Advice on first GI consult please.....Prednisone?

Finally got to see a GI the other day and he confirmed a diagnosis of Ulcerative Proctitus/Colitis with extensive mild & moderate mixed inflammation up through to the beginning of the mid sigmoid. He was basing this diagnosis off a colonoscopy I had done 5 weeks ago. He hadn’t read it until I was with him and I must admit I was a little pissed as he just skimmed over it and told me minimal information. He did examine me and was concerned at the level of inflammation still present in my rectum after the treatment I’ve been on.

I’d love some advice from you guy’s on what he’s suggested and put me on.

Firstly here’s a little snap shot of my last few months of symptoms and treatment -

Dec 2011, bleeding, mucus, diarrhea, fatigue, and going to the toilet up to 20 times a day. Started 4000mg Pentasa per day early Jan with some relief mainly less urgency and incontinence. Added Colifoam rectal foam four weeks ago nightly noticing some relief particularly in the morning but still bleeding and infrequent urgency, some formed BM‘s but still far from right, very tied and if I ate anything up setting I would become unwell and bleeding seemed to be increasing. Iron levels fine.

Now, GI has prescribed 40g Prednisone, two months wkly tapering, continue full dose oral Pentasa , and optional Mesalazine Nightly enema. I asked for the enema‘s and he prescribed them but didn’t say that much more about them or how to use them. I figure I could start taking them now or wait until after the course of Prednisone?? It is his hope that the Prednisone will kick it and then be maintained by the oral and rectal Mesalzine after the Pred. Also, I asked him if I should stop the Colifoam cold turkey but he felt the Prednisone would take over?

Thoughts and suggestions please J

Post Edited (Labyrinth) : 4/7/2012 6:28:07 AM (GMT-6)

Labyrinth, the prednisone is used, like you thought, to induce remission rather quickly. And yes, you can stop the cortifoam and I think you'll see much better results with the mesalamine enema. I don't know what the problem is that some GIs have with enemas. It's their most powerful safe tool. If you can ask the GI why s/he thinks pred is necessary now, you might have a reason to choose NOT to take it.

Anyway, ItsAlwaysSomething makes good points about probiotics - from what I've read here there are sigificant benefits for UC patients in using probiotics.

Labyrinth,

In my experience with GIs, I agree with ItsAlwaysSomething - they are so quick to push prednisone and other drugs into you, yet don't even bother mentioning diet, probiotics, other supplements. Why do you think that is?  Because it's not in their best interest to. The truth is that they are in bed with Big Pharma.

Anyway, IMO there are so many factors involved in making symptoms of UC get better: diet, probiotics, supplements.

I'll share my list with you:

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: http://cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine powder 5 grams - for colonic repair. 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 alot.

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. d 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, 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.

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...

http://wellapps.com/products

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.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://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.

13) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

14) Astaxanthin is a great anti-inflammatory

I think the more information you can have on UC and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()

 

 

What do you think?

Good luck, and I hope you start to feel better soon.

Let us know how we can help you.

Dear Labyrinth,

GI docs are specialist-plumbers and diagnosticians. They make their living doing procedures and fixing the fixable with surgery and the newest Rx being promoted by pharmaceutical reps. Their training & practice skipped over managing chronic illness. Lucky if you find one with compassionate bedside manner. They prefer to diagnose and send patients back to their PCP with a treatment plan. Prednisone is a quick fix for the GI - they don't have to see you in the office or take your calls every week.

Prednisone is an important life-saving drug but gets a bad rap for being used in the outpatient setting for quick fixes of this, that and a whole lot of other menacing problems for humans and animals. Without Prednisone, severe cases of UC at diagnosis with hospital admission have a much higher mortality rate.

In the outpatient management of UC there is an algorithm of treatment options (codified in the medical literature) to improve the standard of care for left-sided, proctosigmoiditis and proctitis. First tier or line of treatment has multiple routes of treatment options, based on symptoms and response. Prednisone is a tried and true option if all other routes have failed and the doctor and patient 'want' rapid and complete remission of all symptoms.

However, reading the topics in this UC forum will confirm that taking prednisone comes with a lot of risks. Each person has to do the research, get educated, learn to negotiate each step and every change of course; Weigh the benefits and risks. Managing a chronic illness is not simple, and there are no real quick fixes without a whole lot of risks.

There are a few true miraculous remissions. But there also is a plethora of claims to knowing the cure for UC; the internet is full of testimonials to sell products and information. Personally, I believe in the efficacy of complementary approaches that are validated using treatment and control groups. Almost everyone on this forum list the dietary practices along with herbs and supplements with pharmaceutical medications. But that is what works for them currently and is within their financial capacity.

Although UC is a distinct diagnosable disease, it can be helpful to think of it as a syndrome. Medical science does not yet know the cause (genes, rogue immune cells, pathogenic microbes). The natural course of UC is different and unique to each individual. It is unpredictable with flares and remission of varying severity. The course of treatment is aimed at the presenting objective symptoms. Patients can be persistent, insistent and learn to negotiate the what & how of treatment of both subjective and objective symptoms. This applies to defining the goal of treatment and what criteria are used to measure the quality of life that is acceptable. For every choice - know the risks, especially with prednisone.

Wishing you the smoothest route to remission,
Denny Rae

DennyRay, Kazbern, thank you for your thoughtful feedback. I have lots to think about and will continue resurching and asking questions. It's reasuring knowing i can come here to read others experiences. im normally a very good advocate for myself but feel i a little between a rock and a hard place living in a small town relying on a visiting GI - i think long term, and when planing for a baby really gets into gear we may look at going to a main centre, as im not sure this GI will be open to the complementary approach (I like that way of thinking Kazbern :)

Again thank you it means alot

I Agree completly with this statement from denny rae! "Although UC is a distinct diagnosable disease, it can be helpful to think of it as a syndrome. Medical science does not yet know the cause (genes, rogue immune cells, pathogenic microbes). The natural course of UC is different and unique to each individual. It is unpredictable with flares and remission of varying severity. The course of treatment is aimed at the presenting objective symptoms. Patients can be persistent, insistent and learn to negotiate the what & how of treatment of both subjective and objective symptoms. This applies to defining the goal of treatment and what criteria are used to measure the quality of life that is acceptable. "

Agreed!

On my initial diagnosis (ulcerative proctosigmoiditis), it was quite tricky to get my very first flare under control - it was a combo of Asacol pills, mesalamine enemas at night, and cortifoam in the mornings that finally did it. But for the seventeen years that followed (when my UC was limited to the bottom twelve inches), nightly mesalamine enemas for a couple weeks was all I needed to get me into remission every time, and Asacol alone was my maintenance drug. Oh, those were the good ol' days!! Now I am dealing with pancolitis, which is a whole different monster.

Good luck, and make fast friends with those enemas!

Dear Labyrinth,

It's not to late to short circuit the planned course of Prednisone. You've been on it for four days. If you want to stop, now is the time. However, even short "bursts" of prednisone need a brief taper - so proceed with your doctor's collaboration.

-Denny Rae