What is Ulcerative Colitis?
Ulcerative colitis has similarities to Crohn's disease, another form of IBD. Ulcerative colitis is an intermittent disease, with periods of exacerbated symptoms, and periods that are relatively symptom-free. Although the symptoms of ulcerative colitis can sometimes diminish on their own, the disease usually requires treatment to go into remission. Ulcerative colitis occurs in 35–100 people for every 100,000 in the United States,[1] or less than 0.1% of the population.
I was diagnosed with this disease in July of 2009. I had been having problems though for many years prior to this and would go into the doctor and talk to them but they would dismiss my concerns. They stated that I wasn't going to the bathroom enough, as if 10 bowel movements a day is not enough. They kept talking about IBS but then I started having blood. I was shocked when the did my first colonoscopy, they are not supposed to do that until you are much older.
I went in and had my colonoscopy and they diagnosed me with Ulcerative Colitis at that point. I was saddened by the news but was also happy by the fact that I finally had a diagnosis. We had a family friend who also had this diagnosis so I was optimistic. They started me on medications and I was hopeful that this would be able to get it under control and I would be able to live a somewhat normal life. Needless to say you know what they say about planning for anything.
Since that diagnosis I have been hospitalized three times, this one that I am in currently included. I have also tried a vast variety of medications. I have been on Prednisone for almost two and a half years, which is quite some time. I have tried multiple biologic medications and have been willing to do almost anything to try and curb this illness.
I have had my ups and downs. I got really sick after Jude was born, and as it appears also got sick after Teagan was born. After Jude was born I was up trying to help take care of him and would have to stop feeding him in order to call Censie to come and help so that I could go to the bathroom. I remember one time I took him to the park and we came home and when we got to the door I had to go to the bathroom. I had to put the stroller inside and run to the bathroom so I didn't have an accident and I could just hear Jude crying that he wanted out of his stroller. This has been an ongoing theme again with Teagan. I have talked with Censie multiple times about this and being in the hosptial and she brings up a good point when I am in a Flair I cannot be a present father like I want to be. It is hard to be a present father when you are having 20 bowel movements a day.
I have learned that I have to check my ego at the door with this illness. I was very shy at first talking about it because lets be honest who wants to talk about their poop all day. I have learned that there is not a lot of awareness about this illness and I am hoping that by being vocal I can bring more awareness to this illness and how it affects me as a father. I have had to talk to my work about going home because I have had bouts of fecal incontinence, yes that is right I have pooped my pants as a grown adult. That is the problem with this illness I have no control over my colon when I am sick.
I want to be able to be at Jude and Teagan's events, graduations, and weddings without having to worry can I make it through without having to go to the bathroom. I am always nervous and looking for the bathroom and this also makes Censie worry because she does not know how I am feeling. She is worried to go off while we are shopping because what I am going to do with two kids if I have an accident or a bout and have to go to the bathroom. We are currently talking to doctors about one more medication and will be talking about surgery as well. This is going to have a huge impact on my life and also my family's life but I need to be healthy.
I have vowed that I am not going to allow this illness to beat me and part of that begins with support and advocacy. I need to share with others with how I am feeling and I need to be open and honest about how it affects me so that those around me know what physical aspects I am going through. I hope that this helps and if you have any questions about my Ulcerative Colitis or my story please email me at jdsawyer00@gmail.com.
I have ulcerative colitis as well and I was diagnosed back in 2001 and let me say that was rough. It is a rough disease but I try not to allow it to rule my whole life!
ReplyDeleteIt is so simple to let it consume everything. I am doing my best to not let it but as you know it is pretty hard. I hope that you continue to feel well and hopefully and end is in sight for this horrible disease.
DeleteHello. I found your blog, and wanted to pop in and say hi. My husband was diagnosed with UC in 2009 as well. Like you, he had problems leading up to the flare that finally prompted testing. We were relieved with the diagnosis, but had no idea what we were in for. We initially stuck to the basic foods, like rice, chicken, and carrots. But even that caused him significant pain. He lost 70 lbs, and was in pain constantly as he refused to go on medication because of the side effects. Several months later, we were told about the Specific Carbohydrate Diet. It seemed bogus to us at first - we're totally not the type for fad diets, etc. But as a last resort, my husband tried it and he felt better within a matter of a few days. It's really strict, and it's a lot of work, but I can guarantee you from watching all he's been through that it works. He was on it for about a year, and then slowly started to reintroduce things. We have found his major triggers are alcohol, caffeine, onions, garlic, and spices, so we avoid those completely. He has also found that stress and sleep deprivation causes flares, so he is conscious of that too.
ReplyDeleteAnyway, I don't want to infringe, but thought it may help you out to give the diet a go as well. I don't know if it will work forever, but I can promise you it helped "reset" things in our household. Granted, my husband didn't have as severe a diagnosis as you seem, but the literature I read about this diet really did convince me that there's a science behind it. And each time he has a flare, I make him the famous chicken soup from this diet, and he starts to feel better almost immediately.
If you have a chance, google "specific carbohydrate diet". There's also a wonderful book called "Breaking The Vicious Cycle", written by Elaine Gotschell. She is the founder of this diet. Check out the website (http://www.breakingtheviciouscycle.info) and look at the info there as well. It may inspire you to try it out.
My cousin has Chrohn's/Colitis, which she was diagnosed with at 8 years of age. Her mother put her on this diet, and she was in remission for 2 years. Of course, she's a kid and doesn't understand the importance of sticking with things, so they've had other problems, but that is more related to her rebelling. :)
All the best to you.
I hope this helps.