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New to the UC situation - trying to make sense of things

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Posted 1/6/2018 5:33 PM (GMT 0)
Hi - I'm a 67 year-old white male in the US, reasonably good health, diagnosed 6 months ago with a mild case of left side UC by my Gastroenterologist after a colonoscopy because of blood in my morning stools. He prescribed Lialda, starting with 4 a day and as the symptoms got under control, decreasing the dose to three a day, then two a day. I got down to two a day but eventually the symptoms returned so we've been trying a higher dosage level. The doctor was kind enough to give me PLENTY of Lialda samples so I never had to buy the meds, but eventually the Doc ran out of samples, and trying to save a few bucks (the Lialda is REALLY expensive) I got him to give me a prescription for Mesalazine which I had filled from a Canadian pharmacy. The Mesalazine didn't seem to do the trick, so when it ran out, I got a script from my Doc for Lialda, and had that filled by the Canadian pharmacy - it was actually filled by a pharmacy in the UK with Mezavant XL (they told me it's the UK name for Lialda), which I've been taking four a day for a couple of weeks - symptoms have mitigated.

Obviously, I'd like wean off the Mezavant XL \ Lialda and see the symptoms stay away, but as of now I'm still on four a day - I need to follow up with the doctor on Monday to see what he says.

I'm wondering about some of the other meds I'm taking and my eating habits and such and how that'd impact my UC.

I had some kinda virus with nasal \ sinus congestion and the walk-in clinic prescribed three 20 MG Prednisone a day for five days, so I'm wondering if it was the Prednisone that mitigated the UC symptoms, or the four a day Lialda / Mezavant XL?

I'm also wondering about how my eating habits might affect the UC. My doctor tells me that it's an auto-immune issue and that diet really doesn't have a lot of impact, aside from how dietary practices generally impact health and well-being. I'm not eating any fried foods or spicy stuff or "bad" stuff, and I've read so much different advice about veggies and dairy and meat and such with this UC stuff that my head is spinning.

I'm also wondering about supplemental fiber - I take some fiber supplement fiber powder (dextrin) in my morning coffee and again with a large glass of water when I take my regular meds in the evening (lisinopril and amlodipine for blood pressure, statin for cholesterol, omeprazole for acid reflux). SO, now I'm wondering if it's the fiber that's firming up my stools or if it's the Lialda \ Mezavant XL that's responsible for better stools. I had loose, watery stools before going back to four a day Lialda, but I had also cut back on the fiber during that time, so I'm not sure if it's the resumption of taking fiber or the resumption of taking Lialda \ Mezavant XL that's improved the stool consistency. It seems like firmer stools would cause less inflammation, but that's just a feeling not backed by any medical advice I've received.

Any questions for me?? What are thoughts, suggestions, recommendations??

Thanks very much !!!
Posted 1/6/2018 7:38 PM (GMT 0)
My doctor tells me that it's an auto-immune issue and that diet really doesn't have a lot of impact

It wasn't very long ago when most doctors said don't bother with probiotics, but look at all the UCers who are now helped by taking probiotics. Many members here swear food has no effect but many others including myself believe diet is crucial for maintaining remission. I can see UC symptoms creep in almost immediately after eating something bad.

The SCD (Specific Carbohydrate Diet) is about the most popular diet for UC. But I don't follow official diets such as SCD, 'low residue', or Paleo etc. Many foods that are 'legal' under SCD such as cruciferious veggies and shellfish cause problems for me. And many foods that are SCD 'illegal' such as corn and dairy don't give me any problems.

I prefer keeping a food diary to isolate foods that trigger symptoms. Two very common problem foods are gluten (wheat) and dairy but any food can turn out to be a problem. For example I can eat dairy but not shellfish. I suggest avoiding gluten for 2-3 weeks to see if your symptoms lessen. Then try the same for dairy. IMO much of the success attributed to the SCD is because it is an anti-gluten diet and gluten is a very common trigger.

Many including myself feel that soluble fiber such as psyllium is very helpful (see my signature). Insoluble fiber found in whole grains can irritate the colons of some people. I don't know much about dextrin but if it is related to maltodextrin then I would stay away from it. Maltodextrin can aggravate UC symptoms.

BTW it is always a good idea to stay on a relatively mild med such as Lialda to remain in remission even after the flare has ended.
Posted 1/6/2018 8:45 PM (GMT 0)
PROBIOTICS!! Keifer seems to help me the most. They won't cure it, but they do help a lot...especially after taking any antibiotics. Best of luck with this 'crappy' illness.
Posted 1/6/2018 9:37 PM (GMT 0)
What to expect from uc? Expect unpredictability, a lot of trial-and-error, and for you to respond differently than others with a uc. Expect no guarantees in what will or will not work. Expect a maintenance medication for life.
Posted 1/6/2018 10:38 PM (GMT 0)
Thanks for the feedback so far - keep it coming. I'm learning that there are many different UC situations and what works for some causes problems with others - in addition to a maintenance medication for life, are there any things common to at least a large majority of people dealing with UC ?

One thing I think I'm gonna change immediately is the type of fiber I'm taking - dextrin - I read that "Psyllium and wheat dextrin have more in common than the differences that set them apart. Even though their sources vary, psyllium and wheat dextrin are soluble fibers, which are commonly sold as over-the-counter laxatives. Both are generally safe, but wheat dextrin contains a small amount of gluten" - so, given that it appears that less or no gluten should be better for me, maybe switching over to psyllium from dextrin, which contains gluten, can't be a bad thing.

Then again, I did have the doctor run some labs for gluten sensitivity, and nothing significant showed up, so maybe the small amount of wheat in the dextrin isn't a big deal for me ??

Any other thoughts??

Post Edited (texas_yankee) : 1/6/2018 3:41:50 PM (GMT-7)

Posted 1/6/2018 11:26 PM (GMT 0)
the best source of information is what you get from your own body and experiences -

try things with an open mind based on recommendations and suggestions you read on this forum -

as far as the wheat/gluten thing, give it up for a month and see what happens - and understand with many things there are allergic type reactions(i.e., immediate) and sensitivity(over a period of time) reactions - your body may be subject to both (or neither one)
Posted 1/7/2018 3:52 AM (GMT 0)
Here's a great UC diet overview I found a few days ago:

/www.dietvsdisease.org/ulcerative-colitis-diet/

Also, nobody wants to take medications everyday, but the Lialda/mesalamine is meant to be taken as a maintenance medication, as in, forever. You'll be better off in the long run.
Posted 1/7/2018 1:20 PM (GMT 0)
Fiber supplements at times help me and at times hurt me. When we're flaring badly (or intestines become small inside diameter, raw and bleeding) then bulking/abrasive fiber causes a lot of discomfort. When i have mild inflammation, fiber can firm things up a bit, slightly reduce bm frequency and urgency. When I'm in a remission then fiber supplementation is unneeded.

Uc can cause great bathroom anxiety, cause accidents in your pants, depression (especially when we're struggling in a flare and nothing is working), and can hit us in various other emotional/psychological ways that our gasteroenterologist doesn't treat. Crohnic illness can be socially isolating and a real witch with a capital "B" sometimes. We're on "cloud 9" when in remission and doing well, feeling great, and essentially normal. Were on the "seventh level of hell" in pure agony, nearly incontent, and housebound when flaring severely. It's a rollercoaster ride full of extremes, of superlatives.

The longer you live with UC the more you get to "know your enemy", what to expect from it, when to expect it, and early warning signs of trouble and appropriate actions.

No-one can worry about uc 24/7 and expect to remain sane. So, do find healthy escapes: hobbies, delve deeply into books/music/whatever you enjoy, practice yoga/mindfullness/meditation or anything that's calm/relaxing.

In the end we all live mostly normal lives, have families, careers, and enjoy hobbies and things we do love. Those darn flares will popup from time-to-time and you do whatever you can to make flares as brief, mild, and infrequent as humanly possible. Things like finding your treatment that produces a deep/quinescent remission, keeping up your maintenance treatment (usually a medication and possibly some alternatives as well) when you feel well, avoiding triggers (for those of us who know what triggers worsening of our symptoms like stress or specific foods), reacting promptly when we start regressing and see early flare symptoms, etc!

We must become our own best advocates for what we need to be well, and press doctors who poo poo our concerns.
Posted 1/8/2018 2:14 PM (GMT 0)
Thanks again for all the guidance so far. I'm wondering about two things this morning:

I had my regular GP doctor run a Celiac panel blood test - I have to have regular blood tests to monitor my cholesterol and thyroid function and stuff like that - everything on the celiac panel came back as negative - no antibody detected - does that mean that I absolutely don't have any issues relative to gluten sensitivity?

Also, my Gastro doctor is pretty much a traditional MD medicine guy - when I asked him about any dietary changes I should make when the UC first showed up, he told me that there's not really any dietary issues that affect the UC, that it's an auto-immune problem and aside from a generally healthy diet because, outside of UC, a generally healthy diet is better than a generally unhealthy diet, there's really nothing specific to UC that I should or shouldn't eat to make it better. I'm getting gentle urging from well-meaning people around me to avoid a whole lot of different foods - stuff that's generally accepted as NOT being good for general stomach \ intestine health (stuff like fried foods, alcohol, spicy \ hot foods), but I haven't heard from my doctor nor am I convinced that it's as simple as "avoid a long list of certain foods and eat only white rice and water" and all of my UC problems will be mitigated.
Posted 1/8/2018 3:29 PM (GMT 0)
We have higher odds of having non-celiac-gluten-intolerances, and dairy-intolerances than the general population (no guarantee of having those issues by any means). You could still have issues with them, despite a negative celiac test. It's easy enough to skip lactose and gluten for a month as a test and see if it helps you or not. I found no benefit from eliminating those from my diet, and still enjoy dairy and gluten daily.

The majority of gasteroenteroligists will say there is no connection between diet and UC symptoms. Why? Currently there are no diets studied in great depth (large scale, long term studies that are placebo-controlled, results duplicated by peers, etc.) and officially approved for the treatment of UC, and until their are don't expect a gasteroenteroligist to say they help. Anecdotally, some of us here have noticed benefits of various diets. Diets, like everything UC-related is hit-or-miss, and results vary wildly person-to-person. I saw no benefit from experimentation with various diets, others swear by them, and that's just UC wrapped up neatly within a nutshell.

Uniform Charlie had posted a really good review of what's currently known about IBD/UC and diets, and looks at the scientific research available to date on it. Give it a read, link repeated below.
/www.dietvsdisease.org/ulcerative-colitis-diet/

If you are so inclined, you can try one or more of the various diets for UC. They are generally do-no-harm and have a chance of helping. Give the change about a month, but expect results at the end. Keep it if you get results, otherwise discontinue. Possible it could help, and equally possible it might not help. I'd just create a list of plausible things that could help that you are amiable to try, just in case you need them. UC is for life, so you have lots of time to experiment and see what helps you. Lots of trial-and-error, and many of us have been at that for years...
Posted 1/8/2018 3:48 PM (GMT 0)
I would suggest staying on Lialda if it is working. It is the safest UC medication. You can always make diet modifications and reduce it but don't stop it.

I follow Danielle Walker. She has UC and has website and lots of book on paleo diet. When ever I see on Today's show or live on facebook, I feel like I am not trying enough to do this natural way. But even she is on mesalamine along with her diet franchise.
Posted 1/8/2018 5:21 PM (GMT 0)
I pretty much tried every IBD diet out there for about a year and they did not end my flare. However I do think they helped me as I do believe some foods can irritate an irritated, inflamed colon even more. Now that I'm eating more normally I notice a difference when I eat too much wheat or sugar or dairy. I heard the other day somewhere that there's a protein in wheat, instead of gluten, that can cause inflammation. I have no source to confirm or deny this but it sounded an interesting theory.

My thoughts are an antiinflammatory diet is a good one to try since inflammation is our biggest problem.
Posted 1/9/2018 3:54 PM (GMT 0)
"The majority of gasteroenteroligists will say there is no connection between diet and UC symptoms. Why? Currently there are no diets studied in great depth (large scale, long term studies that are placebo-controlled, results duplicated by peers, etc.) and officially approved for the treatment of UC, and until their are don't expect a gasteroenteroligist to say they help. " - from what I've heard here so far, with any dietary considerations being pretty much hit or miss with UC, at least for now I'm gonna continue to eat as I have been eating and continue the Lialda - I need to talk with my GI doc and see when he wants me to cut back on the 4 a day dosage since my symptoms seem to be mitigated.

Moving forward, not because of UC issues but because of weight gain (I'm about 25 pounds heavier than I'd like to be), I do need to change up my eating habits, focusing more on portion control especially, and drop some weight. At my age, 67, I exercise but that doesn't seem to be able to knock off the weight any more, LOL, like it used to when I could run 6 miles a day.

I'll bookmark the references to Uniform Charlie and Danielle Walker and start reading their stuff - thanks for those references.

A few other questions:

Tumeric - towards the tail end of a try with Mesalazine (trying to save a few bucks versus Lialda), I tried taking tumeric, while I was having a flare, for anti-inflammation and didn't see any improvement - in fact, I'm wondering if the tumeric didn't make things worse, but who knows - it could just have been that the Mesalazine wasn't effective for me. Has anyone here tried tumeric or any other OTC anti-inflammatory products?

Cannabis derivatives - it's illegal where I am, and I'm not looking for an excuse to get high, but there seems to be so many things that different pieces and parts of cannabis help with - has anyone here had any positive results with anything derived from cannabis?

Acupuncture - has anyone had any improvement with their UC situation directly attributable to acupuncture? I know that there's often not a direct, cause-and-effect relationship with acupuncture treatments, but I have used it for severe headaches and I believe that it helped me.

Thanks for your continued guidance and support - much appreciated !!
Posted 1/9/2018 4:16 PM (GMT 0)
I take turmeric and find it does help. Which supplement you take probably makes a difference as it how low bioavailability.

I've had acupuncture (and acupressure). The acupuncture did nothing for me.

As for diet modification, most people come to diet modification when other things aren't working or aren't working well enough. I'd say see if medication and other approaches gets you to a good remission before a radical change in diet, if it can be avoided. The one caveat to that advise is I would urge to avoid emulsifiers (the food additive kind). It's fairly well accepted now that these are not good for people with UC.
Posted 1/9/2018 8:08 PM (GMT 0)
Am i the oniy one who feels this thread is a bit off?

q
Posted 1/10/2018 8:14 PM (GMT 0)
Am i the oniy one who feels this thread is a bit off?


"Off" how ? Did I unknowingly violate one or more of the rules? I'm new to my diagnosis of UC and trying to get educated as to better ways to deal with the situation - please, let me know what's "off", or let me know what I need to do differently. THANKS !
Posted 1/11/2018 1:21 PM (GMT 0)
don't mind her, she's from up north where the air is a little thinner -
Posted 1/11/2018 1:22 PM (GMT 0)
LOL, I'm from up North, too, a long time ago, but I'm still wondering about that "off" comment - I'm really honestly looking for insights here, and trying to learn about UC from those actually dealing with it. It couldn't have been the cannabis question, cause I've seen that discussed here - like the guy said in "Dirty Harry - "I gots to know, man!"

Post Edited (texas_yankee) : 1/11/2018 6:25:47 AM (GMT-7)

Posted 1/17/2018 4:33 AM (GMT 0)
Nothing weird from my perspective either.
Posted 6/11/2018 2:13 AM (GMT 0)
Just a quick update - 5 months or so ago I switched from Lialda to Sulfasalazine because I was having worsening joint pain - the Sulfasalazine has been wonderful - LOTS less expensive, but it completely controls the UC symptoms and the joint pain has been reduced by 95%. I was initially prescribed 2 pills 4x a day, and now I'm taking 2 pills 3 times a day. Blood work labs are all OK.

I saw little or no positive effect from CBD oil, Tumeric, or Ginger.
Posted 6/11/2018 4:40 AM (GMT 0)
👍😁
q
Posted 6/11/2018 12:21 PM (GMT 0)
That's awesome. Congrats!
Posted 6/12/2018 4:36 AM (GMT 0)
Like Pam Smith, I use Danielle Walker's recipes a lot. I am doing the Specific Carbohydrate diet dairy-free (taking calcium supplements of course), and her recipes have been a God-send. For me, diet has made the biggest difference out of anything for the moment. None of the G.I. doctors said anything about diet to me, and they won't, simply because there isn't enough studies/evidence to support it being a primary therapy yet, although in the future I think there is a good chance it will become more commonly recommended as a complement to conventional medicine, as IamCurious observed about probiotics earlier. My reasoning for pursuing diet was that if it didn't work for me, at least if I had to eventually have surgery I would KNOW that alternative therapy didn't work and I wouldn't be wondering for the rest of my life if things could have been different. I would say don't beat yourself up though; this is no fun and you definitely don't need the added stress of that. Good luck with whatever you decide!
Posted 6/12/2018 10:02 PM (GMT 0)
Im glad youre doing well. I agree with your doctor regarding diet and UC.
Posted 6/12/2018 10:05 PM (GMT 0)
Oh, by the way, if you want to, you can ask an allergist to test you for gluten sensitivity/intolerance. I once had an allergist tell me I had a slight intolerance to gluten, but I never changed my diet.
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