I was diagnosed with UC March of 2009, but my story begins much earlier than that!
When I went to college in the fall of 2003, my food palate expanded to all sorts of new foods in the school’s cafeteria. I soon realized that I couldn’t eat certain foods because they caused me to have really bad gas (how awesome is that to experiment new foods, have horrible gas, and have to live with a new roommate who gets to experience the process with you!).
Then 2 years later, 2005, I found out that I was lactose-intolerant again (I was lactose-intolerant when I was a baby and then grew out of it). So I’ve had digestive issues for awhile. My doctor says they’re not related, but I’m still really sensitive to foods and totally think that they were just procurers to my disease getting bad.
In the fall of 2008, my husband and I moved to California and I started having side pain once in awhile. We didn’t have insurance at this time, and I thought the pain/discomfort was weird enough that we should get insurance and get it checked out. I finally got to a doctor in January 2009 and she thought it was an ovarian cyst. I got it checked out, and I did have a cyst. But in February I called my doctor and said the pain hadn’t gone away and I started having blood in my bowel movements. She sounded nervous and referred me to a Gastroenterologist.
I first met with my GI doctor in February. He thought that I probably had IBS, but wanted to do a colonoscopy to rule out anything else. So in March 2009 I had a colonoscopy and in my hazy state after I woke up from the procedure, I heard my doctor say “I think you have UC”….. What?! I had no idea what that meant, but it was a disease and that sounded pretty serious.
What a shock. I wonder how the first year went for other people, since for me, it’s really has taken a year for my mind to wrap around that fact that I have a disease and that I need help! After finding out about prognosis, I was very interested in learning how we could treat it and have it over with. Little did I know that it would be such a long process! I started out taking an oral 5-ASA and an 5-ASA enema too. Little did I know too, that drugs for an uncommon disease were going to be so expensive…boy have I learned! My insurance wasn’t good, and it took me a couple of months before I knew what “formulary” meant and how to get it. “Formulary” just means a type of off-brand form of your medicine that your insurance will cover most of the cost for. I’ve been on and still take the oral 5-ASA, but it does’t do anything too significant at improving my symptoms.
I started taking prednisone on and off from the end of the summer until November (2009). What a horrible cycle. I hate that stuff. I had a period of two weeks after I first started taking where I did have some significant relief from bathroom trips and painful bowel movements. But the prednisone didn’t have the same effect each time I took it after that. In November my doctor gave me hydrocortisone enemas, which now replace my 5-ASA enemas. They totally helped for about 2-3 weeks by reducing my increasingly frequent trips to the bathroom in the mornings. But again, those didn’t relieve any of my other symptoms of long, exhausting, bloody, and painful bowel movements/mucus that occurred throughout the day. I was pretty disappointed that nothing was working and that “figuring this out” was taking so long.
In November 2009, I started reading about natural ways to treat UC and in December started slowly not taking my enemas or oral 5-ASAs. We also visited family at Christmas and I wasn’t able to eat my normal diet. I was also trying to chang my diet to the Maker’s Diet, but still allowed myself to eat whatever when I visited family and friends and they fed us. At the end of December though, I was starting to have really bad symptoms by not being consistent about taking my medicine or eating well.
At the end of January 2010, my UC got so bad that I had to start taking days off from work and I finally told my doctor that I wasn’t taking my medicine regularly and that things were getting much worse. The first week in February he then put me on 60 mgs of prednisone (I was only taking up to 40 mgs before when I took it) and he told me to stay home from work for awhile. After two weeks of prednisone at 60 mgs, I barely saw changes in my symptoms so we decided to give Remicade a try. And for me, Remicade was the first medicine I’ve taken that actually improved almost all of my symptoms and made me feel normal again! OMG! I know everyone’s story is different, but I can’t believe how I’ve been so sick and now so normal in the matter of a couple weeks. It’s crazy and awesome J
There’s only a couple of awful things about Remicade though. First, I don’t really like going to the hospital to get the infusions. Second, it’s an artificial drug which they don’t know much about as far as how it will affect my body for the long term. Third, my husband and I can’t start a family while I’m on this medicine. That alone supremely bothers me. It’s not like I can just go off of it tomorrow if we wanted to start trying to have a baby. What really bothers me is that I don’t know what will happen in the future. My whole UC story has been a waiting game. Waiting to see if these medicines will work, waiting to figure out they do or don’t, and now waiting to see how long I will feel good on them or if I will start healing and can go off of them…. AHHHHHH!! I’m totally not in control and that sucks.
I wish so bad that I could just open up my colon and have a talk with it about what’s going on inside there and what I should do to make it better again. But it’s just an organ, which I can’t see, messing with my regular immune system, and causing me to bleed. Yea, I still have blood in my bowel movements, but each day it’s different. I don’t have a lot on some days and I have more others. But I have no other UC side effects besides that and I still have a lot of food sensitivities.
My long term plan though, is to be on my all medicines for awhile and see what I can do to learn the other side of treating UC naturally. Only this time, I’m not going to change my medications just because I learned something horrible about them. I want to do this slowly and well informed. I quit one of my part time jobs and now do a lot of studying about how to treat UC and planning/making super healthy meals to give my body a boost in the healing process.
Hi Sheli, thanks for sharing your story.
Have you read the book Breaking the vicious Cycle by Elaine Gotshall regarding inflammatory bowel disease?
I’m still waiting for my official diagnosis…my next appointment with the hospital is Tuesday, but I started the Specific Carbohydrate Diet 4 weeks ago and already my symptoms have improved, especially the bleeding! It really is worth trying for a month or so, it does mean being more organized with food plans etc, but once you get your head round it it’s not so bad, I take probiotics instead of the yoghurt for now, which seems to work. And once you start seeing results , you’ll never want to eat any other way!
Apologies if you’re already doing it, I just didn’t see any mention of it
I just checked out the SCD and it’s awesome. I’m already sold on the philosophy since that’s what I’ve been reading about with the Anti-fungal Diet (by Doug Koffeman) that I’ve been doing since mid Feb. But the SCD diet allows more food than the Anti-Fungal Diet does, so I’m pumped! Also, the reasoning behind each food being either “legalized or illegal” is listed on her website. The info for the SCD is so easily accessible online, do you think I should get the book anyways? I’ve missed foods like bananas, wine, and dates… I think it will be easier to stick to this diet! I’m going to look into other yogurts that you can buy too, since I understand why she doesn’t, but I’ve read about Redwood Yogurt being a brand that doesn’t use the bad lacto.. in it. I’m lacto-intollerant (surprise surprise), but I can drink goat’s milk, so I’ll see if I can find some good probiotic goat yogurt :D
Thanks so much for your input! I really hope this diet is helping, but I can’t really tell a difference because I started this kind of diet around the same time I started my Remicade treatments… I’m not sure which one is doing the trick :) I’m so glad to hear that you’re getting such good results from it though!
I just wondered how your hospital visit went yesterday. What did you find out?