is that the GI doctor considers my condition relatively mild. This is due mostly to stable blood work - hemoglobin, clotting factors, etc. - and a lack of fevers or vomiting. But my condition is deteriorating. Sometimes I wish I would just crash so that I could be hospitalized and get these diagnostic tests done faster. Obviously, that is the worst possible option, so, for now, I'm just playing the waiting game. One day at a time.

~Alison

Escalation

Well, I finally have an appointment with the GI clinic. Ten days ago, when I called, they said they were reviewing my case. Today, when I called, they offered me an appointment on August 22nd. Naturally, I used my Army voice to insist on an earlier appointment because whether it's Crohns Disease, cancer or ulcerative colitis, it's eating a hole in my intestines. Of course, the poor admin couldn't do anything except give me the number to the case manager, which I sincerely appreciate. I left a detailed message and I have an appointment on Thursday. Considering the three emergency visits since my surgery, the list of symptoms, and the findings of the surgery, I have zero confidence in the case manager. Maybe she's overworked and underpaid, you say. Not my problem. My problem? The disease that's eating a hole in my intestines.

And today we can officially add pancreatitis to the list. My upper right quadrant hurts. Another score for Crohn's Disease.

Crohn's Disease Plus Endo??

I've been very sick lately. I just had my third exploratory laparoscopy. The good news is that my second lap was successful in removing all of the endometriosis. The bad news is something is seriously wrong with my intestines, and it's an internal problem.

Let's start with why I think it's Crohn's Disease.

1) it's been going on since I was 16. It's an on and off problem, but this is the second abdominal surgery I've had in two years to fix intestinal problems.

2) I have all of these symptoms: What is Crohn's Disease?

Symptoms related to inflammation of the GI tract:

• Persistent Diarrhea
• Rectal bleeding
• Urgent need to move bowels
• Abdominal cramps and pain
• Sensation of incomplete evacuation
• Constipation (can lead to bowel obstruction)

General symptoms that may also be associated with IBD:

• Fever
• Loss of appetite
• Weight Loss
• Fatigue
• Night sweats
• Loss of normal menstrual cycle

3) The doctors have ruled out everything except Crohn's Disease, Colon Cancer and Ulcerative Colitis. The symptoms fit Crohn's Disease the best.

Here's the nitty gritty:

I've slowly lost my ability to digest food over time. I have a true salicylate/sulfite/egg allergy. I have no other food allergies, but I have severe abdominal pain, constipation and migraine in response to gluten, and nausea/vomiting/diarrhea/migraine in response to milk products, shellfish and eggs. Essentially, I cannot eat processed foods. Solid milk products and wheat gluten are used in everything from baked goods to soup to seasoned meat. I just tell people I'm allergic to everything. It's very rude in the south to refuse to eat, but I have no choice. Luckily, I have a great support system through my family, friends and mentors at grad school, and my church family.

I've been slowly cutting out all foods containing shellfish, milk, eggs or gluten, even if it's "less than 2%" or made in a factory with other products. It's taken years to get my diet under control, and it's still not enough. The problems just keep escalating. I have bloody diarrhea, blood in regular bowel movements, severe constipation, abdominal pain, dizziness, light headedness, fainting, severe fatigue and difficulty eating or drinking due to feeling full or nauseous.

I've mentioned in previous blogs I'm allergic to non-steroidal anti-inflammatory drugs (NSAIDS/Aspirin). This means I have no way to treat the inflammation until I have a concrete diagnosis and can be put on steroids. The inflammation is what is causing the escalation of my symptoms and it is eating through my intestines. Yes, that's as painful as it sounds. It's been one month since my abdominal surgery, and I'm still waiting for the colonoscopy to be scheduled to get my final diagnosis.

Until then, I'm just praying it's not what it must be. Crohn's disease is a lifetime sentence to pain, disregulation and abdominal surgeries. I just got clear of endo, only to fall into Crohn's.

~Alison

Chronic illness

By Alison Smith, 2014

How many days spent counting days?
Feverish and sleepless nights
Wracked with pain; suffering alone,
Waiting for you to return.
Bodies come back broken,
Minds a waste from the desert heat.
Stress seeps into the bones;
Strangers coming home,
Reintegrated into this alien wasteland.
It's stolen a piece at a time:
Health, an empty promise.
Incisions and Vicodin mask the pain,
For a while.
I only exist in two places:
In the hole behind closed doors
And the waiting room.
Waiting for the clock to stop
Beating its hands bloody
Against the sands of time.