Living with Colitis and Without Health Insurance

I was diagnosed with colitis two years ago. I am 32, and that was not the disease I thought I would have to be worried about. Name a disease, and pretty much someone in my family has it. The big C, diabetes, hypoglycemia, anemia, you name it. Diabetes is the front runner, and I was always trying to be careful not to be the next one diagnosed. I worked in a doctor's office, and I can assure you, colitis was not a word you heard very much. I was definitely thrown for a loop.

I started having what I felt was serious stomach problems when I was 22 and pregnant with my son. I was in so much pain, I couldn't even sit up straight. I went to three different surgeons, and no one wanted to touch me because I was so early in my pregnancy. All of them told me that I had "morning sickness." This was my second son, and I knew what morning sickness was, and this wasn't it. I was sure it was my gall bladder. I had two different ultrasounds, and I got no definitive results. I pretty much lived on *Tums and acid-reflux pills. Within the next few years, my mother and both my sisters had their gall bladders removed. I was angry because I had problems I felt were worse and for a longer period of time. I proceeded to go back to the doctor and request a hydascan. Unfortunately for me, I was told my gall bladder was fine. I decided I was overreacting, and tried to live with it. It would go in spurts with the pain, and I just took pepto pills (I cannot drink the medicine, I will throw up immediately), anti-gas pills, and heartburn pills.

It was Christmastime ( I was 30), and I ended up getting a viral infection. I was sick for a few weeks, and then when I started to feel better I found myself pretty much stuck in the bathroom. I started getting bad spasms in my stomach, and I couldn't eat, yet I kept having to run to the bathroom. I thought it was just the viral infection rearing it's ugly head. My husband's brother was over, and I remember being embarrassed calling my husband upstairs and crying and telling him that there was blood in the toilet. I was so weak, and my husband ended up taking me to the emergency room. I was so dehydrated, I had to have three bags of saline. I was sent to a specialist, and I ended up getting a colonoscopy and an EGD done. (EGD is through the throat and they are checking for severe acid reflux.) That is when I was diagnosed with colitis. I was told by the doctor's staff that if I call with problems to tell them I am one of his "colitis" patients and they will fit me in immediately. This was a huge relief for me, I now knew I wasn't crazy, and that there was something seriously wrong with my stomach. Having a specific viral infection can cause colitis, but I believe that I wouldn't have it forever if it was just from an infection. This is something I had been battling with for 8 years.

Unfortunately, do to downsizing at my husband's work, we lost our insurance. Now I couldn't go and be "treated" for my disease. This is where my story will differ from many other's. What do you do when you can't afford to go to the doctor, or for the prescriptions you need? You survive! I had a prescription for *bentyl (a stomach relaxer) which did help a little bit, and I hoarded it like it was gold. Only on my worst days, when I was curled up in a ball crying would I take it. I knew from my pregnancy that I couldn't eat bananas, so I avoided those. Just about everything else that bothered me, I would learn by trial and error. What a long two years it has been! I just went back to my anti-gas, heartburn, and *pepto pills.

It is a little embarrassing when you are in a social situation and you find yourself stuck having to go to the bathroom all the time. The best advice I can give is just watch what you are eating before you go out. I avoid pizza, heavy dairy, raw fruits, and "fatty" foods. It's difficult at times, but I have learned what is worse for me, and try to eat the things that might affect me when I am "safely" at home. I simply cannot eat raw fruit. I ate a pear once, and ended up in a ball crying from the pain. For me, it isn't necessarily the being stuck in the bathroom, it's the spasms in my colon. I am no baby, I bore both my children without drugs, and had seventy stitches in my hand sitting up. When it comes to my stomach, I just cannot find a way to "stand up" through it. I find when I am really stressed out, it flares up worse than normal. If you can take anti-anxiety medication, do it. I would rather be on anti-depressants than have spasms in my colon.

Another difficultly is trying to explain to people "why" you cannot eat pizza, or any other food they are suggesting. When I tell them I have colitis, they just seem to nod, without understanding. You simply don't hear that word often enough. It's frustrating when people don't understand or even seem to care, they think you are a "freak" because you don't eat pizza! I just explain that if I did eat it, I would end up with such severe pain, I would have to go to the emergency room. Once someone hears that word, they let it go. Colitis is not like a headache, it isn't something you can just take a pill with and forget about it. You have to constantly be aware of how you feel before you leave the house, you have to be careful of what you are eating while you are out, and always make sure that you have some kind of pill on hand in case it flares up. I only drink soda when I think I can handle it, or if I won't be out for long. Caffeine, fast food, fruit, and dairy seem to be the biggest problems for me.

It's tiring. It takes a lot out of me sometimes. I constantly have to tell my kids "I don't feel well" or "My stomach hurts, not right now." It can really get me down, but I just really have to make sure that I am watching what I am eating, and try to keep my stress level down and I will be okay. I know that I should exercise more, and I am positive that would help me out, but I just don't do it. I would love to be able to go to the doctor and be treated properly, but like thousands of other Americans out there, I just simply cannot afford health insurance. I will "cheat" sometimes too. I will eat at my favorite restaurant, and I will eat whatever I want, I just make sure I am going home afterwards! I just make sure I take some over -the -counter medicine before the main course comes. It does help out, not entirely, but enough to have made it worthwhile. My family is involved with me too now. I will constantly get "can you eat that?" or "won't that hurt your stomach?"
and I will stop and check myself before I consume whatever is in question.

The hardest thing with colitis, is that it can be different from person to person. You can try and follow the "colitis diets", but really, how many of us who have it do? I know that I don't! Trial and error is certainly not the best way, but that is the way I chose and I am still here. I have stopped being embarrassed about it, and have decided to educate anyone around me who doesn't understand, that what I have is a disease and not something as simple as a headache. If I can live with it, then they can too!