Wednesday, September 9, 2009

The Month of August - Sadie Update and Time in the Hospital

First and foremost, this blog is about Sadie. So, I’m going to start with her. On August 17, my parents’ 35th wedding anniversary, Sadie cut her 3rd and first top tooth. Then on, August 28, my uncle’s 61st birthday, she FINALLY cut her second top tooth. She’s been working on that second top tooth since the 17th, so we were all ecstatic that it finally broke through! Yeah!

Sadie has been such a trooper over these last few weeks! She has spent a LOT of time with Grandma and Grandpa – spending several nights at their house – and has overall done a very nice job sleeping for Daddy when Mommy was unable to be at home. She is so flexible and so willing to just do whatever is needed to make everyone around her happy! I am so blessed!

Sadie also just celebrated her first birthday. But, that is deserving of a post of its own, and I will do my best to get that post up ASAP.

Now, while I normally would not want to spend a great amount of time talking about myself on here, I feel I have quite a lot to explain about recent events. So, here’s the update on everything that’s been happening with me…

Starting last May, I began not feeling well. (WARNING: I’m holding nothing back here, so be prepared for some graphic description!). This started with abdominal cramping and bloating and quickly turned into diarrhea. Then the diarrhea got bloody. I wasn’t too worried about this at first. There wasn’t a lot of blood and I figured I just had a touch of something and I’d be better in no time. I also knew I was VERY stressed about the end of school and I figured that when school was out I’d just start automatically feeling better. No such luck. So, the second week of June I scheduled an appointment with my family doctor. I described my symptoms and she did an exam in the office thinking that I probably had a mild case of internal hemorrhoids. If only that had been the case! So, armed with little to find on her own, she sent me to a colo-rectal specialist. Being a new patient for the colo-rectal specialist, though, I, of course, was unable to get an appointment until mid-July. But, the situation was what it was, so I kept feeling bad, but figured there really wasn’t much I could do to speed up the process. So I waited until mid-July and went to see the new doctor.

The colo-rectal specialist was actually a very nice man. He was very pleasant and professional. He did a procedure in his office called a sigmoidoscopy. This was not a particularly comfortable procedure, but since I hoped to get an answer out of this, I suffered through and just sucked up the few minutes of pain. The doctor diagnosed me with proctitis – an inflammation of the rectum and lower colon – and gave me some suppositories to start taking. At first, I felt a little better. But, by two weeks later I was feeling worse. So, I called him back and asked him what to do next. He said that I probably needed to have a colonoscopy and go see a gastroenterologist. This, of course, meant another specialist and MORE waiting. I actually ended up calling the GI office when I hadn’t heard back from them 24 hours after I knew the referral had been given. I had actually started having a problem holding in my bowels, and I was quite certain that I had to get all of this nipped in the bud or I would NOT be able to go back to work. So, I called the GI office. The nurse told me that they could get me in for a colonoscopy the next week, but I wouldn’t be able to have an actual appointment with the doctor until the middle of September. I started crying. I explained how long I had been suffering, all of my symptoms, and that I had been passed from doctor to doctor without feeling any better. It didn’t matter. She got me in for the colonoscopy, but I had no future appointment.

I went for the colonoscopy on August 6th – Adam’s birthday. My parents had both had colonoscopies and repeatedly reassured me that I would be feeling fine by the afternoon and would be able to do all of the birthday activities that Adam wanted to do. If only we had known! I had the colonoscopy bright and early in the morning. I got to meet the doctor – Dr. Hennessey – before the procedure. I explained all of my symptoms to him and said that I REALLY wanted an answer and for him to be the last doctor I had to see for a while. He said that he’d see what he could do and then gave me the medication to knock me out. As soon as I woke up, he said he had a diagnosis. I had ulcerative colitis. In the easiest terms to explain this means that I had giant ulcers in my colon. This was causing blood, puss, extreme urgency to go to the bathroom, always feeling like I had not finished going to the bathroom, abdominal cramping, tiredness, etc. ALL of the symptoms I’d been having and more! I knew I FINALLY had a diagnosis!

After the procedure I thought I was feeling well enough to go out to breakfast. Unfortunately, I NEVER react well to drugs that knock me out and I should have known better. About 3 bites into my eggs and hash browns at Bob Evans, I threw up. Right there at the table! Gross, I know, but there was NO CHANCE of making it to the bathroom. Thankfully we had a nice container that the biscuits had been in. So, after that not so delightful experience, we headed home. The doctor had given me two new GI medications to try – Lialda and Rowasa. Lialda was given in giant horse pills that smelled like skunk. I was supposed to take 2 of them in the morning. Rowasa was in the form of an enema and I was supposed to take it before I went to bed. Thursday night – the day of the procedure – I was still feeling so bad that I figured there was no way I was going to be able to take the enema. I went to bed uncomfortable and not knowing quite what to do.

On Friday morning I got up. I still wasn’t feeling well. I was a little queasy and things just didn’t feel right. But, I kept thinking to myself that I should just give it time and I would be ok. Adam had taken the day off of work so that we could go geocaching. I didn’t want to disappoint him, so we packed Sadie up, took her to Grandma and Grandpa’s house, and headed out to a local metro park to start searching. Pretty much as soon as we arrived, I was worried. I had to rush to find a bathroom and I was having a ton of cramping – worse than what I’d been having before the colonoscopy. I kept trying to walk with Adam, though, and just push the yucky feelings aside. Unfortunately, we finally got to a point where I just didn’t think I could take it anymore. I had Adam drive me back to my parents house. Adam went home to mow the lawn and I stayed at my parents, trying to convince my body to relax.

Around 4 pm on Friday, I decided I couldn’t take it anymore. I called the gastroenterologist’s office and asked what I should do. I actually got a call back from Dr. Hennessey. He said that if I was feeling worse than I had been before, that I probably needed to go to the ER to make sure my colon was not perforated. After contemplating this for a while – I was concerned because I knew it would be ridiculously expensive – I decided to ask my Dad to take me. So, off we went – Friday night in the ER.

I got to the ER, actually got checked in quickly, and explained everything that had been happening. That night I ended up with a bag of IV fluids, some Dilaudid, a CT Scan, and X-Rays. The final determination was that I was just SEVERLY inflamed and I needed to begin taking a high dose of steroids to reduce the inflammation. I ended up getting home around 11:30 pm that night. Again, I had the positive attitude that things were going to improve and I was going to be ok.

Several days – 10 in fact – went past. On August 15th, I made the silly mistake of having a BIG Blizzard from Dairy Queen. It sounded so good! My body did not agree. I woke up in the middle of the night with HORRIBLE cramps and felt dizzy and otherwise just gross. But, I was feeling a bit better by the time I “really” got up on Sunday. So, I went about the day and figured that I would be ok. I never got back to feeling anywhere near “good.” I went to bed on Sunday, not feeling awful, but not feeling normal either. Around 3 am I woke up and was FREEZING! It was nearly ninety degrees outside and all I wanted was more blankets. I asked Adam to wrap himself around me when all of my blanketing was still not working. It made no difference at all. I just couldn’t get warm. I kept trying different things and different positions, but never made it back to sleep. At 6 am, I FINALLY decided to call my parents. I felt awful about this – it was their 35th wedding anniversary – but I was just feeling so crampy and SOOO cold. Adam got me some fluids and some Jell-o. I was only able to comfortably keep a little bit down. I didn’t actually get sick, but I sure felt like I wanted to. Adam took my temperature, but it was registering as normal. Around 6:30 am my Mom arrived and we headed off to the ER again. Adam had to take the day off of work to stay with Sadie. My dad had several meetings to attend.

Again, I got a bag of fluids started, some more Dilaudid, and MANY, MANY, MANY warm blankets. By the time we arrived at the ER my temperature had spiked to 102.6. Obviously there was a problem. After MUCH blood work (something like 10 vials within 5 hours), no one was able to establish why my temperature was spiking. Dr. Hennessey was actually on rounds at the hospital, so he came to see me and said they would be admitting me. They had all sorts of other tests that they wanted to run on me and I was not allowed fluids or foods. However, I didn’t really want anything right then. I just felt cruddy!

By Tuesday morning I was feeling better. I was on IV steroids and all of my other GI medications. They were still drawing blood frequently and they needed stool samples to test for other nasty infections (one of which was referred to as C-Dif and I wasn’t allowed to shower until they were certain I didn’t have it and couldn’t spread it to anyone). It is rather difficult to give a stool sample when one hasn’t eaten in more than 24 hours, but I did finally manage to eek enough out that they could do their test. It then just took FOREVER to get the results back so I could shower.

Around lunch time I was able to convince Dr. Hennessey to at least put me on a liquid diet. He obliged and by the next morning was allowing me to return to solid foods. I was also visited by a whole team of doctors from the family practice where I go. My own doctor was on vacation, but I met with probably close to 10 other doctors – all at once – to go over my diagnosis and progress.

By Wednesday I was feeling better still and actually had a bowel movement that was NOT diarrhea. Now, for a person who has had diarrhea for months, this was like a HUGE celebration! But, Dr. Hennessey still did not want to send me home. He wanted to try and make sure that I did NOT have to go back to the hospital. So, I stayed on until Thursday.

Starting Thursday morning at midnight I was not allowed any fluids or foods. This was because Dr. Hennessey had ordered another sigmoidoscopy to look and see whether my colon appeared to be healing at all. Though the procedure order went in on Wednesday, they did not actually get me in until 4 pm on Thursday. This meant I spent all day being terribly hungry again. It was NOT fun. But, they eventually took me downstairs, knocked me out, performed the procedure, and gave me some anti-nausea drugs to stop the nasty after-effects. Then I was allowed to eat again!
Around 9 pm Dr. Hennessey came up to see me and share the results of the test. My colon had not healed at all. Obviously, this was not a good sign. He told me to up my Lialda to 4 pills per day (2 in the morning and 2 in the evening) and continue with the Rowasa enemas. I was also to go to a dose of 60 mg of Prednisone per day and taper down by 10 mg once per week. After then getting into a whole side conversation about how he would be going to India for the following week, he signed my exit papers and let me go home. We had also discussed further treatment options, including a drug called Remicade that is given through an IV infusion. It had lots of not so good side effects (malignant tumors being the nastiest), so I was really hoping to avoid it. But, he said he would have his secretary call me the next day and set up a follow-up appointment. Adam and I arrived home around 10:30 pm. I was able to go to sleep and actually sleep pretty well. Another side effect, however, that I forgot to mention early is that I now have these terrible night sweats. I wake up and am COMPLETELY drenched in my own sweat. This, I am told, is because of the steroids. I really don’t know, all I know is that it stinks!

So Friday morning I woke up optimistic and thinking that I was putting this whole mess behind me. I was having some pain in my jaw and some other minor joint pain, but I thought I’d just push through and be ok. I actually went to work on Friday because it was the first of two teacher work days. I didn’t get to school until 10 am, but I stayed until after 4 pm. When I finally headed home, I was exhausted, but not feeling too bad otherwise.

Saturday wasn’t a hugely eventful day. Saturday night, however, I had an AWFUL time getting to and staying asleep. My jaw was really hurting! Around 4:30 am, I decided to head downstairs and make myself something to eat. I had a breakfast sandwich and took some Tylenol. I thought I would be able to go back to sleep, so I trudged up the stairs. Unfortunately as I started walking up the stairs, I got this tremendous pressure in my chest. I attributed it to the fact that I was exhausted, crawled into bed and went back to sleep from 6 am to 9 am. At 9, I called my mom to tell her about my night. Unbeknownst to be, she called the emergency line at the GI doc’s office to ask about my jaw pain. I didn’t mention the chest pain to her since I hadn’t felt it upon waking up again at 9. Then I got up and started moving. Not only did the chest pain return, but I was also dizzy and nauseous. So, I called my parents again and my dad said, “You’ve got to go back to the hospital, we’ll be there in a few minutes.” I started crying, not wanting to be separated from Sadie again and not wanting to go back to the hospital period. But, I knew it was probably inevitable. I decided to try and take a shower while my parents were driving over, knowing that I probably wouldn’t be allowed one at the hospital for quite some time. My parents called the GI doc back while they were on their way over. He said that I absolutely needed to go to the ER. So, off we (Mom, Adam and I) went. By the time we got to the hospital, I had to have my mom get me a wheelchair. I was so weak and dizzy I didn’t think I could walk. When we finally got back to the triage room and they took my blood pressure, it was something like 80/60. Now that’s low and I NEVER have low blood pressure! They also did an EKG, but that looked normal. So on went another day in the ER. They had to get an ultrasound machine to find a vein to put the IV into. I got morphine and again TONS of blood drawn. They eventually had to start drawing from my hand because none of my arm veins would work without immense pain. The hand would work, but it also took like 20 minutes for each draw they did! It was awful!

The results of this blood work showed that I had an elevated enzyme level that is associated with your pancreas. I had a cat scan, x-rays, an ultrasound of my gallbladder, an urinenalysis, etc. At first they tried to say that I might have pancreatitis, but since I was exhibiting NONE of the other symptoms, they decided that it must all just be related to the colitis. I was again admitted to the hospital. This time I was there from Sunday through Tuesday. The eventual determination as to why I was having the chest pain and such was that I was allergic to the GI medications – Lialda and Rowasa and needed to stop taking them immediately. So, I did. I had a heart monitor on the whole time I was in the hospital (making it impossible to do more than sponge bathe). I also had another EKG and an Echocardiogram. There was some inflammation around my heart, but not much more than you would expect to see from anyone. I was sent home on Tuesday knowing that I was now anemic (requiring twice daily pills), had to take 4 Ibuprofen 2 times per day for 12 days to reduce the heart inflammation, and was being left on a steroid taper.

I was feeling better. I had missed the first day of school and took the second day off of school to continue recovering a bit more. My students were great when I finally got to school! They were genuinely concerned about me – a drastic change from last year! It was lovely!

Then, from the 27th of August to the 5th of September, I was feeling pretty well. I remained on the Ibuprofen through Sunday September 6th and was on my Prednisone taper. I stepped down to 40 mg on Friday September 4 and obviously 40 mg is just not enough to sustain me at this point. So on Sunday morning I called the emergency line at the GI doctor’s office and sought help. The on-call doc recommended that I start a Hydrocortisone enema that evening. Now, Sunday was Sadie’s first birthday party, so I had a big day ahead of me. But, I pulled myself together and mustered through pretty well! I was exhausted because I had not slept well at all on Saturday night, but I knew I had to make it through the day and I convinced myself to do it. I had more pain and troubles on Sunday night, even after taking the steroid enema. So, I called the emergency line again on Sunday. My own GI doc, Dr. Hennessey, actually called me on Sunday, but I had missed his call. The on-call doc, though, was the same man I had talked to the day before. He said that the only recommendation that he could give me would be to re-up the Prednisone to 60 mg and he would talk to Dr. Hennessey. So, I took the 60 mg and hoped for the best. It did help, though I was clearly on a downward spiral.

Dr. Hennessey did call me back on Monday and we had a LONG conversation about what to do next. He wanted to put me on a new medication that would help my colon to heal itself, but every possibility that he came up with had some component that I was allergic to. So, after MUCH consideration, we decided that my best path was probably going to be to get started on an IV infusion drug called Remicade. Now, Remicade has LOTS of nasty side effects, including malignant tumors. I was obviously not thrilled with this option, but since this could provide me the quickest relief, we decided it was probably the best route for now.

On Tuesday I went to work. I spent several minutes on the phone throughout the day with my GI doctor’s head nurse/secretary. She worked on getting me set up with some people who could get me started on the path to getting the IV infusion going. I am actually going to have a nursing company that will come to my house to deliver the drug to me. They are all critical care nurses and are trained for any and all “serious” situations, though we are certainly hoping to avoid those! My first appointment is on Friday at 4 pm. It takes about 2 hours to receive the infusion. We are ALL keeping our fingers crossed that not only do I not have an adverse reaction to this medication but that it also brings some MUCH needed relief.

This disease has certainly brought about A LOT of changes in my life and the life of everyone around me. I owe MANY, MANY thanks to MANY, MANY people! I am very lucky to have such supportive people in my life! Adam and I also have some big things to consider for our future. I have to receive injections of Remicade at 0 weeks, 2 weeks, 6 weeks, 8 weeks and then every 8 weeks from then on. There is no end in sight of being off this drug at this point. And, while I am on Remicade, it is NOT safe to get pregnant. So, we are definitely thinking about how this is going to affect our once “solid” family plan. But, the good news is that ever since I was young, I’ve wanted to adopt a daughter from China. Obviously God had a long-term plan in mind when he first planted the idea of a Chinese adoption in my head because at this point, that is certainly looking like a more realistic possibility for us than of being able to have another biological child. But, then again, the future is uncertain and things may be turned upside down again before we ever get to that point. So, for now, we are facing uncertainty with lots of hope! If you are a praying kind of person, though, we can definitely all use your prayers!

Hope all you loyal readers are doing well and I promise to update this again soon with pictures from Sadie’s birthday and birthday party! Take care!


Cathy said...

I'm praying for you.

Out of curiousity...are you ever going to go back to that Bob Evans again? ;)

Krysten said...

I would pretty much say no to that particular Bob Evans. But, the good news is that I have 3 Bob Evans that are MUCH closer to my house, so it shouldn't be a problem! :)

SlyGly said...

Wow, Krysten. I had no idea that things had been this awful! I'll be thinking of you, and I hope the Remicade starts turning things around quickly.