My name is Kim and I am 44 years old. I was diagnosed with UC in 2008. I am a married mother of 3 wonderful kids, ages 10, 13 and 15.
Some more about me:
I have always been very active especially when it comes to doing things with my children. We love to swim, hike, bike, play sports, and just hang out. I grew up by Lake Powell and have always enjoyed water sports. I love watching my sons play sports and my daughter’s performances. My oldest son plays high school baseball and golf. My middle son plays basketball and tennis and my daughter is an entertainer. She does theater, sings and dances.
I currently am in a major flare. I have 20+ bloody stools per day. At least once a day, usually more, I don’t make it to the bathroom. I have had lots of cramping, pressure, and urgency in the last few months. I am having lots of trouble sleeping because I am up all night going to the bathroom.
I was diagnosed with UC in June 2008 after a year of being scared to death by my symptoms and not wanting to have a colonoscopy. It has been a horrible 6 years that has robbed me of time with my children and feeling good. In this time, both my parents have passed away which I know has produced lots of added stress as well.
I am currently taking 60 mg of Prednisone and 6 – 800 mg Asacol HD per day. I have pretty much been on Asacol or some other type of mesalamine for the last 6 years. I have been on and off Prednisone for the last 6 years as well. Currently I have been on Prednisone since August 2013 when I had another flare. They had me on 80 mg per day and I was slowly tapering off and down to 10 mg per day in December 2013 when I flared again. Three weeks ago, they put me back on 40 mg a day, but so far I have not seen any improvement.
I, like so many others, have tried everything from antibiotics, to Apriso and other mesalamines, to enemas, to Remicaid. I had many horrible side effects from Remicaid and stopped taking it after my third infusion in January 2013. I had itching, cramping, hair loss, dizziness, no energy, no appetite and memory loss to name a few. They put me on Remicaid after I spent 12 days in the hospital in December 2012 with a major flare up. They told me that I almost lost my colon. I was just having minor UC symptoms after being hospitalized until my Mom died tragically in April 2013 and it sent me back into a major flare up.
My GI doctor wants me to start Humira ASAP, but I am scared to death of the side of effects of it and all the other drugs that I have been on and am currently taking. I read a post from Graham about Asacol causing strokes and that really concerns me because I am dizzy a lot. I am also concerned about being on Prednisone and the side effects, but it seems to usually help my flares, but not so much this time. It makes me angry that I have been on these medications for 6 years, and my GI doctor has not mentioned that I should be taking folic acid with Asacol.
I just joined Adam’s site a few days ago and bought Renew Life’s Ultimate Flora Critical Care 50 billion Probiotic yesterday and took my first one a few hours ago. I am praying that it helps me get over this flare.
I am going to start the SCD today as well. I am hoping that between the diet change and the Ultimate Flora probiotic, that I can start feeling better, start having normal bowel movements and get off ALL prescription medication. I just really want my life back. I want to be able to leave the house without wondering if I am going to have an accident and where a bathroom is. I am tired of missing my kid’s activities because I am afraid of having an accident in public.
I could really use some encouragement and advice from those that have been there. For me, surgery is my LAST option. I don’t want to have my colon removed. My last colonoscopy in December 2013 showed that I had several polyps and I am scared to death they will lead to colon cancer.
It is nice to know that I am not alone and there are others who are battling this horrible disease as well! Thank you!
written by Kim H
submitted in the colitis venting area
“HI Adam! I have started probiotics and will start the SCD today. Should I continue taking my prednisone and Asacol for now? I desperately want to get off them. My GI doctor’s only remedy is medication. He doesn’t think diet effects UC. I am so relieved I found your site, Adam!! Thank you!!”
Just like probably every other person who is reading this story, I’m super sorry to hear what you’ve been going through with so little relief for so long up to this point. The crazy part to me is how your diagnosis was the same year as mine in 2008, yet you’re still having trouble getting things under control. But…I think things are going to change for you.
As you may know, I myself don’t take probiotics in pill form, but I do get what I need from things like sauerkraut which is a pretty sweet(or should I say sour) source of them. But, on the same note, there are a CRAPLOAD of UC’ers here who do use probiotics, many who rave about them, and many who use the exact same one you mentioned in your story.
But you’ve got another more important question in my opinion. And that is about continuing to take your medications. This, you HAVE TO CONSULT with your GI about. No question about it. And I know you’re probably thinking…”Geeze Adam…my GI only believes in medications working for UC…I want to get off them…what the hell???”. I get it. And I hear you loud and clear. Especially since you had some negative side effects that I also had from biologics back when I was taking them years ago. But, you need to be very careful. Especially with regards to Prednisone.
Prednisone can be a great medication for temporarily treating out of control UC symptoms or a stubborn flare, but it’s not something to be playing around with or starting and stopping without the guidance of a doctor you trust. There can be SERIOUS consequences of stopping prednisone abrubtly without a proper tappering session. I’m guessing your GI has talked to you about this before, and if not, GET A NEW GI.
Actually, I would highly recommend you find a new GI doctor no matter what. I did this at one point in my UC career, and it was one of my best UC decisions ever. You obviously are at odds with your current GI, you’re hoping to get off Meds, the GI wants you to try every single one approved for UC… That’s usually not a win win situation.
So, if I was you, this is what I’d do:
- Sit back for a few minutes in a chair, and say out loud to yourself “I’m going to finally get better!” (Heck, wake the neighbors up)
- Start looking for a new GI doctor to begin working with (I wrote a post and there’s a link within this one about my meetings with my current GI doc: https://www.ihaveuc.com/what-my-gastro-doctor-told-me/)
- Make sure this doctor is cool with you being interested in alternatives to Medications. He/she doesn’t have to believe fully in that, but as long as he/she will support you and your thinking/desires…that’s KEY!
- Continue on with the SCD diet and probiotics. My diet changes have worked wonders for me, I’m able to live the life I want, the way I want (minus getting wasted and abusing alcohol which I barely even miss anymore..)
I hope this gives you some ideas Kim, and I wish you and your family the very best,