Ulcerative Proctitis

What are your up symptoms? What medication are you on?

Colitis doesn't turn into cd.

What meds are you taking?

     When you find out, let me know, will ya?  I suffered with UP for twelve years.  The ulcerations NEVER traveled further into my colon.  This may be due to the Colazal I took for ten years, who knows?  Anyway, I had surgery.  The surgeon told me my rectum was badly diseased, but my colon only had minor diverticulosis.

     Somedude, I hear ya!  Believe me, I tried sweet talking my surgeon into just taking the rectum, but no go.  I suppose they are familiar with far too many cases of the ulcerations popping up in the colon in the past when, perhaps, they just took the rectum.  I can remember looking at the results of my colonoscopies...rectum...a HORROR...colon, not bad at all...it's really a shame.

You are very lucky that your disease hasn't progressed in so many years,and occasional bleeding is your only symptom. Good luck on the scd,I have been on it for 1.5 years.

 

It's not going to be stopped or reversed, but for many it can be controlled.

Hi InSoFla,

Here is "my story". I was diagnosed with UP when I was 19 (21 years ago now). I was on those sulphur tablets and foam (maybe salofalk foam?). That was fine but I had to have about 9 to 12 tablets a day to keep it in check and the foam daily. This went on until a I had a major flare in 2006 (I seem to have a flare every 12 months which lasts 1 to 3 months historically). My specialist then put me on Salofalk Enemas. This drug was and is a Godsend. It manages the UP very well to this day.

During flare up I usually have 1 to 2 enemas a day. When not in flare up one enema lasted 3 days before I saw any bleeding. In 2009 I wanted to lose weight and went on a low carb diet. I noticed an immediate improvement in my disease but didn't put two-and-two together yet. After I had slimmed down and was happy with my weight I started letting my carb intake sit at about 100g/day but this was mostly wheat/chocolate based. I almost immediately went into flare-up again which lasted about 3 months.

I then read the book Wheat Belly and decided to go wheat free (this was 1st of October 2011). Wow, what an improvement. I went from 1 enema/day to 1 enema/week on average (sometimes hitting 10, 11 or 12 days). I haven't touched wheat since.

After seeing such a dramatic improvement I figured it was only a matter of time and I could eradicate this disease through diet instead of just managing it. But since October 2011 I have seen no further improvement through diet modification. I switched to paleo diet about 6 months ago and though I had hoped this would alleviate the symptoms further it has not (though I eat paleo just because its so much healthier). My carb intake is closer to 10% of my total calories now and its a lot healthier. Final things I eliminated before switching to SCD was chocolate and diet coke.

I started SCD 7 weeks ago and I have seen my bleeding worsen but my other symptoms (bloating, discomfort, nightly discharge and gas) all significantly improve. When I say my bleeding has worsened its not more blood its just more frequent.

I am just at a loss why symptoms would improve but bleeding would increase?

I agree that I prefer paleo over SCD. I actually find SCD more carby so use both exclusive lists to eat now.

Post Edited (solomani) : 12/1/2012 7:10:22 PM (GMT-7)

Solomani,

I would suggest you cut out all dairy for now, yes even the SCD legal yogurt, and see if it changes your symptoms at all. But don't just try it for a day or two, try it for a good week or so.

As far as probiotics, you could add VSL #3 and s. boulaardi to your routine, no?

Can you get your GI to prescribe VSL #3DS for you?

The sachets are very effective. Ask him to prescribe it for you at: 4 per day,this way it will give you some leaway - when you're flaring you can take 4, when you're not, you can drop down to 1-2.

What do you think?

Solomani,

Good call on cutting out all dairy.

As far as the VSL 3, I would definitely recommend the sachets over the capsules because they are just so much more effective IMO.

S.Boulaardi you can buy on amazon, a bottle of 120 capsules, pretty cheaply, and make sure you open up the 2 capsules and pour out its contents in the water.

I make a daily cocktail: VSL + s. Boulaardi + slippery elm powder all in a little water. While flaring, I had this cocktail after each meal, now I just have it after dinner.

What do you think?

Solomani,

IMO, capsules are one more thing the stomach has to break down, and in that capacity less is better.

Therefore when given a choice, I always take the powdered form (truth be told I also hate to swallow pills, they get stuck in my throat and I choke).

So, I open the s. boulaardi capsules and add them (the probiotic granules) to my "cocktail" of slippery elm powder + sachets of VSL (also powder). It all works well together.

 

No, it's VERY good and VERY effective, as is slippery elm powder - which I believe is also not SCD legal, but it works too!