All Backed Up

I ended up back at the ER the other day. I hadn't used the bathroom in 4 days, as most crohnies know, this is rare. Last time this happened, i had a bowel obstruction. So i went in, waited for hours, only to find out i was really backed up but no obstruction. 2 days later i finally went. My stomach was hard as a rock and i was in so much pain. But now im back to going like 5 times a day. Gotta love crohns and it's unpredictability...

No Rest For The Weary

I cannot sleep. I take ambien and my doctor just started me on mini press for ptsd nightmares. But no sleep. None. Nada. Nothing.

I have slept a matter of a few hours over the last 3 days and I'm taking sleeping medication.  It shouldn't be like this! Last night at 5am I broke down and went to the store and bought 2 bottles of nyquil to use over the next week or so. I also bought some sleep aid similar to zquil.

I ended up taking half a bottle of nyquil and 4 doses of sleep aid before i got to sleep. That lasted 2 hrs. Not even a full 2 hours; it was a broken up and down 2 hours. Ahh!!! I feel like im going crazy!

Insomia, you're a bitch. JS.

Back Pain ER Trip

So i started having these severe, sharp pains in my back around my kidney and in my abdomen just below my ribs. It was hurting so bad, i couldn't sleep.

As much as i didnt want to, at 3:30am i caved and came to the er. I prayed on my way it wouldnt be a long wait or else i was going home and suffering through the pain. But God answered my prayer and there was no one in the waiting room.

They gave me fluids, pain meds and nausea meds to help..and they definitely did help. The doctor ordered blood work, urine tests and a ct scan of my kidneys.

All the tests came back great. Even though i suggested it may be my arthritis, the doctor feels its more likely a crohn's flare.

He gave me pain meds to go and is starting me in prednisone...yay, moon face will be back...😑😑😑

Praying my rheumatologist can get me on meds for my back and hoping my GI will figure out my flare (I have an MRI on December 10 and a cold in January).

I should be discharged in like 15min. Im ready to go home and sleep now!!

When You Live With Pain

I have been diagnosed with spondyloarthritis. And i cannot sleep! Even though im on ambien for my insomnia, the pain is relentless and i get no more than a few hours of broken sleep a night. I'm starting to get beyond frustrated with the fact my meds havent been preauthorized yet and my dr won't call me back.

When i saw him the 1st time, he asked my pain level. I told him a 10 because it was. I could barely move, walk, sit. I cant even bend over. He said no a 10 means you wouldnt be sitting here talking to me right now.

Hold on. Let me tell you something! For over a decade, i have been poked and prodded, been through chemo, a stem cell transplant, every test imaginable, felt like i was giving birth to my intestines 15-25 times a day, was malnourished, had multiple picc lines, almost died twice, had surgery, have given my self injections for years, broken multiple bones, had my bones drilled in to 3 times and God knows what else. I am not a stranger to pain. Just because you can't read it on my face, doesn't mean it doesn't exist. It just means I've been through Hell already so I know how to walk through fire.

Please don't underestimate my pain, based on my facial expressions.  You haven't live through what I have.

Cars and Couches

I have a Saturn car and it has a couple recalls so I took it to be fixed today. They told me 2 hours. And even told me to come back 30min after that to be sure they were done. So I came back...3 hrs later. Guess what....i sat there for 2.5 more hours!!! I was soooo irritated! Especially since I was supposed to get a new tire on my car and pick up a new recliner today.

Well i made it time for the recliner but the tire will have to wait. I hate it because the tire is so bare it's showing wires. Needless to say, I wasn't a happy girl today.

However, im relaxing in my wonderful new, oversized fluffy recliner with my kitties and it's just the stress reliever I needed!

My Back

Omg my back is killing me. I keep trying to work out but it's making my back so much worse. It's hard because I want to lose weight so badly and taking any break affects my self esteem. But i can't make my arthritis worse either. I have to call my doctor...again...about my medicine. Im going to talk to scheduling and make them leave a message because i left a voicemail on the nurse and doctor line almost 2 weeks ago and no call back yet. Like im not in excruciating pain smh.

Spondyloarthritis

So i have been having some serious back pain on top of my normal joint pain so I went to see my rheumatologist. He diagnosed me with spondyloarthritis. That is basically spinal arthritis. Im going to be giving myself shots twice a week of Acthar. I'm waiting for insurance approval now....ugh! I'll keep you posted!

Blogger App Back!

Finally got the blogger app back up and working! So expect updates!!

My 4th Re-Birthday

Today is the 4 year anniversary of my stem cell transplant! Happy 2nd birthday to me! Like a 4 year old in a 29 year old's body! Lol. It's been a long journey but I have been so blessed. Before my transplant, I wasn't going to live another year or 2. I was severely malnourished and had been bleeding internally for years and years. I wasn't responding to anything, getting worse every day. I could barely walk because of the pain. I was running 104 degree fevers every day. Surgery wouldn't have helped. Just as my doctors were throwing their hands up, I did my own research and found the stem cell transplant study at Northwestern Hospital...over 600 miles from home. I was there 9 months later. My sister was a perfect match and I took my stem cells well! Chemo was exhausting. I was so weak I couldn't lift a fork to feed myself. But after 28 days, I was finally able to go home and start my recovery! I have good days and bad days but I am so much better than before! I am so thankful! If I had the choice, I would do it all over again!

Stupid Blogger App

My blogger app has messed up and locked me out..AGAIN! So that's why I haven't been posting. I'm going to try to export my blog to another site.

PCOS Meds

So as I have told you before, I was diagnosed with PCOS this past year. And since it has caused me to gain 80lbs in 4 years, I have been working super hard to lose weight. My goal is to lose 30lbs this year at least. Then another 30 next year (since i was under weight to begin with, my goal is to lose 60-70lbs total). I have been exercising and dieting for over 6 months, hardcore for over 2 months. I have lost 5lbs in 6 months and can't seem to lose any more.

So my dr prescribed me Metformin. The side effects are upset stomach so I'm praying it won't be any nausea. I can deal with diarrhea since im used to it with Crohn's but of course im hoping that won't happen either. But the metformin will help control my insulin and should help me lose some weight. Fingers crossed!

Sinus and Oral Surgery Pain

The pain was getting better after my surgery but now im having nausea, headaches and pain behind my eyes and nose. Im guessing sinuses, which makes my mouth hurt more. But the pain meds will make me more nauseated. Yay....oh well.

Crohn's wise, i was cramping today but honestly i cant tell if it's crohns or cysts from my pcos. High ovaries= not being able to tell of it's my intestines or lady parts lol

Oral Surgery and Update

I had my top 2 wisdom teeth out Thursday morning. The bottom 2 were taken out in Chicago 2 weeks before chemotherapy. I kept getting infections in the bottom 2 so they hurried up and took them out while we were in Chicago to harvest my sister's stem cells. That way it would be covered by insurance under the transplant since, well, you can't have chemo with constant infections!

Anyway, so these 2 have been much easier. They sedated me (not like the 1st 2) and they don't hurt nearly as bad. I mean im sore of course, but in comparison I am handling these mich much much better! I'm already on almost all regular food!

I had a checkup with my GI yesterday. He said the camera endoscopy came back normal. He said since i keep having recurring problems, it's most likely a low level active crohn's. Hence it not showing on tests but still giving me problems. I took a course of cipro (antibiotics) and it has really helped so I am super excited about that! He said that may be something we revisit if and when I get sick again.

But for now, everything is going well.  I'm feeling good most of the time, im getting used to my new bifocal glasses and my gums are healing well!

Crohn's and Depression

Battling Depression in Crohn's Disease
By Connie Brichford 
Medically reviewed by Lindsey Marcellin MD, MPH 

Crohn’s disease disease is a difficult condition to live with: Symptoms of Crohn’s include diarrhea, abdominal pain and cramping, ulcers, and reduced appetite and weight loss — all of which can sap your physical energy and make you feel down emotionally. There's no question that living with these symptoms affects your mental and emotional well-being.

In fact, many people with Crohn’s disease experience depression. “Depression and Crohn’s are very commonly seen together,” says Frank Sileo, PhD, a licensed psychologist practicing in New Jersey.

Crohn’s Disease: Why You Feel Depressed

There are a number of reasons why people with Crohn’s disease experience depression. Understanding the connection between the two conditions is the first step toward dealing effectively. Here's what people with Crohn's disease should know:

Chronic illnesses affect mental health. People suffering from both a chronic illness and depression may find that each makes the other problem worse. “Individuals with Crohn's disease are dealing with a chronic illness that is out of their control," says Dr. Sileo. "There is no cure, and it impacts work, social, academic, family, and other areas of one’s life.” The words “no cure” carry a heavy weight. And not too surprisingly, facing a situation of that magnitude can lead to a more pessimistic view on life. Prolonged periods of feeling hopeless, helpless, and pessimistic are all symptoms of depression.
The physical challenges of Crohn’s disease are hard to cope with. Sileo says that Crohn’s disease “breeds a sense of helplessness and confusion.” Crohn’s disease is particularly challenging because it is so unpredictable. “There is always the threat of symptoms flaring up,” he says. It can be extremely stressful to live a normal life with this kind of uncertainty always hanging over you.Crohn’s disease can affect your personal life. 
In addition to physical problems, you might find yourself making lifestyle changes — not because you want to, but because you feel you have no choice. People living with Crohn’s disease might find themselves canceling plans with friends when symptoms flare up, and end up spending more time alone. Or they might notice that their Crohn’s disease symptoms are preventing them from working as quickly as they once did, causing their job performance to suffer, which can lead to a loss of self-worth.
Some people with Crohn's disease also feel guilty about burdening family and loved ones with their problems and withdraw from them, leading to even more isolation.

Treating Depression Along With Crohn's Disease

The encouraging news is that depression is a treatable condition, but it is one that requires professional help, Sileo says. If you have Crohn's disease and think you might be exhibiting signs of depression, the following steps can help you to get back on the right path:

Talk to a professional. Your family physician can help you find a mental health counselor or a psychologist who can help you. The mental health professional will work with you to develop strategies to combat your symptoms of depression, such as setting realistic goals and identifying negative patterns of thinking.
Do something positive for YOU.
Many people find that starting a moderate exercise plan or learning meditation techniques can have positive results. You might also want to start a new hobby or visit a place you've always wanted to go to. Setting aside time to do the things that are pleasurable to you will remind you of the many positives in life.
For some people, taking antidepressants may be the solution. If your depression is not relieved by therapy and other lifestyle changes, your doctor may prescribe an antidepressant likesertraline (Zoloft) or fluoxetine(Prozac). Since medications are usually an important part of managing Crohn’s disease, make sure you discuss any antidepressants you're prescribed with your gastroenterologist as well. This will prevent negative interactions with your Crohn’s medications. A mental health practitioner who is not an MD may not know how a new drug will affect your Crohn’s medications, but your gastroenterologist will.

Treating depression in people with Crohn’s disease is especially important. “Depression wreaks havoc on our immune system," says Sileo. "Because Crohn’s is an immune-system disease, treatment of depression is very important to avoid overtaxing an already compromised immune system.”

SOURCE: Everydayhealth.com

Mood Disorders and Inflammation

Mood Disorders Linked to Inflammation

Written by Brian Krans
Published on June 12, 2013

A large-scale Danish study strengthens the hypothesis that mood disorders like depression are directly tied to inflammation.

Depression and other mood disorders could be the brain’s response to inflammation, according to a new nationwide study from Denmark released Wednesday. 

The study, published in the journal JAMA Psychiatry, is the largest of its kind and adds further evidence to the emerging theory that certain mental health conditions could be caused by inflammation.

Researchers found that patients with an autoimmune disease were 45 percent more likely to have a mood disorder, while any history of infection increased the risk of a mood disorder by 62 percent. About one-third of people diagnosed with a mood disorder had been hospitalized in the past for a serious infection. 

Inflammation is the body's protective response to an infection, while autoimmune disorders are inflammatory conditions caused by the body's overreaction to naturally occurring substances and tissues.

“The associations found in this study suggest that autoimmune diseases and infections are important...factors in the development of mood disorders in subgroups of the patients possibly because of the effects of inflammatory activity,” the researchers wrote.

The new study offers insight into the mechanism of common mood disorders, including depression and bipolar disorder, and may help guide treatment and prevention efforts.

Inflammation as a Potential Cause of Mood Disorders

The Danish researchers drew on a nationwide database of more than 3.56 million people born between 1945 and 1996. Of those people, about three percent—91,637 people—were admitted to a free state hospital for mood disorder treatment.

Researchers compared the incidence of infections like sepsis, hepatitis, and urinary tract infections, as well as autoimmune disorders like lupus, anemia, Celiac disease, and Crohn’s disease, with the incidence of bipolar disorder, depression, psychotic depression, and other mood disorders.

They found a strong correlation between infection, autoimmune disorders, and mood disorders, strengthening the hypothesis that depression is directly linked to inflammation.

Earlier this year, another team of Danish researchers published a study in JAMA Psychiatry showing that elevated levels of a C-reactive protein—which the body produces in response to inflammation—in the blood are associated with an “increased risk for psychological distress and depression in the general population.” 

In 2011, a study in the Journal of Neuroinflammation found that high levels of another byproduct of inflammation, quinolinic acid, are associated with chronic depression and suicidal tendencies. 

These discoveries may point us toward better treatments for chronic mental health conditions. 

“Anti-inflammatory agents have actually been suggested to improve mood symptoms in patients with inflammatory disorders and enhance responsiveness to antidepressants,” the latest study reported.

Treating Inflammation Naturally

Getting regular cardiovascular exercise, drinking plenty of water, and relieving stress are all proven ways to help reduce inflammation.

A diet rich in omega-3 fatty acids like olive oil and salmon, dark leafy greens, ginger, garlic, and green tea has also been shown to reduce inflammation and improve overall health.

Source: Healthline.com

My Eye Exam

I went for my eye exam today. Basically because of my immune disorder, i have dry eyes and inflammation, recurrent sinus infections, and blurry vision with near sighted, far sighted and an astigmatism.

She said my 29 year old vision is acting closer to 40. I needed bifocals and need to start wearing them 24/7 mostly. She said it will continue to get worse, especially the less i wear the glasses and the more strain i put on my eyes.

So yay ... thanks Crohn's, you've taken over another part of my body and health! Such a selfish disease! But i will fight you back even harder! #hopeforacure

Crohn's and Your Eyes

Ccfa.org Article

Eye Complications in IBD

Approximately 10% of people with inflammatory bowel disease experience eye problems. Most of these are treatable and do not pose any significant threat as far as loss of vision is concerned. Still, if you notice any type of eye irritation or inflammation, bring it to your doctor’s attention sooner rather than later.

TYPES OF EYE DISORDERS

UVEITIS

One of the most common eye complications in IBD is uveitis, defined as painful inflammation of the uvea—the middle layer of the eye wall. Individuals with uveitis may notice pain, blurred vision, sensitivity to light, and redness of the eye.

These symptoms may come on gradually or quite suddenly. To make a diagnosis of uveitis, an ophthalmologist (a doctor who specializes in diseases of the eye) uses a “slit lamp.” This is a special microscope that allows the doctor to look at the inside of the eye. Uveitis generally improves when the IBD is brought under control, but the ophthalmologist may prescribe special eye drops containing steroids to help reduce inflammation. If left untreated, uveitis may progress to glaucoma—a disease of the eye marked by increased pressure within the eyeball—and possible vision loss.

KERATOPATHY

This eye disorder is an abnormality of the cornea that develops in some people with Crohn’s disease. Again, an ophthalmologist uses a slit lamp to make the diagnosis by spotting white deposits at the edge of the cornea. Keratopathy does not cause any pain or lead to loss of vision, so usually it does not require treatment.

EPISCLERITIS

This condition is an inflammation of the outer coating of the white of the eye, called the episclera. When the tiny blood vessels of the episclera become inflamed, they dilate and the area becomes red. In addition, episcleritis also may produce pain and tenderness. Steroid eye drops and topical vasoconstrictors are commonly used to treat episcleritis, but the condition may resolve on its own as the patient’s inflammatory bowel disease starts to improve.

DRY EYES

A deficiency in vitamin A may result in dry eyes (also known as keratoconjunctivitis sicca or KCS). This condition, which is caused by decreased tear production or increased tear film evaporation, may then lead to eye infection and irritation such as itching and burning. If the infection becomes severe, antibiotics may be necessary. Another possible consequence may be night blindness. Artificial tears provide relief of symptoms. Vitamin A supplements, taken either orally or given as intramuscular injection, can correct the deficiency.

OTHER PROBLEMS

Inflammation may develop in other areas of the eye such as the retina and the optic nerve, although this occurs infrequently. Also, it is not only the IBD itself that may cause eye disorders; sometimes the medications used to treat the disease create their own set of problems. For example, long-term use of corticosteroids may lead to glaucoma and cataracts (clouding of the lens of the eye that impairs vision).

SUMMARY

Although not everyone with Crohn’s disease or ulcerative colitis will experience IBD-related eye conditions, a regular examination by an ophthalmologist is very important. Early detection of eye problems generally results in successful treatment and preservation of healthy vision. The Crohn’s & Colitis Foundation of America provides information for educational purposes only. We encourage you to review this educational material with your health care professional. The Foundation does not provide medical or other health care opinions or services. The inclusion of another organization’s resources or referral to another organization does not represent an endorsement of a particular individual, group, company or product.

Update on My Health

Lately I have been so so. The antibiotics seem to help. But I am cramping so bad. I barely can move but its life and I have to. I have been pushing through, getting to my appointments anyway! :)

I posted some pics of me lately. I did my hair and have been trying to get dressed more often. Getting out of your pjs helps your anxiety so much!! Same with going to the gym!  My body may be hurting or i may be throwing up after 20 minutes or I may do ok but I still go regardless because it helps me feel more confident and I need that!

Camera Endoscopy Finally

I finally went in to swallow the Pillcam. I got there at 7:15am and go back to turn in the device at 3:45pm.

I couldn't drink until 9:45am and then only clear COLORLESS liquid,  which all i had was water. I'm allowed a light snack now and then no food or water until after i turn it back on :/ ugh

Also I can't exercise but I have to stay moving, no sitting or laying around. I was definitely hoping for a nap but nope lol I have to stay moving to keep the pill going through me.

Just a few more hours!!

Vaccine: Possible Cure for Crohn's Disease

Hope has come for sufferers of a crippling bowel disease in the form of a new vaccine.

The news comes as fears are rising that Crohn’s disease is caused by a bug found in milk.

Human trials begin this summer on the innovative vaccine which researchers believe is a breakthrough in the battle to find a cure for the disease.

Scotland has one of the highest incidences of Crohn’s disease in the world with one in 200 people affected. The majority of these are young people and children.

Professor John Hermon-Taylor of King’s College, London is convinced a TB-like bacterium called MAP ((mycobacterium avian subspecies paratuberculosus) is the cause of the disease.

The bug causes a similar illness in cattle, sheep, pigs and primates, and he believes, once passed into the food chain, through milk or meat, causes most human cases of Crohn’s disease. The bacterium is now also being implicated in a similar inflammatory bowel disease, ulcerative colitis.

New research commissioned by the UK government has also revealed evidence that MAP may be the cause of Crohn’s.

In the report issued a few months ago by the Government’s Advisory Committee on Dangerous Pathogens, Dr Ingrid Olsen said: “Together with all the genetic susceptibility emerging over the last decade, it is very hard to reject the hypothesis of mycobacteria being involved in the development of CD.”

The report also reveals live MAP is much more prevalent in pasteurised milk supplies than previously thought.

According to Dr Irene Grant of the Institute for Global Food Security at Queen’s University in Belfast, 50 per cent of dairy herds in the UK are affected.

In the government report, she added: “Without effective control programmes, MAP infection has spread widely and unquestionably the potential for human exposure to MAP via milk, dairy products and potentially beef has risen too.

“There is evidence that the incidence of Crohn’s disease in various countries has been rising over recent years.”

The bug has also been found in high quantities in infant milk formula which the report says is of particular concern.

The latest evidence reveals the bacterium can survive pasteurisation at higher temperatures than previously thought.

Crohn’s disease and ulcerative colitis have rocketed in babies and children over the past few decades – rising by more than 80 per cent.

Gastroenterologists have described it as an “epidemic.”

The vaccine has already been successfully tested on animals and now human trials are due to take place in London in July.

A substantial number of cattle go on to develop an illness called Johne’s diseases, which, under a microscope, is almost identical to Crohn’s disease in humans.

Professor Taylor was the first doctor to make the link between Crohn’s and MAP.

Previously, the UK Government has said that transmission to humans of MAP from animals was not proven, despite evidence of it getting into the milk supply.

But a report in the World Journal of Gastroenterology in December 2015 disputes this after a study in India where MAP is endemic in livestock and the general environment.

More than 42,000 people were tested over a two-year period, including healthy individuals and MAP was detected in all categories of patients at different frequencies.

The report, “On deaf ears, Mycobacterium avium paratuberculosis in pathogenesis Crohn’s and other diseases” states: “The results clearly show, humans like other species, are equally susceptible to infection with MAP regardless of health status.

“This places whole populations at risk of infection, depending on the prevalence of MAP in the environment and food supply.”

The report indicates that MAP in humans works in a similar way as TB, where not all people who have the bug become ill. Those with MAP who do become ill, develop Crohn’s disease.

More info on the MAP vaccine which has been developed at the prestigious Jenner’s Institute at King’s College, London, can be found at crohnsmapvaccine.com

Professor Taylor said: “We believe there is compelling evidence pointing to MAP as the cause of Crohn’s disease. We are extremely confident that the vaccine will work.”

The professor says that MAP is highly resilient, and, milk apart, has also got into the water supply by being washed off fields where cattle graze.

Crohn’s disease leads to a chronic inflammation of the intestine, wrecking patients’ lives and sufferers are at high risk of bowel cancer.

At the moment, mainstream medication concentrates on treating the symptoms only and very often does not work. Three quarters of Crohn’s disease sufferers need major surgery.

The first phase of trials on healthy humans, costing £1.4million is being funded by HAV Vaccines Ltd. Funding is needed for the second phase.

Volunteers, mainly made up of Crohn’s patients and their families are also raising the £470,000 for a diagnostic blood test to run in conjunction with the vaccine trials. They have set up a fundraising Facebook page at www.justgiving.com/teams/crohnsmapvaccineheroes

Professor Hermon-Taylor says that the bacterium is resistant to standard anti-TB drugs and has learned to “hide” from the body’s immune defences by invading white blood cells. Its hidden presence unbalances the delicate physiology of the gut, making it leaky to other bacteria and food molecules, triggering inflammation.

In studies a majority of people with Crohn’s disease have tested positive for MAP and it has now also been isolated in some people with ulcerative colitis.

Source: .edinburghnews.scotsman

Sooo Sick and Miserable

I still haven't gotten better in weeks. I've been super nauseous, throwing up bad and switching between constipation and watery diarrhea. I have had a couple "ok" days in between but not much.

I went to see my doctor  (my actual dr and not a work in) yesterday. He put me on antibiotics even though my labs came back fine (always baffles me how they can when i feel like THIS). Hopefully it'll rid my body of some of the bacteria and I'll start feeling better.

He also finally got me scheduled for the camera endoscopy. So today is prep (yay....) and tomorrow at 7:15am I am going in to swallow the camera. I will wear a device for 8 hours and then return it. It will take a couple weeks for them to read the images but hopefully they'll be able to find out what is going on!

I think it's funny because people keep saying things about feeling bad because I am so sick. I just keep telling them, it's life for me! I can't let it get me down or I would always be down! I have learned to get used to it and I am just thankful that i don't have to worry about losing my job or trting to make it through this. It also makes me a lot more thankful for the good days or even the ok days! I feel like i have a lot more appreciation for life than most and I'm good with that. Of course, i get frustrated with all the tests and when I'm laying in bed in agony, i cry and want it to end, but at the end of the day i know I'll be ok! :)

Stress and Sickness

I stayed sick for a week straight. It was definitely stress induced since it hit immediately after something stressful happened. I haven't been able to eat, I've been super nauseas and have had watery diarrhea really bad. I went to the doctor because i was definitely dehydrated but they just ran some blood work and i have to take stool studies back up to the lab on Monday.

Also I STILL haven't been scheduled for the pillcam! 3 weeks later and NOTHING. Ugh!!

Update on Pillcam

I still haven't actually swallowed the pill cam. The KUB (xray) was clear...no agile pill stuck inside me lol. They should be calling tomorrow to set up a time for me to swallow the camera. My nurse had called Thursday to tell me the KUB was clear and I called her back. Unfortunately, she just got my message today and had forgotten to put in the order for the pillcam. Luckily, i reminded her! (Shoutout to my nurse, she's been on my team for over 10 years, knows my # by heart, and is absolutely amazing! )

So in the meantime, i have babysat my nephews Thursday and Friday, went to my nephew's elementary school Valentine's Carnival and stayed with my mom Saturday, went to my other nephew's basketball game Sunday, then I went to Columbia to visit a friend from college and her parents where we watched the Super Bowl. Sunday night i stayed with her. My cat, Lady, went too and had a blast!! We are home now and getting some rest!

Pillcam Day 3: X-ray

I went back to the outpatient center to get X-rays to make sure the agile capsule was able to pass completely. The X-ray technician said he didn't see it and to wait for my GI to call me within 48 hours to go back in to swallow the camera. This thing takes forever haha. But i managed to slip in some shopping time for like 20min beforey xray haha.

The pictures are of me waiting on my xray and a couple from being silly while shopping :)

Agile Patency Info

Just thought you all would like to know why I had to swallow the agile patency pill!

ABOUT AGILE PATENCY CAPSULE:
An agile patency capsule is a dissolvable capsule that is ingested to verify the patency of your gastrointestinal tract. This is especially important to do prior to receiving a capsule endoscopy if your doctor suspects strictures / narrowing in the small bowel.

Pillcam Day 2: Agile Patency

I went in at 7:30am to swallow the pill for the agile patency.  It's purpose is to make sure everything is wide enough and nothing gets stuck. Tomorrow at exactly the 28 hour mark, 11:40am, i have to go back for an xray to make sure it passed and isn't stuck anywhere. Then I go home and wait for a phone call with the results and to schedule a time for me to go back again and swallow the pill cam and get hooked up to the device that reads the images for 8 hours.

I knew this process was going to take about 2 days but i didnt expect a 3-4 day event. And it really makes me think, what would I do if I was working? And this isn't the only time the doctor pulls me in for these tests with unpredictable timelines. I mean think about it: i couldnt go to work during these days...or at least tell them a time i couls be there. And honestly, how many jobs out there can you just tell them I may or may not be in all week and if i do come in, i dont know what times or for how long. Ok?...yeah i don't think that would go over so well! This is my week and how it doesn't seem possible to hold on to a job during weeks like this:

Day 1: Prep day aka laxatives!

Day 2: Swallow a pill and don't eat for an additional 4 hours. ..yes i know you're starving and about to pass out but wait 2 hours before you drink anything and 4 before you eat and try not to pass out, especially if you have to go to work!

Day 3: Come back in for an xray and then wait for us to call you and then come back exaxtly when we need you to either today or tomorrow. ..hope you don't have anything to do!

Day 3/4: Once again, drive back up here (40min for me) and swallow the camera capsule and have wires coming out of your shirt and don't expect to be uncomfortable if you have to be in public aka a job and i know you have no choice because we just made you take half your week off already! Oh and good luck keeping your job after you have had to be out so often for doctor appointments, hospital stays, testing, and of course,  actually being sick. And FMLA? Yeah, you used up those days in the 1st month plus we don't care.

Ok!! My rant is over! I'm just hungry and cranky and thinking about this fun crohnie life haha. Seriously though, the procedure isn't complicated by any means! It's just time consuming the way it has to be split up over 3-4 days. It is also frustrating when you can't eat and the hunger kept you up all night and you also couldn't have anything to drink after midnight, which you wouldn't notice when you're asleep but of course that wasn't the way my night went (even after taking my ambien).

So there you are! Day 2 of the Pill cam!

Pill Cam Prep Day

Here it is....prep day! I have never met a crohnie that didn't hate prep day. Tomorrow I have to swallow the agile pill so I have to take miralax and be on a clear liquid diet all day. I hate this part. I mean as if the miralax isn't bad enough, i am not a fan of gatorade and they said I HAVE to use gatorade. Great....

I'm going to mix it up now and start drinking! Here goes nothing!

3 hours later:
I was soooo nauseous and barely kept it down but I had some chicken broth and I'm starting to feel a little better now. I cannot wait to be able to eat tomorrow!  I'm definitely feeling the need for some starches!!

Just Another Day As A Crohnie

I am out running errands today and am in a predicament. I am at the bank because the postal service lost all my doctor bills this month (ikr!!!) And im trying to stop payment on those checks. Im sitting and waiting to talk to someone and my crohn's has decided to toy with me. Of course it's a bank,  no bathrooms and im not to the point of needing one yet so i dont want to leave for nothing. Do any of you ever experience that? It's like it's messing with me, teasing me. Then you worry about it's unpredictability and that makes it worse. It truly makes you never want to leave the house. And to think, today was one of the few days i made it out of pajamas!  (I know most of you know that feeling). It's days like today that i get frustrated. Of course when I'm super sick im frustrated, and pissed. However, days where you feel ok (i wont say good, i know those days dont come often) and it decides to mess with your mind...those days are just frustrating! I feel like saying "hello? Crohn's? Yes, stop! Im trying to be normal today! " and it laughs and replies with a sarcastic "yeah ok!"

Camera Endoscopy aka Pill Cam

Pill Cam Endoscopy
Information via Mayo Clinic

Definition:

Capsule endoscopy is a procedure that uses a tiny wireless camera to take pictures of your digestive tract. A capsule endoscopy camera sits inside a vitamin-size capsule you swallow. As the capsule travels through your digestive tract, the camera takes thousands of pictures that are transmitted to a recorder you wear on a belt around your waist.

Capsule endoscopy helps doctors see inside your small intestine — an area that isn't easily reached with more-traditional endoscopy procedures. Traditional endoscopy involves passing a long, flexible tube equipped with a video camera down your throat or through your rectum.

Capsule endoscopy has also been approved for the screening of the colon for colon polyps for those for whom a colonoscopy couldn't be completed. But how and on whom it will be used is still being determined because better alternatives are available. As technology improves, capsule endoscopy of the colon may be used more in the future.

Capsule endoscopy has also been approved to evaluate the muscular tube that connects your mouth and your stomach (esophagus) to look for abnormal, enlarged veins (varices). It's rarely used because experience with it is limited and traditional upper endoscopy is widely available.

Why It's Done:

Your doctor might recommend a capsule endoscopy procedure to:

Find the cause of gastrointestinal bleeding.If you have unexplained bleeding in your digestive tract, capsule endoscopy can help find the cause.Diagnose inflammatory bowel diseases, such as Crohn's disease. Capsule endoscopy can reveal areas of inflammation in the small intestine.Diagnose cancer. Capsule endoscopy can show tumors in the small intestine or other parts of the digestive tract.Diagnose celiac disease. Capsule endoscopy is sometimes used in diagnosing and monitoring this immune reaction to eating gluten.Screen for polyps. People who have inherited syndromes that can cause polyps in the small intestine might occasionally undergo capsule endoscopy.Do follow-up testing after X-rays or other imaging tests. If results of an imaging test are unclear or inconclusive, your doctor might recommend a capsule endoscopy to get more information.

Risks:

Capsule endoscopy is a safe procedure that carries few risks. However, it's possible for a capsule to become lodged in the digestive tract rather than leaving your body in a bowel movement within several days.

The risk, which is small, might be higher in people who have a condition — such as a tumor, Crohn's disease or previous surgery in the area — that causes a narrowing (stricture) in the digestive tract. If you have abdominal pain or are at risk of a narrowing of your intestine, your doctor likely will get a CT scan to look for a narrowing before using capsule endoscopy. Even if the imaging study is negative, there's still a small chance that the capsule could get stuck.

If the capsule hasn't passed in a bowel movement but isn't causing signs and symptoms, your doctor might give the capsule more time to leave your body. However, a capsule causing signs and symptoms that indicate bowel obstruction must be removed, either by surgery or through a traditional endoscopy procedure, depending on where the capsule is stuck.

How To Prepare :

To prepare for your capsule endoscopy, your doctor is likely to ask that you:

Stop eating and drinking at least 12 hours before the procedure. This will ensure that the camera captures clear images of your digestive tract.Stop or delay taking certain medications.To keep medication from interfering with the camera, your doctor might ask you not to take certain medications before the procedure. In other cases, your doctor will want you to take your medication two hours before or after you swallow the camera capsule that contains the camera.Plan to take it easy for the day. In most cases, you'll be able to go about your day after you swallow the camera capsule. But you'll likely be asked not to do strenuous exercise or heavy lifting. If you have an active job, ask your doctor whether you can go back to work the day of your capsule endoscopy.

In some cases, your doctor may ask you to take a laxative before your capsule endoscopy to flush out your small intestine. This has been shown to improve the quality of the pictures collected by the capsule's camera.

Follow your doctor's instructions in preparing for your capsule endoscopy. Failure to follow the directions may mean your capsule endoscopy may need to be rescheduled.

What To Expect :

During capsule endoscopy

On the day of your capsule endoscopy, your health care team will review the procedure. You might be asked to remove your shirt so that adhesive patches can be attached to your abdomen. Each patch contains an antenna with wires that connect to a recorder. Some devices don't require the patches.

You wear the recorder on a special belt around your waist. The camera sends images to an antenna on your abdomen, which feeds the data to the recorder. The recorder collects and stores the images.

Once the recorder is connected and ready, you swallow the camera capsule with water. A slippery coating makes it easier to swallow. Once you swallow it, you shouldn't be able to feel it.

You'll then go about your day. You can drive, and you might be able to go to work, depending on your job. Your doctor will discuss restrictions, such as avoiding strenuous activity, such as running and jumping, with you.

After the capsule endoscopy

Wait two hours after you swallow the capsule to resume drinking clear liquids. After four hours, you can have a light lunch or a snack unless your doctor tells you otherwise.

The capsule endoscopy procedure is complete after eight hours or when you see the camera capsule in the toilet after a bowel movement, whichever comes first. Remove the patches and the recorder from your body, pack them in a bag and follow your doctor's instructions for returning the equipment. You can flush the camera capsule down the toilet.

Your body might expel the camera capsule within hours or after several days. Each person's digestive system is different. If you don't see the capsule in the toilet within two weeks, contact your doctor. Your doctor might order an X-ray to see if the capsule is still in your body.

Results:

The camera used in capsule endoscopy takes thousands of color photos as it passes through your digestive tract. The images saved on the recorder are transferred to a computer with special software that strings the images together to create a video. Your doctor watches the video to look for abnormalities within your digestive tract.

It might take a few days to a week or longer to receive the results of your capsule endoscopy. Your doctor will then share the results with you.

Document Your Journey!

I like to document my hospital stays with blog posts and pics! It reminds me of where I've been and where im going. I recommend everyone does this. It helps in so many ways. Not only the obvious way of documenting your medical history but also it's inspiring to see what i have lived through: chemo, steroids, blood transfusions, etc. I even keep a photo album! Its amazing to look aty transformation!

Photos of ME

I have been battling with my weight between the steroids and PCOS. So I wanted to post some pics to celebrate my shape! And some to celebrate my family who loves me no matter what!

New Year Update

Im sorry i havent updated since my tests in the hospital! The endoscopy and colonoscopy didn't show much, just an inflamed and irritated stomach and colon. Since they couldn't reach parts of my small bowel and that is where the ct scan showed inflammation, not to mention it's also where my last obstruction was, they're doing a pill cam study. Basically with a pill cam study, i start with a prep day like with a colonoscopy. The next day i swallow a pill to expand my bowels so the pill cam goes through without getting stuck. This is called an agile patency. The following day i go back to swallow the pill cam. They connect me to a device. The cam takes constant pics and sends them directly to the device which i will return when i am done. Hopefully this will give me some answers. As of now, im still experiencing nausea, just not as bad, and diarrhea. The pain is much worse. And the urgency is BAD. I also have a sinus infection causing me some ear issues. Hopefully i will have some answers soon and can update you! Please look for a post on pill cam information!