Nancy Reeves has lived with Crohn’s Disease for about twelve years. Nancy lives in Loose Creek, MO with her husband Sam. They have two children. She works for the American Legion Auxiliary, Department of Missouri. This is her story as told to Here Am I Hear Me. This story is for informational purposes only.
HAIHM: Tell us about your health condition and what exactly is Crohn’s Disease?
Nancy: Crohn’s disease is an inflammatory bowel disease. Its either in your digestive or GI trac but it can go from your throat all the way through to your pelvic area and so forth. Mine is in my small intestines. It’s like lesions, in your intestine. It’s like little cuts?
HAIHM: Is it like a tear? Can it tear?
Nancy: It can tear, my symptoms felt like somebody had hold of my intestines and would squeeze them and then let go, then squeeze them again and let go. It’s very painful.
HAIHM: When did you first notice your symptoms and what are those symptoms?
Nancy: I’ve had this for probably about 12 years. With my symptoms, I start feeling nauseated. I don’t know why but with me, it usually happens in the middle of the night. I wake up and I’m nauseated. I start cramping and I feel like I’m going to throw up.
HAIHM: is it like a bad belly ache?
Nancy: Yes, but about ten times worse! A lot of people have diarrhea but I never did. Mine was more constipation.
HAIHM: When you first started getting these symptoms you probably didn’t know what was wrong?
Nancy: I had no idea. I was in so much pain I went to the ER and that was the first time a doctor told me I had Crohn’s. After much testing, a Gastroenterologist specialist told me I had Crohn’s. I had no idea, I just thought I had a bad belly ache. I had no idea it was Crohn’s.
HAIHM: So, in the beginning you didn’t know what it was. You just knew you had a bad belly ache, tightening in your gut, so much pain and you didn’t know what it was?
Nancy: Correct, I had no idea what it was.
HAIHM: Did they do surgery on you?
Nancy: No, I’ve never had to undergo surgery. In my research I’ve seen where it could be a last alternative but I’ve never needed to have it. When I’ve always gone to the ER one thing they would check was to make sure there was no blockage in the intestine.
HAIHM: So how is this treated? Does it get under control, does it go into remission?
Nancy: There is remission. I’ve been in remission for about six years. I haven’t had a flare up but I still have other symptoms. I have to watch what I eat. They say what you eat doesn’t cause it but I’m a firm believer it can cause a flare up! The last time I was in the ER I had eaten a raw spinach salad and I was in the hospital for four days. It was the worst flare up I’ve ever had. That was about 6-7 years ago. I’ve not had a spinach salad since! (laughing) I’ve been in remission since I’ve gotten it back under control.
HAHIM: Are you on medication:
Nancy: Not at this time. If my symptoms start to get worse then they will put me back on medication. The medicine causes me such constipation I’d rather not be on it.
HAIHM: Why do you think you have this? Is there a known cause? Does it just attack one or what?
Nancy: They tell me, it’s hereditary. My Mom had bowel problems as well. She was never diagnosed with Crohn’s, but she had Irritable bowel and that’s part of this. So, I really think because of Moms problems, for me, it’s hereditary.
HAIHM: What was your initial treatment?
Nancy: Since it was a flare up that took me to the hospital emergency room, they put me on morphine because I was in so much pain and they were able to get me comfortable. (Laughing) The nurse asked me if I was allergic to morphine since I was scratching a lot. I told her I didn’t think so but I didn’t realize I was itching and scratching my arms so much! They had to give me Morphine for the pain. They performed a lot of GI tests where I had to drink that chalky drink. They needed to make sure I didn’t have any blockage in my intestines. Before I was allowed to leave the hospital, they had to make sure I could eat and not have a flare up before I went home. I now have a colonoscopy every 5 years where most people have them every 10 years. They check for polyps and make sure the intestine is healthy.
HAHIM: So, is there a cure or do you just manage this?
Nancy: There is no cure. You just have to manage it. You can with diet, exercise, and medication. There are people who have it much worse than I do so I feel blessed.
HAIHM: Is your medicine covered under your insurance?
Nancy: it’s covered to an extent. My doctor would prescribe the name brand medicine but insurance wouldn’t cover it unless I got the generic. Or else my insurance would choose which medicines they would cover.
HAIHM: How has your life changed because of this?
Nancy: It hasn’t really changed my life. It doesn’t really affect me other than I must watch what I eat. For instance, I had salad today – I can’t have salad any more this week. Any kind of ruffage I have to really watch the intake.
HAIHM: What suggestions or tips do you have for someone who is either newly diagnosed or has been living with Crohn’s for a while?
Nancy: If they are newly diagnosed they need to research. There are several websites out there that have really good information. You just need to research and find out as much about this as you can. Research, Research, Research, and find out about it. The doctors will tell you but I find you will get more information when you do your research. The research will give you a better understanding. You can find diet plans and that sort of things to manage this much better the more you know.
HAIHM: Along with research what else would you encourage people to do. Do you belong to a support group? Can one suffer depression with this?
Nancy: I do not belong to a support group. I don’t have depression but I can see where it could cause depression, because when you are on the toilet 24 / 7, yeah, I can see where you could become depressed! Depression could be a big factor in it
HAIHM: Anything else you want to share in general with someone living with Crohn’s that has worked for you?
Nancy: One of the main things is find a doctor you trust and are comfortable with. When I was first diagnosed with Crohn’s, I was seeing one doctor and I just wasn’t clicking with him so I found another one I liked better. Find a good doctor that you are comfortable with and don’t forget the research. The internet is a wonderful place to get information. One of my favorite websites to steer people to is Crohn’s & Colitis at CrohnsAndColitis.com. I have found a lot of valuable information there.
HAIHM: Nancy, thank you so much for your honest and transparent interview. We hope others who are suffering with this disease can find the medical information they need and they will find hope and support through your story
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