Great Spoonie Volgs

YouTube is an interesting place. Allowing for entertainment, vlogging, and education. I never used Youtube much until I went away to college and needed to force myself to rest. Of course,  finding tips for living with a chronic illness and encouragement was a plus.

10561775_700726836687085_2125246420654225834_n

Kelly Patricia is one of my favorite YouTubers and a huge inspiration. Kelly has a gift for encouraging others. She also has amazing faith. Kelly has an interesting mix of chronic illnesses and is still partly undiagnosed. Her story is extremely relatable, especially with the struggle of finding decent doctors. Some of her illnesses include IBD, Endometriosis, and Arthritis.

164416_513942092011546_269571828_n.jpg

Lets Talk IBD

Maggie has a great channel featuring Inflammatory Bowel Disease. She has a J-pouch and information on doing feeding tubs as well as coping tips for life with a chronic illness.

12510246_929993060426358_2839971109724847991_n

Inflamed and Untamed

Sarah also has IBD and is an excellent advocate. She is blunt. She has battled many surgeries, hospital visits, and flares. She has partnered with the Chrons and Colitis Foundation. She has been on multiple IBD discussion panels and has a lot of knowledge about IBD.

 

Advertisements

Med Changes

Chemotherapy. One of those words with plenty of weight. Plenty of assumptions attached to it. For example, only Cancer patients receive it, this is a  myth. It is only a word. Only a medication designed to assist an individual in some way. Autoimmune diseases are treated with low dose chemotherapy. Chemo suppresses the immune system and helps inflammation.

Personally, I have encountered three chemos to date to attempt to control my illnesses. First I did methotrexate self-injection. Than Mercaptopurine was added. (This combination is not advised.) I couldn’t handle that for long so we made the switch to  just Mercaptopurine.

I stopped Mercaptopurine the end of last month. Medication changes are challenging. Needless to say, it can increase pain and symptoms. It is a difficult medication to start and to stop. Though I am not a fan it did suppress my immune system some, therefore, stopping it increased pain. However, it was worth it because I have begun my journey with Remicade.

Remicade is a biologic which is received through an infusion. It can be used to treat Chrons, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis. Remicade suppresses the immune system, similar to other medications used to treat autoimmune disorders. Most times, to qualify for a biologic an individual must fail other treatments or have difficulties getting off steroids. The Remicade web page provides additional helpful information.

The first three infusions are loading doses and are given every two weeks. I had my first Remicade infusion November 8th (but I have been on another biologic and received other medications via an infusion). Personally, I pre-medicate in the car on my way to the infusion center. An hour before I take Prednisone, Benadryl, and Tylenol. The infusion lasts a total of three hours. I had nurses and a PA adjusting the speed of the Remicade every few minutes. In addition, they monitored my vitals.I felt beyond wiped out afterward as if the life was sucked out of me.

7-out-of-10_uc

That evening I was extremely achy. In addition, I had high pain in the lower right side of my abdomen. I was in bed by nine pm. However, that is the extent of the side effects I experienced. The joint pain was slightly better for a few days. I get my second loading dose soon. Eight weeks is the time frame that an individual should start to encounter improvement.

My next infusion is in a few days. I am extremely tired. The pain levels have returned to preinfusion. The weather isn’t helping any. The pressure is dropping. Additionally, we are expecting a mix of rain and snow. All in all, I am ready for my second infusion. Things feel much more hopeful on Remicade.

christmas-decorations-1814927_960_720.png

Stomach Flares & Food Battles

56631647

I have struggled with eating, due to my stomach for years. I found out I have an allergy to dairy at nine years old. Adjusting to that was a challenge because I loved dairy, but I adjusted fairly well. Growing up I was always on the thin side. Not under weight, just thin, until I hit high school. It is hard to remember if my stomach issues began again Freshman or Sophomore year. My health declined in high school, it is difficult to recall which symptom began when.

I was never a big eater but I ate enough. Then I began having difficulty eating. I would live in the bathroom from eating. I could not pin point one group of food though. It was food in general. In the beginning the stomach flare ups were every few months. Then the flare ups got closer and closer together and the pain became more sever. Before Prednisone, the flare ups began to scare me a bit. I was under weight. I could not believe my eyes when I saw my own picture… I looked like a skeleton. I am a tall girl, 5’8” to be exact. If I was shorter weighing 100 pounds wouldn’t be so bad. I knew that losing weight was dangerous at that point. I did everything in my power to maintain my weight. I tried eating every few hours and included high calorie things in my diet. It was a battle to maintain my weight.  When I began my relationship with Prednisone, I continued losing weight. Now on 60 mg I gained a couple of pounds, mainly moon face.

2013-05-26 001 021

In the beginning I thought I had IBS. As time flowed by, I knew it wasn’t IBS. My symptoms got drastically worst last year. Going to the bathroom 30 times a day and having bloody stool. The Gastro I saw order the wrong tests and offered no insight. I felt hopeless with my abdominal issues. The intense pain and stomach flares continued. I knew there was something wrong. I never fit nicely into diagnostic criteria. If I had a penny every time I heard, “You are complicated,” You are different,” Well I’ve never seen a case like this before,” or “I have no idea,” I would be rich or at least have enough money to buy all my college text books. Being unique medically is frustrating. No one wants to be one in a million medically,  but with some of my stuff I am. I had previously seen a Gastro who I loved, however going back was not an option. He wanted to help me but the office did not have the equipment or advanced testing ability.

I was frustrated and irritated with Gastros. I coped the best I could with the flares. About six months ago I began having extreme abdominal swelling. It was not bloating. I  would get so swollen that I looked at least six months pregnant. This was a red flag. I was advised by several doctors to go back to Gastro. Reluctantly I did so. The doctor told me I have IBS, ran a breath test, and offered no treatment plan or advice. This was not the outcome I had hoped for.

A few days before getting admitted to the hospital I suspected a stomach flare up. When you feel a flare coming on you always hope and pray that your wrong and it was a false alarm. But sadly I know my body too well. When I suspect something 99% of the time I am right. Which is a blessing and a curse.

In the ER, the day I got admitted, sure enough a stomach flare hit and it hit hard. I am blessed that they admitted me. I don’t know how I would have coped with that stomach flare at home. Fluids intravenously are a life saver! They are truly under estimated. If you follow my blog or Chronically Hopeful on FB you know how the story goes, I got diagnosed in the hospital with IBD. Part of the reason for my ulcerative colitis is lack of blood flow to my intestines. Some blame this completed on Lupus. Me? I believe it is a lovely combination of Lupus and POTS.

The picture at the top of this post is exactly how I feel, “Look at all this food, I can’t eat.” I saw a  dietitian in the hospital. She was nice, but honestly not helpful. No one has been much help when it comes to my diet. They tell me everything I can’t eat but don’t give any suggestions of what to eat. Actually one of the doctors in the hospital told me that they weren’t considered about me eating, it wasn’t a priority. No offense but I think (especially with POTS) that eating is important.

There are a handful of foods that are my ‘safe’ foods. Eating is a challenge. I am not allowed to have fiber, whole grains, or dairy. I need to limit protein.  I get frustrated often when I need to eat, because of the simple fact I don’t know what to eat. The healthy foods I enjoyed eating are now off-limits like salad. I have been trying the past few years to improve my diet, eating less processed foods more fruit and vegetables. Now I can’t do that. A lot of vegetables are too hash on my stomach because of the ulcers. Sometimes I feel like eating but I am hardly ever truly hungry. I eat because I know I need to, my body needs food.

Trying a new food is a game. The doctor told me to try stuff and if you have intense pain and live in the bathroom don’t eat it again. I try to reintroduce foods one at a time every other day to every few days. This way I know if a particular food bothers me and I am not completely miserable (hopefully). I have to admit, at times I eat stuff I know will make my stomach hurt because I don’t know what else to eat. Prednisone cravings do not help.

download

Today, I tried something new and I regret it. I was annoyed because I was feeling pretty good until I ate lunch. Good days have been hard to come by. So when I have a decent day I love to take full advantage of it. Right now, eating something that upsets my system not only gives me a stomach ace but a back ace and severe weakness.

Last week I followed up with a Gastro that works with the Gastro I saw in the hospital. Sadly I had to switch due to the doctor not taking my insurance. Thankfully I ran into the Gastro I had in the hospital and he will be speaking with the new one. I feel much better about things this way. In a week I am going back to the OR for an upper endoscopy. Hopefully, after this I can stay out of the OR for a bit. I am not expecting them to find much, due to the fact I am on a lot of Prednisone. I know what to expect, this will be my third upper endoscopy.

Of course I am grateful for decent moments and days. I am hoping one of these flares will calm down soon. Hope you are doing well. Wishing you pain-free days, filled with blessings. Sending spoons, prayers, and hugs ❤

Hospitalization

Plans unravel without warning regularly. “The heart of man plans his , but the Lord establishes his steps,” Proverbs 16:9. Construing plans and setting goals are a part of life. In addition these are spiritual disciplines. While the Lord calls us to set goals, He also calls us to submit to His will. “For my thoughts are not your thoughts, neither are your ways my ways declares the Lord,”Isiah 55:8. He understands the ultimate picture and how each moment contributes to it; in the end bringing glory to his name. This is a lesson I have encountered many times; even recently.

I sat with my agenda and colored pens, which I similarly did every few days planning out what needed to get accomplished in the upcoming days. A round of weakness and pain consumed me, I shrugged it off. I associated it to one of the many challenges my body regularly encountered regularly. I also tried to shrug off the gut feeling that something less then ideal was going to unfold in the upcoming week. ( In perspective my gut isn’t the most reliable source of information, its always been a bit shady) I shifted my focus to all the blessings of the week before.

10247463_10203848559641144_4698683801606595041_n

Sunday morning my body was painfully heavy. Lifting my arms was like lifting weights. My legs felt as though they had chains wrapped around them and pulling then down. Unsteadily taking baby steps the room tilted, shifted, and spun. Despite feeling I’ll, I got ready for church hoping all I was battling was morning sickness at most. I tired with all my might to distract my self as i reluctantly nibbled on merely enough food to pop in my morning pills.

As the morning crawled by, I began feeling worse. My body craved a deep long nap; it was utterly wiped out. After church my mom and I began the expedition to urgent care. There we were greeted by a wait that dripped by as slow as molasses, only to be informed it was best to go to the ER because urgent care would be closing soon. I avoid the emergency room like the plague. I prefer to tough it out then be in that chaotic mess. It is a gamble what type of doctor  will be caring for you. If they have a lot of knowledge and experience or are fresh out of med school in need of an attitude adjustment.

ER

I knew it would be a long night, likely laced with frustration due to lack of answers or assistance. However, I was unprepared for the events that were about to unravel.My mom and I went though the typical process of checking in and waiting. Then the fun truly began with blood tests, urine cultures, and a cat-scan. New symptoms invited themselves to my miserable gathering adding new flavors of bitterness and pain. There was no relief in sight; time slowed down as things intensified.

Reports crawled back to the doctor, who in turn informed me of her findings and her verdict, I was going to be admitted due to elevated liver enzymes. She assured me it would only be over night. This would be the second time I was admitted to the hospital.

That night doctors quizzed me on my symptoms and over all health. People swarmed around my room, all with a different purpose. Yet all with the same ultimate goal, to assist the patient and nurse them back to health.The remainder of the night was anything but restful. Endless testing, mad dashes to the bathroom, intense pain, and doctors interrupting sleep. Weakness consumed and weighted me down to the point I nearly passed out a dozen times. Being admitted on the weekend can be a challenge with the weekend staff. The doctors ordered laxatives without offering an explanation. My nurse explained this to me and graciously stayed with me while I cried a river of tears etched in frustration, confusion, and pain. The first night in the hospital is the most frustrating and longest in my personal option.

11175011_978711268806043_7805209787509585419_n

The following morning I was informed that I would be having a colonoscopy. Due to the severity of my condition, I was placed on isolation. Anyone who entered my room, at their own risk, needed to wear a gown and gloves and needed to keep their distance as much as possible. I was placed on a clear liquid diet. In addition I was put on two antibiotics as a precaution.

Ribbet collage

The colonoscopy results weren’t clear at first, however, the biopsies revealed that I have Ulcerative  Colitis. My Gastro gave me pictures of some of the left side of my colon which was both interesting and slightly disturbing. I love to learn but thinking all of that inflammation, bleeding, and ulcers were in me was strange. For those of you wonder what Ulcerative Colitis is, the Chrones and Colitist Foundation defines it as this:

“Ulcerative colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon.

Ulcerative colitis is the result of an abnormal response by your body’s immune system. Normally, the cells and proteins that make up the immune system protect you from infection. In people with IBD, however, the immune system mistakes food, bacteria, and other materials in the intestine for foreign or invading substances. When this happens, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation and ulcerations.”

I was in the hospital for ten days, the days all scramble together. It was a challenge to get my pain and addition UC symptoms under control. I was off and on liquid diets for most of my stay. My body did not respond how the doctors expected to various medications they tired. Two days before I went home they increased my Prednisone which has made a huge difference.

20150429_130531

I was thrilled being able to go home. I am extremely grateful for the care that I received during my stay at the hospital. The nurses were so helpful and compassionate. Weakness and adjusting to food are two of my biggest struggles currently. I think this is normal considering all my body endured and that I’ve only been home a little over 48 hours.