Ulcerative Colitis Resources

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Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 12/11/2009 12:11 PM (GMT -6)   
This thread is intended to house articles and resources for UC and IBD in general. The resources posts include:
  • 1 - Helpful links
  • 2 - Patient assistance programs
  • 3 - Approved vs. alternative treatments
  • 4 - Tips for using enemas
  • 5 - Tips for flare ups
  • 6 - Tips for coping with stress and anxieties
  • 7 & 8 LDN
  • 9 - Surgery
  • 10 - Standard Blood Monitoring
  • 11 - Fecal Transplant Protocol (Provided by HW Members)
If you have a suggestion for an addition, please let a UC mod know.

Overviews of UC:

HealingWell Ulcerative Colitis Success Stories Thread:

Advice from veteran Uc'ers to the newly diagnosed -- has a lot of good info, even if you aren't new!

Benefit of using both oral AND rectal medications:
And here it is again in a nutshell:

Diet information:

Doctor Ratings:

Finding a GI:

How much is your GI getting from drug companies?

Living with UC, a very informative YouTube channel:

From conception to delivery: Managing the pregnant inflammatory bowel disease patient

The Second European Evidenced-Based Consensus on Reproduction and Pregnancy in Inflammatory Bowel Disease

Simple Video Explaining Gut Immunology and IBD:

Prednisone side effects

J Pouch Forum:

HW Ostomy Forum:

[Reorganized and fixed bad links]

Post Edited By Moderator (iPoop) : 12/29/2016 10:21:13 AM (GMT-7)

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 9/11/2010 11:03 AM (GMT -6)   
Patient Assistance Programs:

Patient assistance programs for drugs used to treat UC as well as information on free/reduced-cost clinics: www.needymeds.org

Coupons for medications: www.internetdrugcoupons.com/

If you are having trouble getting something approved www.patientadvocate.org/

Assistance with Cost of:[Fixed bad links]

Post Edited By Moderator (notsosicklygirl) : 7/28/2018 8:29:09 AM (GMT-6)

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 1/24/2011 10:09 PM (GMT -6)   
Approved Treatments vs. Alternative Treatments
This is provided as a guide to familiarize HealingWell site users with U.C. treatment options.

Approved Overview
The first line of treatment given to U.C. patients is a prescription anti-inflammatory 5ASA/mesalamine medication. Depending on patient response and disease severity, they may move up to the next line of treatment. Second, is immunosuppressive medications. Third, are biologics. If the patient is unresponsive to those medication categories, then surgery is the next recommendation.

Anti-Inflammatory 5ASA/Mesalamine/mesalazine
The first line of treatment for U.C. is to prescribe an anti-inflammatory medication in both oral and rectal route. These medications are the considered the safest medications available for U.C. that generally produce few and minor side effects as they are ~90% topical and ~10% systematic.

Rectal meds: Canasa® suppository. Rowasa®, sfRowasa® (sulfate-free), or Melamine Rectal Suspension (generic) enemas, and Salofalk®, or Pentasa® foams or enemas.

Brand name Oral meds with PH-delayed-release coatings:
  • Apriso®
  • Asacol® (replaced with Delzicol®)
  • Asacol-HD®
  • Delzicol®
  • Lialda®/Mezavant®
  • Pentasa® pills or granules

Generic Oral meds with PH-delayed-release coatings:
  • Mesalamine DR 800MG by Zydus Pharmaceuticals out of NJ (get a prescription for Asacol and it should be filled as Mesalamine DR 800MG).
  • Mesalamine DR 1200MG by Zydus Pharmaceuticals out of NJ (get a prescription for Lialda and it should be filled as Mesalamine DR 1200MG).

Other generics that are a more complex molecule that is broken down to mesalamine and a byproduct by your gut bacteria:
  • Colazal® (generic balsalazide disodium)
  • Dipentum® (generic Olsalazine)
  • Sulfasalazine a generic

These are the second line treatment for U.C. which reduce the white blood cell count within the body. White blood cells cause inflammation within the body
  • 6mp (generic Mercaptopurine) and Imuran® (generic Azathioprine) are the most common.
  • Cyclosporine and Methotrexate are not widely used as maintenance treatments for U.C.

Immunosurpressants take several months to build up to therapeutic levels within the body. Immunosupressants initially require blood to be monitored weekly. After good results are collected monitoring is often reduced to biweekly, monthly, and finally trimonthly. Blood monitoring includes a CBC to ensure white blood cell does not get too low, a liver panel test monitors liver function and to watch for proteins indicating liver damage might occur. Medication dosage is increased, reduced, or it is discontinued based on test results. While on these medications, one is more prone to infections such as UTIs, bronchitis. The most concerning side effect of these medications is lymphoma which has odds of 4 in 10,000 (or 0.04 percent) compared to 2 in 10,000 (or 0.02 percent) for the general population.

Biologics are the third line of treatment for U.C.
[list]*Humira® (biosimilar Amjevita®)
*Remicade® (biosimilar Inflectra®)
*Simponi® are all systematic TNF-alpha blocking biologics.
*Entyvio® is a gut-site-specific biologic.
*Xeljanz (tofacitinib) is a prescription medicine called a Janus kinase (JAK) inhibitor
Biologics are administered via IV or a self-administered epidermal (just below the skin) injection depending on medication. The most concerning side effect of these medications is lymphoma which has odds of 6 in 10,000 (or 0.06 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Biologics are mostly brandname medications (new biosimilars are supposed to be 15-20% more affordable) and can be costly depending on health insurance (refer to patient assistance programs and insurance fine print). As an example, a 140 pound patient may be initially billed $6,600.00 USD for a 5mg per kilogram dosage every 8 weeks in the USA. Insurance often disallows a portion of that bill, reducing the paid amount due to approximately half that amount: $3,300.00.

Steroids are emergency-rescue medications meant for short term treatment of the worst of uc flareups while other medications have time to work.
[list]*Oral medications include Prednisone/prednisolone, and the delayed-release Entocort EC® or Uceris®/Clipper®.*Rectal medications include Cortifoam, Uceris Rectal Foam, Cortisone enemas, and Cortisone suppositories.[/list]
Steroids produce many annoying, temporary side effects (such as increased appetite that can cause weight gain, insomnia, acne, moonface, mood swings) but are effective at treating flare ups of uc quickly. Steroids may also be administered in high dosages through an IV under nurse supervision. Long term usage of steroids can cause adverse, irreversible effects including osteoporosis, glaucoma, and type ii diabetes.

Stool Tests
These are used to check for bacterial causes which often mirror U.C. symptoms. Possible problem bacteria: Campylobacter, Clostridium difficile (CDIFF), Cytomegalovirus, E Coli, Helicobacter pylori, Salmonella, and Shigella.

The following antibiotics are used to treat bacterial issues in U.C. patients: Ceftriaxone, Fluoroquinolones, Metronidazole, Tetracycline, Vancomycin, and XIFAXAN.

20 to 25% of UC patients require surgery.
[list]*Proctocolectomy with Ileostomy
*jpouch www.j-pouch.org
*Barnett Continent Intestinal Reservoir http://bcirhistory.com


Clinical Trials:

[list]*Anti Candida Diet
*Eliminating Processed Foods
*Gluten Free Diet
*Lactose Free
*Low Fiber Diet
*Low Residue Diet
*Raw Food Diet
*SCD Diet http://www.breakingtheviciouscycle.info/[/list]
Fecal Bacteriotherapy: http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

IVIG - Intavenous Immunoglobulin: http://www.ncbi.nlm.nih.gov/pubmed/1728132

LDN - Low Dose Naltrexone: http://www.lowdosenaltrexone.org/

User InSoFL's story about LDN

Nicotine: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2014383/

Phosphatidyl Choline: Must be compounded to release properly

Probiotics: Can be in pill form, yogurt, kombucha, kefir, fermented foods. Common oral pills/powder are Align, Culturelle, Florastar, Naturen, and VSL#3.

Supplements: Aloe Vera, Bitters Compound, Bromelain, coconut oil, Deglycrrhizinated Licorice (DGL), Digestive enzymes, Flaxseed, Folic Acid, Ginger, Grape Seed Extract, Grape Seed Extract, Nopal Water, Holy Basil, Peppermint, pineapple, Omega-3, Oregano, Psylium Husk (metamucil or Citrucel), Slippery Elm, Turmeric/Curcurmin/Boswellia, Vitamin D, and vitamin-e enemas.

Triple Antibiotic Therapy: amoxicillin 1500mg/day, tetracycline 1500mg/day, and metronidazole 750 mg/day

Tumeric (Curcumin) Use in UC: Research on Safety and Dosing (see links below)

[list]*NIH fact sheet: Turmeric (Curcuma longa Linn.) and Curcumin

*Curcumin (comprehensive 'summary' of the research for the public)
Micronutrient Research for Optimum Health
Linus Pauling Institute, Oregon State University

*Curcumin Therapy in Inflammatory Bowel Disease: A Pilot Study
Digestive Diseases and Sciences, Vol. 50, No. 11 (Nov 2005), pp. 2191–93

Wellbutrin: some studies have shown Wellbutrin to be effective as a TNF Blocker.

Worm (Helminthic) Therapy: http://en.wikipedia.org/wiki/Helminthic_therapy

Medical Marijuana

[fixed bad links]

Post Edited By Moderator (notsosicklygirl) : 7/28/2018 8:33:02 AM (GMT-6)

Forum Moderator

Date Joined Aug 2012
Total Posts : 13200
   Posted 9/25/2014 9:37 AM (GMT -6)   
Tips for using meslamine/rowasa enemas:
  • When you first start using enemas, use them in the bathroom very close to a toilet as they can come up very quick and unexpected. As you get better at them, and more confident, you can administer them in bed.
  • Add extra Vaseline (petroleum jelly) to the tip of the enema.
  • Warm the enema up to body temperature before administering. Put it in a pocket for a while before using, or warm it up under an armpit.
  • Squeeze all of the air out of the bottle before administering. You do not want to inject any air into your bowel as it will both be uncomfortable and make it likely you will need to urgently evacuate the enema fluid.
  • Lay an old towel down as any drips of the enema fluid can stain clothing, carpet, etc.
  • Use one of the positions described in the instructions.
  • Administer the enema slowly, too quickly and you will be less successful. If you wish, you can do one half the bottle first, wait a few minutes, and then administer the rest.
  • Stay reclined on your left side for about 20 minutes to allow the enema fluid to be absorbed. Retire for the night.
  • It takes practice to hold the enema in for 7 hours. Do not get discouraged, and keep trying. Even if you evacuate part of the enema, some will likely remain and heal you. As you heal, it will be easier to retain them for longer lengths of time.

Post Edited (iPoop) : 9/25/2014 8:43:32 AM (GMT-6)

Forum Moderator

Date Joined Aug 2012
Total Posts : 13200
   Posted 10/3/2014 10:28 AM (GMT -6)   
Tips for ulcerative colitis flares up:
  • Eat bland foods and avoid spicy food.
  • Avoid a high fiber diet, which will bulk up stools, is abrasive. Inflammation narrows the large intestine and causes it to be raw; not a good mix.
  • Avoid caffeine which can stimulate the bowel muscles increasing bm urgency
  • Avoid alcohol
  • Eat smaller, more frequent meals
  • Raw vegetables are more difficult for the gastrointestinal tract to digest, so cook them thoroughly
  • See your gastroenterologist, have a stool test to check for pathogens (e g., cdiff), have your prescriptions adjusted.

Post Edited (iPoop) : 5/25/2016 2:15:27 PM (GMT-6)

Forum Moderator

Date Joined Aug 2012
Total Posts : 13200
   Posted 10/3/2014 10:30 AM (GMT -6)   
Tips for coping with stress and anxieties:

Three Minute Mindfulness Meditation Video

Post Edited (iPoop) : 5/25/2016 2:15:38 PM (GMT-6)

Forum Moderator

Date Joined Aug 2012
Total Posts : 13200
   Posted 5/25/2016 2:35 PM (GMT -6)   
LDN - Low Dose Naltrexone

This will serve to explain LDN, the informational links, dosages, side effects, types of LDN, etc...

I have been on LDN since March 2011, and it has put me in total remission.

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you. You can reach them at: 800-553-7429 www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:


and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease at: www.ldndatabase.com

Here's my story on LDN:
Transdermal LDN (low dose naltrexone) put me in remission - Bottom line is it works!
For those of you considering LDN, or for those of you not familiar with LDN, I wanted to share my story:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients: www.ncbi.nlm.nih.gov/pubmed/21380937

I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10 (on scale of 1-10, 10 being the worst).

When I spoke with the compounding pharmacist, she mentioned that I may not be absorbing the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

The THIRD day after I started the transdermal LDN, my bleeding went from a 10 to a 3. By the SEVENTH day ( full week on LDN), my bleeding STOPPED completely, after more than 1 1/2 years of continuous bleeding. Bottom line is it works!

You can get LDN in: oral pills, transdermal (cream), and sublingual troche.

When to take LDN (whether it be oral pills, transdermal, or sublingual troche:
LDN must be taken between 10pm and 2am.

Fillers for oral LDN
There is:
avicel = problematic, not recommended
lactose = not recommended
slow release = doesn't work well, not recommended
cellulose = could be ok
sucrose = least problematic one, this is the one I recommend and then of course, there's the transdermal LDN.

Transdermal vs. Sublingual LDN
In order for the transdermal LDN to be absorbed by the skin, they had to figure out a formula. From what I understand, after some experimentation, they discovered that Emu oil acts as a good carrier, enabling LDN to be carried through the pores and absorbed by the skin pretty effectively.

The transdermal LDN cream, already contains this Emu oil within it, and really cannot be detected either visually or to the touch. So when you apply the LDN cream, you rub it on as a cream (just as you would any other). I hope this makes sense. BTW, it's very important you know that this cream SHOULD NOT be refrigerated, as refrigeration breaks down its ingredients. It must be kept at room temperature.

How to apply the transdermal LDN:
once you push out the cream from the demarkated push syringe, you would apply it to these locations, making sure to rotate left one night, right next night, and rotate locations each night:
- top of feet,
- top of hands,
- back of forearms right above the wrist where the skin is the thinnest and the blood vessels show
I hope this makes sense. Be careful the first time you squeeze it out of the syringe, so you don't squeeze out too much past your demarkated dosage. You'll get the hang of it, the first time is the most tricky.

How your doctor needs to write the script for transdermal LDN:
Prescription should be written like this:
Naltrexone Cream 4.5 mg/1 mL
Apply 1 mL every night at bedtime.

Sublingual LDN Troche
As far as sublingual troches, they too, are compounded by a compounding pharmacy, and are made into a little square (to which they can add some flavoring as the naltrexone typically tastes pretty bitter). You take this little square (approx. 3/8" x 3/8") and place it under your tongue, until it completely dissolves, this may take 10-15 minutes. What's good about this methodology is that it bypasses the gut entirely, just as transdermal does. And for people with IBD that has a big advantage.BTW, the sublingual troches must be refrigerated.

If you are interested in reading about the process of sublingual administration and process, here's a good source:


"...essentially, when a medicine is placed under your tongue, it diffuses through the mucous membranes beneath your tongue. And because of the plethora of capillaries there, the medicine has a fairly direct route into your bloodstream. This results in the medicine working faster, and oftentimes, better.

Ok, you say, but WHY does it work faster?
Good question -- here's the answer: When you swallow a pill, it must go through your entire gastrointestinal tract. This means the stomach (with acid and bile), the intestines (where most absorption takes place) and then off to the liver, for some more filtering. And THEN it's delivered to where it's needed.

Truthfully, it's the long way, when you think about it. Going under the tongue bypasses this entire route, and delivers the medication right to the bloodstream. No waiting, no roadblocks -- just right into the blood and off to do its job.

In addition to the speed, the medicine delivered sublingually is usually more potent, and (in general terms) needs less medication to do the job it's intended to do (you may have heard stories about people cutting pills in half, then taking them under the tongue, to produce the same effect as swallowing one pill). The reason for this increased effect is the digestive tract is incredible harsh. And it's meant to be -- it's how food is broken down, and the nutrients get stripped out, while the waste goes ... well, you know..."

LDN Dosing
There are 2 different thought processes on the dosing for LDN:
1) some doctors prefer you start right at the ideal dosage (as was used in the Dr. Jill Smith studies) @ 4.5mg
2) others prefer you start at 1.5mg for 2 weeks, then go to 3.0mg for 2 weeks, then finally to 4.5mg
Typically, the ideal dosage is 4.5mg. There are some researchers experimenting with twice daily dosage at a lower dosage, but it has not yielded as much positive results as taking it at nightime @4.5mg.

Results vary greatly within individuals, however I can tell you that if you are truly gluten and dairy free you may see results within the first 10 days, if you are not gluten and dairy free, then it may take as long as 3-4 months to see results. But regardless, the researchers and doctors suggest you take LDN for at least 6 months. It seems for many, the greatest results are seen at the 6 months' mark.

Side Effects
Within the first 2 weeks, you may get some very vivid dreams - this does dissipate afterwards. It is recommended that you ensure a calm environment several hours prior to bedtime to ensure "nice" vivid dreams, i.e. if you watch horror movies or read thrillers prior to bedtime, you may suffer terrible nightmares, however if you watch nice movies or read nice (vs. horror) books, then your dreams will be vivid without the nightmare quality to them.
When you take LDN initially, you may get a 24-48 hour cold or flu - this happens as the LDN "ramps up" your immune system, but will not last. Let it move through your system, and then it will be gone.

How Does LDN work?
Here's a great video which explains how LDN works:

If your doctor won't prescribe LDN for you, please email me and I will explain how you can get LDN.
If you have any questions on any aspects of LDN, please email me: forumsdlj@aol.com


Post Edited (iPoop) : 5/25/2016 2:16:04 PM (GMT-6)

Forum Moderator

Date Joined Aug 2012
Total Posts : 13200
   Posted 5/25/2016 2:50 PM (GMT -6)   
LDN.......thanks InSoFla!!

InSoFla's story:

Since the time I was diagnosed with UC, I can tell you that I had to be my own advocate, because my Gastro told me diet has nothing to do with UC, except for spicy foods or alcohol. He loaded me up with different mesalamines (I turned out to be intolerant of them), prednisone, and then when nothing worked he gave me a choice of the biologics or surgery - neither of which I wanted. So I developed a program which helped me, which I would like to share with you in the hopes that it will help you too.

Here's where I stand today in Remission. Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements =REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.

Here's what's worked for me:

1) Diet is key for me: I do the Paleo diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: www.cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine powder 5 grams - for colonic repair, you can take it several times a day in a shake or juice. If you're having issues with urgency and diarrhea, then you'll need to take L-Glutamine powder 1 teaspoon mixed in a little water on an empty stomach, and that should alleviate your symptoms a great deal.

3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's and works much more effectively than all the mesalamines without the side effects.

4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

5) Drink lots of good water.

6) Get your vit. D3 and B12 blood work done, to see if you are deficient.

7) SCD diet - specific carbohydrate diet - many have had lots of success with it. If you can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free. Personally, however I prefer the Paleo diet, because it is an anti-inflammatory diet - mostly veggies, salads,nuts, fish, lots of GRASS-fed animal products like lamb, beef, bison, and eggs, but no grains at all. The whole basis of the diet is to concentrate on foods rich in healthy ratio of omega 3 to omega 6, which is ideally 1:1. Grain-fed animal products contain unhealthy ratio of 1:20 which causes and contributes to inflammation in the body, and therefore disease. Also grass-fed animal products contain important CLA, which you cannot get from any other source.

You can buy grass-fed animal products from a local health food store like Whole Foods, but you can also find a local farmer who only has grass-fed animal products through: www.eatwild.com

8) start a food journal and see what correlations come forth

9) There's a great app for keeping track of your symptoms, diet, meds, etc...

10) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works!
Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, http://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

11) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?

12) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them. I've found some excellent ones at: www.4alw.com/, and here's a discount coupon you can use (at checkout): 25CFUC. I have mine on auto-ship.

13) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk (and to which I add my liquid minerals and vitamins, and L-Glutamine powder as well). I particularly like his Pro-Optimal Whey Protein shakes because they are like getting Paleo or grass-fed shakes. This is because the whey comes from grass-fed cows (no hormones or antibiotics), and he adds some digestive enzymes to this product, which makes it easy on the gut too.

14) Astaxanthin is a great anti-inflammatory.

15) As far as "cheating", yes I do occasionally cheat with gluten and dairy. I enjoy brownies, ice cream, pizza, pie, spaghetti - but will only indulge in these if I can take the Gluten Relief product - 4 capsules after the "cheat" meal, and it prevents digestive distress. If you are interested in "cheating" once in awhile, make sure you have the Gluten Relief product at the ready.
Here's where I get mine from: http://www.astenzymes.com/gluten-relief, the product name is: Gluten Relief, and I used a 10% off coupon code GLUFLR (which I found and seems not to have an expiry, you can try it too if you like).

If you have any questions on this Protocol, or on LDN, feel free to email me: forumsdlj@aol.com, and I'll be glad to help you.

Post Edited (iPoop) : 5/25/2016 2:16:19 PM (GMT-6)

Forum Moderator

Date Joined Aug 2012
Total Posts : 13200
   Posted 5/25/2016 3:35 PM (GMT -6)   
If you've struggled and tried many treatments (from mesalamine, to immunomodulators, and multiple biologics) then it's worth considering surgery. There's always a seemingly endless amount of alternatives, clinical trials, and other things that can be tried if you have more fight in you. But if you don't, then that's understandable. As there's a point where you have to get your quality of life back and are just done with uc, which we totally get. Life can pass by quickly many months and years while we fight, fight, and get nowhere. Surgery can be amazing for those in which nothing has worked to control their uc, as suddenly things are predictable and under control. Surgery's tough, but so are you if you've made it this far with uc.

Surgery is a very tough decision to make. Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure - There are also some good blogs out there that really help you get a handle on what the process is like -
Surgery isn't all sunshine and lollipops though is it? Of course not, although the majority have great outcomes there's always risk. We also had a good thread "Reasons not to have surgery?" that covered some downsides to get both perspectives and some potential shortcomings. www.healingwell.com/community/default.aspx?f=38&m=3709466
Some have had trouble. As an example, here's SolomonSeal's story: www.healingwell.com/community/default.aspx?f=38&m=3263001

Post Edited (iPoop) : 9/7/2017 2:11:18 PM (GMT-6)

Forum Moderator

Date Joined Aug 2012
Total Posts : 13200
   Posted 6/1/2016 7:23 PM (GMT -6)   

Before starting 6MP you can ask for a TPMT blood test
Helps to see if your genetics might result in immunomodulators NOT being effective for you.

Standard blood tests for monitoring of 6mp/Imuran/azathioprine are:
  • CBC with Differential. This test is a Complete Bloodcell Count (CBC). These drugs intentionally lower your white blood cell count, and this test monitors to make sure it doesn't get too low.
  • Hepatic function panel (LFT). This test looks for elevated liver enzymes a warning sign for adverse reactions to these drugs.
Your lab should enter your tests as a "standing order" within their system. When you arrive tell them you have one, and paperwork won't be necessary with every visit, as you're already in the system. Test intervals are often weekly, then biweekly, then monthly, and then remain at trimonthly while you're on these drugs. After multiple good results, your doctor will likely decrease their frequency.

Thiopurine Metabolites is a diagnostic test for immunomodulators that determines if you have the proper concentration of that medication in your system for optimum therapeutic (healing) effect, and it is helpful in establishing proper dosing for individuals.

A diagnostic blood tests for Remicade/Infliximab is: Infliximab trough concentration and antibody levels. Available from:
  • Prometheus Labs (pioneered that test and still offers it)
  • KU Leuven
  • Sanquin
  • Dynacare
  • LabCorp

Moderator Ulcerative Colitis
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Breakfast is a lot less appetizing when you're still nauseous and sore after poops; thanks uc.

Post Edited (iPoop) : 6/27/2018 7:43:07 AM (GMT-6)

Forum Moderator

Date Joined Dec 2008
Total Posts : 16719
   Posted 9/7/2016 7:37 PM (GMT -6)   
(please keep in mind - this, as with every other treatment has mixed results. Some get better, some have no change and some get worse)

FT Enema How To Guide (the Poo-Ga). yeah
written by curl3d




• 1 enema bottle (100 ml) emptied out of contents
• saline
• blender
• baby wipes (great for wiping hands etc)
• Vaseline


Try to empty your bowel as much as possible prior to procedure. I get up early (5:00 am) and eat breakfast to give me enough time. I even drink a bit of espresso sometimes just to kick start the stomach but you should probably avoid this if you are not having solid bowel motions.

Get the feces inside the blender as fast as possible after donation. Pour the saline in it as quick as you can because a) it smells less yucky and b) you'll preserve more of the bacteria this way since it will be exposed to oxygen less time while you get yourself ready. Make it about 35% poo and 65% saline. It needs to be easy to pour. Make sure you have covered the feces with saline before starting the blender and mix the feces for no longer than necessary to make the solution can be poured (max 20 secs) as this increases the risk for exposing the bacteria to oxygen (as previously mentioned, as oxygen may kill some of the bacteria due to osmotic shock).

Pour the mixed solution into the enema and put the tip back on. Put some Vaseline on the tip. Place a towel on the floor and get down on your knees with face down on the floor. Get the enema between your legs and get it into your bum as far as the tip goes. Just be careful and make sure you point it slightly downwards as this is how your colon will be aligned. Squeeze the enema with a long consistent squeeze. Don't let it stay in there after you finished squeezing or it may suck the contents back into the bottle again. Stay in this position for 1-2 minutes and massage left side of tummy gently from bottom upwards. Imagine your colon going from bottom to the left and then up and right. Get up and fill up the enema with whats left. Repeat injection procedure. Aim to get 300 ml (I could never empty the enemas completely but almost). Massage tummy from bottom left to upwards (for a minute or two) after injecting second time.

When I first told my doc about that I wanted to do the FT he said that I would never be able to get the administered solution past the first curve in the colon, I thought I'd be darned if I can't, so time to get a little acrobatic. First, start off by having your bum in the air face down and massage your left side for a few minutes. Then turn on to your left side and massage for a minute or two. Now, the ideal posture would be to stand on your hands right? But I can't do this very well at the moment and it wouldn't be possible to perform any massage like that so instead I put my back against the wall and crawl up with my feet leaving me in a yoga like position with my tummy completely vertical to the floor. Massage for a few minutes and then turn to your right side. Perform this whole massage procedure for 30 minutes turning to each side for a few minutes and massaging your tummy.

Rinse all equipment in hot water

Post Edited (notsosicklygirl) : 9/7/2016 9:19:32 PM (GMT-6)

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Date Joined Aug 2012
Total Posts : 13200
   Posted 12/31/2016 9:22 AM (GMT -6)   
Odds of remission and varying degrees of flares

Ulcerative colitis patients in a given year:
  • 48% of people with ulcerative colitis are in remission
  • 30% have mild disease activity
  • 20% have moderate disease activity
  • 1% to 2% have severe disease
70 percent of patients who have active disease in a given year will have another episode of active disease in the following year.

Only 30% of those in remission in a given year will have active disease in the following year. The longer a person with ulcerative colitis remains in remission, the less likely he or she is to experience a flare-up of the disease in the following year."

Source: http://www.ccfa.org/resources/facts-about-inflammatory.html

Odds based on initial disease extent
  • On average, individuals with ulcerative colitis have a 50% chance of having their next flare within 2 years (Rowe).
  • The majority of individuals who advance to more extensive disease will do so within the first 5 years after diagnosis (Rowe).
  • If ulcerative colitis is initially limited to the rectum at the time of diagnosis, fewer than 30% of individuals will go on to develop more extensive disease (Rowe). Approximately 10% of patients presenting with proctitis will develop a pancolitis (Rowe). The disease remains confined to the rectum in approximately 25% of cases (Rowe).
  • If ulcerative colitis involves the rectum and sigmoid colon, there is a 50% chance of more extensive disease progression over 10 years; for these individuals, the rate of complete or partial surgical removal of the colon (colectomy) is 12% over 25 years (Rowe).
  • Pancolitis occurs in 10% of patients (Rowe).
  • Individuals with ulcerative colitis have an increased risk of developing colorectal cancer at a rate of 0.5% to 1% per year (Le); overall, cancer occurs in 3% to 5% of individuals (Khan).
  • Extraintestinal complications occur in approximately 20-25% of patients with IBD (Rowe).
Source: http://www.mdguidelines.com/ulcerative-colitis

Post Edited (iPoop) : 6/10/2017 6:42:33 AM (GMT-6)

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Date Joined Aug 2012
Total Posts : 13200
   Posted 6/6/2017 3:44 PM (GMT -6)   
One of the biggest headaches when switching health insurance policies is you might have to change medications. Here's a basic survival guide to help you through it.

1.) Ask which UC medications are on the insurance's formulary (preferred) list and which are on their non-formulary (not preferred) list. For the lowest out-of-pocket cost, choose from the formulary list.

2.) Generics are the most cost effective. Brandnames are more expensive.

3.) Use the health insurance's price estimator tool (online insurance website, or call insurance, or ask a pharmacy) to learn what your copay will be. You will need to know which medications are applicable. The most common meds used are the anti-inflammatory, mesalamine-based medications that should be available in their price estimator:
  • Apriso is brandnamed, comes in 375mg pills, a typical dose is 1,500 mgs or 4 pills daily. A copay assistance card is available from the manufacturer www.aprisorx.com/apriso/savings-card.
  • Balsalazide Disodium is generic of Colazal, comes in 750mg pills, a typical dose is 6,750mgs or 9 pills daily.
  • Colazal is brandnamed, comes in 750mg pills, a typical dose is 6,750mgs or 9 pills daily.
  • Delzicol is brandnamed, comes in 400mg pills, a typical dose is 4,800 mgs or 12 pills daily. A copay assistance card is available from the manufacturer www.delzicol.com/resources/savings-card/
  • Lialda/Mezavant is brandnamed, comes in 1,200mg pills, a typical dose is 4,800 mgs or 4 pills daily. A copay assistance card is NO LONGER available from the manufacturer, discontinued on 11/1/2017 and will not be renewed into the next year.
  • Mesalamine DR is generic, comes in 800mg pills (generic Asacol HD) and 1200mg pills (generic Lialda), a typical dose is 4,800mgs. That's 8 of the 800mg pills or 4 of the 1,200mg pills daly.
  • Pentasa is brandnamed, comes in 500mg pills, a typical dose is 4,000 mgs or 8 pills daily. A copay assistance card is available from the manufacturer /www.shire.com/patients/patient-services/shire-cares.
  • Sulfasalazine is a generic,comes in 500mg pills, a typical dose is 4,000mgs or 8 pills daily.

4.) Once you've found a cost effective medication, call your gasteroenteroligist for a new prescription.

5.) Mail order prescriptions may have lower copays when you get a 90 day supply, instead of a 30 day supply. Check with your health insurance and ask about mail order options.

Post Edited (iPoop) : 1/9/2018 11:11:41 AM (GMT-7)

Forum Moderator

Date Joined Aug 2012
Total Posts : 13200
   Posted 9/20/2017 8:19 AM (GMT -6)   
Entyvio risks versus benefits

We're all initially concerned when considering a new class of medications, myself included. What helped me was taking a look at the actual odds of risks versus benefits. The majority of UC patients who take entyvio do not experience side effects from it as the benefit far outweighs the risk of taking it. The odds of entyvio helping to improve your UC symptoms are about 65%. Entyvio should be inherently safer than other 100% systematic biologics (like remicade, humira, and simponi) are, as Entyvio is a Site-Specific-Immunomodulator that targets just the gastero-intestinal tract. Safer as you're only suppressing the immune system within a specific region of your body, it is less likely that you'd get infections elsewhere within your body as would be the case with systematic Remicade.

What kind of side effects could you get and what are the odds? Everything carries a small degree of risk and it's good to understand what that's all about. Let's delve a little deeper into risk.

"about 4% of patients experience infusion-related reactions either at the time you are receiving your medication, or within 48 hours of it." Infusion reactions are headaches, raised body temperature, flushing of the face, fatigue and other things which are generally quite minor. Infusion-reactions are often prevented by taking tylenol and claritin/benadryl prior to the infusion itself.

"In clinical studies, approximately 25% of patients treated with Entyvio developed an upper respiratory tract infection at some point. These include bronchitis (inflammation of the airways), influenza (flu),
nasopharyngitis (inflammation of the nose and throat) and sinusitis (inflammation of the sinuses)."
Entyvio is lowering your body's ability to fight off infections within the GI-tract, so you are going to be more prone to them as a consequence. It's the kind of thing that if you suspect you have an infection needing antibiotics then you should seek out treatment earlier, and sooner. GI-tract infections will develop faster and the symptoms will be worse while on Entyvio. As a general rule with all biologics they say you might, as an example, get an extra flu/cold a year than your normal. So, you're not super prone to them, by any means. Rather it is just an increased risk and something to be cognoscente of, and remain vigilant of while on it.

Entyvio does include a black box warning for PML, despite it never occurring to anyone taking that medication during the clinical trials or since it has been prescribed to patients. Entyvio was specifically designed to not cause PML, as predecessor medications within its class had done by using a different method of action.

Source: www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Risk-management-plan_summary/human/002782/WC500163289.pdf

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Date Joined Jan 2011
Total Posts : 2172
   Posted 1/4/2018 4:53 PM (GMT -6)   
UC Diet:

59, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D

"Fly under the radar" - Dad -

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Date Joined Aug 2012
Total Posts : 13200
   Posted 1/18/2018 8:25 AM (GMT -6)   
Joint pain (Arthritis) and UC:

www.crohnscolitisfoundation.org said...
Arthritis, or inflammation (pain with swelling) of the joints, is the most common extraintestinal complication of IBD. It may affect as many as 30% of people with Crohn’s disease or ulcerative colitis. Although arthritis is typically associated with advancing age, in IBD it often strikes younger patients as well. In addition to joint pain, arthritis also causes swelling of the joints and a reduction in flexibility.

Source: www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

Management of Arthritis in Patients with Inflammatory Bowel Disease

www.ncbi.nlm.nih.gov said...
G&H How frequently does arthritis occur in patients with inflammatory bowel disease?

TRO There are 2 types of joint problems that can occur in patients with inflammatory bowel disease (IBD): arthritis, which is inflammation, and arthralgia, which is pain without inflammation. Arthralgia is more common among patients with IBD, occurring in 40-50% of patients, which is a rate similar to that of the general population; arthritis occurs in approximately 15—20% of Crohn's disease (CD) patients and approximately 10% of ulcerative colitis (UC) patients at some stage during their disease course.

G&H What types of arthritis are most common in patients with IBD?

TRO Approximately 60—70% of the arthritis seen in IBD patients is peripheral arthritis, in which the large joints are affected, and this arthritis is typically an oligoarthritis, meaning that fewer than 5 joints are affected. The most commonly affected joints are the knees, ankles, wrists, elbows, and hips. A smaller proportion of IBD patients have symmetrical polyarthritis, which has a presentation similar to that of rheumatoid arthritis; these patients can develop inflammation in any joints, but typically the small joints of the hands are affected. Finally, 1—6% of all IBD patients develop ankylosing spondylitis, which is a progressive inflammatory arthropathy affecting the sacroiliac joints and the spine. These patients develop gradual fusion of the spine over a period of time. While large joint arthritis is nearly always associated with active IBD, ankylosing spondylitis and small joint polyarthritis can flare up independently of the patient's IBD.

G&H What mechanism underlies the development of arthritis in patients with IBD?

TRO The development of arthritis in these patients definitely involves a genetic component, which probably makes patients susceptible to luminal microbiota that can trigger arthritis. The arthritis associated with IBD is classified as a seronegative spondyloarthropathy; all the conditions in this group involve the development of arthritis without the presence of autoantibodies, and all these conditions are associated with an increased risk of developing ankylosing spondylitis. Ankylosing spon-dylitis is known to be strongly associated with HLA-B27, which is a particular variant of an HLA gene that controls the immune response, and peripheral arthritis in IBD patients is also associated with HLA-B27, although less strongly; this common association probably accounts for the increase in ankylosing spondylitis among patients with seronegative spondyloarthropathy. However, peripheral arthritis in IBD patients has an even stronger association with a rare HLA allele called HLA-DR103. This allele is present in approximately 35% of patients with large joint arthritis and in up to 65% of patients who have more than 1 episode of large joint arthritis. In comparison, this allele occurs in only 1—3% of the general population. How this genetic association results in arthritis among IBD patients is largely speculation.
Source: /www.ncbi.nlm.nih.gov/pmc/articles/PMC3424429/

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Date Joined Dec 2008
Total Posts : 16719
   Posted 5/3/2018 1:39 PM (GMT -6)   
  • Apriso® - Eudragit-L (pH6) coating of 5-ASA-polymer coated beads, small bowel and colonic release
  • Asacol® - Eudragit-S coating that releases at pH7, ileocolonic release - replaced with delzicol.
  • Asacol-HD® - Eudragit-S and Eudragit-L coating, ileocolonic release
  • Canasa® suppositories – Topical rectal release
  • Colazal® - Diazo bond to inert polymer, colonic release
  • Delzicol® - Delayed release capsules 400 mg. Intended to replace Asacol (mesalamine) delayed release tablets 400 mg. Delzicol includes dibutyl sebacate (DBS) instead of DBP as the plasticizer in its enteric coating.
  • Lialda® - Eudragit-S coating of metallomatrix 5-ASA, ileocolonic release
  • Olsalazine (Dipentum®) - diazo bond of two 5-ASAs, colonic release
  • Pentasa® - Ethylcellulose/5-ASA beads, small bowel and colonic release
  • Rowasa®, sfRowasa®, or Melamine Rectal Suspension (generic) enemas – Topical rectosigmoid releases (sfRowasa is sulfate free for those with sulfa allergies)
  • Sulfasalazine (generic) – Diazo bond with sulfapyradine, colonic release.

What does that mean?

Azo-bonded prodrugs
In these formulations, mesalazine is synthesized as a prodrug, binding via an azo bond to either a transporter molecule or another mesalazine molecule. This prevents absorption of the drug in the upper gastrointestinal tract. The azo bond is subsequently cleaved by bacteria containing azoreductase in the colon, releasing the active mesalazine component

pH dependent formulations
Other mesalazine preparations encapsulate the active drug in an enteric coat in order to control the site of drug release. The enteric coating consists of a resin film designed to release mesalazine only at a designated pH, thereby preventing premature disintegration in the acidic environment of the stomach and proximal small bowel. Asacol® are manufactured with a methacrylate copolymer coating, Eudragit-S. This coating dissolves at pH ≥ 7, releasing the active drug in the terminal ileum and colon.

Time dependent formulations
Pentasa® adopts an alternative method of drug delivery consisting of microspheres of mesalazine encapsulated within an ethylcellulose semi-permeable membrane. This structure allows time and moisture dependent release of the active drug, independent of the luminal pH. Mesalazine is theoretically distributed gradually throughout the gastrointestinal tract from the duodenum to the rectum.

Multi-matrix system
Mezavant® (Lialda®) is a once daily formulation of mesalazine which adopts a multi-matrix system (MMX). Mesalazine is incorporated into a lipophilic matrix which is in turn dispersed within a hydrophilic matrix. The tablet is enterically coated and dissolves at pH ≥ 7, in the terminal ileum. The hydrophilic matrix is then exposed to intestinal fluid and swells to form a viscous gel mass. This viscous gel potentiates slow diffusion of the active drug from the tablet core and thereby enabling slow controlled release of mesalazine throughout the entire length of the colon.


Post Edited By Moderator (iPoop) : 8/15/2018 6:41:12 AM (GMT-6)

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