Tuesday, February 12, 2013

My Life With Crohn's


I was diagnosed with Crohn’s Disease in October of 2010. For those that don’t know Crohn’s is an autoimmune disease in which the body attacks the digestive tract causing abnormal inflammation. My symptoms include bloody stool, diarrhea, and slight cramping. Thankfully, I have never had a lot of pain. There can be many awful complications ranging in severity and to be honest I don’t like to think about them much. Crohn’s is either active or in remission. I have been in an active flare since June 2012 and it has been the longest, most taxing 9 months of my life. Who knew that pooping could take so much out of a person?! At its worst I was having 15-20 bouts of bloody diarrhea a day and literally couldn’t make it from the couch to the toilet which was about 5 steps away. It is a very humbling experience to poop your pants in front of a 2 year old. However, every cloud has a silver lining. Casey was starting his journey in potty training so it became a very teachable moment about having an accident. :-)

There are a few things I have learned about living with Crohn’s Disease… (It’s a good thing that I don’t embarrass easily as modesty is nonexistent during a flare)

1) NEVER…never…never trust a fart, as there is ALWAYS going to be something with it!
   2) There is a need for a large tote sized purse as I ALWAYS carry extra pants and underwear because 
it’s not IF I poop my pants…it’s WHEN.
   3) Diapers and a large plastic garbage bag make an excellent toilet for the car in a pinch. 
Also I love baby wipes!
  4) Public restrooms have an incredible echo…I use the flush of the toilet to drown 
out the “machine guns.”
5) If you hold your stomach while running to the bathroom, people will get out the way because they assume you have to vomit (oh if only they knew!).
6) Wearing a belt is underwear suicide, as are tied draw strings.
7) The postpartum peri-bottle…not just for post partum anymore…now a Crohn’s bidet.
8) Being able to connect with others suffering from the same disease is a huge blessing.
9) It is okay to ask for help (although that doesn’t make it any easier for me).
10) Never will I complain about constipation…it would be a welcomed poop vacation!

I can remember that there was a point this summer when I couldn’t see any light at the end of the tunnel, in fact there wasn’t an end to the tunnel. I kept thinking this is going to be my life and I will be trapped at home and unable to care for my kids. 

Then at the lowest point it was 'I am not even going to make it at all.'

When I finally ended up in the ICU for signs of sepsis that is when I decided that Crohn’s had taken too much from my life already. I wasn’t the person, the wife, the mom, the friend that I wanted to be. I was angry at God. I had to give up breastfeeding (thankfully Evy got to 7 months first) and working out (because I was so anemic). Because of my anemia I needed 2 naps a day! I no longer had any dignity when going to the bathroom as I would full on sprint while unzipping my pants. I needed a new plan.
 So I switched to a new GI doctor, who is wonderful. I finally feel like I have a plan and a doctor who is committed to helping me achieve remission, not just end up in remission. I started a new drug called Remicade. It is an infusion that I will receive every 8 weeks. Basically, it allows the immune system to chill out so it won’t attack my intestines. It causes immunosuppression. I have had 2 of 3 starter doses, which are every 2 weeks and so far so good.

I have finally healed enough that I could start adding fiber back into my diet. At the height of a flare, to me, high fiber foods feel like sandpaper as they digest through the bowel; and to be honest, most foods wouldn’t even digest. I lived on avocado, rice, and turkey sandwiches (bread, turkey, cheese) for many, many weeks. Most GI doctors will tell you that there isn’t any scientific data to support diet having a positive or negative affect on achieving remission with Crohn’s, and that is true from a medical standpoint. There just aren’t studies being done in the area. I am sure pharmaceutical studies are far more lucrative. However, there is an amazing amount of testimonials from people that suffer from Crohn’s, Ulcerative Colitis, and many other autoimmune disorders that have changed their diets and have had positive results. In an effort to leave no stone unturned to achieve remission we looked to the Paleo Diet. Ty and Cori had already started their journey months before as did my parents. We figured that with a built-in support system, eating differently would be a lot easier. 

So we are Paleo and loving it. I find that I am no longer forcing food down, but almost that my body welcomes what I am eating (yeah I know that sounds cheesy) but it really has been an odd for me to feel good after I eat.

Finally, I had to learn that it is okay to ask for help and to accept it when offered. This has been the most difficult aspect of this flare. However, my husband is an amazing man and basically assumed my responsibilities of the household without complaint. He saw me at my most vulnerable and in my most embarrassing bathroom escapades and still thinks I am sexy. He is incredible. My parents have put their lives on hold and taken time away from their jobs so that I could take naps during the day, so that the cooking and cleaning got done during the day, so that I could expend the little energy I had playing with my kids, so that Casey got outside on walks and to the park, and the list goes on and on. They are amazing. My sister who is my infusion buddy, my doctor appointment buddy, and my Friday buddy has been my rock. When I first met Cori we bonded right away over personal poop stories, and I think we both knew that God had destined us to be sisters. It gives me great comfort when she is with me at the infusions and doctors’ appointments because I know that she keeps half of a “nurse’s eye” on me so that I can relax and just be the patient.

There are many others who have been an integral part of my mission to achieve remission.  Thank you so much for what you have done for me and my family.

Currently, I am about 3 weeks symptom free. Praise the Lord! In fact I told the infusion nurse the other day that I have poop pride. Oh yeah, I want to photograph it and hang it on the wall…it is beautiful, NORMAL stool! I am 100% Paleo. I am a Remicade patient. I am 4 weeks away from being totally off Prednisone. I am getting back to my old self. I am not under house arrest. I no longer need naps to function. I am no longer ruled by Crohn’s. My goal is remission and I will get there.