Hope for Conquering Crohns - My story and what I'm doing next!

How many people sit on their couch and think “my life is boring and no one wants to hear about it”? Most likely you are right. But when you get sick, things change. The pizza and chocolate ice cream that was amazing, doesn’t seem so good when they come back up. Get the picture? But that’s what makes life interesting. As you lay there with the flu, nausea, fever and the like, all you can think about is “when will it be over?”. That and “how many reruns of Seinfeld and Jerry Springer and Family Feud can they actually play in one day?!”.  I wish most diseases were “over”, like a flu is.

As I sit in my apartment, I recall all of the activities of last year. It's been an eventful year! For most, it probably fits into the "boring" category that no one wants to hear about. But.. My life drastically changed in the course of a year. I suppose lives do that. We all have these times in our lives. People get married, have children, move to a new town...all those things that are "happy" times. There are also devastating things that happen to us, most of which include something like illness, death, or financial issues.
This year I've had many of those happy times. I am a newly wed, and moved with my husband into a little apartment, and we have had so much fun setting up our lives together. But all this is in spite of my devastating Crohns episode of last year. Those of you with Crohns can sympathize. I am sure there are many of you out there who have it far worse than I do!

Last November, I woke one morning to the sudden fever of 104 degrees, terrible arthritic conditions that left me literally unable to move, and intestinal distress that made my bowel habits unmentionable! OK, I soon will later actually mention the amazing wonders that can happen as you develop Crohns, for those of you who haven't experienced it. A healthy gut is a gift from God. Seriously. I will never take for granted again having a regular day in the world of bowel movements. Anyway, there I was lying in bed, not being able to move, and most of my family has taken off to see my sister perform. Thank God I had one sister who has been a nurse and was able to get me to the local hospital (it was a Sunday I think). Looking back that was quite a job, as sitting up and walking were something that caused extreme pain. They thought I had the flu. If only that were the case! So they put me on antibiotics and sent me home. If any of you have gone the rounds trying to figure out what is wrong with you, you will understand the frustration that mounted over the next several months as I visited the local specialist in infectious disease, rhumitology, and finally the GI; which resulted in a month stay in the hospital. I think back and remember some of the funny things, like being 27 and being prescribed a cane. I thought "I seriously am 97 and only been living for 27 years. Really, an old lady already? I am supposed to live a full life and have grand kids and all that jazz before I feel like this". Even my eating habits resembled "old" people, with hot tea and mashed bland food being something I thought I might not be able to choke down for much longer.

Now, my trouble with all this didn't just start then. I've had horrible stomach pain since I was about 16. There were tests and scans and all sorts of doctors visits that led to a whole lot of "we don't knows". So I was treated for acid reflux and the like, and sent on my way. Years later, my sister was diagnosed with Celiac Disease (a gluten -wheat/rye/barley intolerance), and so I decided it wouldn't hurt me to go on a gluten-free diet as well. I still eat that way, as I feel it makes me feel better than I otherwise would. So there were small signs, but no one really paid much attention til it was serious enough to make me lose almost 40 lbs in 2 months.

I honestly don't even remember what happened some of last November in the hospital. When I arrived there, I was 84 lbs, and had so many things that had started to go wrong, I don't even recall knowing they were there. My family tells me that I had mouth sores, and the "acne"on my face went crazy. My eyes were swollen, so I couldn't even gut my contacts in and had to wear glasses for at least a month. I just pulled out the admitting papers that I took a copy of. When I got there they put in a pic line, and started TPN (nutrition via IV), mega steroids, antibiotics, humira, pain and nausea meds, zoloft, iron and blood infusions and a few other things that are inconsequential. They said (much later) that I could have died. And in fact I wanted to at the time...

In December, I was feeling some better, but the steroids were starting to effect my mental health. Nothing seemed to be able to quench the panic attacks and depression that were caused by the high doses of steroids. I really felt like I was going crazy. It was the first time I had ever thought about suicide in my life. I can understand now how people with severe pain, accompanied with these mental issues think about this. Never before have I felt so scared about life. As I finally got off the steroids, months later, I felt much better mentally. But as you know with prednisone

I did quite a bit of research about Crohns as we all do when you get it. I think more people "google" things now before they ask their doctor about them than ever before. One big problem though is that there is so much info out there! It is difficult to sort through them all. And wow! What they don't tell us! Why does no one tell us about the side effects of prednisone, humira and the like. I had no idea it was well known that the prednisone would cause. No one really consulted me about the infections and lowered immune system I would have. That my cancer risk was so high with humira, and that they self injections would hurt like h*ll. I seriously cry almost every time I had to take those. And after all I've been through I'm not a big wimp!

Also, I started my research about our lives here is the west. We are so toxic! I found all this info about processed foods, pesticides, and even what is in our water. I'll explore more about diet and such later, but geez! Why don't they tell us about this stuff!! Someone please, before we all end up with auto immune disorders. Prevention is so much more worth it.

So, here I am a year later. I've come a long way from last year, but then not so far as I would like. I'm not about to die, but I still have all the symptoms of nausea, stomach pain, joint pain, and extreme fatigue. I have found a doctor that is willing to work with the things that I would like to try to do, to more naturally heal myself. The problem was that while I was on Humira, there was not much else to do, because it blocks all the immune stuff that we might try to help.

What am I going to do for all my fellow Crohnies out there? I want to write about my daily struggles...the ones we all have, and find that no one really understands, and perhaps provide some humor for the situation. I want to encourage you. I am going to read books out there about health, healing, autoimmune, Crohns, ect., and try to comment on what I am doing from what I've learned, and how it is affecting me. And I am going to try all sorts of things that I've been wanting to, but never done because of money or fear or just plain frustration at my disease. I want to try things that some have found to be helpful (like LDN, ALA, DLPA, VIT C, Mistletoe, acupuncture, massage and the like) and report on how they are helping me, and those who want to chime in, do it along with me, or share something that's worked for you! Please share suggestions along the way! I need your support!

That's my story...nothing too unique. I am 27, and have a long life ahead of me. I still want to change the world, but find it hard to do with the pain that I have, and hope that I can find a way to help others through this!

Lastly, all the fellow Christians out there, pray for my endeavor if you feel so led. I want to find healing for myself, but also help for others. While discussing some prayer requests, my husband and I noticed how many people mention health issues. They affect us so acutely and abundantly! In our fallen world, we can not get rid of disease for good. But perhaps we can help each other in our own way, to ease the pain and in such show the love of Christ.

Ready or not, here we go....