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Crohn's Disease Forum » Ulcerative Colitis Forum » Just diagnosed, advice needed


03-05-2015, 11:59 AM   #1
GingerGirl
 
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Just diagnosed, advice needed

I just had a colonoscopy and was diagnosed with UC. The doctor prescribed Uceris 9 mg and lialda 1.2 gm x4. He told me to change my diet to cut out fiber, dairy and spicy foods and that was it. I'd really like to know more about what I can do to feel better and manage this. I'm 35 and I've been in pain for months now and I just want to get better and feel normal again. Any advice would be very much appreciated. Thanks!
03-05-2015, 01:35 PM   #2
DJW
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Hi and welcome.
Sorry about your DX. Sending you my support.
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03-05-2015, 02:11 PM   #3
Cross-stitch gal
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Hi and welcome! I know with me, I've learned that any time you can eat dinners freshly made (rather than fast foods or prepared) it's easier on your stomach. Also, beef, steak and fried foods will go right through me. Best meats will be; poultry, fish and pork. It will more than likely be kind of a trial and error for you to find for sure what foods you can tolerate. But, we'll be here for you along the way.
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Last edited by Cross-stitch gal; 03-05-2015 at 02:16 PM. Reason: easier description
03-05-2015, 02:28 PM   #4
FrancisK7
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Hey Ginger Girl!

Welcome to CF! Sorry about your diagnosis. At first it's overwhelming and there's a lot of information to process. The good news is that you found a great forum to get some support, find some answers and ask your questions.

First, the basics.

Ulcerative colitis is an auto-immune disease. Origins are unknown. There appears to be genetic and environmental factors involved. It's a case of your immune system mis-identifying your healthy gut bacterial flora as foreign infectious entities. Because your body keeps attacking the colon in an attempt to get rid of a supposed infection that isn't there, it irritates the bowel continuously. Think of it as your body continually scraping the inside of your colon, or someone who keeps sanding down a piece of wood. Eventually it erodes the surfaces, which creates bleeding and inflammation. That's why ulcerative colitis or Crohn's are called inflammatory diseases. That inflammation is the biggest problem that needs to be addressed.

There are no cure for UC. Your genes are mutated and your immune system is permanently modified. You will carry the disease for the rest of your life, but if the colitis is handled properly, you could live years, even decades, in remission and without any symptom. You will probably need to make some lifestyle changes on top of your treatment to make that happen, but it's doable, many of us have done it. It'll be a challenge for sure, but with a good support system, and a plan, you'll make it.

As far as treatment goes, there are different ones, each on a ladder step. You start at the bottom, and if that one fails, you try the next (better) one until your GI finds one that works for you.

First line of treatment typically used in the US are targeted anti-inflammatory drugs (5-ASA). It's basically aspirin wrapped in a special envelope that is sensitive to digestive enzymes so that the drug is released only once it reaches the bowel. Lots of people rely only on this treatment. It's basically a pill a day for the rest of your life with little side effects.

If 5-ASA don't work or you are allergic, the second line of treatment is immunosuppressive therapy or immunomodulators. They slow down your immune system, trying to confuse it so your colitis goes dormant and into remission. However that means the entire immune system is affected and will be less effective at fighting other (real) infections as well. Some side effects, like pancreatitis, can be extremely serious. In most cases immunotherapy is still one pill a day, but you are more closely followed.

The third line of treatment are biologics such as Remicade. It's basically very low-dose chemotherapy every 8 weeks or so. The aim is the same as the treatment before, to confuse the immune system. It's just a lot more effective. It requires you go to a hospital for your infusion every two months, and it takes a few hours for the entire process. It's cutting edge.

Last but not least there is cannabinoid therapy, specifically a daily intake of a specific dose of CBD and/or THC in mg. It's a lifelong regimen like anything else, but research has indicated it works very well on Crohn's and UC, as well as most inflammatory diseases. Since you are in California this is definitely an option for you. We have a MMJ forum if you want to ask questions there.

Steroids like prednisone are no longer used chronically. They're usually prescribed during agressive flares to give the patient a break and give the healing process a headstart, since steroids are so good at dealing inflammation. But they're damaging over the long run and come with a whole list of nasty side effects (personally they make me go batshit crazy irritated at everybody).

Considering the slew of treatment options available, it's highly unlikely you will not be able to get a handle on this.

The last thing I need to mention is food. Some food can be irritants, and this differs from person to person. But in general, dairy, fiber, greasy or spicy foods can be triggers. Each person is different. I cannot tolerate uncooked veggies when I am flaring, or coffee, but wine is fine, whereas a friend of mine who has Crohn's can't even drink a teaspoon of wine when flaring whereas coffee is fine for him. The best way to track this is with a food journal. For each day, track what you eat, and how many BM you had that day and how you felt (well, bloated, gasey, etc.). Overtime you will create a sample size that is statistically relevant for you, and you'll be able to draw conclusions on which food types you should cut out of your diet either temporarily or forever.

An easy way to understand how food can affect a colitis and the relationship with your disease is to picture a bleeding knee that just scrapped off a street after someone fell whilst rollerblading. Now imagine scraping the wound with sand paper.

The bleeding knee is your intestine when flaring. When you eat food, it's like scraping sand paper on that knee. If on top of this you eat food that is more difficult to digest (like fibers or greasy foods) or an irritant (spices) it's even worse. When I flare I typically adjust my diet until the colitis goes back into remission or symptoms are absent. When I am in actual remission, I eat and drink whatever the hell I want.

I hope this helps!

Last edited by FrancisK7; 03-05-2015 at 11:00 PM.
03-05-2015, 04:48 PM   #5
jwfoise
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Hi GingerGirl.

I've been diagnosed with UC for about 15 years (a pretty moderate level), but I've probably had it much longer than that. Now that I have it managed, my main problem is gas and a flare once in a while.

I'll just add a couple of thoughts to the advice everyone gave so far.

Food is not much of a trigger for me, so as far as my UC is concerned, I don't really restrict foods (my weight and Cholesterol are other issues). My big trigger is stress. As has been suggested, you might want to start a food journal. Once your UC is better controlled, you might start introducing foods back into your diet, one at a time, and see what happens.

In addition to my drugs, I take a pro-biotic. This has helped me a lot. It doesn't do as much as the drugs, but as a supplement to them, it means a flare generally lasts a day or two, not a week or two, and they are much less frequent. I didn't decide to do this on my own, but my doctor and I decided together. I've been taking them for at least 5 years.

You might try yogurt (but it needs to be a live culture type) - it has a lot of those probiotics in there.

Good luck and please ask if you have other questions.
03-07-2015, 11:49 AM   #6
GingerGirl
 
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Thanks so much everyone! Thank you Francis for your scraped knee analogy, that really helped me visualize it better than what I've found on the Internet.

How long does it generally take to get under control? Would I stop taking the Uceris pretty quickly? And then step down on the lialda? Right now it's 4 pills so would I go down to 3? Would I eventually be able to stop taking all the medication?

Anyone else taking these? Did it cause you insomnia? I read that Uceris is supposed to be a lower dose steroid but it's making it harder for me to get to sleep like I did before I started it.

Is VSL#3 the best probiotic to be taking? Does insurance ever cover it? How many pouches over day? I hate the taste of it, can it be taken in a pill form?

Thanks again everyone!
03-07-2015, 02:51 PM   #7
2thFairy
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Lialda is a maintenance drug, so typically you will stay on 4 pills a day and not step down. VSL#3 is a good probiotic. My insurance covered it and I did take it in capsule form. Make sure you keep it refrigerated.

Uceris is a steroid and steroids can cause insomnia. The Lialda shouldn't be contributing to your difficulty sleeping, but everyone is different. Give the Lialda 4-6 weeks for full effect. Hopefully you will see some improvement after a few weeks.
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03-09-2015, 07:50 AM   #8
jwfoise
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Is VSL#3 the best probiotic to be taking? Does insurance ever cover it? How many pouches over day? I hate the taste of it, can it be taken in a pill form?
I take Renew Life Ultimate Flora Senior Formula. It comes in a pill and you take one a day. It works out to little less than $1 a pill. I've never heard of insurance covering it (not mine at least).
03-09-2015, 10:17 AM   #9
2thFairy
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I've never heard of insurance covering it (not mine at least).
VSL#3 was available by prescription only when I took it, which is why my insurance covered it.
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