Hi. My name is Margaux, and I do not have ulcerative colitis, but I live with some one who does. I see on a day to day basis the struggle that he does through, and I’m looking for ways to help him win the battle with UC:)
I Live with Someone who has Ulcerative Colitis:
I’m so excited that I have found this website, as I have so many questions. As I’ve read through various blogs, it amazes me how many different variations of medications are prescribed for this disease, and also how many ways it is treated. I, myself, am not battling the UC fight, but the love of my life has been for 3 years now. Ulcerative colitis hit him hard when he was 23. He was having bloody diarrhea, and went to the emergency room. When he went, they told him that it was just a stomach bug, and it would pass. One week later, he is still having the cramping and bloody diarrhea. He went to another ER who told him to go see a specialist. Another week goes by and he now can not eat because he is throwing all of his food up. By this point, he dropped from 195 to 165 in this 3 week span.
Finally, he was scheduled for a colonoscopy and diagnosed with severe ulcerative colitis. The doctor told him that if he had not been diagnosed then, and more time had passed, that he would’ve had to have some of his intestines removed. James was put on prednisone and asacol.
The details before remicade are a bit fuzzy to me
because he shielded me from a lot of this, and still does.
When his test results for liver levels and blood cell levels come back, he won’t tell me about them being low until his results get better. He knows I worry a lot about him. Any way, he has been on a variety of pills, mainly prednisone, asacol, and immuran. Currently, he is on remicade, asacol, and immuran. The remicade has gotten quite expensive, and it’s still not fully working. He has, on a good day, 3-4 bowel movements a day. But there are at least 2 or 3 days a week that he is in and out of the bathroom. His stools are still not solid, from what he tells me, they are not diarrhea status either. They kind of disintegrate once they reach the water in the toilet..if that makes any sense? I’ve never personally seen it, but we are very open about poop in our household.
He has not had a solid poop since he was first initially diagnosed.
Recently, we were blessed with our first son. Since then, our priorities have shifted dramatically. He was decided to go back to school. He had to drop out while working on his bachelor’s degree in criminal justice since he was not able to drive to school. His career goals have changed though from his fear of not being able to be the state trooper that he wanted to be because of “his problem,” as he calls it. He wants to be able to travel and not worry about going to the park. His biggest fear is to have to tell his son, no I can’t go to the park today, Daddy doesn’t feel good. He does not want to miss a minute of our son’s life, not to mention that Remicade bill HURTS.
For the past few months, I have been determined to find something else to help him. I feel as if he does not have as severe of a case as others that I have read on the site, but then again, I do not know. I am a firm believer that diet can change everything, and started looking into this. James grew up in a big family, who liked their frozen meals and all those fun preservatives that come with it. His mom didn’t cook often. He also eats a lot of fast food, since his mother did not cook. I finally stumbled upon the SCD diet, and convinced him that we should give this a try. I say we, because I will be doing the cooking for him, and diets are always easier with a buddy. We are both very optimistic about the diet, but planned on starting after the New Year. I found this diet at the beginning of December, and it made no sense to jump into such a strict diet right around the holidays.
So, I’ve bought the book and started reading it, started planning things. I am a pretty good cook, at least I’ve been told, so making a new menu isn’t going to be too hard. What will be hard is when I’ve had a long day at work and just want to have pizza night instead of cooking. What will also be hard is making homemade mayo, ketchup, and yogurt. I know we will both miss our desserts and ice cream. We are HUGE ice cream eaters. It’s also going to be challenging to make sure he brings something to work.
So here are a few questions I have for everyone and anyone who is on this diet:
1. Tips on making the yogurt.
2. What do you bring to work for lunch?
3. How long does the yogurt stay in the fridge?
4. How does the homemade mayo and ketchup taste? How long does that stay good for?
5. Any tips for the first “cleansing” week of the diet.
6. Do you get to the point where you have normal, solid poop like I have? And where it’s only once a day?
I think this is all I can come up with right now. Looking forward to any answers, tips, suggestions. My ultimate goal is for James to feel comfortable going out of the house again, and to live a fulfilling life.
Thanks for reading!
written by Margaux
submit your story in the Colitis Venting Area