After two years of UC - history, and advice to others

I was diagnosed 2 1/4 years ago so I have some perspective on UC treatments now I'd like to share. I'm also looking forward to hanging around the list more to get some new ideas!

First tip - move as fast as possible through the medicines. Doctors like to start light and gradually work their way up, so it can take a while. With me, all the 5-ASA drugs (Mesalazine, Colazal, etc) caused bad reactions. I was then afraid to take 6-MP because of the possible bone marrow issues, etc. With 6-MP you first have to take the blood test to be sure its okay to take, and then it take 3-4 months to kick in! So even though I was diagnosed in April of 2007, I did not get the benefits of 6-MP until March of 2008 due to stalling. Which resulted in too much time of unnecessarily high doses of prednisone.

I felt nauseous from 6-MP at first. The key is - take it at night, and then work through it because this feeling will completely go away. The medicine has lowered my while blood cell count significantly - from 8 to 2.5. Since the blood tests say that 4 is low-normal, I was pretty concerned about this, but (so far) I have not even gotten sick more often! Doctor doesn't seem worried either. And there are zero other side effects from the medicine. It has helped me lower my prednisone level from 15 to 7.5. Not a huge difference, you might think, but it does matter long term.

I can't seem to get off prednisone, so I am hoping that I can stay on it indefinitely (or until a better drug comes along) as long as I take all the bmedicines below in my sig to protect my stomach, skin, and bones! I just had an eye exam - no negatives effects such as cataracts.

Second tip - don't try to solve UC with only diet. I was fanatically into this idea at first, researched the best possible foods for UC, and kept to a perfectly healthy and mild diet for four months. No go. A year later I tried the Specific Carbohydrate diet - okay, so I was only on that one for two weeks. Absolute torture. I wasn't sure at the end if I wanted it to work on not. It almost ruined some foods for me that I used to like. Didn't see any improvement in that two weeks anyway.

I did a Humira research study in the first half of this year. Studies are such a pain - the sig flexes, not being able to change your medicine doses, not even knowing if you are on the medicine or not for the first three months. I was so sure it was going to work, but it didn't! Its positive effect was either slight or none.

My father was diagnosed with microscope colitis early this year and was put in Omnicort (the type of steriod that stays mostly in the gut) which worked for him. It supposed to work down to the upper part of the colon, which is where most of my problems are, so I thought it might work for me. No go. It just ended up upper my systemic steroid use which I could have done a lot cheaper with prednisone.

Third tip - if you are one of those people who has a bad reaction to the 5-ASA drugs, they will probably all cause bad reactions. My reaction was so bad with Lialda that even with 40mg of pred I was in the bathroom 3-4 times per day. I tried Colazol and Sulfasalicine. All three, very bad, characterized by yellow water diarrhea.

That's it! I'll answer any questions or comments people have.

Ben

thanks for sharing your story and advice. I have been tolerating 5asas very well but I am scared for the day my Colitis gets too aggressive for 5ASAs. It's good to hear you're doing well.

BenY said...

Second tip - don't try to solve UC with only diet. I was fanatically into this idea at first, researched the best possible foods for UC, and kept to a perfectly healthy and mild diet for four months. No go. A year later I tried the Specific Carbohydrate diet - okay, so I was only on that one for two weeks. Absolute torture. I wasn't sure at the end if I wanted it to work on not. It almost ruined some foods for me that I used to like. Didn't see any improvement in that two weeks anyway.

Ben

While I agree that one should not try to solve UC with only diet, in my experience it was only by changing my diet for a period of time, along with taking natural antifungal supplements, that helped me get well again. Sorry it didn't work for you. I'm interested to know what your healthy and mild diet entailed.

If science-based diet change (like the SCD) could help someone with UC or CD, then 2 weeks is not enough time to decide it doesn't work. As well, one will often feel worse when starting this diet, as I did when I started my antifungal diet. It is the body's reaction to the massive killing of microorganisms (yeast/fungi) and the resulting sudden load of toxins released into the blood stream.

Many of the drugs either did not work for me either, or stopped working after a period of time. My doctor(s) only ever kept insisting on trying the next 'new' drug, never suggesting that what I was eating (or should be eliminating) could be a factor in my symptoms. Actually, any time I brought it up, I was quickly chided for making such a remark. After deciding on my own to experiment with it anyway, I knew I would never go back to my GI again when he told me my getting well was only a coincidence... had nothing to do with changing my diet, and when he tore off yet another prescription from his pad as I headed out the door, saying I would probably have to be taking drugs for the rest of my life.

I don't know that SCD or other similar antifungal diets could help everyone with UC or CD symptoms, but for me, I decided that I needed to take my health into my own hands, and at least experiment with it. While doctors are necessary, they don't provide you with an exit strategy. They only continue to pass out prescriptions.

BenY said...
I felt nauseous from 6-MP at first. The key is - take it at night, and then work through it because this feeling will completely go away. The medicine has lowered my while blood cell count significantly - from 8 to 2.5. Since the blood tests say that 4 is low-normal, I was pretty concerned about this, but (so far) I have not even gotten sick more often! Doctor doesn't seem worried either. And there are zero other side effects from the medicine. It has helped me lower my prednisone level from 15 to 7.5. Not a huge difference, you might think, but it does matter long term.

I've never taken 6-MP; so I don't know what's normal when it comes to this drug. However, a drop in white blood cell count from 8 to 2.5 sounds a bit scary to me. Plus you have only been able to decrease your prednisone dosage from 15 to 7.5 mgs. That's not much. Perhaps others on this forum can provide some advise on whether or not you need to be concerned about such a drop in white blood cell count.

Subdued - for long term use, moving from 15mg of pred to 7.5 is a big difference. I was very concerned about being on Humira, 6MP, and pred all at the same time (that's a lot of immune-suppressing!) but I did not get sick, at least during those few months.

There is a trade-off with prednisone use that I would imagine a lot of us face. If I did not take it, my life would be hell. I am instead choosing to take it with its risks to then leave basically a normal life (1-2 bowel movements per day, though not much form and blood sometimes). Of course I would certainly like to *get off it*, but not at the current "cost" to my quality of life. I'd be *real* concerned if I was stuck at 40mg, but 7.5mg a low dose.

My diet was basically what you said, subdued. I scoured the web for the best foods to eat for colitis and then stuck with it religiously. On business luncheons I would sometimes being a cooler of pre-packed food into the restaurant with me! I'm not saying that some diet out there might not do the trick, but I gave it my best shot at the time and it didn't work. I even wondered whether a super-healthy diet was counter-productive - maybe it was just pumping up my immune system when it was in fact already overactive!

kim123 - I know what you mean about GIs. They just move up their list of drugs. However, I have become more convinced about the usefulness of drugs over time.

Ben

My advice to others would be to go what works for you.  Medications just did not cut it for me, and the "big guns" were supposed to do the trick.  I opted to use diet to change my life and get me into remission.

The SCD is very difficult to adhere to, and I know that from personal experience.  Restaurants and grocery stores often don't cater to our population, hence they are many land mines to navigate around.  After being on a cruise ship for the past week, I avoided all the no-no foods and still ended up with diarrhea and bleeding like I always remembered.  Plus it was torture to watch people around me eating everything I used to eat.  Anyways, back to the diet at 100%.  Gotta get into remission before I start working!

 

It's an idea - surgery, and get off all these medicines. However, choosing to having to start going the in the bathroom 10X per day is a tough one even though it might prolong my life. I actually may need surgery in 10 years anyway if any sign of colon cancer comes up.

I guess my current plan is to "tread water" under a new medicine comes out that works for me, or until I find some other solution (perhaps from this list!) that works.

Strange, for me the only thing that works is diet modification. SCD didn't do much for me until I eliminated the fruits and other carb sources (basically going on the induction phase of Atkins). Since then I've been mostly symptom free for months. If I cheat and have a little fruit I'm in the bathroom with blood within 12 hours, but I get back to normal within 2 days of my normal very-low-carb diet. 5+ years ago I was on 60mg of prednisone and other drugs with no impact, which is when I first found the diet link.

I still think I must have something other than UC since it is so diet dependent, but all the G.I. docs ignore me when I make this suggestion.

No surgary, no drugs, no doctors. I had colitis for 20 years and have been free for 1 1/2 years - not a remission, but I am confident a cure.

Eat only real food - it does not matter if it is spricy or fatty or acidic, etc. Just be sure that it is whole and real. No processed foods or chemical foods. Eat produce, dairy, meat, and whole grains. Take high-quality supplements. Stay away from doctors and drugs - they does more harm than good.

Get some good quality probiotics. Throw water, a pear, and an apples, with the peels, in the blender every morning.

Good luck.

Basilpuppy- Do you eat bread? I agree that eating whole, natural foods is a good idea. Generally, I always feel so much better when I veer away from any processed, packaged foods, especially bread. Not easy to do, however, as those foods are so much easier and convenient to have around. Unfortunately, not everyone can stop the drugs and doctor visits. I hope you have continued good health.

I also have been trying to eat as natural as possible. And I often pick organic food over non-organic, especially when it comes to meat. I try to eat only meat that does not contain antibiotics. I rarely eat out anymore, and when I do, I definitely stay away fast food, which almost always contains HFCS. My boyfriend loves making bread. I usually eat that or freshly made bread at Whole Foods.

Anyway, I've found that diet has been a big help in getting me into remission. I got my first flare after being a chocoholic. I was eating only chocolate and drinking beverages containing HFCS. I used to love those commercials that said chocolate was good for the health. However, seeing blood was so scary that I stopped eating chocolate and drinking those beverages and started eating fiber, which I hadn't been eating in years. My colon gradually got stronger, and I stopped bleeding. However, I still didn't know that I was fructose intolerant or about anti-inflammatory and pro-inflammatory foods. And I started drinking a lot of juice instead of the HFCS beverages. It wasn't until my third flare that I found out that I can't drink juice.

Actually, having cravings of breads, pasta, sweets, potatoes, etc. can be an indicator of an internal fungus or yeast condition. Fungus is a parasite that thrives on high carb foods.

I like "treading water" as Ben does. I hope the doctor will approve of me staying on small doses of prednisone if I don't get rid of the bleeding soon. How long after stopping prednisone should I be feeling more normal? Anyone know? I am waking up again with sweating, nausea, headache, etc. Left-sided colon tender but no pain. Stools about normal except for little blood. Rectal meds are working I am sure but not very fast. Glad I am off 6 MP however!
ElaineNY