General Diet/Lifestyle UC Advice

Hello everyone,

I've had blood in my stool for over a year on and off some days and about a month or two ago it started to happen everyday with some mucus but that's usually all that happens. I don't have any pain or anything else. So I got it checked out and got a colonoscopy done and I was diagnosed with moderate left-sided ulcerative colitis last week and I've been freaking out a little lately. I've also been doing a lot of research and wanted some guidance and advice. My GI prescribed me apriso (mesalamine) and uceris (budesonide) but I haven't taken any because I don't want to depend on them or make my body worse but not letting it heal and putting drugs into it. I've also been trying to drink cabbage, carrot and celery juice but I haven't been doing it consistently because I just started an internship and it's hard to manage my time and everything. But I'm currently 22 and I only weigh 125, I lost about 20 pounds so far from changing my diet around and not eating much because I don't want to make my symptoms worse but also because I'm a vegetarian. I also added in kefir for probiotics and I try to eat bananas a lot. Sorry about the rant and this long post but I don't really know what to do and would really appreciate any help I can get. What type of a meal plan would you guys suggest, and should I take the medicine or will it make it worse in the future? I've also been reading Dr. David Klein's book Self-Healing Colitis and Crohn's so I might consider his diet plan but it's hard to do because of work and all. Also what type of exercise/yoga would you all suggest to destress? I think school and other stress is kinda what flared me up a lot. Once again I apologize for this long post but thank you for all the help, and feel free to ask any questions.

I highly recommend taking gluten, dairy and refined sugar out of your diet to see if it helps, I know it does for me. One thing also to be careful about is overeating to compensate for the weight loss. Ive learned the hard way that when I over eat my body almost instantly rebels and I experience very nasty results from it.

Take your apriso, it's a 90 percent topical medication that's well tolerated by most without side effects. Delay and your UC might spread, get more severe, and necessitate much, much stronger medications in the near future. I never received any benefit from diet mods, and not everyone does. Take your meds and work on your diet and lifestyle mods. There's many alternatives within the resources thread at the top of the forum. Don't put all of your eggs in one basket.

Bull101 said...

Natof9 said...
I get where you're coming from. I'm all for pharmaceuticals in times of emergency, but if there's even an smidgen of possibility to heal my colon to the point of remission via lifestyle change- that's what I'm going to work towards. So far I've been told I would need surgery and/or Remicade infusions for the rest of my life, but turns out serious diet and lifestyle change was luckily enough.
Long term risks for immuno-suppressants are insane and even weaker aminosalicylates like mesalamine are highly toxic to the body.

How about this, take the meds until you've reached clinical remission while applying Klien's principals. To me the most aggressive stance you can take is using both worlds of conventional and traditional. Once you're safely in remission do a detox and continue lifestyle/dietary changes. If you are able to stay in remission with this protocol, why should medications or surgery trump that?

In the beginning I made the stubborn mistake of approaching my UC with the notion I would heal it with other's holistic protocols, but through trial and error I've discovered my own system that works.
Just FYI, if you're still in a flare- don't expect to be able to digest some of the fruits/veggies Klien promotes. Look up John Rose, Jini Patel Thompson, Vegetable Police, The raw life health show, Dr Robert Morsend, highcardvegans. Some are clinical practitioners with experience in treating IBD patients via holistic approach and others are IBD patients who have tried similar approaches or created their own.

How are they highly toxic to the body?

If we're talking about immunosuppressants in general there's alot of info about their toxicity online.
/www.ncbi.nlm.nih.gov/pmc/articles/PMC3151601/table/T2/

As for mesalamine, although its' shown the lowest occurrence of side effects in patients it is still has a toxic load on the body and long term use can result in salicylate toxicity.
/www.accessdata.fda.gov/drugsatfda_docs/label/2008/022301lbl.pdf
Here is it's FDA label.

/ocw.mit.edu/courses/health-sciences-and-technology/hst-151-principles-of-pharmacology-spring-2005/assignments/0208_sulfa_slide.pdf
Here is a presentation by Harvard docs and profs. about contradictions of treating IBD with mesalamine.

Post Edited (Natof9) : 5/24/2017 1:42:27 PM (GMT-6)

Thank you all for your help, I'll start taking the Apriso now and see if I can achieve remission and then maybe try to taper off and see if I can stay in remission, but what about Uceris? Should I take that too or it's not necessary? As far as my diet goes, I guess I'll eat mostly bananas, try to juice cabbage and eat other soft fruits and cooked soft vegetables and drink kefir. But I just don't get full from just these foods, I need like potatoes, eggs, bread, beans, rice or other sources of carbs but I don't want it to hinder my healing or make my flares worse do you guys have any other suggestions for diet/food that shouldn't bother my colon? Also, any one know what would be a good probiotic to start for me? And would the good bacteria even have a chance to colonize and reach my inflammation since it's all the way on the left side of my colon and near rectum?

I'll go away after this, promise, but there is just one more thing which really irked me.

I've also been doing a lot of research and wanted some guidance and advice. My GI prescribed me apriso (mesalamine) and uceris (budesonide) but I haven't taken any because I don't want to depend on them or make my body worse but not letting it heal and putting drugs into it.

It's a pity that none of this research taught you that a) none of the UC drugs are even remotely habit-forming apart from possibly prednisone*, and b) there are no UC drugs (again, apart from possibly prednisone) which hinder the body's ability to heal. Actually it's the opposite: mucosal healing has increasingly become the goal of researchers and doctors over the past few years, and more and more studies are using mucosal healing as one of the endpoints in drug trials.

*Like the Facebook status, it's complicated. Prednisone is not addictive in the way that morphine is addictive, but the body does develop a physiological dependence to prednisone if you're on it for too long, especially at higher doses. When this happens, withdrawal symptoms can be experienced when you try to taper, or come off, pred.

+1 to NCOT's posts.

Those links provided by Natof9 aren't particularly supportive of the claims made by the poster.

And mucosal healing is precisely what *is* promoted by using mesalamines for UC.

NiceCupOfTea said...

Natof9 said...
If we're talking about immunosuppressants in general there's alot of info about their toxicity online.
/www.ncbi.nlm.nih.gov/pmc/articles/PMC3151601/table/T2/

At least post meds that UC patients actually use - the only med that's used for UC in that list is azathioprine. I've been on its sister med, 6MP, for a year now without any issues. There is about a 3% chance of getting pancreatitis; I can't put a % to the other risks offhand, but that's what regular blood tests are for while you're on these drugs: if your blood cells or liver are taking a hammering, the blood tests will show that and your doctor will reduce the dose or take you off the drug accordingly. But that's probably not as much fun as saying, "ZOMG immunesuppressants toxicity cancer!!!"

Let's see what other science you've managed to create a mountain out of a molehill over.

/www.accessdata.fda.gov/drugsatfda_docs/label/2008/022301lbl.pdf

Boring. Standard prescribing information leaflet for docs, nothing to see there. The % of adverse reactions are barely higher than for patients taking the placebo.


/ocw.mit.edu/courses/health-sciences-and-technology/hst-151-principles-of-pharmacology-spring-2005/assignments/0208_sulfa_slide.pdf
Here is a presentation by Harvard docs and profs. about contradictions of treating IBD with mesalamine.

Contraindications, not contradictions. If you're going to slag off science, at least get the terminologies right so you look more like you know what you're talking about.

Looked through the slides and don't understand the point you're trying to make.

Lol the question was are they highly toxic. Do they hold a long term toxicity load on the body, not a question about the % of likelihood to become affected by toxins or how these medications effect YOU personally. I'm not here to debate people's belief systems about optimal healthcare. To each his own.

OP is interested in trying alternative/holistic methods due to fears of the potential long term toxicity of mesalamine- of which the liver and kidney take a hit. The fact they are taking a "hammering"prove the existence of toxins and given that the typical UC patient's immune system is already in a state of duress, the performance of antioxidants fighting off toxins can become limited over time. OP is also concerned about having to rely on these meds for life, not necessarily becoming addicted. I mean it's almost the same argument.

There is possibility of renal impairment as that boring FDA leaflet states under warnings and precautions. If you are not satisfied with animal studies- this human trial outlines the potentials of renal failure with the long term use of 5-aminosalicylic acid in IBD patients.
/www.ncbi.nlm.nih.gov/pmc/articles/PMC2694651/
The FDA has mesalamine as risk category B. Almost all IBD medications range from B to X, meaning there is insufficient evidence that they are 100% safe in pregnancy. That fact of uncertainty is enough to deter it's long term use for some people.

I love how my misuse of contraindication and contradiction is being used as a fallacious argument. 'Contraindication’: something (as a symptom or condition) that makes a particular treatment or procedure inadvisable. The term contradiction can still be used validly in this case, because it IS a contradiction that mesalamine is used to treat IBD when it's efficiency relies on the drug targeting the large intestine, but a high % is absorbed in the small intestine. Or the fact that a large % of the pop. are missing the enzyme to properly metabolize the drug. THAT's the point they are trying to make.

No need to get your panties in a bunch. If someone asked me can sugar be toxic to the body, I'd say yes and state the reasons as to how it can be.
Also your experience of toxic megacolon is an effect due to toxin build up, not your body just naturally causing it.
Let each person outweigh the risks by their own judgement without ridicule. Let each person decide how they prefer addressing cause and effect. Some people prefer focusing on managing symptoms while others prefer focusing on eliminating the casual factors. Just FYI- I don't strive to sound like I know what I'm talking about. This is my understanding based on my studies and information I plan on implementing in my upcoming career. I am always open to having a fair debate/discussion void of subjective reasoning.

Post Edited (Natof9) : 5/25/2017 5:17:18 AM (GMT-6)

hlpuc17

If lower level RX meds (mesalamines-both oral and rectal) can help your UC please give them a fair try. These have been proven relatively safe over years by people using them. If they don't help you, or help enough, then add on some diet modifications.

Try not to do everything at once or you may become confused and stop the thing that is actually helping you.

I was a vegetarian when UC came to stay and had to add meat into my diet because so many other foods irritate my gut and meat was low symptom food.

Rectal mesalamine enemas can be very healing once you get over the Ugh of using them nightly. Get an RX and use them. Suppositories are good but not as far reaching as enemas, use these when things have settled down.

To gain weight try adding healthy oils into as much as possible: coconut oil, olive oil into smoothies and anything you cook. Healthy calories. It's hard to gain weight while flaring but this will help maintain weight until your gut starts to heal.

Natof9 said...
No need to get your panties in a bunch. If someone asked me can sugar be toxic to the body, I'd say yes and state the reasons as to how it can be.

You really, really like the word "toxic", don't you? I guess the concept of everything being a poison at a high enough dose is too sutble for you to comprehend, but as one example of what I mean by that google water toxicity. People have died as a result of drinking too much water. I look forward to your next scaremongering post telling people to avoid water because did you know it's toxic guys?!!

Natof9 said...
Also your experience of toxic megacolon is an effect due to toxin build up, not your body just naturally causing it.

Nope, nope and more nope.

Natof9 said...
The term contradiction can still be used validly in this case, because it IS a contradiction that mesalamine is used to treat IBD when it's efficiency relies on the drug targeting the large intestine, but a high % is absorbed in the small intestine.

No. Mesalamine is designed to release in the colon, not the small bowel. The only one that releases in the small bowel is Pentasa, which is used mainly in Crohn's disease (although less often than it used to be, since there is much controversy over whether mesalamine has any positive effect on Crohn's disease). You missed a key word: "Unformulated mesalamine is absorbed in the small intestine (80%)". You don't take unformulated mesalamine. Sulfasalazine was the first mesalamine drug to be developed, only 20% of which was absorbed in the small intestine. Then later on, safer and less toxic mesalamine drugs, which were able to do away with the sulfa component, were developed. Do you read your own links? It's all there.

IamCurious said...
Actually once you escalate up to a biologic such as Remicade then you are most likely to remain on it permanently. Even if you eventually develop antibodies and must discontinue Remicade, the chances are that you need to be placed on another biologic.

Here is another poster who has no idea of what "habit-forming" actually means. You can stop Remicade cold turkey at any time and there will be zero adverse consequences. The body or brain does not 'crave' Remicade once it's stopped. The disease might or might not come back after stopping Remicade, but that is a completely separate issue. People do absolutely nothing at all and stay in remission for years. People go on every medication and diet under the sun and end up needing surgery.

Post Edited (NiceCupOfTea) : 5/25/2017 10:11:19 AM (GMT-6)

When I see statements like 'toxic' regarding medications, I just roll my eyes , as it's just plain demagoguery and fear mongering. There's many of us who need medications to control our UC symptoms and have a decent quality of life and we're not fools pouring toxins in our bodies and poisoning ourselves (both judgements). It's in the forum rules that we need to be respectful of others treatment choices, so let's follow them. This thread is going off the deep end and will soon be locked if this continues.

NiceCupOfTea said...

IamCurious said...
Actually once you escalate up to a biologic such as Remicade then you are most likely to remain on it permanently. Even if you eventually develop antibodies and must discontinue Remicade, the chances are that you need to be placed on another biologic.

Here is another poster who has no idea of what "habit-forming" actually means. You can stop Remicade cold turkey at any time and there will be zero adverse consequences. The body or brain does not 'crave' Remicade once it's stopped. The disease might or might not come back after stopping Remicade, but that is a completely separate issue. People do absolutely nothing at all and stay in remission for years. People go on every medication and diet under the sun and end up needing surgery.

Nobody is talking 'habit-forming' except you. The OP's original question was if someone could become dependent on meds. My answer was that once you escalate to the 'big gun' biologics then it is very hard, almost impossible, to de-escalate back down to the milder maintenance meds to remain in remission.

Please correct me if I am mistaken.

Exactly, NCOT.

In medicine, dependency has a specific meaning, and the use of biologics does not fit with that meaning.