Intro:
I’m a 51 year old woman who works out with a trainer, eats healthy and takes long walks. I love dogs and currently have 5. They are all pound puppies. My oldest is 17 years, when he arrived, he was a year old and weighed 17lbs. He lived most of his life at 42 lbs. He will be missed. It is amazing what love and good food can do for any mammal including humans!
Some more about Lilly:
I was born in NYC but have lived in the southwest for most of life. I’ve traveled throughout the country and the world. My world view is simple – if you eat at another’s table and they are kind people – you learn that they are your sisters and brothers and take joy.
Food is now an issue and causes my heart much grief. I don’t want to define myself by this disease – but it seems like I can no longer travel and eat randomly
Symptoms:
Diagnosed – April 29, 2015
Symptoms – massive amounts of blood, mucous, runny poop and gas
constant urge to go to the bathroom – flares every 6 weeks
Canasa, homemade kefir and food change are helping with blood & mucous.
Lilly’s Story:
I have gotten conflicting information by doctors (GI and Proctologist)
I read a ‘rant’ from 2012 that states Canasa can cause poor appetite.
I have lost 20lbs – the Doc said “I have no idea why you have lost this weight.” Are UC’ers more knowledgeable than the physicians????
I can’t get straight answers – a. don’t eat nuts & seeds b. eat whatever you want –
keep taking the Canasa –
There seems to be no end in sight!!!!!!!!!!!!!!!!!!!!!!!!!!
I’m NOT a medicine taker! Arrrrrrgggggghhhhh
Is the Canasa 4-ever? Because Canasa said they have no information past 6 weeks. If it fixes ‘flare-ups’ shouldn’t one stop after a period of time?
My main concern is not getting bloated which seems to happening weekly. And it’s horrible and degrading to constantly give oneself an enema. It seems like the idea is “get used it.”
Why is there so little information coming from the medical community? Why do they act like it’s no big deal? This UC is life changing! I went on vacation and had a flare up. What the H. E. double hockey sticks!!!
How long do people take Canasa? How long does it work? Do you just keep taking it until the next flare up? I do NOT understand and it seems like the 2nd doctor asked me lots of questions, took my blood, and sent me away. Where are the answers? From each other?
How do people control their flare-ups? What seems to work best? This is debilitating, humiliating and I’m exhausted every day.
What do people do when they get sick? I can’t take pills. I get a flare-up. Are there any doctors out there who provide answers without the lip service? How do you know if that’s the only thing going on? Why does all my poop stay shoved up next to my stomach and not come down and out? Supposedly, UC is in the lower colon -so why am I have trouble with upper? I don’t get it?
Very very very frustrated
Her Ideas on What’s She’s Doing To Treat the Colitis…
I have no idea what works. I currently eat a lot of salmon, avocado, kefir, eggs, steamed vegetables, rice, beans, nuts, bananas, apples, blueberries, melon, peaches and cheese. I no longer drink coffee but I do drink Coca-Cola with real sugar (it’s bottled in Mexico). I don’t eat chili or salsa, corn, wheat or eat food from restaurants that touch the grill because the oil used is too hard on my stomach. It gives me pain. I’ve learned that some places rinse their lettuce in chemicals to preserve freshness – also bad for me.
Homemade Kefir is tart but can be sweetened with a bit of honey and cinnamon and vanilla. Kefir grains feed on the lactose and infuse the milk with tons of live probiotics which are excellent for the gut. They sell shots at Whole Foods for $5 a piece. I drink about 6 oz a day for the price of a cup of organic low fat or fat free milk. It’s a bit tart but also a natural anti-inflammatory. Kefir grains grow, so once you start a batch, you can share with your friends.
written by Lilly D
submitted in the colitis venting area
I’m a 51 year old woman who works out with a trainer, eats healthy and takes long walks. I love dogs and currently have 5. They are all pound puppies.
Hi Lilly,
I love your post! You sound as frustrated as we all feel when diagnosed with UC.
No, the drugs are NOT forever…at least they do not have to be. I was on asacol for 15 years (and the dioc said possibly forever) before I got brave enough to say ‘no more’! It made me nauseated and gave me all sorts of other bad side effects while I was on it. I figured that was no way to live. There was no enjoyment in my life then. Damned meds…
Fast forward to now…6 years med free…on a good probiotic and fermented L-glutamine and THAT’S IT!! No more meds.
It is possible…it can be done, It takes time to get these things into your system. It took well over a year to finally see NO blood.
I am happy…I am free!! It is possible.
Shelly has recently found a good product…INTESINAL RESTORE, I think it’s called. Look into that.
Cheers and welcome to the site:)
Hi, Lilly —
I’m so sorry to hear about your diagnosis. I’m sure you’ll find Adam’s website to be a great resource for you. I was diagnosed in March, 2014 at age 64, but I’m sure I’ve had UC much of my life. It’s so hard, especially in the beginning, to find the right doctor, but you must keep trying. I went through four before finding one I really connect with, and I’m also in a great regional support group sponsored by the CCFA. As to your specific questions about food and medications, well, that will probably be a lot of trial and error on your part. It seems everyone is different and needs to find their own best solutions. Sadly, this disease does not go away, but it can be managed. I have been using the Canasa suppositories for over a year, and my GI encourages me to continue using them. My disease is also sigmoid/rectum, and at first I wasn’t sure the Canasa was helping, but now I feel that it’s doing the most good at keeping things under control. I also take Lialda, one of the mesalamines. There are several (I think 9?) formulations of this drug, and some work better than others, depending on your own system. I would not rule them out, even tho they are pills. Taking Kefit and probiotics is an excellent idea, but don’t work for everyone. And the SCD diet is also a great thing to try, but it is quite limiting. I find I can not adhere to it, but others have had great success. Your doctors may also talk about using biologics, such as Humira or Remicade. I have chosen not to do that, but a small subset of patients has had limited success with them.
The first six months after my diagnosis I was so fatigued I couldn’t get off the sofa for several weeks. My PCP recommended Emergen-C twice a day and that made a huge difference in my energy level. I guess my best advice would be to try to be patient and give yourself the time to understand this disease, find a great GI doctor you can communicate with, and know that things WILL get better.
Lilly, learn as much as you can about the disease. It’s very frustrating not to have a cure or a solution for all of us. Depressing even. Think about reading results of studies and research. Consider joining a support group of the CCFA if there is one in your area. It’s an awful yucky disease and you have to do your best, despite likes and dislikes, to work to manage it. Good luck to you. Sorry that you have it—that we all have it, too.
Hi, Lilly,
I’ve been making my own kefir for over a year now. My last real bad flare was in May 2014. I was so sick it was unbelievable that it was just the colitis causing it. When I finally made it into the GI, they do what they do and check for bad bacteria. I didn’t have any and never have except maybe too much yeast in my gut. I drink 2 cups of homemade kefir every day with my supplements. I make a smoothie with it and add a banana and frozen blueberries or whatever fruit is available. I also add a fiber powder and fresh ginger. I’ve recently traded some kefir grains for scoby to make my own kombucha, another great source of probiotics. It sure is cheaper than buying it, plus I love it! I sweeten my kefir with stevia but sometimes use coconut sugar. Unfortunately, drinking coke is not good for colitis. As you go as you’ll know what’s good and what isn’t but generally for all of us, alcohol, caffeine, junk food, and gluten are bad for people with colitis. I’m fortunate that I can handle dairy products. I had my DNA tested through 23andme and it showed I had no problems with dairy so therefore I use dairy! Also, interestingly enough, my DNA never showed any markers for colitis or the other auto-immune diseases I have. I believe mine were caused from eating gluten like forever! It was only 6 years ago I realized I was gluten intolerant so the good news just keeps piling on! As time goes by, you get to know what you can tolerate and what you can’t and what meds work and which ones don’t. I’m currently using Canasa on a regular basis and am also in a flair but it’s mild compared to flairs in the past. I hate having to take any meds for my colitis but I do what I have to to get over this! I’m currently taking sulfasalazine and Budesonide, a steroid that doesn’t have the side effects of prednisone. I will never take prednisone again! I’m really sorry for what you’re going through. It’s frustrating dealing with GE’s because they think they know all the answers but they don’t. They don’t believe diet plays a role either. I’m on my 4th GE and at least he believes me when I tell him about a med that causes bad side effects and he prescribes me what I know to help me. Oh, yes, another thing that causes me grief is chocolate when I’m flaring. When I’m not flaring, I eat things a little differently and maybe have a glass of wine on occasion or a gluten-free beer. Best of luck to you!
Hi Lilly,
Welcome to the world of UC. I was diagnosed 5 1/2 years ago and at times its been hell. I have never taken medication and chose to deal with the condition through strict diet. Like you I was living a pretty healthy life at the time I was diagnosed. Back then it was bloody diarrhea and the first flare up lasted only a week. At that point I gave up gluten and dairy and was able to keep healthy for 2 years. I had introduced bread into my diet and after 2 months I had a flareup which lasted 2 months and it was extremely painful. I was going to the bathroom between 30 -40 times a day and lost 30+ lbs. But I hired a health coach and went off bread again. I started taking supplements especially magnesium, potassium, and vitamin D. I started making my own homemade yogurt as it has a much higher number of good bacteria than the store bought stuff. I drank mostly green juices. I regained my strength and was symptoms free until this past March. I was on a trip and the change in diet triggered a flare-up. I quickly went back to my juices and yogurt and in 2 weeks was good to go again. Don’t waste your time asking doctors what you should eat. They do not study nutrition. They only know drugs. If you want info you might consider a seeing a holistic naturopath who ca guide you on your diet and supplements. I became a integrated health coach after my experience and work with many clients with UC. You can visit my page on Facebook its called Menu to Health. I do sessions over the phone. Leave me a message if you’re interested in my services. I wish you the best on this journey.
Luz