No Crohn's Disease. Onto the next doctor...

So there is this "syndrome" associated with endometriosis, which currently has no pathological diagnostic tests. It's called visceral hypersensitivity or visceral endometriosis. Since endometriosis can manifest without tumors (yes, they are benign tumors) being visible to the naked eye - aka microscopic endometriosis - it is possible that microscopic lesions are responsible for many of the "idiopathic" symptoms of endometriosis.

Let me be clear. I have joined several groups supporting women with endometriosis and endometriosis research. All of my closest friends with endometriosis started suffering from visceral symptoms between the ages of 25 and 30. All of them. Now I am included among them. There is a very slight, infinitesimal, chance that I have (mild) Crohn's disease in my small intestine. The chance is so non-existent that my GI felt comfortable dismissing it without a barium enema/CT scan or this camera that takes pictures of your intestines. But I still have symptoms - mild bloody diarrhea, constipation, pain, difficulty digesting protein or milk products, severe food sensitivities (milk, eggs, salicylates, sulfites), severe skin sensitivities, vitamin deficiencies (malabsorption). There is obviously something wrong, but no one knows what that something might be. My inflammation levels are moderately elevated, which could explain some of my symptoms (joint pain, eczema, "hay fever") but not others (food sensitivity, malabsorption, chronic infections). This is a common cycle for people with endometriosis.

I'm currently in a position, as a grad student, where my employer/mentor has the ability to be lenient. But you can only ask for so much leniency with no diagnosis.

I have another sinus infection(?) or ear infection or something. I have a doctor's appointment today. I've already been cleared by the EENT. Auto-immune seems the most likely diagnosis, but it could be another 1-2 years before a diagnosis. (I've already been waiting for 7 years.) Hopefully they find a diagnosis before it destroys everything I've worked for. I've spent 10 years getting to grad school. Now I just have to survive it.

Electric Car Blues

I recently purchased a 2013 Nissan Leaf, which is 100% electric. It goes about 90 miles on a full charge, but it will go further if the route is flat. Unfortunately, I live in the foothills of the San Bernadino mountains, which are full of winding canyon roads. While the drive is beautiful, it's rough on my car.

There are some things you should know about electric vehicles. First, electric vehicles don’t measure power like your typical gas vehicle. Instead of RPM and MPG, there are “miles per kilowatt” and a power bar on your dashboard with colored dots. White dots use power. Green dots recharge the battery. It uses approximately no power for one to two white dots. Going uphill uses 3-4 dots of power to maintain speed. If you have to accelerate uphill, it can use 5-6 dots. You use power to accelerate and go uphill. Second, if you need to charge your car, it takes about 1 hour for 25%, 2 for 50%, 3 for 75% and 4 for 100% charge from zero charge. These are 240V “fast chargers.” At home, if you use a standard outlet (120V), it takes 12-16 hours to charge to 100%. Finally, there is a meter on the right hand side that has bars of power (about 10 miles per bar of power) and an approximation (in miles) of how far your car thinks you can go. Usually you can go much further, but it is not recommended to push your limits.

Today, I pushed the limits. My friend, who cannot drive, needed someone to take her for a medical procedure, and I volunteered. I was hoping my car would be fully charged after charging overnight, but I was two bars short of a full charge. This means my car thought I could go 70 miles. My friend’s house is about 10-15 miles from my house, and the drive is relatively flat, so I used very little charge to get to her house. Her doctor’s appointment, however, was about 20 miles away, near my work. When we got to her appointment, I was down to about 50% charge (45 miles). I had known ahead of time that we were stopping at her cousin’s house after her procedure, and I was pretty sure I’d have enough charge to get her home and then get myself home.

When I dropped her off for her procedure, I did go and look around Riverside (CA) for a place to charge. There are three parking garages, each with two charging spots near the hospital, but all were full. There are no charging spots between Riverside, my house and her house, so I knew if I wanted to charge that I needed to stop in Riverside. Since I thought we’d be fine, I decided not to make her hang out at my work to charge the car.

After my friend’s procedure, her doctor changed her medication, and she wanted to stop by the pharmacy on the way home. I told her that was fine, and there are many pharmacies between Riverside and her house. Unfortunately, she wanted to go to a specific pharmacy that was an extra 10 miles past her house. At this point, I’m starting to worry that I might not be able to take her to the pharmacy and make it home. We are already out of Riverside, and she was not feeling well, so I decided not to argue. Remember, she cannot drive, and there was no one else available to help her out today.

By the time we finished at her cousin’s house, I was down to three bars of power, which is literally the amount I needed to take her home and get home, but I hoped I could push it a little further by driving more slowly and turning off the A/C. So I rolled down all the windows and we cruised down a flat street to the pharmacy. When we left the pharmacy, I had one bar of power left. Then I started panicking, but I did not want her to see my distress. Since the pharmacy is in a small town, I was able to drive under the speed limit in the right lane without any trouble. When we got to her house, I was down to no bars of power.

I have made it home from her house with only one bar of power twice before. Remember, there is nowhere that I can go to charge on the way home, so I took a deep breath and prayed my way back into the foothills. Again, it’s relatively flat between her house and my house, but I do have to go uphill to get to my street. I said a prayer at every red light, only accelerated between one and two dots of power and avoided looking at the flashing lights on my dashboard. There have been several times that the “gas light” has come on when I was about five miles from my house. Well, three miles from my house, an orange turtle appeared on my dashboard. While deceptively adorable, this caused me quite a bit of concern. All I could do was try to make it, so I gave my car a pep talk and started up the hill to my street, one mile from my house. Come on car. Come on car. I’m sorry. I’ll never do it again. Just one more mile, then we’re home and I don’t have to call a tow truck. Just one more mile.

I did not make it. I am literally stranded one mile from my house. I can see the light that takes me to my neighborhood. It’s just over the crest of this hill I’m stuck on. Luckily, I have roadside assistance, and the tow truck should be here any minute. My lovely car insurance company is not going to charge me to tow me one-mile home.

While I do not recommend experimenting with this sort of adventurous, dismissive attitude toward range limits, this was a fun experiment. I literally made it 10-15 miles on very little charge. My car did not recommend trying to go more than two miles. TWO! I was SO CLOSE. I almost made it. Obviously, in hind sight, it would’ve been better just to hang out at my office for an hour, or to tell my friend we could get her medicine tomorrow.

I was giggling almost the entire way home, entertaining myself with the profanities that my car must be silently screaming at me when I behave this way. My car said things to me (in my head), like, WTF is wrong with you, human? Do you not understand that I am out of power? I can’t take you up this hill. You need to find a charging station. (It actually does ask me multiple times if I’d like it to find the nearest charging station – which is further away from my friend’s house than my house.) I’m thinking about writing a skit with an electric car progressing from sarcasm to out and out abusive language at a dismissive human pushing the limit of miles per kilowatt. Possibly up a mountain, and then coasting back down once they run out of power. Either way, I think this is the least destructive way to deal with “range anxiety.” Just ignore it completely.

Crohn's Disease is Idiopathic.

I had my colonoscopy and endoscopy today. They found mild patches of inflammation (erythematous) in my upper GI tract. This is significant for two reasons. First, there are only two inflammatory bowel disorders (IBD), and of the two, ulcerative colitis affects only the colon/large intestine. So it cannot be ulcerative colitis. Second, the only disorder which involves patches of inflammation separated by healthy patches of intestine is Crohn's disease.

This is bad on a number of levels.
1. There is no cure for Crohn's disease.
2. They don't know what causes it (idiopathic), but it is an autoimmune condition, and is often associated with other autoimmune conditions. This means there's still the possibility that I have an underlying, undiagnosed autoimmune disease, in addition to Crohn's disease.
3. The drugs which are used to treat Crohn's at this stage are ASA's (aspirin-related drugs). Why is this bad? I'm ALLERGIC to ASA's and all related non-steroidal anti-inflammatory drugs (like ibuprofen).

One other thing you should know - it's not official until the biopsies come back. But there's also nothing else it could be.

I'm so angry. I told myself that at least if they found something, I would know something. But, had it been ulcerative colitis, they could've cured it. Instead, I'm set up to go through a slew of tests, which may all be for nought, to try to find the underlying cause of the disease. Crohn's disease is a ravaging disorder. All they can hope to do is slow it down.

It's been readily apparent to multiple doctors that I have an autoimmune disorder. I don't feel like divulging the details at this juncture, but suffice it to say that every primary care physician I've seen in the last 10 years has tested me for various autoimmune conditions. One of the main reasons was chronic sinus infections and ear infections with no known etiology (...idiopathic).

The digestive issues started when I was 19/20.  In 2006, I was having severe diarrhea, could not digest dairy products or eggs, had severe abdominal pain, and I lost 15 pounds (from 160 to 145). The  colonoscopy didn't turn up anything at the time. The doctors were worried I had cancer, and they finally did an exploratory laparoscopy, and found endometriosis. Although endometriosis could not explain my symptoms, I did improve after the surgery. Since then, I've had intermittent problems with diet, have progressively cut out all dairy, eggs, salicylates, sulfites (preservatives) and gluten, and still, obviously, have problems.

In case you missed my earlier posts, I had a bowel obstruction in June, which resulted in urgent surgery. They didn't find anything, which led to the colonoscopy I had today.

The good news is I'm not crazy. The bad news is it's as bad as I thought it might be. I'm going to have to find a support group, a rheumatologist (autoimmune specialty) and a good nutritionist. The list of foods I'm not supposed to eat is ridiculous, between the salicylate allergy and the Crohn's Disease.

~Alison

Idiopathy. Head, meet wall.

The entire left side of my body hurts. The costochondritis, which is "idiopathic" - no known cause, isn't just in the costo-sterno junction. It includes my left shoulder, radiates down to my fingers and started as numbness/tingling in my left hand. The steroids, which make the intense, burning pain bearable, make my intestinal pain worse because they decrease the production of mucus, which is currently coating the damaged intestinal wall. So, that's awesome.

More than that, I've been having shooting pain in my legs for a long time, associated with idiopathic (non-traumatic) tendonitis. Well, as of last year, that got bumped from idiopathic (aka - we have no clue) to "diabetic neuropathy," except I'm not diabetic.

So, let's put this together: chronic, worsening, intractable migraines on the left side; chronic, worsening, intractable neuropathy in my legs (first), and now in my hand/arm/chest - specifically, for both, on the left side; and chronic abdominal pain on the left side. Does this sound like a disaster waiting to happen to anyone else? ...Specifically the type of disaster that derails long-term plans like getting a PhD in neuroscience?

~Alison

Costochondritis

There's not a lot of research on costochondritis, but I think there should be.

I started having pain in my lower ribcage on the left side after lunch yesterday. I thought maybe it was my pancreas, since I know intestinal inflammation can lead to pancreatic inflammation. Naturally, this meant I was worried because pancreatitis is a serious condition, but I did what all chronically ill people tend to do - I waited a few hours before freaking out. Well, the pain got worse, to the point that it hurt to breathe and I couldn't get out of bed, so I called an ambulance and went back into the ER.

The doctor did not see me until after my blood tests were processed - thanks for leaving me in pain, doc. Since my pancreatic enzymes were normal, she quickly diagnosed it as costochondritis - inflammation in the rib cage. After doing some research online, this is what I've learned:

Costochondritis is most common in women over 40, and is associated with menopausal symptoms. While not commonly diagnosed, this is probably due to vitamin D deficiency, as costochondritis is also associated with vitamin D deficiency from inflammatory bowel disease like Crohn's disease and ulcerative colitis. Obviously, I have the latter, and am on vitamin D supplements.

The only current treatment for costochondritis is anti-inflammatories. The reason we need more research on costochondritis is that it may be a prelude to osteoporosis - which is usually not diagnosed until it is too late. IF costochondritis really is linked to vitamin D deficiency - for which there are currently few studies - then vitamin D serves as a treatment, and the diagnosis could be used to identify patients at risk for osteoporosis.

There is also, currently, no physical therapy remedy for costochondritis, that I could find. However, physical therapy is one of the key preventive measures for osteoporosis, making this diagnosis and treatment even more important.

While the medical field has no reason to vet the opinion of a lowly PhD student, I think it is worth looking into. And for my fellow endometriosis sufferers, be aware that pelvic inflammation can lead to malabsorption of vitamins. I have some friends who have already been diagnosed with costochondritis, but who have not been tested for a vitamin D deficiency. If you have this diagnosis, it is worth the blood test, and may save you significant suffering in the future!

~Alison

Tool used for hysterectomy and fibroid removal recalled

Johnson & Johnson's morcellator (tool) was used for "non-invasive" aka intra-vaginal hysterectomy and fibroid removal. Apparently this tool was used by some doctors without first performing a biopsy to rule out malignant growths.  When the morcellator is used on malignant growths, it can spread the cancerous cells, allowing the cancer to spread. If you or a loved one were affected by the use of this tool, you can probably make a claim against J&J. (Call a lawyer).

http://www.washingtonpost.com/business/economy/johnson-and-johnson-pulls-power-morcellator-a-controversial-surgical-device/2014/07/30/738e9956-1829-11e4-9e3b-7f2f110c6265_story.html


OPINION:

I have a feeling that it has the same effect on endometriosis.  Endometriosis is the growth of mutated endometrial cells growing in the abdomen. Although it is benign, it is a form of tumor, and attaches to foreign tissue in a manner similar to cancerous tumors. If morcellation was used in endometriosis patients to perform a hysterectomy, then it is possible that this caused the spread of tumor cells, allowing the endometriosis to spread after hysterectomy.

If you have had a hysterectomy and still have symptoms of endometriosis, you may also be able to sue for medical damages, wage loss, and emotional suffering. Contact a lawyer.

~Alison

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.