Thursday, January 15, 2015

an incredibly hard day, but God is faithful through it all

Today has been an extremely emotional day for me. I hope to write this post cohesively, but it might go all over the place. I want to be very honest in this post for me to have to look back on. If you don't care to read things about medical issues, this might not be the post for you. Also, this may be the longest post I've ever written.

I have been dealing with GI issues since I was 18. Things rapidly deteriorated after 2007.  2008-2011 were years that I had MULTIPLE issues and 4 surgeries for some of those issues. In 2011, I was diagnosed with irritable bowel syndrome and really believed that was what was wrong with me. 2012, 2013 and 2014 brought ER visits and a stay in the hospital for more severe abdominal pain and a partial obstruction. 

My last ER visit was in September of last year. It was once again recommended that I get a colonoscopy.  (I had attempted to do one at the very end of 2013, but was unable and then, like my typical self, just blew it off.) I was set up to have an EGD and colonoscopy in November. I once again was unable to finish the prep for the colonoscopy. My EGD was normal. You would think that that news would help me consider blowing off the colonoscopy again, but in my heart I knew I needed it done because something was wrong with me. If it was not in the upper GI, it had to be in the lower.

They finally gave me a prep that I could tolerate and I stayed up ALL night making sure I drank enough and was "cleaned out" enough. The next day, December 10th, I had my colonoscopy. I remember the day (December 15th) that the letter came in the mail with the results. I was sitting at the bar and Tim was standing near talking to one of the kids. I read it and my heart sank. I gave it to him to read. "The biopsies of the junction of your small intestine and colon agree with the diagnosis of Crohn's disease."

I truly did not believe that I would have that diagnosis. I still had the upper GI series tests on December 29th. Those tests were normal, but that did not change the diagnosis. The month has been spent in absorption and processing this news. I go from happy that I finally know, to just shocked that I have a chronic disease. I go from angry that it has taken so long to find this out, to just sad at the time I have suffered.

So, you may wonder, what exactly have I experienced over the years? I have experienced so much pain. A couple of the ER visits were because I was in so much pain that I could not stand it and they never could pinpoint a reason for the pain. I have had bouts of extreme diarrhea. I have had a fistula, an obstruction, and been unable to eat more than a toddler sometimes. I am now lactose intolerant. I have severe fatigue and I do not write that lightly- fatigue so bad that my body feels heavy from it. I also have intense irritability. I'm not me when I'm like that and I hate it.

I rarely discuss this stuff or complain about it outside my immediate family and very, very close friends. I have several people who have been astounded that I am continuously in this much pain. When you live with it for so long, you learn to push through it a lot.

Right now, I'm just so emotional because all I can think of are the past 8 years and what all has happened. I'm just so sad that I have felt so bad through a ton of it. 

So, today was the day that I was to see my GI doctor to discuss my Crohn's disease and to discuss therapy. I've learned so very much about Crohn's over the last week. There are even different types of Crohn's.

What did I learn today? I learned that my type of Crohn's disease is Ileitis. This means that my Crohn's affects my ileum which is the last part of the small intestine that connects to the large intestine. My ileum is inflamed and narrowed. The pathology report from my biopsy stated that my tissue showed Crohn's and that the inflammation showed chronicity, meaning that it had been there a long time.

Since I present with abdominal pain, joint pain, and fatigue, I am having symptoms. I'm not having diarrhea much presently. The question right now is: do I just have inflammation or do I have scar tissue? The two types of medicines that can help my case are immunosuppressants and biologics. The doctor recommends the biologics which are medications like Humira and Remicade. They are working with my insurance to get me set up with Humira. It is a ridiculously expensive medicine and I will likely take it for a long period. It is also a medication that I will have to inject into myself weekly. I about fell off of the exam table when they told me that news.

I could not leave today without having something to help me between now and the time I can get that going. He said that we could temporarily do a corticosteroid. The one he prescribed is super expensive, but has few side effects and I will take it for 3 months.

Now, I don't really want to go there, but if I do end up finding out that I indeed have scar tissue built up and not just inflammation, I will have to have a bowel resection. I can't think about it much, but it could be something that comes up. Right now, my prayer is that these medications will make me feel better. They should significantly help me feel better if it is just inflammation. They won't make me feel tons better if I have scar tissue. Basically, scar tissue buildup won't go away and it keeps my ileum blocked and I could be having partial obstructions frequently. The inflammation can cause that too, but if it's that, then the medicine will help that subside and things should be able to go through smoother and that will be what helps me to start feeling better.

The doctor mentioned that my fatigue is caused from the immune response in my body that is continuously happening. It's like your body cannot find the off switch.

Once we left the doctor my head felt so full of all of this information and I just felt so very emotional about it all. I very easily could have slid into myself and grieved over it tonight. 

I'm so glad that God had a different plan. It was no mistake that tonight was an event at our church called "Addicted to anxiety." One of my favorite teachers, Susan Goss, led the event. Her and some other ladies (some from our church) have created a ministry called Tangible Truth Ministries. 
We started off in worship and sang: 

Oh, I'm running to your arms
I'm running to your arms
The riches of your love
Will always be enough
Nothing compares to your embrace
Light of the world forever reign


So I shout out Your name, from the rooftops I proclaim
That I am Yours, I am Yours
All that I am, I place into Your loving hands
And I am Yours, I am Yours

Here I am, I stand, with arms wide open
To the One, the Son, the Everlasting God, the Everlasting God

Rooftops by Jesus Culture


What a fellowship, what a joy divine,
Leaning on the everlasting arms;
What a blessedness, what a peace is mine,
Leaning on the everlasting arms.

Leaning, leaning, safe and secure from all alarms;
Leaning, leaning, leaning on the everlasting arms.

Oh, how sweet to walk in this pilgrim way,
Leaning on the everlasting arms;
Oh, how bright the path grows from day to day,
Leaning on the everlasting arms.

What have I to dread, what have I to fear,
Leaning on the everlasting arms?
I have blessed peace with my Lord so near,
Leaning on the everlasting arms.

Those songs are so full of trust, adoration and surrender. What could be better to hear on a day where you have learned such discouraging news? God reminded me that I can give this to Him. This disease is not on my back. No matter what happens, He will be there.

I heard Natalie Grant's song, Held on the way home tonight. I love this song. 

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held

I felt so held tonight. 


  1. Praying that the medicine will work and no bowel resection is needed.

  2. Check into this book and see if it will provide some additional help. Written by a man who also has Crohn"s and changed his diet to a Biblcally based one. His research and story are fascinating. It is "The Maker's Diet" by Jordan Rubin. Hope it will help - Leisa Wiggs, Snellville, GA

  3. Hi there. I found your blog through Kelly's Korner and I wanted to comment today because I have Ulcerative Colitis, and while that is different from Crohn's, I can relate to so much of what you have written. I dealt with pain, cramping, diarrhea, fatigue and even had C.Diff three times in one year. I was really sad during that time and I felt like a prisoner in my own home. Three years ago I started taking Remicade and I have not had a single symptom since. When my doctor first told me I would need infusions every 8 weeks for most likely the rest of my life I was totally freaked out, but It has honestly saved my life and improved my quality of life in huge ways. Remicade is admiinistered at your doctor's office and is an IV infusion that takes about 2 hours. It took me a while to get where I am now, but I have never felt better. I just want you to know that there are some great treatment options out there now and I hope you find something that works for you soon! Stay strong, it will get better! Best wishes to you.

    1. Oh Andrea, cannot imagine having C-Diff three times in one year! I had a bout of it after surgery a few years ago and it was HORRIBLE! Fortunately, Flagyl got rid of it. I now take Florastor (a probiotic) daily. I also avoid antibiotics!

    2. Thank you so much for this encouragement! I'm so glad you are doing better! I'm at the point of not caring about giving myself injections - I just want to feel better!

  4. I have never commented before, but feel compelled to do so. We have a family friend, a teenage boy, that has suffered from Crohn's for years. A couple years ago, his doctor recommended he try a gluten-free, vegan diet to relieve his symptoms and it has made a world of difference for him. Not easy for a teenager (or a boy), but he feels it is definitely worth it.

  5. OH my friend, I'm so sorry. I'm so grateful though, that you have a diagnosis. My friend's mom had a resection just last month and is doing wonderfully. It may be something that may help give you some day to day normalcy back. For now, I just pray that you can feel better and feel enough to be able to live your daily life with some relief. We are all thinking of you!

  6. I'm another newbie who saw your post on Kelly's blog. Anyway, I just wanted to also suggest you research diet and lifestyle changes. I don't have Crohn's, but I do have another medical condition related to inflammation. Although changing diet and lifestyle hasn't cured my issues, when I eat right and do the lifestyle changes recommended, these things play a huge part in making me function a lot better. I don't know if dietary and lifestyle changes would help you personally, but I just wanted to suggest that you do some research to see if that might be an option for you before doing something more drastic. Whatever you decide to do, I truly hope you find something that will improve your health.

    1. Thank you! I have made some diet changes but I will look into more options. Thank you for your kind words!

  7. Lenette, It was so wonderful to meet you last night! I am so sorry I didn't read this before we met. One of the sweetest ladies in our church suffers from Crohn's also. I will ask her what she takes,etc. to see if she can give any encouragement! I needed last night's message so much and was so happy that I could be there for the music, the message and meeting you! I will put you in my prayer journal!

    1. It was so nice to meet you! The other night was wonderful! That is so sweet of you to pray for me!

  8. Hi, Lenette: My 10-year-old niece, Meg, was diagnosed with Crohn's Disease when she was around 7 years old. She refused to eat because everything she ate went right through her. And she began to lose so much weight that, even when she would go through period of feeling better and would eat, she still began looking like a child with a severe eating disorder. Everything was affected. Her whole life was altered by this disease. About a month or so after they found out that she had cataracts in her gorgeous blue eyes and would need implants, they learned she had Crohn's. After many failed medications, they resected her bowels (that's been very challenging for very obvious reasons as a young girl heading into her pre-teen many changes in her small, fragile body). They also went the route of Humira/Remicade (neither worked for her -- and costly indeed!). I'm happy to report that with the resection, she's gained some weight on her small frame and is as beautiful and active as ever (even with her limitations from the surgery). She had the very best physicans in Ohio and I would encourage you to seek out the best that money and your insurance can provide. Start with US News and World Report and seek a second opinion (oftentimes at no charge) at the best facility for Gastroenterology (probably Johns Hopkins/Cleveland Clinic/Mayo). It's a major surgery and WHO performs it can make a dramatic difference in what your future looks like 5, 10, even 30 years down the road. Her mother was also a nurse, so I'm sure that helped with a speedier dx. Best of luck to you and God bless!

    1. Thank you so much for sharing this information! It means so much that you took the time and I will keep all of this in mind!

  9. Hi! I also found your blog through Kelly's Korner and wanted to offer (hopefully) some words of encouragement. I was diagnosed with Crohn's Ileitis in December 2012, and it was a really scary time. I had suffered from symptoms for a couple of years and ended up in the hospital, which is ultimately where I received my diagnosis (emergency colonoscopy...super fun!) While I have changed my diet and lifestyle, it was not enough to keep my Crohn's in remission, so I take Humira. I do believe that a combination of all 3 have helped me feel better. As you know, it's not a cure, but it has helped me lead a relatively "normal" life. Should you decide to go with Humira, see what your insurance pays for, then be sure to sign up for the Humira protection plan (it's like a discount card through the drug company and is free); it has saved me thousands of dollars. It's still an expensive medication, but I do believe in how much it has helped me. The self-administration is still hard for me (I have to give myself a pep-talk every time), but absolutely doable. Knowing the alternative (GI pain, diarrhea, etc), the 10-seconds of Humira shot pain every other week is worth it. I am so sorry that this is your diagnosis, but I am glad that you have answers to your many years of pain. I pray that you find strength and comfort in the Lord, and that He uses Crohn's Disease to draw you closer to Him and to show His glory to others. It is a constant reminder for me of the brokenness of this world, and I cling to the hope of a new, disease-free body in eternity! God bless, and many prayers from one Crohnie for another :)


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