Disclaimer
I am not a medical professional; my degree is in Sociology. I am just a regular everyday patient suffering from Crohn's. Please check with your doctor before you make any changes to your routine including nutritional supplements, major diet changes, change in medication, etc. Don't take advice from random websites! Research what you learn, and be wary of people who try to sell you a "cure." I try to give good information and advice here on my website, based on my own experience. However, I could easily get something wrong, so please research things yourself and let me know if you see any errors on my site. Thanks! I don't have any "Crohn's disease cure" quackery on my website, (there is no such thing!) but I do attempt to make a few bucks from my blog ads and referrals, so I just want to make sure we got all that legal business straight before I go into my story.
My Story
I was diagnosed with Crohn's disease in May of 2006. I think I may have had it for alot longer than that, possibly since I was 16. That is when I first experienced the joint aches and pains. When I was in college I caught a strep throat-like bacterial infection that I was unable to shake. I ended up having to take penicillin daily for something like 6 months, take a semester off of college, and get my tonsils removed.
After I got my tonsils removed I started to recover very slowly but I was still afflicted with a terrible crushing fatigue. After seeing a number of doctors and specialists, I was diagnosed with Chronic Fatigue Syndrome. This really wasn't alot of help because there was no consensus if this was actually a real disease, and no particular treatment. After a few years of going very slow, and fighting a daily battle to get up and moving every day, I started to get better and back to my usual (kind of low anyway) energy level.
To make a long story short, I graduated from college, worked, bought my own house, re-located to Atlanta, met a great guy and got married. After 6 years of trying to have a baby (turns out I have Polycystic Ovarian Syndrome) we hit the double jackpot and I had two boys 17 months apart in age. Having these kids at age 35 and 36 was hard on my body. After I had Ben I had gallstones and had my gallbladder removed.
For Memorial Day in 2006 we took a trip to Virginia Beach. It was a really fun trip and I did alot of swimming, walking, etc. On the long drive back to Atlanta I started getting a really bad headache. (Now I know these are migraines) I took ibuprofen and soldiered on.
After I got back home the headache got worse and I felt sicker and sicker. I took more ibuprofen, as I usually did for my bad headaches. I had diarrhea and I was throwing up at night. I couldn't eat and my stomach was upset. I thought I had a sinus infection that was causing my stomach to be upset. I went to the doctor and they prescribed antibiotics and a strong decongestant and told me to come back if I was not feeling better in two days.
By the time two days went by not only was I not better but I was so weak I could not even drive myself to the doctor. My friend Melissa drove me to the doctors office and they called my husband from there to take me to get a CAT scan and then to the hospital. The doctor asked some more pointed questions - did I have abdominal pain, etc. I didn't even realize I had abdominal pain until the doctor poked me in the gut and I screamed ouch! I guess I was out of touch with my own body. I ended up being admitted to the hospital. I will spare you the gory details but another CAT scan, a colonoscopy, and a bunch of other tests later they figured out I have Crohn's disease.
I thank god for Dr. Critelli, my gastroenterologist. She happened to be the one assigned to me by the hospital, and I am sure it was my guardian angel watching over me that day. She is so compassionate and thorough. Once I started taking the steroids they prescribe for an acute Crohn's flare, and Pentasa, I finally started to get better. I was a pretty sad sight there in the hospital - let me tell you. They said I have mild Crohn's disease, and if this is mild, I don't ever want to see severe.
The impact of the illness on family and friends.
In some ways I think it was as hard on my husband as it was on me when I was at my sickest. My husband had to take care of the kids, the house, try to visit and worry about me. It was so hard on him and the kids, who were too young to understand why I was gone. My parents were in Europe on a trip and they called me every night. My mother in law dropped everything and flew down to Atlanta to help us. I remember being on the phone from my hospital bed calling my friends and asking each of them to help Jin out by babysitting the kids for an hour or two so he could have a break. I didn't want anyone to help me - just help him and the kids!
The emotional roller coaster of the diagnosis.
I have previously blogged about some of the complex emotions I feel about being diagnosed with Crohn's disease. In some ways it can be very depressing, as it is a lifelong incurable disease. And let's face it, it's not the sexiest disease out there on the market.
But strangely, there is also some joy that came for me in the diagnosis. Because now I can get the proper medication and treatment, I finally feel better. Instead of a mystery illness, I now have a real official disease thank you very much.
And the vindication, I really feel pretty proud of myself and all I have accomplished in my life with the pain and limited energy levels I have.
There is also a wonderful bonus that comes with having a debilitating condition - you have an instant and valid out when people ask you to do things you do not want to do. I am a real "people pleaser" type personality and I find it very hard to say no to people, so its very handy for me to be able to just play the "crohns card" and say no when asked to do things I don't have the time or energy for. (Sadly this does not work in the workplace) LOL.
Great Web Site and Stuff I have learned about.
CCFA - Crohn's and Colitis Foundation of America. Ulcerative Colitis is the cousin to Crohn's disease. they are both the two forms of IBD.
Wikipedia crohn's disease entry
Healing Well - This informative site also runs a great Cronh's Disease Forum with some really nice folks. Here is a previous blog post about Healing Well.
The Spoon Theory - Must-read essay by a Christine Miserandino. She shares her personal story and analogy of what it is like to live with sickness or disability
My Kaboodle List of handy products for Crohn's sufferers. Check out the EZ Dose pill container zip bags, and the fantastic heating pad you can sleep on.
My Crohn's Disease Relief Shopping Page. I make a small referral fee when you shop the online drugstore AmericaRx.Com. Here are some products I have listed for you that might help you get some relief.
Surprising things I have learned about Crohn's disease.
Before I got it, I really didn't know anything about Crohn's or Ulcerative Colitis, the two forms of IBD, or Inflammatory Bowel Disease. I recommend the Healing Well and CCFA links above to learn more about these two poorly understood "sister" diseases.
Interesting Crohn's facts I have learned:
- Each Crohn's sufferer will have different types of symptoms, level of disability, and be able to eat or not eat different foods. There is no one cookie cutter profile for a Crohn's patient, or a perfect Crohn's diet. Be wary of anyone who tries to "sell" you the secret to curing Crohn's. If there was one solution, believe me we would all know about it. Crohns disease and diet are related, but there is no magic crohn's disease diet.
- If you have one autoimmune disease such as Crohn's you may be more likely to suffer from another autoimmune disease as well, such as arthritis (joint pain is also a Crohn's symptom), allergies, asthma, etc.
- Some days I feel good, others I feel like crap. It seems to be a cycle of flaring up, and calming down. My doctor says this is typical.
- I've learned people with CD need to avoid talking any NSAID type pain relievers such as ibuprofen, aspirin, aleve, etc. We can take Tylenol. Because I used to rely on ibuprofen to manage my migraine headaches, I have how gone to a neurologist and treat them with other types of medication and pain medication. Crohn's causes tremendous pain. I have found that a heating pad can help, in a addition to all the other traditional remedies like pain pills.
- I personally have noticed that other things that bother my CD are decongestants such as mucinex, (Sudafed seems to be ok for me) artificial sweeteners, and greasy foods or very fibrous foods. Also chocolate really irritates my stomach. I still love it but I have to make sure I don't eat any in the evening - just earlier in the day and just a little bit.
Inspiration - No Guts no Glory!
NFL Quaterback with Crohn's Disease - you cannot help but be inspired by st story of David Garrard, QB of the Jacksonville Jaguars.
"You have to keep your dreams alive. You can't just hope and wish. You have to take action and make it happen both in your mind and in your heart."
CCFA Walk - Take Steps for Crohn's and Colitis.
Randy's Story. Randy is a guy afflicted with CD alot worse than me. He goes by the handle RandyNoGuts. (read his story and you will know why!) His optimistic attitude, and great sense of humor really has helped me keep it all in perspective. Here is his website and story.
Many wrong Ways you can mis-spell Crohn's Disease:
For those people trying to do a web search on Crohn's but can't spell it correctly:
Crones disease, Chrones disease, Krones disease, cromes disease, crohns disease, Krohn's Disease, Krohns Disease, Kromes Disease, cronh disease, chromes disease
