Colitis Ninja (CN): How old were you when you started getting symptoms?
Mama Ninja (MN): The first I remember having symptoms, I was about 18.
CN: I remember you saying that Aunt Tammie was always sick. When did she start having symptoms?
MN: Aunt Tammie had intestinal problems very early. I remember she had hemorrhoids when she was about 8 and that could have been about the time hers actually started.
CN: How many doctors did you see before you were diagnosed?
MN: I wasn’t diagnosed until I had surgery for a ruptured appendix. My appendix had ruptured and I didn’t know it. The first doctor never ran any tests or x-rays to find out the cause of my pain. He just assumed I had an ulcer. It wasn’t until I began to run a fever that the doctors became concerned. The doctor said my appendix had tried to heal itself, built a wall around itself and was about to rupture again. Infection and gangrene had set in and spread to my colon. They had to remove my appendix, along with 8 inches of my colon. That’s when they discovered the Crohn’s. Back then they didn’t call it Crohn’s. They called it Regional Enteritis. Anytime I went to another doctor and had to tell them my history, they always asked me what Regional Enteritis was.
MN: Your dad knew what was going on. We were engaged and our wedding was set for June 26. I went into the hospital about two weeks before the wedding date.
CN: Who was with you in the hospital when you woke up from surgery?
MN: He (Ninja Daddy) was standing beside my bed when I woke up–as best I can remember.
MN: They didn’t give me any medicine for the Crohn’s. The only thing I was given, was pain medication and antibiotics.
MN: It was a general surgeon who performed the operation, Dr. Tommy Ruff. I heard he died a couple of months ago.
CN: What was going through your mind?
MN: It wasn’t really a big deal at the time. I didn’t understand what Crohn’s was. Medical professionals didn’t tell patients much back then, and I didn’t ask a lot of questions. I just knew that I had some kind of disease that caused my abdomen to hurt, especially if I ate raw nuts or fruits.
CN: Was Aunt Tammie officially diagnosed before or after you?
MN: Tammie was diagnosed about 7 years later. She was in the hospital having surgery for hers on the same day Crystal (Ninja Sister) was born.
CN: How long after surgery was your wedding?
CN: I remember feeling really bad for WEEKS after my surgery. How did you feel and when did you start feeling better?
MN: I felt bad for a long time. I, too, had an infection in my incision. I remember it itched like crazy. I was miserable! There was nothing I could do to relieve the itching. We tried everything from anti-itch creams, to antifungal powder. Turns out that my infection was caused by something the doctors left inside of me. Once the infection went away and I started feeling stronger, I wasn’t as miserable. It was at least 6 weeks before I started to feel better, although the BM problems lasted for a couple of years.
CN: Did you worry about your scars?
MN: I’ve always hated the scars. But once they finally healed, wasn’t so bad. They are really ugly, though.
CN: Did you ever worry you might not have children?
MN: Yes. I worried that I wouldn’t be able to have children. Jack Jr.’s ex-wife was a nurse and she told your grandmother that I would never be able to have children because my bowels would burst. So that worried me. I asked Dr. Guess about it and he said that was ridiculous and there was absolutely no reason why I shouldn’t have children.
MN: I didn’t really have a lot of support. No one understood the disease, and really didn’t care. That is until Tammie found out she had it and then she understood.
CN: Have you had a lot of problems since surgery?
MN: I haven’t had any problems with the disease to speak of, since my surgery. I’ve had 3 or 4 flare ups that were pretty bad, but I’d say 3 or 4 flare ups in 30 years is not bad at all. I can live with that.
CN: Yeah, I remember once or twice when we were young and you were laying on the couch not feeling well and you said you have Crohn’s. Do you remember that? I didn’t know it was that bad. Ha!
MN: Yes, I remember that.
CN: How long did your flares last and did they put you on medication then?
MN: My flares usually last about 2 or 3 days. The only medication I took was prescribed by the young doctor that didn’t know what he was doing and said the pain was caused from menstrual cramps. I didn’t go back for treatment after that!
CN: What did Dad think when he found out you had to have surgery? I know it was initially for your appendix.
MN: I’m not sure what your daddy thought. He was concerned and very patient with me, but I’m not sure what his feelings were.
CN: What did Mamaw and Papaw say or do?
MN: Mamaw came to the hospital to see me, but she couldn’t wait to get out of there. She never stayed over night with me. Your daddy did, though. He came in one night after 10:00. He got off work, took care of some things at home and then drove to Jackson from D’Lo. Papaw sent me flowers, but didn’t come to see me.
CN: Did you ever think that your kids might get IBD?
MN: I never dreamed that I could pass it on to my children. I feel really bad about that, but I am so proud of you and your work.
CN: What went through your mind when the doctor told you I had Crohn’s or UC?
CN: How are you feeling now?
MN: I’m doing good I’ve had minor flare ups from time to time, but it’s been awhile since I’ve had a major flare up thank God! I try to be careful about what I eat. Sometimes fruits and nuts bother me and sometimes they don’t. Some of the worst flare ups I’ve had were because I ate fruit salad, with bananas, strawberries, melons and apples. So I stay away from that combination.
CN: Where did you go to find information about Crohn’s Disease? Did you do research?
MN: Back then I didn’t have internet, so I couldn’t do a lot of research, however, I bought a book about Crohn’s and read up on it. I may still have the book somewhere. I watched a talk show years ago (it may have been Oprah). They interviewed beauty queen who had Crohn’s. She described how in between competitions she thoughtlessly grabbed a handful of grapes and ate them, because she was so hungry. Within a few minutes she was on the floor in the fetal position. It was a really good interview. That’s when I realized how widespread the disease was.