Ben and I met with my GI specialist yesterday to discuss the upcoming steps/treatment options, etc.
I will be trying to go somewhat Gluten-Free and I will be getting a ton more blood work done soon.
My GI’s assistant is starting the insurance process of getting the Humira for me…..today. She said it normally takes between 7 and 10 days to get approved. Once that is complete…the specialist pharmacy will overnight the meds to me on dry ice. The day it arrives, I immediately go to the GI’s office and they will administer the shots/teach me how to give myself shots.
The first day, I will get 4 back-to-back shots.
2 weeks later, I will give myself 2 shots.
2 weeks after that, 1 shot.
From there, I will give myself 1 shot every other week.
They said because I have moderate to severe Crohn’s that I will be doing this for a minimum of 2 years, but possibly for the rest of my life.
The assistant has given me some info to research and some avenues to go down to help offset my out of pocket price as this drug is about $3k-6k per month without insurance…..not sure how much the insurance will cover yet.
Anyway, Ben and myself would really appreciate some prayers right now.
Wednesday, July 18, 2012
Monday, July 16, 2012
a quick update on my health
So the last few weeks and months have been really tough health-wise for me. I have been on the supplements, prednisone, and anti-inflammatory pills for a while. I think at last count, I am taking 28 pills a day. Fun times.
However, this combination or type of pills or something, isn't helping to get me in remission. So, I called my GI specialists office today and requested that they start the insurance pre-approval process for Humira.
Humira is an immuno-suppressant. With this, I will have to give myself injections. I am extremely nervous about this, but honestly, I just want to FEEL BETTER. So if that means that I have to become a hermit (work and home only) because I will have no immune system, then so be it.
I am tired of feeling like crap. (pun intended. lol)
I would like to ask that my family and friends be supportive (and patient with me) in this next step in the journey I am about to take with Crohn's disease and auto immune disorder.
I would also greatly like to ask for prayers. For my health, for my strength, for my sanity, for my marriage, for my husband, for my mom and all of my close support system.
However, this combination or type of pills or something, isn't helping to get me in remission. So, I called my GI specialists office today and requested that they start the insurance pre-approval process for Humira.
Humira is an immuno-suppressant. With this, I will have to give myself injections. I am extremely nervous about this, but honestly, I just want to FEEL BETTER. So if that means that I have to become a hermit (work and home only) because I will have no immune system, then so be it.
I am tired of feeling like crap. (pun intended. lol)
I would like to ask that my family and friends be supportive (and patient with me) in this next step in the journey I am about to take with Crohn's disease and auto immune disorder.
I would also greatly like to ask for prayers. For my health, for my strength, for my sanity, for my marriage, for my husband, for my mom and all of my close support system.
Friday, June 1, 2012
Keepin' it real....
The last month has been a complete blur and so surreal feeling to me. I have done so much blood work, drank 2 too many nasty “cocktails” for testing, gotten an ultrasound, CT scan, Colonoscopy…and had follow up after follow up appointments. Then had a TB test; scheduled more lab work; and scheduled a bowel series barium test for soon. I have been through more pain than I ever thought possible and gone with less sleep, food, nutrition than I ever thought possible. I have tested new medicines, been put on the max dose, then had dosages adjusted. I have taken 20 pills a day for a week now. I feel like I have been through the ringer. And I am PISSED OFF about it. I am pissed that I am hurting. I am pissed that this is happening to me. I am pissed that I can’t eat or drink what I want. I am pissed that I keep getting poked and prodded. I am pissed that I have bruises all over me. I am pissed that I am tired all the time. I am pissed that I can’t sleep. I am pissed that this is happening to me. I am pissed that people think I have been self-diagnosing myself online. I am pissed that people don’t believe I know what side effects I am having from different medications. I am pissed that it took so long for anyone to believe that I am not crazy with this pain. I am pissed that I didn’t fight harder for an answer before. I am pissed that I have a disease that is non-curable. I am pissed that people are not supportive as I thought some would be. I am pissed that I can’t even express how grateful I am to those that ARE supportive.
I am just pissed off. And I feel that I have every right to be. I might be like this for a few hours; I might be like this for a few days. But this is the pissed off stage of my “grieving process” of being diagnosed with Crohn’s disease. So please excuse me while I go be a little more pissed off.
I am just pissed off. And I feel that I have every right to be. I might be like this for a few hours; I might be like this for a few days. But this is the pissed off stage of my “grieving process” of being diagnosed with Crohn’s disease. So please excuse me while I go be a little more pissed off.
Tuesday, May 29, 2012
medical follow up appointment/Crohn's Disease
Today was the follow up for all of my lab work, colonoscopy, scans, etc over the last few weeks. To say that I am overwhelmed, would be the truth.
The polyp that was removed during the colonoscopy, came back pre-cancerous. They removed all of it during the colonoscopy, but with my family history of GI cancers, I will have to have a colonoscopy at least every 2 years if not sooner. Cancer is a scary freaking word and it hit me to the core when he said it. Thankfully, it was caught before it turned into anything major and we will be able to monitor it closely.
Next!!! The tests came back postive for autoimmune disorder (which means that my body is attacking itself), positive for Crohn's disease, and positive the ilium stricture.
What this means is that I will continue the 3000 mg of Pentasa a day, 20mg of Prednisone a day, and will be closely monitoring my diet to see what affects foods/drinks have on me.
If I have another flare up, the dr is saying that I will more than likely be put on Humira (which means giving myself injections in the stomach several times a week). He would like to do everything possible to avoid this, as there are MANY risks to Humira and such drugs.
This is life changing for me and something I am not taking lightly at all. I am scared. I am nervous. I am in shock.
I will be doing several more blood tests, skin lab work (for TB, etc), and a bowel xray with barium over the next few weeks. More than likely I will also be reporting to the GI specialist every 2 weeks for a while.
Below is a link that helps explain Crohn's disease for those that are aware (just as I wasn't until a few weeks ago):
http://www.ccfa.org/info/about/crohns
We would like to ask that everyone continue to prayer for us during these times.
Also, I would like to hear opinions, thoughts, prayers, recommendations from anyone that wants to offer about Crohn's disease, etc.
The polyp that was removed during the colonoscopy, came back pre-cancerous. They removed all of it during the colonoscopy, but with my family history of GI cancers, I will have to have a colonoscopy at least every 2 years if not sooner. Cancer is a scary freaking word and it hit me to the core when he said it. Thankfully, it was caught before it turned into anything major and we will be able to monitor it closely.
Next!!! The tests came back postive for autoimmune disorder (which means that my body is attacking itself), positive for Crohn's disease, and positive the ilium stricture.
What this means is that I will continue the 3000 mg of Pentasa a day, 20mg of Prednisone a day, and will be closely monitoring my diet to see what affects foods/drinks have on me.
If I have another flare up, the dr is saying that I will more than likely be put on Humira (which means giving myself injections in the stomach several times a week). He would like to do everything possible to avoid this, as there are MANY risks to Humira and such drugs.
This is life changing for me and something I am not taking lightly at all. I am scared. I am nervous. I am in shock.
I will be doing several more blood tests, skin lab work (for TB, etc), and a bowel xray with barium over the next few weeks. More than likely I will also be reporting to the GI specialist every 2 weeks for a while.
Below is a link that helps explain Crohn's disease for those that are aware (just as I wasn't until a few weeks ago):
http://www.ccfa.org/info/about/crohns
We would like to ask that everyone continue to prayer for us during these times.
Also, I would like to hear opinions, thoughts, prayers, recommendations from anyone that wants to offer about Crohn's disease, etc.
Thursday, May 24, 2012
Medical update/life update
Life has taken a definite spin for us this month.
Beginning the first weekend in May, I started having some pretty serious personal health issues. After seeing, my regular dr, a GI specialist, an ER visit, more GI specialist appointments, an ultrasound, and a colonoscopy later…..it is determined that I have Crohn’s disease. And a pretty serious case of it.
Right now, they have me taking 6 anti-inflammatory pills a day and 4 steroid pills a day to try to get everything under control and into remission.
I feel ok, but I am constantly tired and very worried/scared about the outcome of all of this and where this will take us on our journey that WE had planned. We should have known, this isn’t our journey, but it is His journey for us. I am putting all of my trust in our Lord and know that he has a plan for us.
If you guys (if anyone even still reads this blog) don’t mind, please just keep Ben and myself in your prayers. We would love to be covered in prayer during this time in our lives.
Does anyone have any experience with Crohn’s that could give me diet recommendations or any other advise. It would be greatly appreciated.
Beginning the first weekend in May, I started having some pretty serious personal health issues. After seeing, my regular dr, a GI specialist, an ER visit, more GI specialist appointments, an ultrasound, and a colonoscopy later…..it is determined that I have Crohn’s disease. And a pretty serious case of it.
Right now, they have me taking 6 anti-inflammatory pills a day and 4 steroid pills a day to try to get everything under control and into remission.
I feel ok, but I am constantly tired and very worried/scared about the outcome of all of this and where this will take us on our journey that WE had planned. We should have known, this isn’t our journey, but it is His journey for us. I am putting all of my trust in our Lord and know that he has a plan for us.
If you guys (if anyone even still reads this blog) don’t mind, please just keep Ben and myself in your prayers. We would love to be covered in prayer during this time in our lives.
Does anyone have any experience with Crohn’s that could give me diet recommendations or any other advise. It would be greatly appreciated.
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