Wednesday, May 25, 2016

Crohn's Update: May 25

Yesterday we got to meet with Dr. Tekola. Up to this point my insurance has only allowed me to see PA's or NP's in the office but Dr. Tekola is so nice and felt like I needed to see a doctor more often and so she has started seeing me. I'm sure she doesn't get paid for it or gets paid quite a bit less because she told us not to worry about the fees. She is such a nice person, I feel so blessed that we found her and have her on our team.

After Friday night's conversation with her I was nervous she was going to tell me it was time to have surgery, but that wasn't the case. We discussed how the blood test is not a definitive diagnostic tool for Crohn's Disease. Although I tested positive for Crohn's and have a fistula, up to this point my small bowel has not been effected by the disease (or so we think). Usually Crohn's will effect the entire bowel and esophagus. So, although they have technically diagnosed me with Crohn's Disease she isn't 100% convinced.

So, our new plan is:
-Double the Imuran. (This is one of the immuno-suppresants I take). The hope is that we can decrease the inflammation faster by increasing the Imuran.
-Get an MRE. This is a special type of MRI for the the small bowel. If it comes back showing inflammation or blockages then we will for sure know it is Crohn's Disease, if it comes back clear then they will have me swallow a little camera pill that will take pictures of the insides of my intestines so we can really see what is going on. If that one comes back clear too then it is likely to just be Ulcerative Colitis.
-Continue to decrease steroids. (YAY!)
-Remicade infusions every 6 weeks instead of every 8. My doctor feels like she has had a lot of success with another drug infusion (I can't remember the name of it right now) and she eventually wants to switch me to that. That one is slower acting though so we couldn't start with it.
-Liquid diet for 1-2 weeks to help decrease inflammation. My stomach has been looking like I'm 9 months pregnant again so to help with all of the irritation I need to go back to the liquid diet. She is allowing soups with noodles and soft veggies though, so thats a plus! The liquid diet is so hard to follow because I get so hungry on it.

(I know this is referring to alcohol- but I think it fits for a liquid diet too!) ;)

So, here's hoping I survive the next week or two on liquids. If anyone has any awesome soup recipes that involve noodles and soft veggies (no meat), please send them my way! My MRE is scheduled for next Friday and I will update again as soon as we get the results back.

We are finally moved in to our apartment, the last box was officially unpacked yesterday! We love it here so far and I'm excited for the summer to start. James and Charlotte are both doing well. James has loved playing with all of the different people in our ward and getting out everyday. I am so grateful for all of the people who have volunteered to watch him and take him out. My energy is still very low and I still have quite a bit of pain (especially in the mornings). Rob is doing well and should finish his last final on Friday- hallelujah! That means we can mark off two major stressors- moving and school. Now if only we can get on top of my health, we should be back to normal!

We are looking forward to my parents visiting next week and blessing baby Charlotte on June 5. It feels good to make some plans and think about something normal!

Friday, May 20, 2016

Crohn's Disease

This week was a busy one! On Monday I had a blood test, and on Thursday I had my third Remicade infusion. I had it done at an Infusion center in the hospital. They were so nice there! Seriously. They offered me drinks, snacks, and warm blankets. With how often I go to the doctor and the hospital, I get so frustrated dealing with cranky nurses and mean front desk people. It was such a breath of fresh air to have kind people who sympathized with how sick I feel.

It took most of the day to get the infusion and then I had more blood work done to re-check my anemia. Apparently my anemia has not gotten any better since I left the hospital, in fact it got a little bit worse. This explains why I am still so tired, and why I now get to add one more pill to my list- Iron.

I guess the Remicade is technically a chemotherapy drug- and an expensive one at that! Each 100 mg is roughly $1000. On Thursday I got 600 mg. I can definitely think of some other ways I would rather spend $6000!

I told you all I would keep you updated with the results of the blood test I had done earlier this week. Well, today we finally got the results back. Unfortunately, my blood work came back positive for Crohn's Disease. My doctor said to remember that it is only 75% accurate, and there is still a chance it isn't, but based on my symptoms and the blood work, she thinks it is likely Crohn's.

So I guess the big question everyone has on their mind is, "what now?"

When I spoke to my doctor on the phone tonight she had just gotten off the phone with my colo-rectal surgeon. They both feel that surgery is in the near future because I don't appear to be getting better. {I would like to add in here that I have been feeling better- I have had so many good days in a row and I really felt like things were on the mend! But since yesterday afternoon I haven't been feeling so great and this worries them.} Also, unfortunately with the Crohn's diagnosis I am no longer a candidate for the J-Pouch surgery. This means that I would have a colectomy and a colostomy bag for the rest of my life. I instantly started crying when I heard this news. I know there are far worse things in the world than having the bag for the rest of my life, but somehow the news was a little overwhelming. To be honest, I'm not entirely sure it has sunk in all the way yet. 

Our current plan is to make it through the weekend. Since I haven't been feeling well, if I even throw up once I am supposed to go straight to the ER and be admitted to the hospital. (Which will probably result in surgery shortly thereafter). If I can make it through the weekend without throwing up then I have an appointment to see my GI doctor on Tuesday afternoon and we will re-assess everything then. So my weekend goal? Soup and lying down. I don't want any part of that ER or hospital. I'm so over that place.

Part of me wonders if I over did it. Maybe our whole move was just too much. Too much movement, too much stress, too much change. We had SO much help though and we have been so blessed. I seriously feel like I hardly did anything. But I think the problem is that my "hardly anything" is still too busy for this disease. Also, having a two year old makes everything so much more stressful. He doesn't mean to be, but he is SUPER LOUD. One of the side effects of the steroid I am taking is a sensitivity to loud noises. It is so strange. Him yelling or talking is like nails on a chalkboard and it just grates on my nerves- causing stress- causing bowel flares. Or maybe I ate the wrong thing. But how would I know what the wrong thing is? But who knows. Maybe I didn't do anything at all. Maybe the disease just has other plans for me.

Miss Charlotte loves to snuggle me on my hard days

This made me laugh so hard- I have the WORST swelling in my face from the Prednisone! I can't wait to get off of this stuff! (Hopefully 5 weeks left and counting...)

So for now, tonight, I am overwhelmed. But a tiny part of me still has hope. I know I was feeling better and I can't deny that. I believe that the Lord has a plan for me, and it is very important that I remember that His plan is ALWAYS better because He sees the bigger picture. Even when that plan is the exact opposite of everything I think I want for myself. Tonight I was thinking about all of the amazing people I know and how many of them have been through extremely hard trials. Trials suck, yes. But they give us an opportunity to refine ourselves just a little bit more. We will be chipped, chiseled and polished, until one day we become the type of people our Heavenly Father intended us to be, and He intends us to be like Him. It reminds me of one of those cheesy LDS songs that comes on Pandora occasionally that I love. The lyrics are:

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

And all the while, You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if your blessings come through rain drops

What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear

We cry in anger when we cannot feel You near

We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win

We know that pain reminds this heart
That this is not,
This is not our home
It's not our home

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life

Is the revealing of a greater thirst this world can't satisfy

What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

This song is called "Blessings" by Laura Story
And so my friends, I'll continue to ask for your prayers for a miracle, your patience with me as I try not to be such a hot mess all the time, and your stories. I love your stories of perseverance and overcoming trials. They give me so much strength when I need it the most.
I'll update you all again on Tuesday- pray the soup and lazy weekend keep me out of the hospital! 

Love you all. Chelsea

Thursday, May 12, 2016

Update: May 12, 2016

I've been wanting to post an update for a few days now, but I wanted to wait until I was having a good day. I know, that's totally cheating but I feel like all of my posts have been negative and I was ready for a positive one!

The past week has been such a roller coaster. At the beginning of the week I was feeling well, but then I got really stressed and had a few really bad days. Apparently it was not a good idea to throw a move into the mix of everything else we have going on. Our ward has been amazing though and they helped (more like did it for me) pack the entire apartment and get it ready to move on Saturday. We are just moving around the corner into a different apartment complex,so its not a huge deal, but we still have to pack everything, and just the idea of doing it makes me exhausted. I still spend a great deal of my day in my bed or sitting in the glider rocking Charlotte- and even those activities wear me out! 

As for updates, on Tuesday we went to the Colo-Rectal surgeons to see about the fistula issue. The whole time we were sitting there all I could think about was why people choose that as a job. I am so glad they do, and someone has to do it, but really- that sounds like the most awkward job ever. Anyway, they confirmed the fistula but feel like we need to wait before we do anything about it. Fistulas can either be repaired by taking a graft from another part of the colon and essentially "patch the hole," or on some occassions they can heal on their own through treatments with Remicade. Because I am already on the Remicade and my colon tissue is too sick to use as a graft, we will be going with the "hope it heals on its own" method. We made an appointment to follow up with them in two months and see if there have been any changes.

Today we met with the GI specialists and they feel that there may be a chance that I have Crohn's Disease and not Ulcerative Colitis. This was not good news. Remember at the beginning of this when  I said we were lucky it wasn't Crohn's disease? There's a reason for that. If I do have Crohn's Disease then I will get the same surgery I would get with the Ulcerative Colitis, the only difference is that with Crohn's disease the surgery is not a cure and with UC it is. I would still get Crohn's flare ups throughout the rest of my life, and after the way the last seven weeks have gone, that thought terrifies me. People do manage Crohn's Disease though and it is possible to get it in remission, but between the two of them it seems the UC is the better diagnosis.

So, here's our plan for now: 

1. We are going to try and taper off of the steroids faster than we have been because they have been giving me some terrible side effects (swelling in my face, my neck, my knees, my ankles, tremors, anxiety attacks, etc). Also hoping that we don't taper them off too quickly and I get sicker and end up in the hospital again. 

2. Increase the dosage of the Imuran. When they tested my blood they found out that the amount of Imuran I have been taking isn't enough to help me, so once the steroids are tapered we will up the dosage and hope that it will speed the healing process along. (Remember the Imuran is an immunosupressant)

3. Try to wean off of the pain medications. This one is mostly dependant upon the pain. Clearly if I am still in pain then I will keep taking them. But hopefully my colon will heal and I won't need them!

4. Continue with Remicade treatments. I get my next treatment next week, which should put me at the peak amount of medication in my system. This should really help us know whether or not my body is responding to the infusions and whether or not I will need surgery. So keep up those prayers that the infusions will work!

5. The doctors are going to do a blood test on Monday to check for Crohn's The blood test is only 75% accurate, but it may help us to diagnose the Crohn's  vs the UC. 

So its pretty much business as usual around here. A lot of the waiting and hoping game. We have been so blessed by all of the people who have been helping us out. We have had dinners, help with James and Charlotte, groceries, people helping us to pack and move, and sweet get well cards and messages I have received. There have been a lot of people who have told me they have similar struggles and it is so comforting to know that I am not alone. Sometimes this sickness makes me feel alienated and embarassed, and hearing from other people is just so comforting. 

I think we should end with good news! Even though this week definetely had its rough patches, I also had some really good moments. I walked around not one, but two grocery stores! (One was even Costco so I feel like that should count double!) I also had a moment today where I felt normal for like an hour. It was amazing! I've realized its important for me to just focus on these moments no matter how few and far between they may seem.

Thank you all again for your love and support! Unfortunately this road appears to be a long one, but I feel so blessed to be surrounded by so many wonderful people who are helping me walk down it. We love you all! Ill update again after my next Remicade treatment, please pray that it is successful! 

Love you! Chelsea

"If the bitter cup does not pass, drink it and be strong, trusting in happier days ahead." -Elder Jeffrey R. Holland

Monday, May 2, 2016

UC Update: May 2

Lets start off with a cute baby Charlotte picture- that always makes things better.
I have loved being home and being able to rock her for hours each day. No better feeling in the world.

I have officially been home from the hospital since last Wednesday. It is so nice to be home, but at the same time it is really hard because there is so much to do. It took me a few days just to find the living room floor and the kitchen counters. It is amazing how much stuff can pile up in just a few short weeks of not cleaning. Rob gets mad at me when I clean because I'm supposed to be resting, but there is no way I can rest when everything is a mess! I think we are back to a semi-normal state now though.

I feel like I get asked the same questions over and over again, (in good reason)
so I am just going to post the answers here.

1. Are the treatments working?
There is really no way to tell at this point. My doctor said my colon is so inflamed and in such bad condition that it probably looks the exact same as it did when we started this whole journey. The recovery is going to be a VERY SLOW process. I would say that overall I do feel better than when I was first diagnosed, but not by much. It is also hard to tell because now I have the pain killers to help, which I didn't have to begin with.

2. When will you know if you need surgery?
My doctor wants to try and do at least one more round of Remicade before we throw in the towel. My next treatment should be around May 18, at which point the medicine will be at its peak in my system. If things are moving in a positive direction at that time then we will try to do a fourth treatment, which will be 8 weeks later. If things are not looking better than it is time to meet with the Colo-Rectal surgeons.

3. Are you in pain?
Yes. Pretty much constant pain, but I am on two different medications to help with that. The only problem is they add to the fatigue I already have from the anemia. I basically just want to sleep all the time. Getting out of bed is literally so exhausting I have to sit down afterward. I have never felt fatigue like this in my life- I wouldn't wish it upon anyone!

I think the most frustrating part about this whole thing for me is that every day is so different. I will have one good day and be so excited and think that maybe the treatments have started working and maybe I will start to feel better, but then the next day will be really difficult and I can't do anything I need to. It is such a rollercoaster! I wish things would just even out. 

This week has been especially difficult. We are trying to adjust to being at home, and James has just been an absolute nightmare. The poor kid has not had any time at all to adjust to having a new baby sister, let alone a sick mama. He acts out all the time and throws tantrums like crazy- which in turn make me stressed and make the UC flare more. To top it off, he got sick this week with an ear infection, conjunctivitis, and an upper respiratory infection. So then he was definitely out of sorts because he felt so terrible. We ended up having to take him to the ER on Friday night (why do kids never get sick during regular business hours?!) with a fever of 103 -104. We got him on some antibiotics and he is feeling a little better each day. The problem is that conjunctivitis is so contagious, especially in a household of people with no immune systems. Poor Charlotte now has a cold and there isn't much we can do for her because she is so little. Rob is sick as well while trying to catch up on his classes, and I am starting to get it now too. The Remicade and Imuran I take are immunosuppressants so we knew it was only a matter of time before I got it. 
Can we seriously not catch a break around here?

I also developed a few new symptoms this week (I'll spare you the details...) that lead us to believe I have developed something called a fistula. Which basically means there is a hole in my colon and things are leaking into parts of my body where they shouldn't be. (Sorry, thats gross and probably TMI but this whole disease is kind of that way....) The treatment for this is a surgery to close the hole, but they have to wait until all the other inflammation goes down in order to treat it. In the mean time I'm sure you can guess what kind of discomfort both physically and mentally that is. Just one more thing to stress about. It is also causing me to get frequent UTI's, so that doesn't help either.

[Warning: this next little part is for me. I just need to vent and let it out. 
So you might want to skip over all of the negativity!]
If I could sum up the last couple of days in one word, it would be tired. I am so very, very tired. I am tired of people asking me how I feel and having to say "not well." I would love to just say "I feel great!" one day. I am tired because I am up all night in and out of the bathroom. I am tired because I am trying to take care of two kids, one of which throws endless tantrums; argues with me, kicks me, and hits me. I am tired of getting one sickness after another. I am tired of trying to have faith and be positive but really coming up empty handed every time. I am tired of stressing about Rob's school. We have invested a lot of time and money to get this far and it seems so unfair to have it all ruined at this point because my stupid body won't cooperate. I am tired of not doing anything all day. I am usually a person who is on the go- I love taking James out, running errands, playing with friends, etc. I just want a normal day. One day where I have the energy to go outside and enjoy the weather with my kiddos. Where I can eat whatever I want and not feel sick the whole time. Where I can make other people happy instead of being a burden to them. With every passing day I find it harder and harder to believe that I will ever get another day like that in my life. I just want to feel pretty one day. No more steroid face. No more bruises that people stare at. Enough energy to put makeup on and do my hair. Enough strength to paint my nails and go to the salon to have my hair cut. Enough energy to walk to the car and at least go for a ride.

Sick baby Charlotte- poor thing has to get suctioned out every ten minutes. :(

I think I am starting to realize that I will never feel "normal" again, and that scares me. I need to find ways to be happy in my new normal and accept the challenges that we have been dealt. We have been blessed in so many ways. This week our old Provo ward held a fast for us, and that meant so much to me. Fasting is so hard for me and I feel so loved that they would care enough to sacrifice their meals for us. People have told me they have put my name in at the temple, I am grateful for their thoughtfulness and the many prayers that are going up to heaven for us in that special place. Our ward has organized people to help us pack and move our stuff to our new apartment in a few weeks. Such a huge blessing because that task was looking so daunting! Our ward here has also started a sign up for people to help me with James each day so we can get him out of the house. This is single handedly the biggest help to me because I can not physically take care of him all day, let alone take him to do fun things. I have had friends who will run to the store for me and pick up things that I need at the drop of a hat. I have had friends who come and sit with me during the day for no other purpose than to help and comfort me. This means so much. Sitting at home alone all day with two kids and not being able to leave the house is rough. It is so lonely and I am so grateful to have friends who saw that need and filled it just by being a smiling face on the couch next to me. 

Horrible bruises that EVERYONE stares at. No I am not a drug addict.

I am trying to set new goals for myself. 
1. No stressing. This one is clearly the hardest, but the most important. When I start to get stressed I almost immediately start getting cramping and pain in my stomach. 
2. Try to do one normal thing each week or day.
3. Try to get some strength back by cleaning or laundry, or lifting Charlotte.
4. I have a goal to be able to hopefully go for a little walk next week with the kids outside
5. Look for things to be grateful for and list them off when I start to feel discouraged.

I feel like this post is such a ramble. And it probably is because I have fallen asleep at least 5 times while writing it. Stupid stupid pain medication. (Now you can see why I am not allowed to drive....)
But I feel a little better. If no one else reads it, at least I have been able to get some thoughts, feelings, and frustrations out. As for an update, I am not sure there was much of one to give. It is going to be a long, slow road, and I am grateful for the people who understand that and are being so patient with me through it.

Thank you to all of you for your love, support, and prayers. They mean the world to me. Please don't give up on me yet, because my faith and hope is all but lost and I am leaning on all of you right now. You guys are the glue holding me together right now. We are so blessed to have friends that have become our family and have served us in so many different ways. Everything you do is so appreciated.

Thank you for all you do, we love you!