HealingWell
Search Close Search
☰

Diagnosed today with ulcerative proctitis

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/7/2011 2:37 AM (GMT 0)
Hi everyone


Today I was diagnosed with ulcerative proctitis after having suffered through digestive problems for the past 5 months or so. I've had digestive problems all my life but my doctor always diagnosed it as IBS. So maybe this is something new, or maybe I've had it all along? I'm not really sure.

But I guess that's not important now. I wanted to ask if anyone underwent any dietary changes to manage their proctitis. I really really hate to sound like a baby, but while my diet may not be the healthiest, it's tasty and provides me a lot of protein (which I kinda need given my small stature). I'm also VERY finicky about what foods taste good or don't, which is part of why my diet is the way it is. I also think I'm slightly lactose intolerant. I can have milk, but beyond a certain point it'll cause me stomach problems.

I'm fairy sure that there's no "cure" for proctitis, but I'm hoping that I can bring it to remission with medicines and not have to drastically change my diet.

Has this worked for you, or were you forced to make dietary changes? What dietary changes would people recommend I make?

I really like my bagels (natural for a jew tongue) and I drink coke regularly. I also eat a lot of processed foods I think. I'm not sure if my UP was something that built up after years of being unhealthy or if it was completely unrelated and something that would've happened anyway. In the limited research I've done since I got home from the hospital, the websites I've found have said that diet really has nothing to do with causing the disease, or relieving symptoms. But then again, I've seen other forums where people made dietary changes and that worked. And then I've seen others where people got relief just from prescribed medications. So .... if anyone had any advice, I'd love to hear it.

Thank you for the information.

-Marty
Posted 10/7/2011 11:17 AM (GMT 0)
I ate healthy and worked out 5 days a week when i was diagnosed with UP a few years back. Trust me, diet/life style has nothing to do with it.
Posted 10/7/2011 11:41 AM (GMT 0)
I don't think diet leads to UC, but it can affect symptoms. If I were to spend a few weeks eating nothing but fast food I would be on the toilet all day.

Diet and lifestyle affect your body without any argument. It does not hurt to try and keep that aspect of your life as good as you can. UC puts enough stress on you as is, without adding more through poor lifestyle. Tweak diet as you learn.
Posted 10/7/2011 12:08 PM (GMT 0)
Well, I was diagnosed with pancolitis, which theoretically is "worse" than proctitis as pancolitis affects the entire colon, and I have not had to change my diet. When I was flaring, I kept my diet pretty bland and blah, just to help make me more comfortable, but after I gained remission, I started eating as I had before. My diet is relatively healthy and I avoid all MSG and artificial sweetners, as they have always given me diarrhea. I've been in remission for almost two years now, just using the meds in my signature.

So I guess I think that you should give the meds a chance to work and if you're still not in a really solid remission, start trying other things, one of which may be diet modification. It does make a difference for some folks with UC, but not everyone needs to modify their diet to be in remission.
Posted 10/7/2011 12:25 PM (GMT 0)
Martman,

Welcome to the forum.

Sorry about your recent UP diagnosis.

Even though my GI told me diet does not affect UC, IMO and experience, it does make a big difference.


I also think I'm slightly lactose intolerant. I can have milk, but beyond a certain point it'll cause me stomach problems.

I've never heard of that before; you're either lactose intolerant or not, so to me it's strange that you can handle milk but not other milk products, especially as milk is the hardest product on the stomach for those who are lactose intolerant.

I drink coke regularly. I also eat a lot of processed foods I think.

Coke contains High Fructose Corn Syrup (HFCS) which many of us UCers have problems with. I know you can purchase Coke which is made in Mexico and does NOT contain HFCS.

Processed foods generally contain alot of salt and nitrates. Also not good for you.

I guess if you're suffering enough with your symptoms that might prompt you to try some dietary changes and you'll see if it makes any changes in how you feel.

I can tell you that many of us, me included, do much better on SCD - specific carbohydrate diet  (you can google it), but it's a tough diet, so perhaps in your case you could try: going dairy free, wheat free, and gluten free and see how that affects you.  Also, start a food journal and then you can really start to connect the dots.

Also, you didn't mention which drugs you are on?

Are you on any rectal meds - that would be very helpful to you?

 

Posted 10/7/2011 1:39 PM (GMT 0)
InSoFla, lactose intolerance can and usually is a relative thing. Our bodies produce lactase to digest the lactose sugar, and sometimes we have more lactase than other times. For example, you can drink a glass of milk on an empty stomach and if you're lactose intolerant (to any degree) you will really find out fast. On the other hand, if you're drinking that milk on a full stomach it might not make a difference.

Marty, I'm sorry you have had this diagnosis. My trip down the IBD lane started with a UP diagnosis. The healing process begins when you start to treat the inflammation with rectal meds. You will learn over time what works and what doesn't work for you diet wise. For starters, focus on the meds. But in general, I think you know that eating a lot of processed foods isn't good for you whether or not you have IBD. So this is an opportunity for you to examine dietary options and see what might work for you.
Posted 10/7/2011 8:00 PM (GMT 0)
Diet does have a role in managing disease (any disease). You do want to try and eat more healthy - less processed foods (cut them out if you can), more fruits/veggies (no raw while flaring of course), less carbs (harder to digest), a good amount of fiber (again, when not flaring), etc. That's not to say you have to give up everything you love entirely (unless it's been causing severe symptoms), just try and cut out the bad as much as possible and maybe allow yourself a small treat here and there when you're symptom free. If you can eventually cut out the bad source entirely, all the better... But I think it's reasonable to understand that we're all human and have our weaknesses.

I think staying away from lactose is generally wise and most people with UC don't tend to tolerate dairy well anyway. I had no issues giving up dairy and found that I like the taste of the alternatives more anyway. If I may suggest trying Almond milk in particular... LOVE that stuff! Goes well in lots of things :)

Have you gone to see a nutritionist at all? They might be able to help point you in a good direction as far as diet goes. You already know that diet is not necessarily a cure-all, but it could help you feel much better nonetheless.
Posted 10/7/2011 10:12 PM (GMT 0)
When you have a proctitis flare up, you don't want your BMs too hard because it will be too painful. Therefore, keep the digestive system regular and certain diets high in fiber, (but not really rough), can help that.
Posted 10/8/2011 1:51 AM (GMT 0)
I was prescribed a suppository, but haven't tried it out yet. Probably tomorrow. I think God invented suppositories to make sure our asses don't go hungry.

I plan on talking to my GE doc next week to ask about diet, the drugs he gave me, and other stuff related to UP/UC. Hopefully this won't require a huge change in diet, but knowing my luck .......
Posted 10/8/2011 2:01 AM (GMT 0)
Why haven't you used the suppositories (which I'm guessing are Canasa)? I'm not trying to be mean, but now isn't the time to bury your head in the sand and hope this goes away. The suppositories are safe and effective, and could keep the disease from progressing.
Posted 10/8/2011 2:04 AM (GMT 0)
Oh no. I'm not expecting this to go away on its own, and for the $500 I paid for Canasa, I'm definitely using it. HA! I just wanted to spend the day researching my condition and the medication before I use it. :)
Posted 10/8/2011 10:19 AM (GMT 0)
kazbern,

Thanks for pointing that out - I never realized that. I always thought it was an all or nothing kind of thing - like being a little bit pregnant, lol.

Posted 10/8/2011 10:25 AM (GMT 0)
Martman,

I would strongly urge you to use the suppositories - they're much safer than the oral meds, and they work great, especially for UP.

Don't forget to buy some lubricant, and put some on the tip of the suppository before inserting. That will make it a little easier. In case they didn't explain how to best use it:

you lay on your left side with left leg straight, and right leg bent at knee, and insert. I usually stay that way for about 10 min to make sure it'll stay up there. But I'm sure some the veterans here may have some other helpful tips for you too. :-)

I would be curious to see what your doc says about the diet, drugs, etc...

Posted 10/9/2011 2:20 PM (GMT 0)
So last night I used the suppository. I have to ask:

1. How far are you suppose to push it in? I tried not to push it in too far, but then it came out a little bit so I had to push it in a bit further.

2. I don't really feel any different today than I did yesterday before using the suppository. Is it something that you have to use it a few times (or for awhile) before it really starts to work? Am I suppose to feel "different" somehow?
Posted 10/9/2011 2:34 PM (GMT 0)
It's going to be a few days before you see significant results.
Posted 10/9/2011 3:04 PM (GMT 0)
Hey Marty,

I was diagnosed with UC back in the late 1990's and now I am not sure if I truly have "traditonal UC/UP". I took the standard meds for nine years and started devloping worsening GI symptoms, as well as neuro symptoms (nocturnal myoclonus). My story is on another thread (just recently posted). I had stop taking my GI meds in 2009, as I discovered I was reacting to salicylates and preservatives (meds, foods, cosmetics, chemicals, colognes). I had to find a doc who would prescribe a compounded topical GI medication that would be effective if needed.
I also had a doc run a blood lab by Promethius Labs that revealed I was negative for IBD! I had to drastically change my diet, due to my inability to take Asacol, as well as the fact that I was reacting to almost everything (triggering colitis symptoms). Salicylate intolerance can manifest as colitis.

It has taken me two years to finally find a limited but decent diet of 25-30 whole foods free of preservatives, gluten, dairy (except butter), no MSG or nitrates, no white rice.
I am not jewish (but my father was)......I eat Empire brand turkey (frozen turkey breast), preservative free chicken (skin off), wild sockeye salmon (no preservatives), filet.steak on occasion, NO hard meats such as hamburger). I can tolerate green peas, soft lettuces, fresh/whole acorn squash, butternut squash (I make a soup with this), Meyenburg lowfat goat's milk (cook and bake with this). I make cakes with Twin Valley GF Sorghum Flour (I order this) and Bob's GF white rice flour I make sauces with Bob's arrowroot ( GF) and you can bake with it. Bob's GF oats with frozen Mango for breakfast......I can only eat a GF millet, preservatve free bread I order from a bakery in Deland Florida. Stop all caffeine but a wonderful decaf coffee is Mount Hagen Organic Cafe (freeze dried) ....you can find it at whole foods. Stop chocolate and reduce sugar drasticallly. I eat baking potatoes (peel off) and plum tomatoes (in small amounts). Golden del, apples (peel off) and banana (1-4 ties per week). Plainville Farms makes a fabulous oven roasted turkey (deli Meat) found at Whole Foods.
I hope this helps you!

p.s. I started taking Dimethyl glycine 2.5 months ago and have been in remission! Glycine helps to detox chemicals and salicylates from the liver. It also boosts the immune system. I also taking numerous supplements including quality probiotics.
Posted 10/9/2011 3:07 PM (GMT 0)
BTW...I just found out I have Lyme Disease after suffering from horrific symptoms for the past five years. if you have not been tested for Lyme, Find a doctor who will work with you on ordering the Igenex panel. The regular conventional Lyme tests are HIGHLY INACCURATE.
I believe anyone with IBD or any autoimmune disorder should be tested for Lyme. Lyme may have caused my proctitis or worsened it!
Posted 10/9/2011 3:37 PM (GMT 0)
Hi Siesta

Mind if I ask you a few questions? Are you saying that the IBD could be caused BY lyme disease, or vice versa? I looked at the symptoms of lyme on the Medline Plus website, and I have had full body itching that started like a month ago, and also have had intermittent episodes of headaches, but that's about it. The symptoms of my proctitis started in May, so, given that sequence, do you think there could be a correlation?

I read there are other symptoms like chills, a "bullseye" looking rash on your body, etc., and I don't have those. So can you have lyme with just some of those symptoms?
✚ New Topic ✚ Reply