Saturday, April 23, 2016

Ulcerative Colitis


I can already tell this post- and the posts that follow it will be difficult ones to write. But, I want to keep everyone up to date on my treatments and condition, and it seems like this blog will be the easiest way to do that.  I also hope that if anyone is having similar symptoms that this blog can help them get the treatments they need before their disease gets out of hand. I apologize in advance because Ulcerative Colitis is kind of a gross disease to talk about so you may learn a few more facts about me and my colon then you ever wanted to know- so feel free to stop reading at any point in time. I promise to not be offended. Haha. Well, with all that in mind, lets start at the beginning!

In the last two months of my pregnancy I began experiencing mild digestion issues. It wasn't a huge deal, I just found that food was upsetting my stomach more often than normal. I have always had what Rob and I have called a "delicate stomach." Things such as red meat, greasy food, certain vegetables and whole grains, and sometimes dairy products have just never settled well with me. I generally just avoid eating those items and go on with my life like normal. At the end of my pregnancy it seemed that everything was upsetting my stomach. I talked to my OB about it but we just decided it was probably another one of those lovely late-term pregnancy symptoms, like hemorrhoids. (This is also how we rationalized away the amount of blood I was seeing in the toilet). At this point in time I wasn't having any other symptoms so we just decided to wait and see if it would all go away after delivery. After all, there isn't much you can do to treat an 8 month pregnant woman.

As I mentioned in my previous post, Charlotte's delivery was extremely painful. Hindsight is 20/20, and we now know the horrible pains I was having weren't just from labor, but from the Ulcerative Colitis. I felt fairly normal (as normal or as well as anyone feels after giving birth) for the first few days home from the hospital. At about day four I was progressively getting more and more sick. More digestion issues, bleeding, and pain. Things got so bad that I was severely dehydrated and for fear of losing my milk we decided to visit the ER. After a four (yes, four!) hour wait in the ER waiting room in extreme pain they finally got me back to see a doctor. They gave me two IV bags of fluids, some morphine, took some blood and urine samples and then sent me on my way.

At home a few more days passed and I was only getting progressively worse. The pain in my abdomen was getting so intense I could barely walk or stand. My sister contracted a bacteria called C. Diff. Colitis after the birth of her son and she told me my symptoms sounded very similar. At this point I called my OB and visited with him. He told me to go straight to the ER again because of dehydration and he suspected I might have that same bacterial infection that my sister had. At the ER they gave me more fluids, pain killers, urine tests, blood tests, and a CT scan to check my abdomen for blockages or any other issues. The CT showed inflammation in my large intestine but they weren't sure what was causing it because the CT can only show so much. This time they did a stool sample to test for the C. Diff, parasites, a viral infection, or anything that might point them in the right direction. They advised me to see a Gastroenterologist and sent me home.

We called every single Gastroenterologist on the list from my insurance and the soonest anyone could find an appointment for me was the end of April. I knew that was too long but had no idea what else to do, so we made the appointment and began to wait. I eventually was able to get an appointment at a "transitional clinic" for people who had visited an ER but weren't getting any better. Luckily this clinic had some connections and was able to get me an appointment with a GI for the next week at a place called GANV (Gastroenterology Associates of Northern Virginia).


By the time that appointment rolled around I was extremely sick again. Rob and I left the kids with a friend thinking we would only be gone an hour or so for the appointment. Once the GI people saw me they told me I needed to go straight to the ER because I was severely dehydrated again and they felt I needed a colonoscopy due to the extreme pain. Luckily our friend was amazing and so understanding. She stayed with the kids that first night while I was in the hospital. She didn't even get a chance to go home and get a change of clothes!

I spent the first night drinking the horrible colonoscopy juice. I wouldn't wish that stuff upon anyone! I told Rob it reminds me of a scene from Harry Potter where Dumbledore has to drink the horrible solution even though he keeps telling Harry to please let him stop. I was Dumbledore and Rob was Harry Potter. It was a very long night, but one gallon of "go-lytley" (who names these things anyway?!) later, I was prepped and ready for my colonoscopy. Unfortunately I now know these will be a big part of my future.

The colonoscopy itself isn't bad, they put me under anesthesia for it. But when I woke up from my short nap we received some very terrible news. The GI doctor who did the procedure said she had never seen a colon as bad as mine. She showed us pictures they had taken and my whole colon was just covered in open ulcer sores, blood, and swelling. She explained that because it was so bad they would do everything in their power to heal the colon with medicine, but there was a large chance that I may need surgery to remove the colon completely. I just started crying right there in the recovery room. Probably most of it was just waking up from the anesthesia, but it just felt so overwhelming to me. How did this even happen?! I have always been so healthy and I felt fine a few months ago, but now suddenly I was on the verge of having  major abdominal surgery and my organs removed? Rob was wonderful and made some phone calls to family and friends to let them know what was happening. My sweet mom who had only just left DC got right back on a flight and came out to help with the kids while I was in the hospital. Rob's mom already had a flight booked for that week to see the baby, so she was on her way as well.

They told me I would need to spend about a week in the hospital while they started treatments. I don't remember much about being in the hospital because they had me on some very intense pain medications that made my head a little fuzzy. But, in a nutshell my days consisted of sleeping, getting pain medications, and eating a clear liquid diet. I also wasn't allowed to see my kids because the hospital was under flu restrictions and children under 16 are not permitted on the hospital floors. It was miserable and every day I just kept asking two questions, when can I go home and when can I eat food. We also learned a lot about my new disease. After about a week they finally let me try real food that was part of my new diet "The Low Residue Diet." Basically the diet restricts me from eating raw veggies, nuts, seeds, fresh fruits (except cantaloupe and bananas), whole grains, only two cups of dairy a day, spicy foods (SO lame because I love Mexican food), and rich desserts. Here is a picture of my first real meal- I truly almost cried when I could eat something solid! The white stuff on the right is the bag of food I got through the feeding tube.


We also learned a bit more about my disease, treatment options and surgery options while in the hospital. It is almost overwhelming because I have three different sets of doctors. I have the GI docs, the surgeons, (who I call the vultures because they always come in and circle my hospital bed just staring at my colon like they can't wait to cut me open), and the hospital doctors. Here is a little bit about the disease:

What is Ulcerative Colitis?
- UC is an autoimmune disease in which the body attacks its own colon. For some reason the body is unable to tell the difference between the healthy and non healthy cells in the gut and it decides to just attack everything at once. This creates large ulcers or sores, bleeding, and extreme abdominal pain and cramping. It makes it so that the colon doesn't absorb nutrients- causing malnutrition, weight loss and anemia.

How do you get UC?

- Everyone keeps wondering if my pregnancy was the cause of the UC, or if it is contagious. The answer is no- to both. The pregnancy and delivery did however cause so much trauma to my body that it escalated the UC to be way more out of control then it otherwise would have been. Usually UC is genetically linked, but we don't have any in our family. We do have a history of autoimmune diseases on my mother's side though, which the GI doctors feel may be a contributing factor in my case.

How do you treat UC?
-UC can be treated one of two ways. 1. With medication management for life. 2. With surgery by removing the colon. Obviously we are currently trying for option 1, but because my case was so severe when we started, my doctors aren't entirely sure we will be able to get it to work. Medication management at this point for me includes a lot of pain killers (3 different ones to be exact), blood thinner shots in my stomach, cramping medications, IV steroids for inflammation, pepcid for stomach acid, zofran for nausea, a drug called Imuran once a day to decrease my immune response, and an infusion called Remicade every few weeks to decrease my immune response as well. They also have me on a strictly liquids diet which pretty much sucks. I love food and so it is torture not being able to eat anything. I am also ordered to have a lot of rest because the more I move around the more I upset my stomach. Stress is also a huge trigger for UC, so it is really important that I try not to get stressed out (HA!).

-The surgery is pretty intense, so therefore we are hoping to avoid it. It is a three part surgery. In the first step they will go in and remove the entire colon and place a colostomy bag. There is a one week recovery time in the hospital and then a 6 week recovery time at home where you can't lift anything heavier than a gallon of milk. After 6 weeks they will do a second surgery to re-route the small intestine to create what they call a "J-Pouch." It is essentially just creating a large intestine out of the end of the small intestine.  They will leave the colostomy bag in place, a one week recovery in the hospital and then another 6 week recovery at home. After 6 weeks they will perform the last surgery in which they will be able to remove the colostomy bag and hopefully the small intestine will have learned how to become a large intestine by this point. Again, a one week recovery in the hospital and a 6 week recovery at home. You can see why we are working so hard to save the colon! Even after the surgery is all said and done, nothing will ever be the exact same. I would still be going to the bathroom 4-5 times a day, and once during the night. But, I would no longer have the horrible pain or have to do the medication infusions.


What is the difference between Chron's Disease and UC?
-Chron's disease affects the entire digestive system, all the way from the esophagus to the large intestine. The sores are more spread out, and Chron's can not be fixed with surgery. The two diseases are similar in the fact that they are both IBD (inflammatory bowl diseases) and auto-immune diseases. They are also often treated with similar medications like Humira and Remicade.

My first stay at the hospital lasted 10 days, and I was very ready to go home and see my babies. I had multiple x-rays, MRI scans, CT scans, and many other tests to help diagnose the UC. I was treated with the medications and received my first round of Remicade. I also had to get a PICC line and a feeding tube because my nutrition was so low. (This I blame on them not letting me eat anything other than liquids...)  I got to a point where we felt like things were pretty well under control and that I would be able to recover at home. I got to be at home for about a week and then things got really bad. The doctors feel like my colon was so inflamed that it was having trouble absorbing all of the oral medications that I was taking. In the hospital I get most of my medications through the IV so they work fairly quickly and efficiently. Since my colon is so sick its hard to trust whether or not it is absorbing and processing all of the treatments.

We snuck James in one night and I got to have a little dinner date with him. It was so bittersweet to have him there. I loved seeing him but it was so hard to let him leave.


Here are a few of my war wounds from the many, many, many needle pokes:


On Wednesday 4/20 I woke up so sick that Rob and I decided it was best to see the GI. They admitted me to the hospital that day, and I have been here ever since. I was admitted for extreme dehydration, abdominal pain, a horrible UTI (because my medications decrease my immune system), and anemia (due to the loss of blood with bowl movements). Our goal for this visit is to try to decrease the inflammation as much as possible so that when I go home the oral medications will absorb properly. Right now our goal is to be discharged after one week, on April 27th. I'll be honest, right now that seems like one million years away.

Here is a picture of all of my meds: (yikes!)


Being in the hospital and fighting this disease is by far the most difficult trial I have faced in my life. I miss my kids more than I can express and I hate being away from them. James is a good sport, but I can tell it is starting to wear on him and he is acting out. I have only been able to spend just over a week with my newborn baby who is now over a month old.

I feel as if I have overstayed my welcome and taken a mile when I should have only taken an inch with every single person I know. So many friends and people in our ward have done so much for us from making meals, to arranging babysitting, babysitting day and nights (with a newborn!), visiting in the hospital, phone calls, notes, flowers, cleaning my house, etc. I appreciate it all so much and I know I will never in a million years be able to give back for all that we have been given.

I stress every day about whether or not the treatments are actually working. Some days are good and I start to feel better, and then I will have a night that sets everything back and makes me think I'm not responding to the treatments at all. I cry.... a lot. I cry out of frustration at my body, about loneliness, not being able to be with my kids, asking too much of people, worrying about my husband getting behind in law school, the fact that we have to move in three weeks and I can barely walk to the bathroom (let alone pack and move a house!), I worry about money and the costs that come with medical bills. I worry about what happens when I get home- will I be well enough to take care of my kids? What if I need surgery? How will I take care of my kids then? Do I need to try and hire a care giver to help at home? How can we afford that? Will I ever be able to live a normal life and go out to eat real food? Will I ever be able to spend time with my family and do happy and fun things again? Does God actually hear and answer prayers? How long is He willing to let me suffer? Do I have enough faith to see this through?

I try to stay as positive as I can and as faithful as I can because deep down I know that positivity and faith can go a long way in healing. But, I am still human, and I still have moments where I just wish it could all be over and done with. I have moments where I break down and cry, or shout out in anger. I wish I could say that I didn't have moments like that. I just feel as if everything has been taken away from me, even down to my dignity and my privacy. There is nothing like having 20 people a day asking about your bathroom habits or helping you shower because you are too weak to do it on your own.

I have to give a major shout out to my incredible husband. He has taken on so much and has not complained once about it. He takes care of me at the hospital, visits the kids each day and tries to take James to do something fun, he is going to classes, completing projects (finals are just around the corner), arranging people to watch the kids, and drives back and forth all over Northern Virginia to make sure we are all ok. I don't know what I would do without him and I am so grateful to have him by my side through all of this.

Today I got special permission to go downstairs so I could see James and Charlotte. The hospital is still under flu restrictions and so kids are not allowed on the upper floors. They also have me on the oncology floor where people's immune systems are really low, so it is important to not let little kids around them since little kids have so many germs.




Well, I think that brings us up to date for now. I will try to keep this blog updated at least every few days, and hopefully from now on they can be much shorter posts. Thank you again to everyone who has helped us and prayed for us. I appreciate every little thing more than you will ever know. Please keep praying and sending positive thoughts our way. The next few weeks and months will be difficult ones for our family and I apologize in advance for being takers instead of givers. We pray for all of you each night as well and thank our Heavenly Father for the incredible support system we have been blessed with.

In the end I know that everything will work out as our Heavenly Father intends for it to. 
love to you all
xoxo
 



6 comments:

  1. Chelsea we love you and are praying for you. If there's anything at all that we can do even though we are so far away we will not hesitate to do it for you. Keep having faith, even in the darkest times. Miracles really do happen and we are praying for them for you right now.

    -Cassie and Allen

    ReplyDelete
  2. Thank you for the update! I wish I was closer to help!!! You are so wonderful and I know that your faith is strong nough for you to endure this. It's okay to complain about it too. :) remember we love you and are praying for you!

    ReplyDelete
  3. So sad to hear about your health . . . We pray for you and think of you often. You have an adorable family. Sending our love to you and your family.
    Tim & Barbara Odland

    ReplyDelete
  4. Thinking of you and praying for you. We are happy to help any way we can.

    -Kimberly Uptain

    ReplyDelete
  5. Chelsea, I have been thinking about you and your family a lot lately. I know that everything will work out for you guys. Heavenly Father is watching over you and he is aware. Just by reading your blog I can tell that you have such strong faith. Everything will be ok! I wish you all the best!!

    ReplyDelete
  6. I've had an autoimmune disease since I was 13 so I know some of what you're going through. It's hard no doubt about that. Something I have found over the years that helps me deal is to really tell Heavenly Father what you are thinking and feeling. He can handle your anger and frustration. He won't hold a grudge and you can't hurt his feelings. I have come to realize over time that i'm not being unfaithful or sinful in expressing these things to him. It helps to have at least one person you can tell your bitterest feelings to without worry of judgement.
    It is hard to accept help and to deal with the constant pain and the ups and downs. Tell yourself you are doing a good job and that you are doing your best. We are too hard on ourselves and reaffirming that you are trying your best will help lessen a little of the load you are carrying. I am sorry that you are experiencing these hard things. It sucks. I hope you experience some small moments of peace that will help strengthen your spirit.
    I hope this advice isn't out of line and that it helps in some small way. I'm Taylor's sister. You used to visit teach her so when she heard about your troubles she told me since i've experienced some similar things in the hopes that I might offer some good advice.

    ReplyDelete