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.

Its chronic. I can't go to the doctor.

People with chronic illnesses cannot go to the doctor every time they are too sick to go into work. Their doctors give them medications to manage their illness and trust them to take their medications responsibly. This affects work relationships in two major ways.

First, you cannot lie about being too sick to work ever. Your employer must trust your word that you are too sick to work. If you break that trust, it may cost you your job. With healthy people, this simply means a doctors note is required for each time they are sick. For a person with chronic illness, it has already been established that this is not possible, so they are put on probation and if it happens again, they are fired.

Second, you absolutely must know your limits. You cannot work through being too sick to work. It is better to stay home if you are unsure about being able to make it through the day. If you feel better, and can go in for half a day, then go in. Otherwise you must maintain the sick role until you can return (no going out etc). This is also to maintain the trust relationship. If you work while sick, you may become a liability and break the trust of your employer. If you feel better when staying home and are seen out and about (seen as being fine), then you also break the trust even if you were too sick to work but ok to do other things. Again, for a healthy person, this would mean getting a doctor's note. For a person with a chronic illness, this can cost you your job.

For healthy people reading this, here is an example of a sick day for a migraine:

You wake up early (3-8am) feeling like a zombie. If you are unable to fall asleep again, you realize as soon as you sit up that something is wrong. It hurts to look at the clock on your phone. It's an abstract pain behind one eye - piercing and pounding but without a precise location. You are dizzy and disoriented. You are nauseous but hungry and dehydrated. Your first thought is that you just need to eat, drink water and take Tylenol/caffeine and you'll be fine. You can only handle one glass of water and a couple bites of plain food (crackers, apple or apple sauce, no dairy, etc). Light, noise and movement increase the intensity of your headache. It spreads to your entire scalp and down your neck; your face feels twitchy; your muscles are tense and aching; you feel more nauseous. You now realize it's a severe migraine. You call in sick and take your meds. All of your symptoms worsen over the hour it takes for your meds to start working. You're restless but you can't move; movement makes it worse. You shut out as much light as possible; light makes it worse even with your eyes closed. You shut out as much noise as possible; you can't listen to music or the tv; you can't use ear plugs because your eardrums are pounding as if next to an amplifier at a rock concert; even the thought of ear plugs or head phones hurts. So you lay perfectly still in the silence with your eyes closed, praying that you don't vomit, until your meds kick in. When the meds finally start working you can either sleep or sit like a zombie and read or watch TV. But you cannot function.  Thinking hurts. Talking or listening hurts. Moving hurts. Eating hurts. Drinking hurts. The TV or book hurts, but you must do something to calm your mind.

Now, understand that this can last for up to 72 hours (more than that and they hospitalize you).

Thank you for reading this. I hope it has given you a greater understanding of my suffering and the suffering of people with chronic illnesses.

Surgery for endometriosis excision and going to grad school

I've been absent from this blog for quite some time due to illness and circumstances. Here is what has happened since April:

I had severe chronic migraines starting in April with an unknown cause. They still don't know. I haven't had an MRI yet, and I am on medication to suppress the migraines, which are still an issue. My current health care provider insists that neurology will not see me if my migraines are under control with my current medications, so the MRI is far in the future, despite recommendations from my previous neurologist. At least they are mostly under control. The medication also helps regulate my sleep cycle.

The first medication I was prescribed for migraines, Zonegran/Zonicimide which is related to Topimax, caused severe memory loss and disorientation. My neurologist originally did not think it was the Zonegran, but after a lumbar puncture to eliminate other diagnoses, it was determined that the medication was the cause. However, this took until August, and I feel sometimes as if my brain is still healing from the extended episodic amnesia. 

During that time I also had an exacerbation of endometriosis. It had been getting progressively worse over two years with the inclusion of severe digestive issues. Due to severe bouts of constipation and diarrhea, with painful bowel movements, I began a gluten-free, dairy-free, egg-free, tea/coffee-free diet. I have an allergy to aspirin, salicylates, and sulfites. It's a common combination allergy that causes asthma and polyps in the sinuses. I've had a few asthma attacks over the years, but I have severe chronic sinusitis. The lack of nutritional guidance caused bowel inflammation that resulted in adhesions to my vaginal wall and abdominal wall over the sciatic nerve. I had symptoms that mimicked Multiple Sclerosis. The doctors insist the endometriosis is not involved in this process, but the results of my surgery is that my endometriosis had progressed in the same areas from where it was excised in 2006, and the bowel adhesions were in areas where endometriosis was previously excised.

In summary, endometriosis, bowel adhesions and migraines = a terrible summer spent mostly in bed, in pain, and most of which I don't remember well.

After the surgery, which reduced the bowel complications and removed the endometrial complications (uterine spasms, abnormal heavy periods, chronic pelvic pain), I was able to go to graduate school as planned. I'm in a PhD program for neuroscience.

I'm seeing a progressive nutritionist. I'm making lists of safe and unsafe foods. Shrimp was recently added to the list. I went to dinner with a friend Saturday night, and yesterday I had a migraine. We had shrimp in spring rolls. Shrimp was the only factor which was questionable (all other foods were safe), so it is the most likely cause of the migraine. Apparently migraines and skin sores (which I had over the summer) are signs of severe food allergies. My diet is still gluten, dairy and egg free. (Also, tea, coffee, wine and chocolate free - salicylates)

My doctors still think I might have an autoimmune disease, but there have not been any further tests or diagnoses since I am functional again. Hopefully it will be figured out eventually. Considering that endometriosis has an immunological component and patients commonly have comorbid autoimmune disorders, it is likely that I also have one. ...At least I lost 15-20 pounds since I can't eat junk food anymore (preservatives = bisulfites = unsafe)

Hope you all are faring well!
~Alison